Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
One of the first things my LTD insurance company did was to make me get a case worker at my State’s Division of the Blind. I’d done this over a decade before and I didn’t think they had anything new to tell me. DOB came out to check on me and determined that I already had the coping skills I needed. They retested me on my cane use and were satisfied I could get around on my own. They did suggest I try to get disabled transportation services from the city. When I’d last asked about disabled transportation in the previous decade I’d been told I couldn’t apply because of my employment. Something had changed.
So I went ahead and applied. My case worker told me that she’d never had an RP patient get approved for disabled transportation. So I did what I’d always done for work, I put together a Power Point presentation. It documented the intersections I had to cross, the distances I had to walk. The meeting went well and I was approved. Afterwards, I gave my Power Point deck to my case worker to help her other clients.
The insurance company gave up trying to force me back into temp job at the bank and shifted their focus to getting me into retraining. I resisted this because it seemed like they were just trying to duck their fiduciary duty. They didn’t want to actually evaluate my claim before they booted me out the door.
I don’t believe the insurance company was used to working with someone who wasn’t intimidated by them. They were used to people making claims bending over backwards to please them. Many of their requests didn’t seem legal. I simply refused to give into them if I thought their requests were unreasonable. The first suck request was that they wanted access to all of my health information, not just my eye doctors.
After searching on the internet, I figured out that my insurance company was looking for inculpatory information. Not information I’d lied about but information they could use to try and deny my claim. They wanted to know if I’d had a physical or if I had a therapist. If they could prove my disability was all in my head then they would only have to pay me for two years not twenty.
My response to these requests was two fold - 1)what part of the contract you have with my employer allows you access to all of my medical records? Can you send that request to me in writing? 2)I have HIPPA rights and no, you can’t have those documents.
To be clear, I happily sent all of my eye doctor’s notes over to my insurance company for review. But I didn’t want to allow them to go on a fishing expedition through my medical history. They weren’t trust worthy. They didn’t have my best interests in mind. If I followed their process they’d find a way to drop me. I had to stand up for myself and demand they actually evaluate my medical claim. They eventually stopped asking for my medical records unrelated to RP. And they never did send those request in writing. But they didn’t give up that easily.
Part 21 can be found here.
Thursday, December 31, 2015
Losing Well Part 19
Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
Pulling the tigger on disability was difficult. I’d always defined myself by being better than my sighted rivals. Admiring that I could no longer compete was the worst symptom of RP I’d ever faced. It forced me to become a new person. A more realistic person.
For years I’d defined myself by my job. For years I was the Vice President, the manager, the boss. Now I was just Dad. I went from having a team of people do what I told them to working for my two kids. Over time I came to see my new role as just as important. Just as rewarding. At times, just as frustrating.
The upshot of going on disability was that I lost forty pounds in six months. I was under so much stress I couldn’t see how my job was killing me. Keeping up with the sighted world was killing me. It was time for a change.
The process of going onto disability was difficult. I had a lot of phone calls with my employer’s insurance company. They felt like I could go get another job at the bank. But they’d only guarantee my employment for 30 days while I looked for another job. It was hard not to see this a cynical ploy to get rid of the severely disabled. I declined the job search and moved forward on my disability claim.
I told my insurance company the truth; I could run one project at a time but not ten. I worked on a job that was the visual olympics. I told them that if they could get me a job that would allow me to run one project at a time, I’d go for it. They never got back to me because that job doesn’t exist.
The insurance company made my long suffering eye doctor fill out a ton of forms. They made him repeat over and over that I had RP and there was no real treatment or surgery and that I was legally blind. The insurance company didn’t ever seem to believe him or me. When I made the call to go out on disability, it was the end of a long battle. My insurance company didn’t see it that way. They thought I could do more or try harder. They just didn’t want to pay out my salary over the next twenty years.
When I’d found out about RP back in 1999, I’d contacted my employer and increased my insurance coverage. My employer offered, for an increased premium, to bump their disability coverage to 60% of my salary. For an additional fee, they included bonuses. That’s the coverage I had when I went on disability. The coverage I’d paid them for. For over a decade. It must have been too much money for the insurance company. I crossed some threshold. I was their new loss leader and they needed to move me off their books. My battle had just begun.
Part 20 can be found here.
December 2015
Pulling the tigger on disability was difficult. I’d always defined myself by being better than my sighted rivals. Admiring that I could no longer compete was the worst symptom of RP I’d ever faced. It forced me to become a new person. A more realistic person.
For years I’d defined myself by my job. For years I was the Vice President, the manager, the boss. Now I was just Dad. I went from having a team of people do what I told them to working for my two kids. Over time I came to see my new role as just as important. Just as rewarding. At times, just as frustrating.
The upshot of going on disability was that I lost forty pounds in six months. I was under so much stress I couldn’t see how my job was killing me. Keeping up with the sighted world was killing me. It was time for a change.
The process of going onto disability was difficult. I had a lot of phone calls with my employer’s insurance company. They felt like I could go get another job at the bank. But they’d only guarantee my employment for 30 days while I looked for another job. It was hard not to see this a cynical ploy to get rid of the severely disabled. I declined the job search and moved forward on my disability claim.
I told my insurance company the truth; I could run one project at a time but not ten. I worked on a job that was the visual olympics. I told them that if they could get me a job that would allow me to run one project at a time, I’d go for it. They never got back to me because that job doesn’t exist.
The insurance company made my long suffering eye doctor fill out a ton of forms. They made him repeat over and over that I had RP and there was no real treatment or surgery and that I was legally blind. The insurance company didn’t ever seem to believe him or me. When I made the call to go out on disability, it was the end of a long battle. My insurance company didn’t see it that way. They thought I could do more or try harder. They just didn’t want to pay out my salary over the next twenty years.
When I’d found out about RP back in 1999, I’d contacted my employer and increased my insurance coverage. My employer offered, for an increased premium, to bump their disability coverage to 60% of my salary. For an additional fee, they included bonuses. That’s the coverage I had when I went on disability. The coverage I’d paid them for. For over a decade. It must have been too much money for the insurance company. I crossed some threshold. I was their new loss leader and they needed to move me off their books. My battle had just begun.
Part 20 can be found here.
Tuesday, December 29, 2015
Losing Well Part 18
Continuation of my series, Losing Well. Part 1 can be found here.
December 2012
2012 was a year of transition. Feeling that my vision was running out, I convinced my brother to take me to Europe for the first time. It was amazing. I did all the typical tourist things. We went to the Eye, the Tower of London, the Tower Bridge. We eventually got out of the city and went to Stonehenge, Oxford and Dover. Then we took the train to Paris and I got to go to the top of the Eiffel Tower.
After I got home, my eyes continued to get blurry. My job was very visual. I did budgets in Excel, I put together Power Point presentations for upper management. I read technical documents to estimate project costs. And then I’d be instant messaging three or four people at all times. Plus email. While on a conference call. All of this happened at the same time. I was a multitasking machine. But I couldn’t keep up.
I realized I needed help when I went to a Fourth of July celebration and couldn’t focus on the fireworks. It was like I had cataracts all over. The world was a blurry fog.
In July, I went to see my retina specialist about the blurry vision. I assumed he’d tell me that I needed another YAG surgery. What he told me shocked me. He told me there was nothing to be done. I’d reached end stage of RP. He told me to get my affairs in order while I could.
With my doctor’s blessing I went for a second opinion. My surgeon agreed with my retina specialist; there was nothing to be done.
9 July 2012
I hate visual field tests. Reminds me of all that I’ve lost.
18 August 2012
Just a sprain
19 August 2012
I'm bed ridden and the cable is out. Curse you Time Warner!
20 August 2012
Big thank you to Kate for taking care of me while I've been laid up. For good times and the bad times are not just words.
21 August 2012
Starting to wonder if I'm the physical humor comic relief for a secretly recorded sitcom.
22 August 2012
My foot fits back into my shoe. Saturday and Sunday I wondered if that would ever happen again.
December 2015
In August, I missed a step and severely injured my ankle. I was bed ridden for several days. It was a wakeup call that I needed to take my disability more seriously. I made an appointment to see a disability lawyer and he convinced me it was time to start the process. So on a morning in September, I called HR and went on leave. It was one of the hardest calls I’ve ever made. It violated a core part of my soul to say I couldn’t cope.
Work put me on short term disability and their insurance company started dealing with me. That process has been hell and is ongoing several years later.
Part 19 can be found here.
December 2012
2012 was a year of transition. Feeling that my vision was running out, I convinced my brother to take me to Europe for the first time. It was amazing. I did all the typical tourist things. We went to the Eye, the Tower of London, the Tower Bridge. We eventually got out of the city and went to Stonehenge, Oxford and Dover. Then we took the train to Paris and I got to go to the top of the Eiffel Tower.
After I got home, my eyes continued to get blurry. My job was very visual. I did budgets in Excel, I put together Power Point presentations for upper management. I read technical documents to estimate project costs. And then I’d be instant messaging three or four people at all times. Plus email. While on a conference call. All of this happened at the same time. I was a multitasking machine. But I couldn’t keep up.
I realized I needed help when I went to a Fourth of July celebration and couldn’t focus on the fireworks. It was like I had cataracts all over. The world was a blurry fog.
In July, I went to see my retina specialist about the blurry vision. I assumed he’d tell me that I needed another YAG surgery. What he told me shocked me. He told me there was nothing to be done. I’d reached end stage of RP. He told me to get my affairs in order while I could.
With my doctor’s blessing I went for a second opinion. My surgeon agreed with my retina specialist; there was nothing to be done.
9 July 2012
I hate visual field tests. Reminds me of all that I’ve lost.
18 August 2012
Just a sprain
19 August 2012
I'm bed ridden and the cable is out. Curse you Time Warner!
20 August 2012
Big thank you to Kate for taking care of me while I've been laid up. For good times and the bad times are not just words.
21 August 2012
Starting to wonder if I'm the physical humor comic relief for a secretly recorded sitcom.
22 August 2012
My foot fits back into my shoe. Saturday and Sunday I wondered if that would ever happen again.
December 2015
In August, I missed a step and severely injured my ankle. I was bed ridden for several days. It was a wakeup call that I needed to take my disability more seriously. I made an appointment to see a disability lawyer and he convinced me it was time to start the process. So on a morning in September, I called HR and went on leave. It was one of the hardest calls I’ve ever made. It violated a core part of my soul to say I couldn’t cope.
Work put me on short term disability and their insurance company started dealing with me. That process has been hell and is ongoing several years later.
Part 19 can be found here.
Losing Well Part 17
Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
2010 was a forgettable year. Clearly because I don’t remember it well. Having two kids under the age of 4 will do that. My vision didn’t have any major new issues. Although I continued to struggle with RP. My degrees were below ten in each eye. This meant I now read slower than I ever had.
2010 was also the ten year anniversary of being told by Johns Hopkins that I’d lose all my sight due to RP. I didn’t. My eyesight wasn’t great but I could still read 20/40 out what was left. When I asked my doctors when I’d lose the rest of my field they just shrugged their shoulders.
At work, many of the internal websites couldn’t scale. I couldn’t use the built in magnifier of the web browser. This wasn’t an accident. Web browsers can magnify text by default. To make it so the site couldn’t be enlarged took proactive coding. The end result was that I couldn’t read them. I submitted multiple ADA requests to remove the magnifier lock down but I never got a reply.
I was forced to do reviews by holding up a magnifier to the screen. It was infuriating and insulting and completely preventable. Your basic bank experience.
The children were becoming more driving dependent. Which put more stress on my wife as the only driver. I felt horrible that I wasn’t able to help her out more. I’d looked into get transportation services from the city back when I’d first found out about RP. At that time I was told that I made too much money.
In 2011, my team expanded into China. I’d never had more people working for me. I was getting good reviews. But my vision was also getting more unpredictable. It was often blurry in the mornings. This impacted my ability to read the computer screen.
3 April 2011
This morning I met some of my friends at the park. I got into a soccer match as goalie. I was the blind zen goalie master. My team played good defense so I rarely had a shot on goal. The two that came at me I deflected, so no goals scored. My eye disease makes no sense.
15 September 2011
Kids cleared the eye exam with no issues. Already doing better at tests then I ever did.
26 November 2011
Just found out that a guy who helped me out 12 years ago with info on RP was hit by a car while crossing a street. He was crossing the street with a guide dog and cane and still got hit!
Part 18 is here.
December 2015
2010 was a forgettable year. Clearly because I don’t remember it well. Having two kids under the age of 4 will do that. My vision didn’t have any major new issues. Although I continued to struggle with RP. My degrees were below ten in each eye. This meant I now read slower than I ever had.
2010 was also the ten year anniversary of being told by Johns Hopkins that I’d lose all my sight due to RP. I didn’t. My eyesight wasn’t great but I could still read 20/40 out what was left. When I asked my doctors when I’d lose the rest of my field they just shrugged their shoulders.
At work, many of the internal websites couldn’t scale. I couldn’t use the built in magnifier of the web browser. This wasn’t an accident. Web browsers can magnify text by default. To make it so the site couldn’t be enlarged took proactive coding. The end result was that I couldn’t read them. I submitted multiple ADA requests to remove the magnifier lock down but I never got a reply.
I was forced to do reviews by holding up a magnifier to the screen. It was infuriating and insulting and completely preventable. Your basic bank experience.
The children were becoming more driving dependent. Which put more stress on my wife as the only driver. I felt horrible that I wasn’t able to help her out more. I’d looked into get transportation services from the city back when I’d first found out about RP. At that time I was told that I made too much money.
In 2011, my team expanded into China. I’d never had more people working for me. I was getting good reviews. But my vision was also getting more unpredictable. It was often blurry in the mornings. This impacted my ability to read the computer screen.
3 April 2011
This morning I met some of my friends at the park. I got into a soccer match as goalie. I was the blind zen goalie master. My team played good defense so I rarely had a shot on goal. The two that came at me I deflected, so no goals scored. My eye disease makes no sense.
15 September 2011
Kids cleared the eye exam with no issues. Already doing better at tests then I ever did.
26 November 2011
Just found out that a guy who helped me out 12 years ago with info on RP was hit by a car while crossing a street. He was crossing the street with a guide dog and cane and still got hit!
Part 18 is here.
Losing Well Part 16
Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
2008 was a good year but not one I documented all that well. I was promoted to Vice President at the bank. I moved into international project management with teams in India, Canada and Mexico.
I was also busy changing diapers and staying up late with a toddler. Lack of sleep seems to prevent the formation of memories. Work was sending me to Delaware a lot during this period. They also sent me to Ottawa in February. Brrr.
We did take my son on his first airplane ride as well flew to San Fransisco. We rented a car and drove down the PCH.
12 December 2008
YAG surgery on Jan 7th scheduled for my left eye.
December 2015
2009 was the year my daughter was born. I was working from home at this point. My team was all over the world and I took calls at all times of the day and night. My time was consumed by work and running after the kids.
It was a tough time, stressful. A lot of work with little distraction. I gained a lot of weight when I started working from home. I was tired all the time.
April 4, 2009
Ten years ago I was diagnosed with RP. I was told I had ten years of vision. At the time I was an IT contractor renting a home in a small town. I drove an hour into the city every morning for work. I had a stay at home wife who wanted kids. And I was miserable.
Within months of finding out about RP, my wife left me, I had to stop driving, and move away from my friends in order to be closer to work. I’d almost everything I knew.
RP saved my life. With ten years of hindsight I can honestly say I’m glad I found out about RP that miserable day. None of what I have now would exist without the destruction the disease wrought. I still have that job and four years after my ex-wife left, I married a woman I’m much happier with. I own a nice home close to the center of the city and we have a fantastic two year old son with a baby on the way.
Ten years ago everyone kept saying that by losing my vision I would gain special insight. My special insight is that there is no special knowledge. All we have are choices. RP forced me to make choices I would have otherwise avoided. That’s the lesson. Either make choices now or be forced to. Choose wisely.
May 2009
And now I have a little girl!
6 July 2009
Today started out in the pre-dawn twilight since my daughter couldn't sleep. By eight, she and Kate were back asleep. Only now my son was wide awake and wanted to play. Skip forward a couple of hours and I got to go to bed.
So there I was in the blissful arms of REM sleep. My son went into his bedroom, grabbed his full size pillow and dragged it into the master. He then wielded the pillow like a hammer, hefted it over his head, and landed it directly on my head. Nap time over.
Skip ahead to bed time. My son went down later then normal, after nine,. My daughter was suffering from gas and remained fussy and awake. Just as we got her to sleep, my son started screaming bloody murder. So I opened his door and he's lying on his bed holding his diaper in his hands. Sure enough, he'd wet the bed. Sigh. I flip on the light and discover that he'd also taken a dump on the carpet.
Skip forward ten minutes and I'm rocking my daughter in my arms to keep her asleep as my son is helping make his bed by pulling up the corners Kate had just tucked in. While laughing. We were not so amused. My son took a small plastic ball and thew it in my direction. It hit my sleeping daughter on the head, waking her. She screamed, My son screamed. Then everyone went back to bed.
Part 17 can be found here.
December 2015
2008 was a good year but not one I documented all that well. I was promoted to Vice President at the bank. I moved into international project management with teams in India, Canada and Mexico.
I was also busy changing diapers and staying up late with a toddler. Lack of sleep seems to prevent the formation of memories. Work was sending me to Delaware a lot during this period. They also sent me to Ottawa in February. Brrr.
We did take my son on his first airplane ride as well flew to San Fransisco. We rented a car and drove down the PCH.
12 December 2008
YAG surgery on Jan 7th scheduled for my left eye.
December 2015
2009 was the year my daughter was born. I was working from home at this point. My team was all over the world and I took calls at all times of the day and night. My time was consumed by work and running after the kids.
It was a tough time, stressful. A lot of work with little distraction. I gained a lot of weight when I started working from home. I was tired all the time.
April 4, 2009
Ten years ago I was diagnosed with RP. I was told I had ten years of vision. At the time I was an IT contractor renting a home in a small town. I drove an hour into the city every morning for work. I had a stay at home wife who wanted kids. And I was miserable.
Within months of finding out about RP, my wife left me, I had to stop driving, and move away from my friends in order to be closer to work. I’d almost everything I knew.
RP saved my life. With ten years of hindsight I can honestly say I’m glad I found out about RP that miserable day. None of what I have now would exist without the destruction the disease wrought. I still have that job and four years after my ex-wife left, I married a woman I’m much happier with. I own a nice home close to the center of the city and we have a fantastic two year old son with a baby on the way.
Ten years ago everyone kept saying that by losing my vision I would gain special insight. My special insight is that there is no special knowledge. All we have are choices. RP forced me to make choices I would have otherwise avoided. That’s the lesson. Either make choices now or be forced to. Choose wisely.
May 2009
And now I have a little girl!
6 July 2009
Today started out in the pre-dawn twilight since my daughter couldn't sleep. By eight, she and Kate were back asleep. Only now my son was wide awake and wanted to play. Skip forward a couple of hours and I got to go to bed.
So there I was in the blissful arms of REM sleep. My son went into his bedroom, grabbed his full size pillow and dragged it into the master. He then wielded the pillow like a hammer, hefted it over his head, and landed it directly on my head. Nap time over.
Skip ahead to bed time. My son went down later then normal, after nine,. My daughter was suffering from gas and remained fussy and awake. Just as we got her to sleep, my son started screaming bloody murder. So I opened his door and he's lying on his bed holding his diaper in his hands. Sure enough, he'd wet the bed. Sigh. I flip on the light and discover that he'd also taken a dump on the carpet.
Skip forward ten minutes and I'm rocking my daughter in my arms to keep her asleep as my son is helping make his bed by pulling up the corners Kate had just tucked in. While laughing. We were not so amused. My son took a small plastic ball and thew it in my direction. It hit my sleeping daughter on the head, waking her. She screamed, My son screamed. Then everyone went back to bed.
Part 17 can be found here.
Losing Well Part 15
Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
Having a child changed everything. I now had a purpose. I loved playing with my son. I looked forward to getting off work to be with him. When I was using my cane with my son I felt some people were judging me as an unfit father. It was hard not to want to start an argument with them. My vision has always been a topic of conversation for people who’ve never met me.
My visual field held steady during this time. Unfortunately, the rest of my vision didn't cooperate.
22 April 2007
I was downtown crossing a street when disaster struck. A water seal had been removed from the road, leaving a deep six inch wide pothole. My left foot went into the hole while the rest of my body continued to move forward. I fell to my hands and knees in the middle of the crosswalk. Unfortunately, my foot stayed in the pothole.
Even before I struggled back to my feet I knew the injury couldn’t be walked off. Something felt broken. An hour later I was in the ER. The good news was that I hadn’t broken my leg. I’d sprained various muscles in my foot, ankle and lower leg. The doctor wrote me a prescription for pain meds and the nurse braced my leg and gave me a pair of crutches. To which I held up my cane and asked her if she could also supply me with a third arm. I’ve been left with the choice of walking with crutches and not seeing where I’m going or walking with my cane. In horrible pain.
I requested help getting to a bathroom. A nurse got me into a wheelchair and pushed me to a restroom. Before she left she told me to pull a red cord to let her know when I was done. So I did what I needed to do then pulled the cord. Nothing happened. I was trapped in a Seinfeld episode.
I struggled my weight up onto my good leg. Only the wheelchair lay between me and the door. So I had to maneuver around the chair. I was in horrible pain. Once I reached the door I couldn’t open it because of where the wheelchair was located. After a series of painful and graceless movements, I finally escaped. When my nurse arrived she asked me why I hadn't just pulled the cord.
Now I'm left with two weeks of crutches, pain and a giant staircase. All you can do is laugh. Only it hurts when I laugh. Fate has had her way with me. Now leave me alone. Please.
1 August 2007
I feel like the beginning of the Simpson’s movie; itchy and scratchy. And it’s hard not to feel lied to. When I got cataract surgery on my right eye six years ago, I was told it was a simple procedure with a high success rate. As of today I’ve had my third corrective surgery.
The first two surgeries were YAGs. The fact that I had two YAGs in the same eye was apparently rare enough that my surgeon documented it for possible publication. I’m just that kind of guy when it comes to my eyes. Today’s surgery was for filamentary keratitis.
Sunday night I noticed that my right eye itched constantly. By Monday afternoon I was taking eye drops and hoping I didn’t have conjunctivitis. By Tuesday morning I knew something was seriously wrong. My eye was swollen, red, sensitive to light and in pain.
As best I can understand it, a piece of my cornea broke off and filled itself into wounds on the surface of my cornea caused by my cataract surgery. These broken pieces of cornea implanted themselves in the gouges on the surface of my eye and continued to grow outward until I felt their presence. At which time they became infected.
Like the YAGs, filamentary keratitis was most likely a side effect of that years old cataract surgery. The gift that keeps on giving. KF, RP, cataracts, amblyopia, YAGs, astigmatism. Dare I ask what’s next?
3 August 2007
I'm wearing a pirate patch. Doctor implanted a temporary lens on the outside of my cornea to help it heal. So now I have a bionic eye. I already had artificial lenses in both eyes and now I have an artificial cornea! To bad no X-ray vision.
5 August 2007
Thursday my right eye: 20/40
Saturday: 20/200
Saturday at the eye clinic and they had very short staff. I told the nurse, “you implanted a contact lens on my eye Thursday and I lost vision. Solution: take the damn thing out.”
Nurse,"we probably can't do anything about that.”
Ten minutes later the doctor said, "who the hell put this lens in? It's all wrong." He popped out the lens and bam! I could see again.
The "miracle" of our modern health system. And I still had to pay a 25 dollar co-pay. I pay for their mistakes. I’m in the wrong biz.
Part 16 can be found here.
December 2015
Having a child changed everything. I now had a purpose. I loved playing with my son. I looked forward to getting off work to be with him. When I was using my cane with my son I felt some people were judging me as an unfit father. It was hard not to want to start an argument with them. My vision has always been a topic of conversation for people who’ve never met me.
My visual field held steady during this time. Unfortunately, the rest of my vision didn't cooperate.
22 April 2007
I was downtown crossing a street when disaster struck. A water seal had been removed from the road, leaving a deep six inch wide pothole. My left foot went into the hole while the rest of my body continued to move forward. I fell to my hands and knees in the middle of the crosswalk. Unfortunately, my foot stayed in the pothole.
Even before I struggled back to my feet I knew the injury couldn’t be walked off. Something felt broken. An hour later I was in the ER. The good news was that I hadn’t broken my leg. I’d sprained various muscles in my foot, ankle and lower leg. The doctor wrote me a prescription for pain meds and the nurse braced my leg and gave me a pair of crutches. To which I held up my cane and asked her if she could also supply me with a third arm. I’ve been left with the choice of walking with crutches and not seeing where I’m going or walking with my cane. In horrible pain.
I requested help getting to a bathroom. A nurse got me into a wheelchair and pushed me to a restroom. Before she left she told me to pull a red cord to let her know when I was done. So I did what I needed to do then pulled the cord. Nothing happened. I was trapped in a Seinfeld episode.
I struggled my weight up onto my good leg. Only the wheelchair lay between me and the door. So I had to maneuver around the chair. I was in horrible pain. Once I reached the door I couldn’t open it because of where the wheelchair was located. After a series of painful and graceless movements, I finally escaped. When my nurse arrived she asked me why I hadn't just pulled the cord.
Now I'm left with two weeks of crutches, pain and a giant staircase. All you can do is laugh. Only it hurts when I laugh. Fate has had her way with me. Now leave me alone. Please.
1 August 2007
I feel like the beginning of the Simpson’s movie; itchy and scratchy. And it’s hard not to feel lied to. When I got cataract surgery on my right eye six years ago, I was told it was a simple procedure with a high success rate. As of today I’ve had my third corrective surgery.
The first two surgeries were YAGs. The fact that I had two YAGs in the same eye was apparently rare enough that my surgeon documented it for possible publication. I’m just that kind of guy when it comes to my eyes. Today’s surgery was for filamentary keratitis.
Sunday night I noticed that my right eye itched constantly. By Monday afternoon I was taking eye drops and hoping I didn’t have conjunctivitis. By Tuesday morning I knew something was seriously wrong. My eye was swollen, red, sensitive to light and in pain.
As best I can understand it, a piece of my cornea broke off and filled itself into wounds on the surface of my cornea caused by my cataract surgery. These broken pieces of cornea implanted themselves in the gouges on the surface of my eye and continued to grow outward until I felt their presence. At which time they became infected.
Like the YAGs, filamentary keratitis was most likely a side effect of that years old cataract surgery. The gift that keeps on giving. KF, RP, cataracts, amblyopia, YAGs, astigmatism. Dare I ask what’s next?
3 August 2007
I'm wearing a pirate patch. Doctor implanted a temporary lens on the outside of my cornea to help it heal. So now I have a bionic eye. I already had artificial lenses in both eyes and now I have an artificial cornea! To bad no X-ray vision.
5 August 2007
Thursday my right eye: 20/40
Saturday: 20/200
Saturday at the eye clinic and they had very short staff. I told the nurse, “you implanted a contact lens on my eye Thursday and I lost vision. Solution: take the damn thing out.”
Nurse,"we probably can't do anything about that.”
Ten minutes later the doctor said, "who the hell put this lens in? It's all wrong." He popped out the lens and bam! I could see again.
The "miracle" of our modern health system. And I still had to pay a 25 dollar co-pay. I pay for their mistakes. I’m in the wrong biz.
Part 16 can be found here.
Monday, December 28, 2015
Loasing Well Part 14
Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
2006 was an important year. I’d had cataract surgery in both eyes and was struggling to read print. I was still suffering from depression. Then in the summer I found out news that would change my life forever. Kate was pregnant. This news flipped a switch. I was yanked out of my naval gazing and had something positive to focus on.
When I'd first found out about RP, I had gone for genetic testing, The counselor gave me a 10% chance of passing on RP to any offspring. Those odds didn't scare us away from having children. But they did scare me. I never wanted my children to have to suffer the way I have.
June 2006
Kate’s pregnant!
21 August 2006
Found out we’re having a boy!
October 2006
Went to Miami for the first time. Kate and I loved it.
3 November 2006
This year has been difficult from an eyesight perspective. Since my second cataract surgery in February, I’ve had to deal with not reading any book I felt like. Instead, I’ve been forced to read large print books. This is not ideal. Mainly because I’m not old and/or into romance or crime novels.
Then a couple of months back I saw a low vision specialist who gave me a new prescription for reading. While it isn’t exactly the same, I have to hold the book a lot closer to my nose, I’m very happy to report that I’m back to ready normal sized print.
I see a retina specialist on a regular basis and I’ve been to Johns Hopkins for treatment. But what it really took was a doctor willing to talk to me and work with me – something that took longer than a twenty minute appointment. She has my thanks.
7 December 2006
I did the unthinkable today, I went Christmas shopping at the mall. While I’m smart enough to do the majority of my shopping online, there are things that just have to be seen to be bought. Which becomes a philosophical musing given my visual impairment.
The mall was what the mall is this time of year. The crowds were huge, and very hard for me to navigate without my cane. Of course wife and I now look ridiculous when I use my cane. We’re like super hero’s: Pregnant girl and the blind guy.
2 February 2007
He's Here! my son was born today! Doctor didn’t make it back to the hospital in time so our nurse delivered him.
Part 15 can be found here.
December 2015
2006 was an important year. I’d had cataract surgery in both eyes and was struggling to read print. I was still suffering from depression. Then in the summer I found out news that would change my life forever. Kate was pregnant. This news flipped a switch. I was yanked out of my naval gazing and had something positive to focus on.
When I'd first found out about RP, I had gone for genetic testing, The counselor gave me a 10% chance of passing on RP to any offspring. Those odds didn't scare us away from having children. But they did scare me. I never wanted my children to have to suffer the way I have.
June 2006
Kate’s pregnant!
21 August 2006
Found out we’re having a boy!
October 2006
Went to Miami for the first time. Kate and I loved it.
3 November 2006
This year has been difficult from an eyesight perspective. Since my second cataract surgery in February, I’ve had to deal with not reading any book I felt like. Instead, I’ve been forced to read large print books. This is not ideal. Mainly because I’m not old and/or into romance or crime novels.
Then a couple of months back I saw a low vision specialist who gave me a new prescription for reading. While it isn’t exactly the same, I have to hold the book a lot closer to my nose, I’m very happy to report that I’m back to ready normal sized print.
I see a retina specialist on a regular basis and I’ve been to Johns Hopkins for treatment. But what it really took was a doctor willing to talk to me and work with me – something that took longer than a twenty minute appointment. She has my thanks.
7 December 2006
I did the unthinkable today, I went Christmas shopping at the mall. While I’m smart enough to do the majority of my shopping online, there are things that just have to be seen to be bought. Which becomes a philosophical musing given my visual impairment.
The mall was what the mall is this time of year. The crowds were huge, and very hard for me to navigate without my cane. Of course wife and I now look ridiculous when I use my cane. We’re like super hero’s: Pregnant girl and the blind guy.
2 February 2007
He's Here! my son was born today! Doctor didn’t make it back to the hospital in time so our nurse delivered him.
Part 15 can be found here.
Losing Well Part 13
Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
The rest of 2004 was spent getting my new house in order. I started going back to shows. I stopped writing a journal so I don’t have too much of my feelings from this time period. I threw myself into work. The long hours were paying off as I was getting recognition for my project management skills.
May 2005
Off to Phoenix. Kate’s going to join me and we’re going to drive up the painted desert.
9 September 2005
My battle with RP marches onward. I just got back from Johns Hopkins. I go there every two years to baseline my remaining vision. This time didn't go so well. It showed that I have lost 50 percent of my vision in the past four years - not that I had all that much four years ago. Most of what I lost was islands notremaining central core.
I’ve been sitting on my hands for a while. It’s easy for me to forget that I even have a problem. That’s because RP challenges my sense of self and I’m in denial.
When I act blind people get upset when I prove I can see. When I pretend I’m sighted, I end up getting hurt - you should see the bruises on my legs. So in many ways it’s easier to live down to people's expectations than to challenge them with the half sighted world. Educating the public gets tiresome and it was never a position I wanted to be in. I need to start being who I am. Contradictions and all.
December 2015
2006 started out rough. I had cataract surgery in my left eye. I started to lose the ability to read normal print. This caused me to sink further into depression. Most people didn’t read books and now I was going to forced to quit them. It felt very unfair and frustrating.
February, 2006
Had cataract surgery in my left eye.Now I have to use bifocals to read. It’s a tough change. Getting lots of headaches.
24 March 2006
Went to a coffee house with friends. On the way out I got hit up by a cute young couple with a “Can we pray for your eyes?” The cane does draw attention.
“Why?” I asked in surprise.
"So God can heal your eyes,” the guy replied.
I was confused.“It’s a genetic eye disease."
“So?” The girl replied. “Let’s give it a shot.”
I let go of the girl’s hand. “I really do appreciate your concern, but no thanks.”
“You don’t want us to pray for you?” the girl asked. I could hear her confusion.
“No,” I replied. They left with the odd tension of the unexpectedly rejected. People can't just accept me for who I am.
Part 14 can be found here.
December 2015
The rest of 2004 was spent getting my new house in order. I started going back to shows. I stopped writing a journal so I don’t have too much of my feelings from this time period. I threw myself into work. The long hours were paying off as I was getting recognition for my project management skills.
May 2005
Off to Phoenix. Kate’s going to join me and we’re going to drive up the painted desert.
9 September 2005
My battle with RP marches onward. I just got back from Johns Hopkins. I go there every two years to baseline my remaining vision. This time didn't go so well. It showed that I have lost 50 percent of my vision in the past four years - not that I had all that much four years ago. Most of what I lost was islands notremaining central core.
I’ve been sitting on my hands for a while. It’s easy for me to forget that I even have a problem. That’s because RP challenges my sense of self and I’m in denial.
When I act blind people get upset when I prove I can see. When I pretend I’m sighted, I end up getting hurt - you should see the bruises on my legs. So in many ways it’s easier to live down to people's expectations than to challenge them with the half sighted world. Educating the public gets tiresome and it was never a position I wanted to be in. I need to start being who I am. Contradictions and all.
December 2015
2006 started out rough. I had cataract surgery in my left eye. I started to lose the ability to read normal print. This caused me to sink further into depression. Most people didn’t read books and now I was going to forced to quit them. It felt very unfair and frustrating.
February, 2006
Had cataract surgery in my left eye.Now I have to use bifocals to read. It’s a tough change. Getting lots of headaches.
24 March 2006
Went to a coffee house with friends. On the way out I got hit up by a cute young couple with a “Can we pray for your eyes?” The cane does draw attention.
“Why?” I asked in surprise.
"So God can heal your eyes,” the guy replied.
I was confused.“It’s a genetic eye disease."
“So?” The girl replied. “Let’s give it a shot.”
I let go of the girl’s hand. “I really do appreciate your concern, but no thanks.”
“You don’t want us to pray for you?” the girl asked. I could hear her confusion.
“No,” I replied. They left with the odd tension of the unexpectedly rejected. People can't just accept me for who I am.
Part 14 can be found here.
Losing Well Part 12
Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
2003 and early 2004 were the best and worst times of my life. Kate and I got married and went on honeymoon. I was promoted and had a new team working for me. And my parents died. They lived hundreds of miles apart and didn’t talk to each but they still died only a few months apart.
The loss of my Mother sent me into a depression spiral that took years to climb out of. I started going back out as a way of dealing with all my unresolved issues. I become numb as a defense mechanism to protect myself from pain. I stopped caring. I became distant even from myself.
I was so worried about RP that I hadn’t prepared myself to deal with anything else. Life has it’s own narrative. I took an online stress test during this time. My results were deemed invalid. The algorithm assumed that no one could experience that much stress in one year.
June 2003
The one bedroom condo was great when I lived alone. But not enough space for two people. So we’re going to try and sell it and buy a house.
30 June 2003
A lot of comedians like to make fun of the “legally blind.” They are, according to the pundits, healthy people looking for a crutch. I was now “legally blind.” The biggest issue with being legally blind is that you aren’t allowed to drive a car. Just as with acuity, most states have guidelines for the field width required for a license. Not having a car in America can be a death sentence. Beyond the lack of public transportation, there is a definite stigma associated with non-drivers in this country.
7 July 2003
Disabled bathrooms are the worst. They’re setup only for people in wheelchairs. I brought this up to my architect friend. His response was “go study bathroom design for a couple of years and then maybe I will talk to you about it.” I was a bit surprised by his attitude. Aren’t the people who use bathroom the “customers”? Must be a great to work in an industry where the customers are sneered at and customer criticism is only due to their misunderstanding of the “vision.”
October 2003
Got married! Honeymoon in Sedona. The Grand Canyon. What an amazing trip.
November 2003
My Dad died of a heart attack. We’d just gotten back from the Honeymoon. I never really got to know him. Never will now. Glad he came to the wedding.
February 2004
I got to spend Christmas with Mom. She was thin and ill. We knew it would be her last. Too young. Forever to be missed. My best friend.
April 2004
Sold the condo and bought a house.
9 May 2004
I’m so tried. My body is cut and bruised and stung. A week of moving and working. I used to know how to smile. Why is my life so damn hard? I’m not complaining about simple problems or suburban drama. My life has been hard as long as I can remember. And never the same battles. I’m sick of dealing, sick of the changes, sick of the re-invention.
Part 13 can be found here.
December 2015
2003 and early 2004 were the best and worst times of my life. Kate and I got married and went on honeymoon. I was promoted and had a new team working for me. And my parents died. They lived hundreds of miles apart and didn’t talk to each but they still died only a few months apart.
The loss of my Mother sent me into a depression spiral that took years to climb out of. I started going back out as a way of dealing with all my unresolved issues. I become numb as a defense mechanism to protect myself from pain. I stopped caring. I became distant even from myself.
I was so worried about RP that I hadn’t prepared myself to deal with anything else. Life has it’s own narrative. I took an online stress test during this time. My results were deemed invalid. The algorithm assumed that no one could experience that much stress in one year.
June 2003
The one bedroom condo was great when I lived alone. But not enough space for two people. So we’re going to try and sell it and buy a house.
30 June 2003
A lot of comedians like to make fun of the “legally blind.” They are, according to the pundits, healthy people looking for a crutch. I was now “legally blind.” The biggest issue with being legally blind is that you aren’t allowed to drive a car. Just as with acuity, most states have guidelines for the field width required for a license. Not having a car in America can be a death sentence. Beyond the lack of public transportation, there is a definite stigma associated with non-drivers in this country.
7 July 2003
Disabled bathrooms are the worst. They’re setup only for people in wheelchairs. I brought this up to my architect friend. His response was “go study bathroom design for a couple of years and then maybe I will talk to you about it.” I was a bit surprised by his attitude. Aren’t the people who use bathroom the “customers”? Must be a great to work in an industry where the customers are sneered at and customer criticism is only due to their misunderstanding of the “vision.”
October 2003
Got married! Honeymoon in Sedona. The Grand Canyon. What an amazing trip.
November 2003
My Dad died of a heart attack. We’d just gotten back from the Honeymoon. I never really got to know him. Never will now. Glad he came to the wedding.
February 2004
I got to spend Christmas with Mom. She was thin and ill. We knew it would be her last. Too young. Forever to be missed. My best friend.
April 2004
Sold the condo and bought a house.
9 May 2004
I’m so tried. My body is cut and bruised and stung. A week of moving and working. I used to know how to smile. Why is my life so damn hard? I’m not complaining about simple problems or suburban drama. My life has been hard as long as I can remember. And never the same battles. I’m sick of dealing, sick of the changes, sick of the re-invention.
Part 13 can be found here.
Sunday, December 27, 2015
Losing Well Part 11
Continuation of my series, Losing Well. Part 1 can be found here.
2002
I don’t have any primary source material from 2002. I was too busy living life and I had a smaller digital footprint.
My first couple of years living with RP were rough. My whole life was turned upside down and I had to make a lot of choices quickly. But by 2002, I’d settled into a new normal. The band I’d run sound for had broken up and I was going out less. I had a better handle on how to use my cane and wasn’t too ashamed to use it. I had a girlfriend and a condo. I turned my focus to work and how to get ahead. I enjoyed going into the sighted world and beating them at their own game.
Work kept me busy with travel. I spent a lot of time in Atlanta, Norfolk and Phoenix. I went to Sedona for the first time. Rented a house in the Outer Banks of North Carolina. Kate and I were madly in love. I had a feeling that my life wouldn’t always be so stable and I was determined to enjoy what visual time I had. In the fall, I asked Kate to marry me and she said yes. My disability didn't scare her away.
As a personal highlight, I was able to attend the World Series in San Francisco. The Giants lost that game to the Angels. The crowd wasn't happy as we filed out of the stadium and I must have brushed the wrong person with my cane. I was pushed from behind and went flying through the crowd. I just managed to stay on the feet. Some guy was looking for a fight. The crowd turned towards him and somebody yelled, "he's blind!" The guy panicked and ran.
Visually, I had more cataract problems. My body grew skin over the artificial lens that had been implanted during my cataract surgery. The blurry vision that resulted was just like having cataracts. The doctor performed a YAG surgery by bouncing a low powered laser off the artificial lens to cauterize the skin. It didn’t work the first time and I had to have the process repeated.
The same week that I proposed, I found out that most of my team was getting laid off. The rumor was that I kept my job because I was visually impaired. I don’t think that's true. The accusation still stung. I kept my job but I went from being a manager back to a systems analyst.
Part 12 can be found here.
2002
I don’t have any primary source material from 2002. I was too busy living life and I had a smaller digital footprint.
My first couple of years living with RP were rough. My whole life was turned upside down and I had to make a lot of choices quickly. But by 2002, I’d settled into a new normal. The band I’d run sound for had broken up and I was going out less. I had a better handle on how to use my cane and wasn’t too ashamed to use it. I had a girlfriend and a condo. I turned my focus to work and how to get ahead. I enjoyed going into the sighted world and beating them at their own game.
Work kept me busy with travel. I spent a lot of time in Atlanta, Norfolk and Phoenix. I went to Sedona for the first time. Rented a house in the Outer Banks of North Carolina. Kate and I were madly in love. I had a feeling that my life wouldn’t always be so stable and I was determined to enjoy what visual time I had. In the fall, I asked Kate to marry me and she said yes. My disability didn't scare her away.
As a personal highlight, I was able to attend the World Series in San Francisco. The Giants lost that game to the Angels. The crowd wasn't happy as we filed out of the stadium and I must have brushed the wrong person with my cane. I was pushed from behind and went flying through the crowd. I just managed to stay on the feet. Some guy was looking for a fight. The crowd turned towards him and somebody yelled, "he's blind!" The guy panicked and ran.
Visually, I had more cataract problems. My body grew skin over the artificial lens that had been implanted during my cataract surgery. The blurry vision that resulted was just like having cataracts. The doctor performed a YAG surgery by bouncing a low powered laser off the artificial lens to cauterize the skin. It didn’t work the first time and I had to have the process repeated.
The same week that I proposed, I found out that most of my team was getting laid off. The rumor was that I kept my job because I was visually impaired. I don’t think that's true. The accusation still stung. I kept my job but I went from being a manager back to a systems analyst.
Part 12 can be found here.
Wednesday, December 23, 2015
Losing Well Part 10
Continuation of my series, Losing Well. Part 1 can be found here.
29 January 2001
I went to a new Retina Specialist. He thinks I should get cataract surgery. Johns Hopkins said I shouldn’t. How am I qualified to know who’s right?
1 February 2001
Johns Hopkins sent me an email okaying me to consider cat surgery.
20 March 2001
Seeing the surgeon in April. Looks like I will have cataract surgery.
4 May 2001
Kate came over. We then went out to mini golf and played air hockey. It’s amazing that I beat her at air hockey. I must use radar!
21 May 2001
Had cataract surgery in my right eye. In and out really quick. I was conscience for the whole thing. Spent the day at home recovering.
22 May 2001
Went to the doctor. He took the patch off. I’m correcting to 20/30 without glasses! I’m excited. I need new glasses for sure. Haven’t been able to read out of that eye in two years.
1 December 2001
Kate moved in. Things are going great. A totally different way of living with a girl. We love each other. Imagine that. In spite of RP even.
December 2015
2001 was a year of transitions. I had my first cataract surgery.This allowed me to read out of my right eye for the first time in two years. And Kate moved in with me. Living with her was totally different than living with my ex wife had been.
At work, things were stable. I had a small team working for me to ensure that the software the bank put online worked. My life in general was more stable. I was making better choices. The depression that had plagued me had eased.
Despite all the positive change, 2001 did not end well for my family. My grandmother died the same week my mother found out that she had breast cancer. She cancelled Christmas that year to deal with her grief.
Part 11 can be found here.
29 January 2001
I went to a new Retina Specialist. He thinks I should get cataract surgery. Johns Hopkins said I shouldn’t. How am I qualified to know who’s right?
1 February 2001
Johns Hopkins sent me an email okaying me to consider cat surgery.
20 March 2001
Seeing the surgeon in April. Looks like I will have cataract surgery.
4 May 2001
Kate came over. We then went out to mini golf and played air hockey. It’s amazing that I beat her at air hockey. I must use radar!
21 May 2001
Had cataract surgery in my right eye. In and out really quick. I was conscience for the whole thing. Spent the day at home recovering.
22 May 2001
Went to the doctor. He took the patch off. I’m correcting to 20/30 without glasses! I’m excited. I need new glasses for sure. Haven’t been able to read out of that eye in two years.
1 December 2001
Kate moved in. Things are going great. A totally different way of living with a girl. We love each other. Imagine that. In spite of RP even.
December 2015
2001 was a year of transitions. I had my first cataract surgery.This allowed me to read out of my right eye for the first time in two years. And Kate moved in with me. Living with her was totally different than living with my ex wife had been.
At work, things were stable. I had a small team working for me to ensure that the software the bank put online worked. My life in general was more stable. I was making better choices. The depression that had plagued me had eased.
Despite all the positive change, 2001 did not end well for my family. My grandmother died the same week my mother found out that she had breast cancer. She cancelled Christmas that year to deal with her grief.
Part 11 can be found here.
Tuesday, December 22, 2015
Latest
I haven't been able to work on Losing Well lately. It's the Christmas holidays and I have kids all over me.
Friday, December 18, 2015
Losing Well Part 9
Continuation of my series, Losing Well. Part 1 can be found here.
January 2001
Ever since I found out about RP, a question has been repeating itself in my head: how did I not notice my legal blindness? How did doctors trained to look at the eye not notice? My doctors looked for expected results while my own brain filled in my blind spots. When I walked or drove, I scanned my surroundings. This allowed me a virtual sense of normal mobility. But my brain was lying to me. I spoon fed the truth. By myself.
My doctors were amazed that no one had diagnosed my RP before became an adult. Everyone knew I had vision problems. I just did my best. My brain adapted. I avoided driving at night. I constantly scanned my environment for obstacles. Over time my coping methods started to fail as my visual filed declined.
Vision is a lot more then just acuity. Normally sighted people have 300 degrees of vision in each eye. My field of vision is about 5% of that and has been shirking my entire life. At this point, I’m seeing through a tiny pinhole of vision. What makes this confusing is that my eyes correct to about 20/40. I can read and I can even see faces (but I can only see your nose or mouth, not both at once).
Emotionally, I was a wreck after finding out. How do you deal with the fear and the pain and frustration and not lose your mind? You either decide that you will continue to live or you won't. Most people choose to live. I decided that there were a lot of things in this world I wanted to see and experience and I needed to do it now.
Strangely, while I was very upset, I was also exuberant about finding out I was going blind. I know that sounds crazy but I understood now. So that’s why I was so awkward! It explained so much that I had struggled with growing up. I felt complete in the midst of my outward inability. My whole life experience looked differently with the knowledge of RP.
My perception of myself and of life were changing. I started to realize that all of my life I’d valued myself based upon what others were thinking. I didn’t trust myself. I had strong ideas of what I wanted to do and be but I still perceived myself as incapable in the eyes of others.
At first, I only saw negative. The stress was warping my ability to feel or do anything. So I looked within myself for some sign that I could handle this. My future was looming, massive and unstoppable and I wasn’t sure how I was going to have the strength to get up in the morning. Then I realized something about myself. I’m a fighter.
Part 10 can be found here.
January 2001
Ever since I found out about RP, a question has been repeating itself in my head: how did I not notice my legal blindness? How did doctors trained to look at the eye not notice? My doctors looked for expected results while my own brain filled in my blind spots. When I walked or drove, I scanned my surroundings. This allowed me a virtual sense of normal mobility. But my brain was lying to me. I spoon fed the truth. By myself.
My doctors were amazed that no one had diagnosed my RP before became an adult. Everyone knew I had vision problems. I just did my best. My brain adapted. I avoided driving at night. I constantly scanned my environment for obstacles. Over time my coping methods started to fail as my visual filed declined.
Vision is a lot more then just acuity. Normally sighted people have 300 degrees of vision in each eye. My field of vision is about 5% of that and has been shirking my entire life. At this point, I’m seeing through a tiny pinhole of vision. What makes this confusing is that my eyes correct to about 20/40. I can read and I can even see faces (but I can only see your nose or mouth, not both at once).
Emotionally, I was a wreck after finding out. How do you deal with the fear and the pain and frustration and not lose your mind? You either decide that you will continue to live or you won't. Most people choose to live. I decided that there were a lot of things in this world I wanted to see and experience and I needed to do it now.
Strangely, while I was very upset, I was also exuberant about finding out I was going blind. I know that sounds crazy but I understood now. So that’s why I was so awkward! It explained so much that I had struggled with growing up. I felt complete in the midst of my outward inability. My whole life experience looked differently with the knowledge of RP.
My perception of myself and of life were changing. I started to realize that all of my life I’d valued myself based upon what others were thinking. I didn’t trust myself. I had strong ideas of what I wanted to do and be but I still perceived myself as incapable in the eyes of others.
At first, I only saw negative. The stress was warping my ability to feel or do anything. So I looked within myself for some sign that I could handle this. My future was looming, massive and unstoppable and I wasn’t sure how I was going to have the strength to get up in the morning. Then I realized something about myself. I’m a fighter.
Part 10 can be found here.
Thursday, December 17, 2015
Losing Well Part 8
Continuation of my series, Losing Well. Part 1 can be found here.
May, 2000
I decided that I just didn’t need to define myself as I always have or by value systems that I no longer hold. I don’t need to be dating to feel complete. I have all I need within myself. I am a whole person.
July, 2000
Division of the Blind just called to verify I’d gotten the job set up on my “employment plan.” When I went to them I was employed and I still am employed.
August, 2000
Vancouver Trip. Did Stanley Park, the shops in North Van. I hiked down a dam to a salmon spawning, crossed a suspension bridge over a waterfall. What a great city.
8 September 2000
Been a year since I drove a car. Wow. It still frustrates me that I’m stuck so much of the time. I asked the city about special transportation but they told me I had a job so I wouldn’t qualify. That made no sense to me.
29 September 2000
We went over to a bar and played some pool. We lost, but afterwards, I pulled out my cane. The look on their faces was priceless. I can be so mean.
5 October 2000
Today I found out that I’m divorced. Let the fun begin
6 October 2000
For about the third of fourth time that night some drunk guy asked me why I was faking being blind. I ended up actually explaining it to him and this girl. I got her number but I can’t remember anything about her.
7 October 2000
My friends had an invite to a someone's birthday party - someone I'd never met before. There were a lot of people at the party in a small house. I met this girl. She’s a scientist. We talked most of the night. I got her number.
8 October 2000
I was at a bar and I ran into this guy who loved my cane. “Hey, I gotta have one of those stick things.” What an idiot. Sure no problem guy, let me give you RP then see how much you gotta have one.
9 October 2000
Before I knew about RP I had all the mobility that I needed. Yet I was trapped. Now, I'm free and I no longer have mobility. I traded one form of slavery for another. But my slavery now is one of convenience. Life is not defined by your physical attributes unless you let it be.
12 October 2000
Went out with the scientist, Kate. She has some strange/exotic/cool tastes in music. I like that.
16 October 2000
Wild ride, the movie, Dancing in the Dark. It's a kick in the ass. In it, Bjork plays a mother who willingly allows herself to be hung to death in order for her son to be able to pay for an operation to keep his eyesight. I got physically sick when I realized what it was about. Talk about a slap in the face.
The movie is clearly intended to be anti-capital punishment. Their means are just very upsetting. Came back home and Mom called me with news about some miracle drug that will help my eyesight. It was not what I needed. Why can’t people accept blindness? What's the big deal? If my eyesight is understood to be worth someone else's life, what does that say about me who will lose it? Is my life not valuable without eyesight? I think it is.
18 October 2000
Kate called. We had a good conversation. I really like her. Even if nothing would ever work out between us, I hope we can become friends. She wants to hangout next week sometime.
27 October 2000
Was out with friends downtown. I was walking down the sidewalk when this woman and her friends jumped out of a limo dressed in rave gear. I got out of their way on the sidewalk. The woman held out her hand and said, “you’re not blind.” I couldn’t see her hand and she slapped me across the face.I was too shocked to do much. My friends yelled at her. I was like, what just happened?
9 October 2000
Turned down a job. It paid more but I had no reliable way to get there. Damn RP.
11 October 2000
Kate came and got me around dinner time. Went out on the dance floor. With RP it’s like dancing in the dark by myself. Less fear that way.
17 October 2000
Another department at the bank is offering me more money for less responsibility. How often does that combination happen? My boss is really pushing for me to stay. What do I do? She took a risk on me two and a half years ago. Should I take a risk with her now? I like the stability of the new job and the money but is it good for my career? With RP, should my ego play an y part? My gut is to stay with my boss.
20 October 2000
Made the decision that I’m going to stick with the job. Sigh. Bye bye money. Did I do right? Will I ever know?
22 October 2000
I’m in a rut. I depend too much on going out to have fun. I‘m not dealing with things in the “right” way. It’s just hard for me now. Everything is in flux all the time
27 October 2000
I got to work and my boss called me into her office. She told me that I got nice race. Much more then what I turned down last week!
17 November 2000
The girls love to steal my cane when I’m on the dance floor. Which I don’t really mind. It's fun trying to get it back. It’s the guys I don’t like. The ones who try to run me over with their cars to see if I’ll jump out of the way. Or when they honk their horns and yell out. “you faker.” They're right. I am a faker. I'm just not sure what I’m faking anymore.
9 December 2000
Kate came over. We drank coffee then went over and walked around. I bought her a pair of sunglasses for her birthday. Made her happy. She dropped me off about 4:30 because she had to go to dinner with her parents for her birthday. About an hour after she left, she called me to see if I wanted to go out that night. I was like, sure.
16 December 2000
Cleaned up a bit. Big date planned with Kate. When she got here I just sensed that things had changed between us. I grabbed her hand on the walk to the show and she didn’t let go. Really enjoyed the play. On the way back we kissed in the rain in the graveyard beside my condo. I popped the umbrella over our head just as our lips met. I crack myself up sometimes. So Kate is now my girlfriend. I was all prepared to wine and dine her into submission but she came with her own plans.
December 2015
2000 was my first full year with RP. In the spring of that year I traveled to Johns Hopkins in Baltimore to get a definitive diagnosis. They told me that I probably had ten years of “useable” vision left. That started a clock for me. I felt motivated to see as much of the world as possible in my time left. I threw myself into going out, travel and trying to experience the world as much as possible.
I used RP as a catalyst to reshape myself. I decided I was going to be successful because it was hard. Because the sighted world saw me as incapable. I wanted to beat them at their own game. My reinvention led to getting a new circle of friends, a girlfriend and buying he first piece of real estate I’d ever owned.
RP also exposed to frustrating limitations. I wasn’t able to take a fantastic new job because I couldn’t get transportation. I was also learning how to use the cane in public. The results were mixed. My cane and limited vision confused everyone. Sometimes even myself. If I pretended to be sighted I’d end up acting strange when I couldn’t see. When I used my cane, I got a lot of unwanted attention or people were confused when I still showed some visual ability. It’s a dilemma with no good choices.
Part 9 can be found here.
May, 2000
I decided that I just didn’t need to define myself as I always have or by value systems that I no longer hold. I don’t need to be dating to feel complete. I have all I need within myself. I am a whole person.
July, 2000
Division of the Blind just called to verify I’d gotten the job set up on my “employment plan.” When I went to them I was employed and I still am employed.
August, 2000
Vancouver Trip. Did Stanley Park, the shops in North Van. I hiked down a dam to a salmon spawning, crossed a suspension bridge over a waterfall. What a great city.
8 September 2000
Been a year since I drove a car. Wow. It still frustrates me that I’m stuck so much of the time. I asked the city about special transportation but they told me I had a job so I wouldn’t qualify. That made no sense to me.
29 September 2000
We went over to a bar and played some pool. We lost, but afterwards, I pulled out my cane. The look on their faces was priceless. I can be so mean.
5 October 2000
Today I found out that I’m divorced. Let the fun begin
6 October 2000
For about the third of fourth time that night some drunk guy asked me why I was faking being blind. I ended up actually explaining it to him and this girl. I got her number but I can’t remember anything about her.
7 October 2000
My friends had an invite to a someone's birthday party - someone I'd never met before. There were a lot of people at the party in a small house. I met this girl. She’s a scientist. We talked most of the night. I got her number.
8 October 2000
I was at a bar and I ran into this guy who loved my cane. “Hey, I gotta have one of those stick things.” What an idiot. Sure no problem guy, let me give you RP then see how much you gotta have one.
9 October 2000
Before I knew about RP I had all the mobility that I needed. Yet I was trapped. Now, I'm free and I no longer have mobility. I traded one form of slavery for another. But my slavery now is one of convenience. Life is not defined by your physical attributes unless you let it be.
12 October 2000
Went out with the scientist, Kate. She has some strange/exotic/cool tastes in music. I like that.
16 October 2000
Wild ride, the movie, Dancing in the Dark. It's a kick in the ass. In it, Bjork plays a mother who willingly allows herself to be hung to death in order for her son to be able to pay for an operation to keep his eyesight. I got physically sick when I realized what it was about. Talk about a slap in the face.
The movie is clearly intended to be anti-capital punishment. Their means are just very upsetting. Came back home and Mom called me with news about some miracle drug that will help my eyesight. It was not what I needed. Why can’t people accept blindness? What's the big deal? If my eyesight is understood to be worth someone else's life, what does that say about me who will lose it? Is my life not valuable without eyesight? I think it is.
18 October 2000
Kate called. We had a good conversation. I really like her. Even if nothing would ever work out between us, I hope we can become friends. She wants to hangout next week sometime.
27 October 2000
Was out with friends downtown. I was walking down the sidewalk when this woman and her friends jumped out of a limo dressed in rave gear. I got out of their way on the sidewalk. The woman held out her hand and said, “you’re not blind.” I couldn’t see her hand and she slapped me across the face.I was too shocked to do much. My friends yelled at her. I was like, what just happened?
9 October 2000
Turned down a job. It paid more but I had no reliable way to get there. Damn RP.
11 October 2000
Kate came and got me around dinner time. Went out on the dance floor. With RP it’s like dancing in the dark by myself. Less fear that way.
17 October 2000
Another department at the bank is offering me more money for less responsibility. How often does that combination happen? My boss is really pushing for me to stay. What do I do? She took a risk on me two and a half years ago. Should I take a risk with her now? I like the stability of the new job and the money but is it good for my career? With RP, should my ego play an y part? My gut is to stay with my boss.
20 October 2000
Made the decision that I’m going to stick with the job. Sigh. Bye bye money. Did I do right? Will I ever know?
22 October 2000
I’m in a rut. I depend too much on going out to have fun. I‘m not dealing with things in the “right” way. It’s just hard for me now. Everything is in flux all the time
27 October 2000
I got to work and my boss called me into her office. She told me that I got nice race. Much more then what I turned down last week!
17 November 2000
The girls love to steal my cane when I’m on the dance floor. Which I don’t really mind. It's fun trying to get it back. It’s the guys I don’t like. The ones who try to run me over with their cars to see if I’ll jump out of the way. Or when they honk their horns and yell out. “you faker.” They're right. I am a faker. I'm just not sure what I’m faking anymore.
9 December 2000
Kate came over. We drank coffee then went over and walked around. I bought her a pair of sunglasses for her birthday. Made her happy. She dropped me off about 4:30 because she had to go to dinner with her parents for her birthday. About an hour after she left, she called me to see if I wanted to go out that night. I was like, sure.
16 December 2000
Cleaned up a bit. Big date planned with Kate. When she got here I just sensed that things had changed between us. I grabbed her hand on the walk to the show and she didn’t let go. Really enjoyed the play. On the way back we kissed in the rain in the graveyard beside my condo. I popped the umbrella over our head just as our lips met. I crack myself up sometimes. So Kate is now my girlfriend. I was all prepared to wine and dine her into submission but she came with her own plans.
December 2015
2000 was my first full year with RP. In the spring of that year I traveled to Johns Hopkins in Baltimore to get a definitive diagnosis. They told me that I probably had ten years of “useable” vision left. That started a clock for me. I felt motivated to see as much of the world as possible in my time left. I threw myself into going out, travel and trying to experience the world as much as possible.
I used RP as a catalyst to reshape myself. I decided I was going to be successful because it was hard. Because the sighted world saw me as incapable. I wanted to beat them at their own game. My reinvention led to getting a new circle of friends, a girlfriend and buying he first piece of real estate I’d ever owned.
RP also exposed to frustrating limitations. I wasn’t able to take a fantastic new job because I couldn’t get transportation. I was also learning how to use the cane in public. The results were mixed. My cane and limited vision confused everyone. Sometimes even myself. If I pretended to be sighted I’d end up acting strange when I couldn’t see. When I used my cane, I got a lot of unwanted attention or people were confused when I still showed some visual ability. It’s a dilemma with no good choices.
Part 9 can be found here.
Wednesday, December 16, 2015
Losing Well Part 7
Continuation of my series, Losing Well. Part 1 can be found here.
January, 2000
They decided to do away with my whole group as soon as this project is over at the bank. It’s classic common sense accounting that makes no sense in the software industry. Let’s cut all these expensive techies. But they don’t realize how much we save and earn the bank. Just another sign that MBA training is behind the tech curve. Everyone is leaving. Stressful time.
February, 2000
I bought the condo! Went to San Fransisco for the first time. Got to see the Golden Gate. Went to a great 150 year old bar for breakfast not far from the Wharf. Also got a new job at the bank. I’m working on the web now. Another notch in my belt. I’ve been promised a team lead position if I stick it out. Otherwise, going out a lot. Dated a couple of girls. I’m not really ready.
March, 2000
Moved into the condo. Now I have a swinging bachelor pad right downtown. Let the fun begin. Running sound whenever the band gets a gig. Been a year since I found out about RP. What a mess it made of my life. Not all changes are unnecessary.
April, 2000
My life is surreal. It makes no sense to me. I’m fighting against a future so certain that I falter under it’s gaze. And yet I do the impossible. Everyday, day after day. I no longer recognize what I have become. I never planned this version of me.
19 April 2000
Went to Johns Hopkins. They had nothing good to say to me. My fields are down to 10 and 7. Around 5 percent. Found a cataract in my right eye, inoperable. They did not want to operate on my amblyopia either. Fine with me. I get the sense they’re just trying to make me comfortable without wasting effort on mostly fruitless opportunities. Did the DC thing on the way home. The capitol mostly. Also, I am now a team lead at work.
The following is my medical report from my appointment with Johns Hopkins. I’ve elaborated on the findings in brackets. The information was presented to me in this complicated fashion with little explanation.
Letter from Johns Hopkins:
We discussed the surgical options for the exotropia. He has a quite restricted visual field, and he may actually be gaining an artificial increase in his visual field with the strabismus [lazy eye]. I explained that we could surgically straighten the eye which would improve his ability to make eye contact and improve the appearance, but it would have the negative consequence of constricting his already limited visual fields.
Regarding the symptomatology, he has a strong left eye fixation preference and probably has used that eye most of life. Perhaps as the visual field has begun to decline, he is s witching spontaneously to the right eye more frequently. This use of an amblyopic eye can cause the instability that he noticed. In addition the cataract is probably causing the halos and blurred vision on that side..
Major Findings:
There is no significant improvement on pinhole. Retinoscopic [the refractiveness of the eye] flash of the right eye over his Rx was plano [flat].
Extraocular movement were full. The lids were normal. Visual fields were constricted with spared islands peripherally. Conjuctiva is normal. Cornea is clear. Anterior [toward the front] chamber is deep and quiet. The iris appears normal. The patient is pseudophakic [no known meaning] in the right eye and has a tiny posterior subcapsular opacity [opaque] in the left eye which I do not believe is visually significant.
Dilated fundus [the base of a hollow organ] examination was performed with indirect ophthalmoscopy [examination with a ophthalmoscope] and slitlamp for biomicroscopy [microscopic examination]. There is disc pallor [unnatural paleness] in both eyes. The arterioles [arteries between the muscles arteries and the capillaries] are narrowed.
There is no definite macular edema [accumulation of fluid or hard tissue around the macula in the retina], but this was a difficult examination. There is diffuse bone spicule [small sharp-pointed particulates] pigmentation for 360 degrees in both eyes.
Goldmann visual fields [manual tests] were performed with to document any progression in the RP. In the right eye, he no longer had a temporal [towards the temples] crescent present. The central field to the V-4 appears slightly more constricted to about 25 degrees in diameter in the right eye. The left eye, there is still a preserved crescent temporally with a central field diameter of about 30 degrees to the V-4. Thus, there was a loss of the temporal crescent in the right eye and some small amount of narrowing of the field centrally.
Assessments:
1. Retinitis pigmentosa, sporadic inheritance.
2. Cataract, posterior subcapsular, right eye.
3. Exotropia constant [lazy eye].
Part 8 can be found here.
January, 2000
They decided to do away with my whole group as soon as this project is over at the bank. It’s classic common sense accounting that makes no sense in the software industry. Let’s cut all these expensive techies. But they don’t realize how much we save and earn the bank. Just another sign that MBA training is behind the tech curve. Everyone is leaving. Stressful time.
February, 2000
I bought the condo! Went to San Fransisco for the first time. Got to see the Golden Gate. Went to a great 150 year old bar for breakfast not far from the Wharf. Also got a new job at the bank. I’m working on the web now. Another notch in my belt. I’ve been promised a team lead position if I stick it out. Otherwise, going out a lot. Dated a couple of girls. I’m not really ready.
March, 2000
Moved into the condo. Now I have a swinging bachelor pad right downtown. Let the fun begin. Running sound whenever the band gets a gig. Been a year since I found out about RP. What a mess it made of my life. Not all changes are unnecessary.
April, 2000
My life is surreal. It makes no sense to me. I’m fighting against a future so certain that I falter under it’s gaze. And yet I do the impossible. Everyday, day after day. I no longer recognize what I have become. I never planned this version of me.
19 April 2000
Went to Johns Hopkins. They had nothing good to say to me. My fields are down to 10 and 7. Around 5 percent. Found a cataract in my right eye, inoperable. They did not want to operate on my amblyopia either. Fine with me. I get the sense they’re just trying to make me comfortable without wasting effort on mostly fruitless opportunities. Did the DC thing on the way home. The capitol mostly. Also, I am now a team lead at work.
The following is my medical report from my appointment with Johns Hopkins. I’ve elaborated on the findings in brackets. The information was presented to me in this complicated fashion with little explanation.
Letter from Johns Hopkins:
We discussed the surgical options for the exotropia. He has a quite restricted visual field, and he may actually be gaining an artificial increase in his visual field with the strabismus [lazy eye]. I explained that we could surgically straighten the eye which would improve his ability to make eye contact and improve the appearance, but it would have the negative consequence of constricting his already limited visual fields.
Regarding the symptomatology, he has a strong left eye fixation preference and probably has used that eye most of life. Perhaps as the visual field has begun to decline, he is s witching spontaneously to the right eye more frequently. This use of an amblyopic eye can cause the instability that he noticed. In addition the cataract is probably causing the halos and blurred vision on that side..
Major Findings:
There is no significant improvement on pinhole. Retinoscopic [the refractiveness of the eye] flash of the right eye over his Rx was plano [flat].
Extraocular movement were full. The lids were normal. Visual fields were constricted with spared islands peripherally. Conjuctiva is normal. Cornea is clear. Anterior [toward the front] chamber is deep and quiet. The iris appears normal. The patient is pseudophakic [no known meaning] in the right eye and has a tiny posterior subcapsular opacity [opaque] in the left eye which I do not believe is visually significant.
Dilated fundus [the base of a hollow organ] examination was performed with indirect ophthalmoscopy [examination with a ophthalmoscope] and slitlamp for biomicroscopy [microscopic examination]. There is disc pallor [unnatural paleness] in both eyes. The arterioles [arteries between the muscles arteries and the capillaries] are narrowed.
There is no definite macular edema [accumulation of fluid or hard tissue around the macula in the retina], but this was a difficult examination. There is diffuse bone spicule [small sharp-pointed particulates] pigmentation for 360 degrees in both eyes.
Goldmann visual fields [manual tests] were performed with to document any progression in the RP. In the right eye, he no longer had a temporal [towards the temples] crescent present. The central field to the V-4 appears slightly more constricted to about 25 degrees in diameter in the right eye. The left eye, there is still a preserved crescent temporally with a central field diameter of about 30 degrees to the V-4. Thus, there was a loss of the temporal crescent in the right eye and some small amount of narrowing of the field centrally.
Assessments:
1. Retinitis pigmentosa, sporadic inheritance.
2. Cataract, posterior subcapsular, right eye.
3. Exotropia constant [lazy eye].
Part 8 can be found here.
Losing Well Part 6
Continuation of my series, Losing Well. Part 1 can be found here.
3 September 1999
To Whom It May Concern,
Mr. Mayhew is a client of the state Division of the Blind [and is] seeking help with mobility issues which are a result of his retinitis pigmentosa. He does have retinitis pigmentosa and does have severe restrictions in his visual fields.
Individualized Plan for Employment
This is my individualized plan for employment. I have been provided with opportunities to participate and make informed choices in my vocational goal, services, service providers and ways to get services. The employment goal is should be met by 6/2000. These are the services needed to meet my employment goal:
Services needed: Mobility Services
Beginning Date: 9/99
Who will pay for service: Division of the Blind
Services needed: Guidance and Counseling about adjustment to blindness
Beginning date: 9/99
Who will pay for service: Division of the Blind.
3 September 1999
The wife and I have come to an agreement about the stuff. I’m starting over. But that’s okay. My friends are going to help me move all that’s left. I’m looking forward to it! I think that this is one of the best things that could happen to me.
4 September 1999
Things are crazy here. I got the separation papers from wife. Trying to pack. I met my case worker. She was nice but the documentation they have you fill out is so insulting. It’s like I’m going blind on purpose just so i can milk the state.
10 September 1999
I moved to an apartment 4 blocks from work. I moved in with nothing more than my clothes and a sleeping bag. I let her have everything. Stopped driving.
21 October 1999
I’m supposed to run sound for a band tonight. I don't know if I told you or not but I started using a cane. I really think this is a good thing. Finally got furniture for the apartment.
9 November 1999
When I started emailing you I was married, drove and lived in a house in the country. Now I use a cane, live in an apartment in the heart of the city with all new stuff and I’m separated from my wife. It has only been six months! I look around sometimes and wonder how the hell I got here. But in many ways, I’m happier.
27 December 1999
Sorry it has been so long. Got really busy at work. All this month I have been putting in 60+ hour weeks. I’m buying a condo! It’s right across from the park and about 2 blocks from work.
December 2015
Somehow I survived 1999, my year of upheaval. Everything I knew came crashing down. I was very numb during this whole process. I kept busy working. I was lucky to have a job. It kept me going and allowed me to afford to live downtown. In the space of a year, I’d morphed from a home body married man into a work hard/play hard single man. The transformation left me dizzy.
Another big change in 1999 was using a white cane. The cane is a symbol and it identified me as disabled. I needed to use it to get around and let others know that I needed help getting around. But I had a hard time admitting my weakness to the world. I didn't like being needy.
Towards the end of 1999, I started seeing a therapist. She was worried that I’d slipped into a situational depression. She told me that what I needed was grief counseling for losing my eyesight. She encouraged me to start dating again.
Part 7 can be found here.
3 September 1999
To Whom It May Concern,
Mr. Mayhew is a client of the state Division of the Blind [and is] seeking help with mobility issues which are a result of his retinitis pigmentosa. He does have retinitis pigmentosa and does have severe restrictions in his visual fields.
Individualized Plan for Employment
This is my individualized plan for employment. I have been provided with opportunities to participate and make informed choices in my vocational goal, services, service providers and ways to get services. The employment goal is should be met by 6/2000. These are the services needed to meet my employment goal:
Services needed: Mobility Services
Beginning Date: 9/99
Who will pay for service: Division of the Blind
Services needed: Guidance and Counseling about adjustment to blindness
Beginning date: 9/99
Who will pay for service: Division of the Blind.
3 September 1999
The wife and I have come to an agreement about the stuff. I’m starting over. But that’s okay. My friends are going to help me move all that’s left. I’m looking forward to it! I think that this is one of the best things that could happen to me.
4 September 1999
Things are crazy here. I got the separation papers from wife. Trying to pack. I met my case worker. She was nice but the documentation they have you fill out is so insulting. It’s like I’m going blind on purpose just so i can milk the state.
10 September 1999
I moved to an apartment 4 blocks from work. I moved in with nothing more than my clothes and a sleeping bag. I let her have everything. Stopped driving.
21 October 1999
I’m supposed to run sound for a band tonight. I don't know if I told you or not but I started using a cane. I really think this is a good thing. Finally got furniture for the apartment.
9 November 1999
When I started emailing you I was married, drove and lived in a house in the country. Now I use a cane, live in an apartment in the heart of the city with all new stuff and I’m separated from my wife. It has only been six months! I look around sometimes and wonder how the hell I got here. But in many ways, I’m happier.
27 December 1999
Sorry it has been so long. Got really busy at work. All this month I have been putting in 60+ hour weeks. I’m buying a condo! It’s right across from the park and about 2 blocks from work.
December 2015
Somehow I survived 1999, my year of upheaval. Everything I knew came crashing down. I was very numb during this whole process. I kept busy working. I was lucky to have a job. It kept me going and allowed me to afford to live downtown. In the space of a year, I’d morphed from a home body married man into a work hard/play hard single man. The transformation left me dizzy.
Another big change in 1999 was using a white cane. The cane is a symbol and it identified me as disabled. I needed to use it to get around and let others know that I needed help getting around. But I had a hard time admitting my weakness to the world. I didn't like being needy.
Towards the end of 1999, I started seeing a therapist. She was worried that I’d slipped into a situational depression. She told me that what I needed was grief counseling for losing my eyesight. She encouraged me to start dating again.
Part 7 can be found here.
Tuesday, December 15, 2015
Losing Well Part 5
Continuation of my series, Losing Well. Part 1 can be found here.
1 August 1999
My employer hired an outside company to help its employees deal with future planning and they are calling me today to go over Long Term Disability and SSDI.
3 August 1999
I had the test, but no test results. My doctor is out of town until next week. He originally had me take a 60 degree threshold test which he now thinks was too broad to determine how many degrees I still have. So I went back and took the 2-30 degree test. The test doesn't tell you how many degrees but it does print out a map of what I can see. I’ll be surprised if I have more than 15 degrees in my left eye and more than 10 in my right. Total guess work at this point. Find out next week. I guess that would make me legally blind. Wait and see.
6 August 1999
I went to counseling. Oh boy. I told her all of the things that I have been telling you. It kinda felt good to get it all out. But she got really upset. I honestly don't think that she thought her actions had their own effect on our situation. So all of my hurt and anger is out there now.
7 August 1999
I met with the guy at work who is blind. He was born without eyes. He told me that he thinks I’m in a tougher place because I know what it’s like to see. I live in that gray in-between world of the half-sighted.
8 August 1999
A friend called me. I will be running sound for a band tonight at a art gallery/night club. My life has changed so much since my wife left. I never would have done half of this stuff before
19 August 1999
The marriage counselor just called. My wife has decided to stop counseling. I’m not sure what this means exactly. I have called her house and no one answers. I don't know if this means she wants a separation or what. Needless to say, I am a little upset.
21 August 1999
Will I come out a stronger person? I don't know.
22 August 22, 1999
I find out tomorrow if I am legally blind. Nervous. I need a vacation
23 August 1999
Wife just called. She wants to separate our possessions.
23 August 1999
Turns out I find out tomorrow if I am legally blind. If I am, I have to stop driving and move to were I can get to public transportation. My marriage counselor called to say that my wife wants to stop counseling and she called me today to say that we need to separate our possessions. That is about it though.
24 August 1999
Found out today I’m legally blind. I have less than 20 degrees if vision. Also met with Division of the Blind today.
26 August 1999
I cannot seem to feel anything. Like I am a spectator in my own life.
29 August 1999
I found an apartment.
30 August 1999
I got a really cool apartment 4 blocks from work. Getting legally separated. Stop driving soon and that is going to be a shock to the system. I have a case worker at Division of the Blind now. Start cane training pretty soon. Life is moving real fast here.
Part 6 can be found here.
1 August 1999
My employer hired an outside company to help its employees deal with future planning and they are calling me today to go over Long Term Disability and SSDI.
3 August 1999
I had the test, but no test results. My doctor is out of town until next week. He originally had me take a 60 degree threshold test which he now thinks was too broad to determine how many degrees I still have. So I went back and took the 2-30 degree test. The test doesn't tell you how many degrees but it does print out a map of what I can see. I’ll be surprised if I have more than 15 degrees in my left eye and more than 10 in my right. Total guess work at this point. Find out next week. I guess that would make me legally blind. Wait and see.
6 August 1999
I went to counseling. Oh boy. I told her all of the things that I have been telling you. It kinda felt good to get it all out. But she got really upset. I honestly don't think that she thought her actions had their own effect on our situation. So all of my hurt and anger is out there now.
7 August 1999
I met with the guy at work who is blind. He was born without eyes. He told me that he thinks I’m in a tougher place because I know what it’s like to see. I live in that gray in-between world of the half-sighted.
8 August 1999
A friend called me. I will be running sound for a band tonight at a art gallery/night club. My life has changed so much since my wife left. I never would have done half of this stuff before
19 August 1999
The marriage counselor just called. My wife has decided to stop counseling. I’m not sure what this means exactly. I have called her house and no one answers. I don't know if this means she wants a separation or what. Needless to say, I am a little upset.
21 August 1999
Will I come out a stronger person? I don't know.
22 August 22, 1999
I find out tomorrow if I am legally blind. Nervous. I need a vacation
23 August 1999
Wife just called. She wants to separate our possessions.
23 August 1999
Turns out I find out tomorrow if I am legally blind. If I am, I have to stop driving and move to were I can get to public transportation. My marriage counselor called to say that my wife wants to stop counseling and she called me today to say that we need to separate our possessions. That is about it though.
24 August 1999
Found out today I’m legally blind. I have less than 20 degrees if vision. Also met with Division of the Blind today.
26 August 1999
I cannot seem to feel anything. Like I am a spectator in my own life.
29 August 1999
I found an apartment.
30 August 1999
I got a really cool apartment 4 blocks from work. Getting legally separated. Stop driving soon and that is going to be a shock to the system. I have a case worker at Division of the Blind now. Start cane training pretty soon. Life is moving real fast here.
Part 6 can be found here.
Losing Well Part 4
Continuation of my series Losing Well. Part 1 can be found here.
What follows is a blow by blow description of how RP changed my life. Whenever possible, I use primary sources. These could be emails that I sent, journal entries and even IM’s. I expand this narrative to further explain events as they unfolded. The text has been edited where necessary for grammar and context.
May 1999
I got the shock of my life. Forever to be changed. Made sense in a weird sort of way. Explained a lot of my problems growing up. Wife didn’t take it well. Afraid that she will have to take care of me some day. “I didn’t sign up for this.”
Worried that I will have to stop driving if I am legally blind. Not sure how you even find out. Trying to deal with RP. Still working really hard.
2 May 1999
I just ran across your site and I was hoping that you could send me in
the right direction here. My doctor told me last night that I have RP. I know nothing about it. I have the same symptoms that you described, lack of night vision, bad peripheral vision, use of one eye at a time, lack of depth perception. It’s good to know I am not the only one. I am going for a second opinion soon.
25 May 1999
No one else in my family has RP. My parents keep saying that they will find a cure for RP. They’re trying to help me but all I really need is for understanding, not false hope.
1 June 1999
Work has been insane. My current project is just about over so I look to have a better summer than I did spring. Things at home have suffered though. Ups and downs. Started marriage counseling.
25 June 1999
I’m still fighting with the insurance people. I'm glad RP isn’t life threatening. I’d be dead by now. Counseling sucked. We had a talk this weekend about how she had reached the end of her patience and that if I did not change soon then she would leave. It would almost be a relief. I have no hope this can be worked out. I have no hope that it will end quickly either. I feel in limbo hell. I guess I could make the first move but it was for better and worse and all of that.
2 July 1999
Wife is spending the night at her Mother’s. I see nothing else I can do. If we separate, I don’t think I could ever come back. Freedom would taste too good.
4 July 1999
Independence Day. Let’s see, wife is still at her Mother’s and is not coming back until she thinks that I've changed. I’ve enjoyed the last several days of solitude. I realize now how much my will has been sucked into pleasing her.
Anyway, went out drinking last night for the first time since I can't remember. A good friend drove and everything. I ran into some of the same problems that you talked about - hard to read faces, running into people/things. But it was still a blast. In a strange way, I could see better outside since all the streets are lighted.
7 July 1999
I’m going to get genetically tested for RP. The insurance came through after a month of paper work hell. I think that they will approve anything if you fill out enough forms and make them keep reading them. They told me about a prescription Vitamin A that I need to start taking. It seems to slow the spread of RP somewhat. Anything that helps.
15 July 1999
It’s strange now that I’m living alone.
23 July 1999
I just found out that you have to have more than 60 degrees of vision to drive. So before long, I will have to stop driving. And in the middle of this my wife walks out. I feel like I am being kicked while I am down.
24 July 1999
As far as driving, my optometrist said he was going to doing some searching and re-exam my charts and give me a recommendation next week. My Ophthalmologist didn't give me the time of day. He didn’t know anything about RP. I wonder how typical this is?
25 July 1999
I read through the weekend’s RP digests [email listserver] and it has me thinking about my future. My company offers long term disability but I don't know a thing about it. I would have to find the "right" way to ask that question. Anyway, it is an idea that I am thinking of. I hope I have decades of private employment before me but you just never know.
26 July 1999
I have a work handbook but it doesn't go into much detail. My boss knows I have RP and has been understanding so I think I'll just talk to him about it. I don't want to go blind alone either. I feel so confused. Nothing has ever prepared me for this moment in life. If I divorced who would want a visually impaired boyfriend? I have always solved problems by thinking out of them but I can not think my way out of any of this.
I know that I need to stop driving sooner rather than later. And to accomplish that goal I have to move. But I live in our house. If I left now it would end the marriage for real. Wife doesn’t want to live in the city. It’s so frustrating. I feel trapped into staying here and driving. I both want to and don’t want to start cane training. I guess it is an acceptance of RP that I haven’t been able to commit to yet. But at night I feel helpless.
27 July 1999
I called the state’s Division of the Blind. They’re two blocks from where I work. They gave me a run down of the services that they provide and none really applied to me but O&M [cane training]. I’m night blind to the point of being a danger to myself. They said I need to meet with them so that they could open a case on me then they would refer me to O&M training. I told them I would call them. It would be a big first step that I am hesitant to take.
28 July 1999
I just called back my optometrist. I have an appointment for next week. We’re going to narrow down exactly how much field of vision I have left.
29 July 1999
I’m feeling trapped into staying at the house. I think I’m going to have to stop driving soon and to do that I have to move. But I can’t do that until this thing with the wife is settled. So I'm stuck and it's for real reasons that I need to move. So frustrated. I'm thinking about getting O&M training for night time walking. Sick of killing myself at night.
30 July 1999
I called the Division of the Blind. I feel so weird doing this. I’m on an list server for RP that is helping me. The best way to describe what I have is, I can see a paper clip on the other side of the room but I will trip over an Elephant trying to get to it.
31 July 1999
In therapy I told them how horrible things have been going and my wife seemed pleased that things were going so bad for me. I’m sick of all of this. I'm starting to foresee life every after without her. And that thought does not hurt as much now. At least the limbo would be over.
Part 5 can be found here.
What follows is a blow by blow description of how RP changed my life. Whenever possible, I use primary sources. These could be emails that I sent, journal entries and even IM’s. I expand this narrative to further explain events as they unfolded. The text has been edited where necessary for grammar and context.
May 1999
I got the shock of my life. Forever to be changed. Made sense in a weird sort of way. Explained a lot of my problems growing up. Wife didn’t take it well. Afraid that she will have to take care of me some day. “I didn’t sign up for this.”
Worried that I will have to stop driving if I am legally blind. Not sure how you even find out. Trying to deal with RP. Still working really hard.
2 May 1999
I just ran across your site and I was hoping that you could send me in
the right direction here. My doctor told me last night that I have RP. I know nothing about it. I have the same symptoms that you described, lack of night vision, bad peripheral vision, use of one eye at a time, lack of depth perception. It’s good to know I am not the only one. I am going for a second opinion soon.
25 May 1999
No one else in my family has RP. My parents keep saying that they will find a cure for RP. They’re trying to help me but all I really need is for understanding, not false hope.
1 June 1999
Work has been insane. My current project is just about over so I look to have a better summer than I did spring. Things at home have suffered though. Ups and downs. Started marriage counseling.
25 June 1999
I’m still fighting with the insurance people. I'm glad RP isn’t life threatening. I’d be dead by now. Counseling sucked. We had a talk this weekend about how she had reached the end of her patience and that if I did not change soon then she would leave. It would almost be a relief. I have no hope this can be worked out. I have no hope that it will end quickly either. I feel in limbo hell. I guess I could make the first move but it was for better and worse and all of that.
2 July 1999
Wife is spending the night at her Mother’s. I see nothing else I can do. If we separate, I don’t think I could ever come back. Freedom would taste too good.
4 July 1999
Independence Day. Let’s see, wife is still at her Mother’s and is not coming back until she thinks that I've changed. I’ve enjoyed the last several days of solitude. I realize now how much my will has been sucked into pleasing her.
Anyway, went out drinking last night for the first time since I can't remember. A good friend drove and everything. I ran into some of the same problems that you talked about - hard to read faces, running into people/things. But it was still a blast. In a strange way, I could see better outside since all the streets are lighted.
7 July 1999
I’m going to get genetically tested for RP. The insurance came through after a month of paper work hell. I think that they will approve anything if you fill out enough forms and make them keep reading them. They told me about a prescription Vitamin A that I need to start taking. It seems to slow the spread of RP somewhat. Anything that helps.
15 July 1999
It’s strange now that I’m living alone.
23 July 1999
I just found out that you have to have more than 60 degrees of vision to drive. So before long, I will have to stop driving. And in the middle of this my wife walks out. I feel like I am being kicked while I am down.
24 July 1999
As far as driving, my optometrist said he was going to doing some searching and re-exam my charts and give me a recommendation next week. My Ophthalmologist didn't give me the time of day. He didn’t know anything about RP. I wonder how typical this is?
25 July 1999
I read through the weekend’s RP digests [email listserver] and it has me thinking about my future. My company offers long term disability but I don't know a thing about it. I would have to find the "right" way to ask that question. Anyway, it is an idea that I am thinking of. I hope I have decades of private employment before me but you just never know.
26 July 1999
I have a work handbook but it doesn't go into much detail. My boss knows I have RP and has been understanding so I think I'll just talk to him about it. I don't want to go blind alone either. I feel so confused. Nothing has ever prepared me for this moment in life. If I divorced who would want a visually impaired boyfriend? I have always solved problems by thinking out of them but I can not think my way out of any of this.
I know that I need to stop driving sooner rather than later. And to accomplish that goal I have to move. But I live in our house. If I left now it would end the marriage for real. Wife doesn’t want to live in the city. It’s so frustrating. I feel trapped into staying here and driving. I both want to and don’t want to start cane training. I guess it is an acceptance of RP that I haven’t been able to commit to yet. But at night I feel helpless.
27 July 1999
I called the state’s Division of the Blind. They’re two blocks from where I work. They gave me a run down of the services that they provide and none really applied to me but O&M [cane training]. I’m night blind to the point of being a danger to myself. They said I need to meet with them so that they could open a case on me then they would refer me to O&M training. I told them I would call them. It would be a big first step that I am hesitant to take.
28 July 1999
I just called back my optometrist. I have an appointment for next week. We’re going to narrow down exactly how much field of vision I have left.
29 July 1999
I’m feeling trapped into staying at the house. I think I’m going to have to stop driving soon and to do that I have to move. But I can’t do that until this thing with the wife is settled. So I'm stuck and it's for real reasons that I need to move. So frustrated. I'm thinking about getting O&M training for night time walking. Sick of killing myself at night.
30 July 1999
I called the Division of the Blind. I feel so weird doing this. I’m on an list server for RP that is helping me. The best way to describe what I have is, I can see a paper clip on the other side of the room but I will trip over an Elephant trying to get to it.
31 July 1999
In therapy I told them how horrible things have been going and my wife seemed pleased that things were going so bad for me. I’m sick of all of this. I'm starting to foresee life every after without her. And that thought does not hurt as much now. At least the limbo would be over.
Part 5 can be found here.
Monday, December 14, 2015
Losing Well Part 3
Continuation of my series Losing Well. Part 1 can be found here.
I threw myself into my new job as an IT consultant. I was working long hours and didn’t get to see my wife much. This was probably good for our relationship. At least at first. I was having increasing problems driving at night and this did cause some stress between us. After a year of consulting, I was hired to work for a bank in their IT department. She was excited about my new job because it meant stability. She wanted to stay at home and have kids.
Late that spring, I went to the an optometrist to get a new prescription. My wife was sick of my complaining about not wanting to drive at night. So I explained to the doctor that I had problems driving after sunset. I also told him how I tripped a lot and couldn’t find things that I had just set down. The doctor had me take a visual fields test. The test was easy enough. I looked at a blank screen and whenever a flash of light appeared, I just had to push a button.
At first, I thought the machine was malfunctioning. I didn’t see any lights flash for the first couple of minutes. Finally, after about ten minutes and a handful of button pushes, the computer evaluating my performance stopped the test. The computer thought I was lying. I was below it's level of peripheral vision measurability. At first I thought it was a software bug. That’s something that I could understand. The doctor had me retake the test.
By this time, the practice had closed and the doctor was acting nervous. He’d dilated my eyes several times and the sun had set. I was fearful of the drive home. The doctor pulled out his old college textbook and handed it to me. He told me that I had an eye disease of the retina, retinitis pigmentosa. The disease had no treatment or cure and it was probably going to lead to blindness.
I thanked the doctor and went to my car. I was numb. I called my wife. I told her that I probably needed to stop driving. Her reaction was to get angry at me. She told me that since there was nothing I could do about the eye disease, I shouldn’t change my life. I should just keep doing what I’d been doing. I thought this was preposterous. I didn’t realize it at the time but finding out about RP would destroy my life.
Part 4 can be found here.
I threw myself into my new job as an IT consultant. I was working long hours and didn’t get to see my wife much. This was probably good for our relationship. At least at first. I was having increasing problems driving at night and this did cause some stress between us. After a year of consulting, I was hired to work for a bank in their IT department. She was excited about my new job because it meant stability. She wanted to stay at home and have kids.
Late that spring, I went to the an optometrist to get a new prescription. My wife was sick of my complaining about not wanting to drive at night. So I explained to the doctor that I had problems driving after sunset. I also told him how I tripped a lot and couldn’t find things that I had just set down. The doctor had me take a visual fields test. The test was easy enough. I looked at a blank screen and whenever a flash of light appeared, I just had to push a button.
At first, I thought the machine was malfunctioning. I didn’t see any lights flash for the first couple of minutes. Finally, after about ten minutes and a handful of button pushes, the computer evaluating my performance stopped the test. The computer thought I was lying. I was below it's level of peripheral vision measurability. At first I thought it was a software bug. That’s something that I could understand. The doctor had me retake the test.
By this time, the practice had closed and the doctor was acting nervous. He’d dilated my eyes several times and the sun had set. I was fearful of the drive home. The doctor pulled out his old college textbook and handed it to me. He told me that I had an eye disease of the retina, retinitis pigmentosa. The disease had no treatment or cure and it was probably going to lead to blindness.
I thanked the doctor and went to my car. I was numb. I called my wife. I told her that I probably needed to stop driving. Her reaction was to get angry at me. She told me that since there was nothing I could do about the eye disease, I shouldn’t change my life. I should just keep doing what I’d been doing. I thought this was preposterous. I didn’t realize it at the time but finding out about RP would destroy my life.
Part 4 can be found here.
Friday, December 11, 2015
Losing Well Part 2
Continuation of my series, Losing Well. Part 1 can be found here.
High school was a horrible time for me. My Mom remarried and we moved to a new state. I lost all my old friends and I didn’t get along with my my Step-Dad. My family didn’t have money and I went to a school were that was important. I eventually graduated in the bottom 25% of my class. I hated the industrial school system. I couldn’t thrive in that style of learning environment. After graduating, I had nothing else to do, so I enrolled in my local community college.
What I loved about college was that the classes were usually smaller and when they weren’t, I could make appointments with the instructors. As an incoming Freshman, the school gave me a reading test. I scored above college graduate. And before my Freshman year was over I’d made the President’s List; straight A’s. My Mother was thrilled that I’d proved my old grade school wrong. After proving myself, I was accepted by the local state university. After graduating with a two year degree, I moved into the dorms on campus as a Junior. I loved living away from my family and everything seemed to fall into place. I joined the debate team, I was elected to serve on student government and worked five on campus jobs. I had lots of friends and in my off time even went to class.
My grades suffered compared to community college but I learned how to cram effectively. This allowed me maximum flexibility while keeping adequate grades. When I aced final exams, my professors often told me they were surprised at how well I’d done because they had low expectations for me. I’d explain to them that my classes were playing second fiddle to my life.
While at school, I met a girl and fell in love. It wasn’t a healthy relationship. I’d witnessed no healthy relationships to emulate. I didn’t have much knowledge of how relationships should play out. Even so, I should have figured out that it wasn’t going to work and moved on. I didn’t and she became a huge part of my story.
I graduated in the May and got married in June. I didn’t have a job. I was twenty-two years old. Some part of me knew that my marriage wasn’t going to work. But getting married seemed like a better idea than moving back in with my Step-Dad.
My first job out of college was work at a grocery store. The work was hard and unfulfilling. I was just trying to make some cash while I was looking for a career. I moved on from the grocery store to selling TV’s at a local retail store. Then I finally got a “real” job working at a finance company. The wages were horrible and the job was mostly collections. I hated it.
After six months, the finance company let me go. While I hated the job it was a blow to the ego to fail. The old grocery store chain I’d worked for rehired me. I was set to start work there the following week. That’s when I saw a want ad in the paper for a software tester. No one in the tech industry wanted to do software testing. But to me that sounded great. I went down the to the temp agency and they had me take some computer literacy tests. I passed and they setup an interview. I did well and was offered a temp to perm job making eight dollars and hour.
It was my first real break. I was working for a company that made fuel pumps. I was testing to make sure that customers could pay at the pump. I loved it. I was always thinking of new and creative ways to break the software. It turned out I was a good systems analyst. I used these skills to convince the company to convert me from temp to perm. Which they did for nine dollars an hour.
For the next year and half I was a lab rat. I spent my days testing pumps and making credit cards. I setup computers to monitor other computers. I crawled around hooking up machines with wires all over the floor. It was really a paid internship. I was being taught how to become a software tester. This experience was more valuable than my college degree.
In the late 1990’s, IT was going through a bubble. Everyone with degrees or experience was running off to Silicon Valley to find their fortune. This left people like me to scoop up their now empty jobs. After working in IT for a year and half, a friend suggested I look for a new job. So I put my first resume on the internet. The level of interest surprised me. I had a phone interview and landed my first consulting job. It paid fifty thousand dollars a year. I was in disbelief.
Part 3 can be found here.
Thursday, December 10, 2015
Losing Well Part 1
This is my story. Like all stories, it has a plot. The plot is driven by retinitis pigemtosa, a degenerative eye disease. This the narrative of a how a disease drove and changed me. Is still changing me.
I was a sickly child. I suffered from both mumps and chickenpox before the age of three. My first signs of visual impairment also occurred at this age. I ran in front of my brother on the swings and got kicked in head. Not long after that incident, my parents realized that my right eye was "lazy."
Amblyopia is a common childhood disease that even in the 1970's was fixed with surgery. So I went under the knife.The surgeon pulled my right eye straight and patched my left, stronger, eye. Only when they took the patch off my left eye, it had turned out as well. So I had to go under again to have my left eye fixed. The surgeries were failures and my eyes continue to be cross-eyed.
Six was a tough age for me. I got my first pair of glasses. I hated wearing them and often wouldn’t. In first grade this would hurt my ability to keep up with my classmates. By the end of second grade my school had a meeting with my Mother and told her that I was mentally challenged and would never read. My Mother pointed to the IQ test the school and given me as evidence that they just couldn’t figure out how to teach me.
Over the summer, Mom sent me to a tutor and by the end of the break I was reading above grade level. This was a pattern I’d see the rest of my academic career. I did poorly at school but would test well. I did poorly in large classes but did well with individual instruction.
Outside of school, my family convinced me to join the swim team. I did well in the pool and by age eight my freestyle medley team went undefeated. By the time I was nine, my age group wasn’t competing until after sunset. I started developing problems. I couldn’t see the wall of the pool. I did great in practice but choked in swim meets. My confidence fell. I didn’t understand what was going on. I’d do better if there was a light on my lane but it wasn’t always lucky enough to get that worked out right. And I didn’t want to tell anyone that I couldn’t see. That was my last year of swimming.
My family was aware that I had vision issues. My night blindness was obvious early on. Everyone just thought I had bad eyes. I had an astigmatism that kept my eyes from correcting to 20/20. Everyone thought my problems were caused by my lack of acuity and the failed eye surgeries. They were mistaken. I was starting to not trust myself to make decisions. I couldn’t figure out what the issue was. I just knew something was wrong.
Part 2 can be found here.
I was a sickly child. I suffered from both mumps and chickenpox before the age of three. My first signs of visual impairment also occurred at this age. I ran in front of my brother on the swings and got kicked in head. Not long after that incident, my parents realized that my right eye was "lazy."
Amblyopia is a common childhood disease that even in the 1970's was fixed with surgery. So I went under the knife.The surgeon pulled my right eye straight and patched my left, stronger, eye. Only when they took the patch off my left eye, it had turned out as well. So I had to go under again to have my left eye fixed. The surgeries were failures and my eyes continue to be cross-eyed.
Six was a tough age for me. I got my first pair of glasses. I hated wearing them and often wouldn’t. In first grade this would hurt my ability to keep up with my classmates. By the end of second grade my school had a meeting with my Mother and told her that I was mentally challenged and would never read. My Mother pointed to the IQ test the school and given me as evidence that they just couldn’t figure out how to teach me.
Over the summer, Mom sent me to a tutor and by the end of the break I was reading above grade level. This was a pattern I’d see the rest of my academic career. I did poorly at school but would test well. I did poorly in large classes but did well with individual instruction.
Outside of school, my family convinced me to join the swim team. I did well in the pool and by age eight my freestyle medley team went undefeated. By the time I was nine, my age group wasn’t competing until after sunset. I started developing problems. I couldn’t see the wall of the pool. I did great in practice but choked in swim meets. My confidence fell. I didn’t understand what was going on. I’d do better if there was a light on my lane but it wasn’t always lucky enough to get that worked out right. And I didn’t want to tell anyone that I couldn’t see. That was my last year of swimming.
My family was aware that I had vision issues. My night blindness was obvious early on. Everyone just thought I had bad eyes. I had an astigmatism that kept my eyes from correcting to 20/20. Everyone thought my problems were caused by my lack of acuity and the failed eye surgeries. They were mistaken. I was starting to not trust myself to make decisions. I couldn’t figure out what the issue was. I just knew something was wrong.
Part 2 can be found here.
Wednesday, December 9, 2015
Silence As Victory
So I've been on private long term disability insurance for several years. I'm also on government disability. The government has been chill. They haven't gone out of their way to make my life hard. My private insurance company has been making me jump through hoops. They've treated me like I'm trying to defraud them. They've been so horrible it makes me wonder if they ever pay out. I'd love to see the percentages.
For years I've been doing tasks the insurance company assigned me. But for the first time I don't have any outstanding hurdles. They sent me to the State blind services a few months back hoping to get confirmation that I should go work at a menial job. The State disagreed and, at least of right now, the insurance company has no plan for me.
I assume my insurance company is regrouping for another angle. Or they've given up fighting? Hard to believe that. But it's not like they'll call to tell me I've beaten them. It's been a month since they called. Maybe silence is victory.
For years I've been doing tasks the insurance company assigned me. But for the first time I don't have any outstanding hurdles. They sent me to the State blind services a few months back hoping to get confirmation that I should go work at a menial job. The State disagreed and, at least of right now, the insurance company has no plan for me.
I assume my insurance company is regrouping for another angle. Or they've given up fighting? Hard to believe that. But it's not like they'll call to tell me I've beaten them. It's been a month since they called. Maybe silence is victory.
Monday, December 7, 2015
College Updates
So, as I've been explaining, I've been offered a scholarship to go back to college but I have to be a full time student and start in January. I have a degree from twenty years ago. This time around I'm disabled due to visual impairment.
That's the background, here's the latest updates.
I'm booked for 7 credit hours and I need to be in 12. Since the university waived my general education requirements, I only have major classes to book. But most of the classes I need to take are entry level for my major and already full. My adviser appealed and got me into 2 classes but so far the appeals haven't worked on any of the other classes.
The interesting question here is, will the State still pay for me to go even if I'm not full time? Is the State flexible enough to let me go to school without being full time? I doubt it. I suspect they'd pay for me to go to classes that aren't required for my degree. But I have yet to ask them. Giving my adviser a shot of getting me in to a couple of classes.
The State made me apply for financial aid, which I was just awarded. My university has given me the option of 5k in student loans per semester. What's odd about that is that it includes room and board expenses. The school has me listed as an adult/off campus student. Typical bureaucracy, doesn't even know what it already knows. I'm not accepting, of course. If the choice was debt or no degree, I'd stick with no degree.
In order to qualify with the disability services on campus, they need a form from my doctor. My doctor's office has said he's working on it but still no paperwork. No one has the same sense of urgency that I have. I want to get my books and get versions I can read from disability services. But I can't.
I'm considering getting some reading glasses made. I won't be able to read super well with them but it will help me in labs were I might not have any other way of viewing information.
I need to book a trip back from school using special transportation to see how that goes and how far they'll take me. Waiting to have a real reason to go to campus first.
That's the background, here's the latest updates.
I'm booked for 7 credit hours and I need to be in 12. Since the university waived my general education requirements, I only have major classes to book. But most of the classes I need to take are entry level for my major and already full. My adviser appealed and got me into 2 classes but so far the appeals haven't worked on any of the other classes.
The interesting question here is, will the State still pay for me to go even if I'm not full time? Is the State flexible enough to let me go to school without being full time? I doubt it. I suspect they'd pay for me to go to classes that aren't required for my degree. But I have yet to ask them. Giving my adviser a shot of getting me in to a couple of classes.
The State made me apply for financial aid, which I was just awarded. My university has given me the option of 5k in student loans per semester. What's odd about that is that it includes room and board expenses. The school has me listed as an adult/off campus student. Typical bureaucracy, doesn't even know what it already knows. I'm not accepting, of course. If the choice was debt or no degree, I'd stick with no degree.
In order to qualify with the disability services on campus, they need a form from my doctor. My doctor's office has said he's working on it but still no paperwork. No one has the same sense of urgency that I have. I want to get my books and get versions I can read from disability services. But I can't.
I'm considering getting some reading glasses made. I won't be able to read super well with them but it will help me in labs were I might not have any other way of viewing information.
I need to book a trip back from school using special transportation to see how that goes and how far they'll take me. Waiting to have a real reason to go to campus first.
Friday, December 4, 2015
The Murkly World
My Long Term Disability insurance company wants me to go back to work. They suggested I do what is considered "under employment" for someone with my resume. I thought this was a transparent plan to make me voluntarily opt out of the policy (due to object misery). The insurance company sent to the State for an evaluation, hoping this would force me to make that decision. As I've documented earlier, the State didn't like the insurance company's plan and suggested I go back to college instead. Which I'm planning on doing.
I recently had a conversation with my "employer" (they don't pay me anymore, their insurance company does) of over a decade. They told me that I'm still employed and that I can be fired for violations of the handbook. I asked them if I'm allowed to seek other employment and they said that I wasn't. I pointed out to them that their insurance company was telling me I had to. My employer had never heard of that before and their first reaction was that I shouldn't seek other employment. They then spent two weeks researching. They came back to tell me that since it's the insurance company who's paying me, I have to do what they want me to.
I post this to show that, once again, there is no set process. My employer had no idea what their insurance company was doing. Private disability insurance is a murky world with now set rules. It's all a negotiation. Usually this works in favor of the insurance company. Those of us with real disabilities have to figure out how to turn the murky world they've built to our advantage.
I recently had a conversation with my "employer" (they don't pay me anymore, their insurance company does) of over a decade. They told me that I'm still employed and that I can be fired for violations of the handbook. I asked them if I'm allowed to seek other employment and they said that I wasn't. I pointed out to them that their insurance company was telling me I had to. My employer had never heard of that before and their first reaction was that I shouldn't seek other employment. They then spent two weeks researching. They came back to tell me that since it's the insurance company who's paying me, I have to do what they want me to.
I post this to show that, once again, there is no set process. My employer had no idea what their insurance company was doing. Private disability insurance is a murky world with now set rules. It's all a negotiation. Usually this works in favor of the insurance company. Those of us with real disabilities have to figure out how to turn the murky world they've built to our advantage.
Thursday, December 3, 2015
It's Complicated
Going back to college is a complicated business. It's a massive project. Submitting the application was the easiest part. The State is willing to pay for me to go back to school as long as I'm a full time student (12 hours or more) and I have a decision on financial aid.
Booking 12 hours is harder than I expected. I have a college degree from the university I'm going back to. This means they waived all my general education requirements. That means I don't need to take filler elective classes. Yeah! But in my major, I'm a freshman because I haven't taken any of the prerequisites. The end result is I can't sign up for the majority of classes in my major until I get take the base level courses. And they're all booked for the spring semester!
It's a perfect storm of suck. My long suffering adviser has been helping me petition professors to get into their classes. So far I'm up to 7 credit hours. The State won't give me any money until I can show them a schedule with 12. I want to buy my books and start trying to read them but not until I know I can expense them. I can't read them either. I need help from disability services for that. To work with disability services, I've sent a form to my eye doctor to prove to the college that I should get their services. Until then they won't even meet with me. The request has been sent but no progress.
On the transportation front, I've worked out a ride to the school. I live outside of the city limits so the city special transportation won't pick me up. I think the city will bring me home, at least part way. I won't know how far the city will take me until I actually try to book a trip.
On the financial aid front, my request has been submitted and acknowledged but no word. I just need a response. Deny me or accept me, just give me an answer!
There are a lot of moving parts here. A lot to go wrong. But I'm hopeful it will all work out before January.
Booking 12 hours is harder than I expected. I have a college degree from the university I'm going back to. This means they waived all my general education requirements. That means I don't need to take filler elective classes. Yeah! But in my major, I'm a freshman because I haven't taken any of the prerequisites. The end result is I can't sign up for the majority of classes in my major until I get take the base level courses. And they're all booked for the spring semester!
It's a perfect storm of suck. My long suffering adviser has been helping me petition professors to get into their classes. So far I'm up to 7 credit hours. The State won't give me any money until I can show them a schedule with 12. I want to buy my books and start trying to read them but not until I know I can expense them. I can't read them either. I need help from disability services for that. To work with disability services, I've sent a form to my eye doctor to prove to the college that I should get their services. Until then they won't even meet with me. The request has been sent but no progress.
On the transportation front, I've worked out a ride to the school. I live outside of the city limits so the city special transportation won't pick me up. I think the city will bring me home, at least part way. I won't know how far the city will take me until I actually try to book a trip.
On the financial aid front, my request has been submitted and acknowledged but no word. I just need a response. Deny me or accept me, just give me an answer!
There are a lot of moving parts here. A lot to go wrong. But I'm hopeful it will all work out before January.
Wednesday, October 14, 2015
Clear As Mud
The world of SSDI and Long Term Disability is murky. The only way I've been able to figure it out is to live it. I spent much of the past twenty years in project management and it's very frustrating how complicated this system is. It resists understanding because the insurance companies involved don't want anyone to understand the system. Neither do the lawyers. Their incentives are to hide information.
The situation I'm in now has so far resisted understanding without doing. I am currently on SSDI from the government. That's great news. I'm also on LTD from my employer's disability insurance company. The two provide me with 60% of my former salary. I worked for my employer for 14 years and left them on good terms.
Since I went out on disability three years ago, my LTD insurance company has been pushing me to get an evaluation for vocational rehab. They've made it clear they'd be happy if I did any job. I worked as an IT manager. They'd be fine if I worked at Wal-Mart or Taco Bell. If I understand them correctly, they're trying to make me feel so insulted that I'd walk before I took a job like that. Meanwhile, I am a stay at home Dad and don't want to leave my kids for minimum wage.
So we're in a position of trying to out maneuver each other. They've forced my hand and now I'm going to my state's vocational rehab center for the blind and visually impaired. Fine. Here are the question I can't figure out:
1) Can my LTD company make me take a job above the SSDI threshold? Can they make me lose my SSDI?
2)If I get a job that pays below the SSDI cutoff, do they then cut my LTD benefits by the amount I'll make?
3)What level of income (below SSDI threshold) is acceptable? Do I have to max out my earnings?
So far this is clear as mud. And stressful as hell.
The situation I'm in now has so far resisted understanding without doing. I am currently on SSDI from the government. That's great news. I'm also on LTD from my employer's disability insurance company. The two provide me with 60% of my former salary. I worked for my employer for 14 years and left them on good terms.
Since I went out on disability three years ago, my LTD insurance company has been pushing me to get an evaluation for vocational rehab. They've made it clear they'd be happy if I did any job. I worked as an IT manager. They'd be fine if I worked at Wal-Mart or Taco Bell. If I understand them correctly, they're trying to make me feel so insulted that I'd walk before I took a job like that. Meanwhile, I am a stay at home Dad and don't want to leave my kids for minimum wage.
So we're in a position of trying to out maneuver each other. They've forced my hand and now I'm going to my state's vocational rehab center for the blind and visually impaired. Fine. Here are the question I can't figure out:
1) Can my LTD company make me take a job above the SSDI threshold? Can they make me lose my SSDI?
2)If I get a job that pays below the SSDI cutoff, do they then cut my LTD benefits by the amount I'll make?
3)What level of income (below SSDI threshold) is acceptable? Do I have to max out my earnings?
So far this is clear as mud. And stressful as hell.
Tuesday, October 13, 2015
Handicap Bathroom Hell
I'm visually impaired and use a white cane. Disabled bathrooms have been built at great cost and I'm often directed to use them over traditional bathrooms. Probably to help justify their expense. Most handicapped bathrooms are setup for people in wheelchairs, which is fine. It's just that the visually impaired often don't do well in rooms designed for wheelchairs.
Once, during jury duty, I was led to the handicapped bathroom. I walked in and the lights were off. It took me a while to figure out where the switch was located because it had been lowered to the level of a wheelchair. I kept turning around in the dark until I found it. When I got up from the toilet, I stood up straight, like a person who can walk. I gouged my back on a jacket hook that had been placed at low level behind the the toilet.
After finishing, I took a step and bruised my thigh on the corner of a sink, which was much lower than expected. After recovering, I tried to clean my glasses in the automatic faucet but it wouldn't stay on long enough to get my glasses wet. Then I couldn't find the towel dispenser. I left the bathroom disgruntled and in pain. The officer who had accompanied me asked how I liked their new handicapped bathroom. I told him it was "fine."
On another occasion I was in Paris waiting in line for a bathroom and an attendant grabbed me and led me to the front of the line to the handicapped bathroom. I could tell everyone hated me for cutting them. I had been happy waiting in line like everyone else. I did my business and went to flush the toilet. In France, the toilets don't have a consistent flush mechanism position. It can be on top of the toilet, on the side, on the wall. Any wall. I spent more time trying to figure out where the button was than I had taken using the bathroom. The attendant came back to check on me. I was holding up the line. But there was no way I was going to leave the bathroom unflushed. I eventually found the button on the wall beside the toilet.
There's some dark humor about these scenes that even I can appreciate. It's just further proof that a one size does not fit all approach when it comes to disabled bathrooms.
Once, during jury duty, I was led to the handicapped bathroom. I walked in and the lights were off. It took me a while to figure out where the switch was located because it had been lowered to the level of a wheelchair. I kept turning around in the dark until I found it. When I got up from the toilet, I stood up straight, like a person who can walk. I gouged my back on a jacket hook that had been placed at low level behind the the toilet.
After finishing, I took a step and bruised my thigh on the corner of a sink, which was much lower than expected. After recovering, I tried to clean my glasses in the automatic faucet but it wouldn't stay on long enough to get my glasses wet. Then I couldn't find the towel dispenser. I left the bathroom disgruntled and in pain. The officer who had accompanied me asked how I liked their new handicapped bathroom. I told him it was "fine."
On another occasion I was in Paris waiting in line for a bathroom and an attendant grabbed me and led me to the front of the line to the handicapped bathroom. I could tell everyone hated me for cutting them. I had been happy waiting in line like everyone else. I did my business and went to flush the toilet. In France, the toilets don't have a consistent flush mechanism position. It can be on top of the toilet, on the side, on the wall. Any wall. I spent more time trying to figure out where the button was than I had taken using the bathroom. The attendant came back to check on me. I was holding up the line. But there was no way I was going to leave the bathroom unflushed. I eventually found the button on the wall beside the toilet.
There's some dark humor about these scenes that even I can appreciate. It's just further proof that a one size does not fit all approach when it comes to disabled bathrooms.
Thursday, October 8, 2015
Don't Pretend
My disability insurance company called yesterday. Their vocational rehab coordinator wanted to make sure that the State had scheduled me for an evaluation. I told her that they had. She then launched into a long winded, chipper, explanation about how great vocational rehab will be in helping me learn new skills and get a new job.
I told her that I'd been dealing with my disability for sixteen years and I doubted there was adaptive technology that I didn't know about. What I wanted to tell her was, "Stop pretending this is for my benefit! You're forcing me to attend rehab in hopes that you'll move me off your books." That's it. That's all this is about - money.
My insurance company knows that, as a white collar worker for the better part of two decades, I'd rather die than go work a job I consider beneath my dignity. I'm not calling out people who have those jobs, especially not visually impaired and blind people. I just can't do it. My insurance company wants to force me to a decision point where I turn down 23 years of future payouts because I won't humble myself to work at Taco Bell.
In the meantime, SSDI is paying me specifically to be a caretaker to my children. My insurance company wants me to take part of my meager funds to have someone else watch my kids. Money that I won't make up working.
I have no idea how these people sleep at night.
I told her that I'd been dealing with my disability for sixteen years and I doubted there was adaptive technology that I didn't know about. What I wanted to tell her was, "Stop pretending this is for my benefit! You're forcing me to attend rehab in hopes that you'll move me off your books." That's it. That's all this is about - money.
My insurance company knows that, as a white collar worker for the better part of two decades, I'd rather die than go work a job I consider beneath my dignity. I'm not calling out people who have those jobs, especially not visually impaired and blind people. I just can't do it. My insurance company wants to force me to a decision point where I turn down 23 years of future payouts because I won't humble myself to work at Taco Bell.
In the meantime, SSDI is paying me specifically to be a caretaker to my children. My insurance company wants me to take part of my meager funds to have someone else watch my kids. Money that I won't make up working.
I have no idea how these people sleep at night.
Tuesday, October 6, 2015
Canes and Crazies
Back in June, I traveled to Chicago and went to Millennium Park. At one point my friend left me on a sidewalk to seek out a restroom. So I stood there with my cane. Literally hundreds of people passed by. Several of them made comments about me. Hey guys, I'm visually impaired, not deaf. Many even pointed at me like I was a zoo animal. Not really a big deal or anything I'm not used to.
Eventually a group of people came up to me. They were dressed alike in matching t-shirts. I could see that much but not the logo. Their leader, a young guy, asked me a very strange question. "What is going on here?" His tome was accusatory.
His question totally caught me off guard. I've had people get into my face before for "faking being blind," and that's what I thought he was saying. My reply back to him was pretty harsh. "None of your business!"
The guy put his hands up and said something like, "No offense. We're just out there looking for people to pray with. Can we pray with you about your eyes?" I don't care what your religion is, that's just rude. I told them to take a hike.
Eventually a group of people came up to me. They were dressed alike in matching t-shirts. I could see that much but not the logo. Their leader, a young guy, asked me a very strange question. "What is going on here?" His tome was accusatory.
His question totally caught me off guard. I've had people get into my face before for "faking being blind," and that's what I thought he was saying. My reply back to him was pretty harsh. "None of your business!"
The guy put his hands up and said something like, "No offense. We're just out there looking for people to pray with. Can we pray with you about your eyes?" I don't care what your religion is, that's just rude. I told them to take a hike.
Canes and Cruises
Back in July, we went on our first cruise. It departed from Vancouver and went up the Inside Passage and through the panhandle of Alaska. It was amazing and inspiring. For the purposes of this blog, I want to talk about the reactions I got while using my cane on a cruise ship.
I think there were over two thousand passengers on the ship and a couple of other people using canes. I was using my cane on a staircase and passed one of the other cane users. I heard a Father lean over to his daughter and ask in a loud whisper, "why do they think they need those sticks on this ship?" Not sure what he even meant by that. That the ship was a safe environment so canes aren't unnecessary? Or something more judgemental? As rude comments about my cane go, it was pretty minor.
Later on, I was walking through part of the outside deck that doubles as a track. A teenager was jogging towards me and I moved out of her way. Her father chased her down and yelled at her for not looking out for me. It was odd to me because I'd obviously gotten out of her way without issue. I felt bad for her.
In general, the people on the curse ship seemed pretty rude. I'll compare how they treated me using an airport as a control. In a busy airport, people will get out of my way, help if I need it. On the cruise ship, everyone was on vacation and didn't seem to care about politeness. They'd run into me and just keep going. I'd hit them with my cane on accident and they'd get upset. Cruise ships are a tough crowd.
I've said it before, using a cane is an ongoing sociology experiment. Cane users have to put up with people's need to help you and their preconceived ideas. They often don't understand the half-sighted world. As a visually impaired person, I end up having to educate people even though I hate having to do it and don't want that role. Such is the life for the VIP.
I think there were over two thousand passengers on the ship and a couple of other people using canes. I was using my cane on a staircase and passed one of the other cane users. I heard a Father lean over to his daughter and ask in a loud whisper, "why do they think they need those sticks on this ship?" Not sure what he even meant by that. That the ship was a safe environment so canes aren't unnecessary? Or something more judgemental? As rude comments about my cane go, it was pretty minor.
Later on, I was walking through part of the outside deck that doubles as a track. A teenager was jogging towards me and I moved out of her way. Her father chased her down and yelled at her for not looking out for me. It was odd to me because I'd obviously gotten out of her way without issue. I felt bad for her.
In general, the people on the curse ship seemed pretty rude. I'll compare how they treated me using an airport as a control. In a busy airport, people will get out of my way, help if I need it. On the cruise ship, everyone was on vacation and didn't seem to care about politeness. They'd run into me and just keep going. I'd hit them with my cane on accident and they'd get upset. Cruise ships are a tough crowd.
I've said it before, using a cane is an ongoing sociology experiment. Cane users have to put up with people's need to help you and their preconceived ideas. They often don't understand the half-sighted world. As a visually impaired person, I end up having to educate people even though I hate having to do it and don't want that role. Such is the life for the VIP.
Monday, October 5, 2015
Heathrow Cracks Down on Disabled
On a recent trip to France, I had to go through London's Heathrow airport. What a disaster that place is for disabled people. If you don't want help. The way assistance works at airports is that if you want assistance, you request it on your plane ticket. I never do that. During my flight, British Airways radioed Heathrow to tell them I needed assistance. So when I got off a plane they put me on a cart and drove me under the terminals in tunnels that look right out of a Doctor Who episode. The cart certainly made my trip faster. But I didn't actually require it.
After customs, I was led to a disabled waiting room. My next flight had yet to be assigned a gate. My plane ticket was taken by a Heathrow rep and I was told to wait until I could be assisted to my gate. I was really uncomfortable by this point. I hadn't requested help and now my plane ticket had been taken. I wanted to go shopping, get a coffee. It was 1AM to me and I was tired and confused about what was going on. Maybe I could have demanded my ticket back and left. At the time, it felt like I'd been locked up for my own protection. Eventually, one of my brother's texted me and I told him to come fetch me. I felt embarrassed and incapable when my brothers showed up to rescue me.
My treatment reminded me of being a tourist in London a few years ago. I went to the Tower Bridge with my brother. The attendant wouldn't let my brother pay because he was my "caretaker." Which is so insulting. My reaction to her was that no, I'm his caretaker. Oddly, he got in free but I had to pay. There's just something off with how disabled people are treated in the UK.
A week later, I was more prepared for my connecting flight through Heathrow. I learned the magic words to tell British Airways to leave me alone, "I'm traveling with family." So there was no one at the airport prepped to fetch me. I did have to turn down help from all the staff I met, which was annoying. I was able to get on a bus and make my way to Terminal 5, without help, thank you very much. I made my way to security where everything went pear shaped. Security refused to let me into the terminal without an escort. They actually told me that it was against policy for a blind person to walk through the terminal unassisted. That struck me as probably not true but I didn't have a choice. The guard took himself off the line to "assist" me. How many passengers were delayed because he was gone? Who wasn't assisted who needed it more than me?
Over the next hour, the security guard acted as my personal Sherpa. He helped me pick out a toy for my son. We went to the pharmacy. He carried my shopping bags. And I made him follow me into a pub and wait with me while I drank a pint. He was a nice guy and we had a frank conversation about disability. I told him that while in France, or Canada or the US, if I needed help I could request it. If I told the staff that I could do it, I was left alone. At Heathrow, it was assumed that I couldn't do anything and it was hard not to be insulted by that. My minder told me to send Heathrow an email.
After I got home, I sent that email to Heathrow. A representative from BAA plc, the company that runs Heathrow, contacted me. He asked me what the best time to reach me would be. I replied with times and my email was bounced back by BAA's servers has a violation of their email policy. You can't make this stuff up. BAA eventually got a hold of me on the phone. The rep apologized and said that my treatment at Heathrow was a violation of their policy. As I had suspected, the disability policy had been put together with the assistance of blind organizations in the UK. Self determination for the disabled is specific part of their policy that the staff had received training on. As soon as I told them that I wanted to be left alone, that's exactly what they should have done.
I told the rep that if you tell a disabled person that they can't do something because of their disability, that's a form of discrimination. The rep agreed and told me to contact him next time I'm flying through Heathrow. Which doesn't sound like much of a policy. He did say that he'd be contacting the "contractors" in Terminal 5 about my treatment. The management at BAA and the staff are clearly working on different incentives.
There have been several scandals in the past couple of years over the poor treatment of disabled persons at Heathrow. I suspect the staff is more afraid of their line managers seeing a blind person unassisted than they are in following their policy. They were trying to head off scandal by helping me, whether I want help or not. The staff needs to be corrected. The reason why airports rely upon the self reporting system for assistance is that there are almost always more people that need help that staff available. The system breaks down if people who don't want assistance have it forced on them. At the same time, I don't want my story to cause other people not to be helped who need it.
I posted my story to the United Kingdom forum on Reddit. The reaction was typical Reddit in someways. I got a lot of criticism for being a fat, ugly American. For being spoiled and ungrateful. They missed the point that in requesting to be left alone, I'm freeing the staff to help someone else who actually needs it. Also they didn't understand the emotional impact that being treated like a child has on someone with a disability.
After customs, I was led to a disabled waiting room. My next flight had yet to be assigned a gate. My plane ticket was taken by a Heathrow rep and I was told to wait until I could be assisted to my gate. I was really uncomfortable by this point. I hadn't requested help and now my plane ticket had been taken. I wanted to go shopping, get a coffee. It was 1AM to me and I was tired and confused about what was going on. Maybe I could have demanded my ticket back and left. At the time, it felt like I'd been locked up for my own protection. Eventually, one of my brother's texted me and I told him to come fetch me. I felt embarrassed and incapable when my brothers showed up to rescue me.
My treatment reminded me of being a tourist in London a few years ago. I went to the Tower Bridge with my brother. The attendant wouldn't let my brother pay because he was my "caretaker." Which is so insulting. My reaction to her was that no, I'm his caretaker. Oddly, he got in free but I had to pay. There's just something off with how disabled people are treated in the UK.
A week later, I was more prepared for my connecting flight through Heathrow. I learned the magic words to tell British Airways to leave me alone, "I'm traveling with family." So there was no one at the airport prepped to fetch me. I did have to turn down help from all the staff I met, which was annoying. I was able to get on a bus and make my way to Terminal 5, without help, thank you very much. I made my way to security where everything went pear shaped. Security refused to let me into the terminal without an escort. They actually told me that it was against policy for a blind person to walk through the terminal unassisted. That struck me as probably not true but I didn't have a choice. The guard took himself off the line to "assist" me. How many passengers were delayed because he was gone? Who wasn't assisted who needed it more than me?
Over the next hour, the security guard acted as my personal Sherpa. He helped me pick out a toy for my son. We went to the pharmacy. He carried my shopping bags. And I made him follow me into a pub and wait with me while I drank a pint. He was a nice guy and we had a frank conversation about disability. I told him that while in France, or Canada or the US, if I needed help I could request it. If I told the staff that I could do it, I was left alone. At Heathrow, it was assumed that I couldn't do anything and it was hard not to be insulted by that. My minder told me to send Heathrow an email.
After I got home, I sent that email to Heathrow. A representative from BAA plc, the company that runs Heathrow, contacted me. He asked me what the best time to reach me would be. I replied with times and my email was bounced back by BAA's servers has a violation of their email policy. You can't make this stuff up. BAA eventually got a hold of me on the phone. The rep apologized and said that my treatment at Heathrow was a violation of their policy. As I had suspected, the disability policy had been put together with the assistance of blind organizations in the UK. Self determination for the disabled is specific part of their policy that the staff had received training on. As soon as I told them that I wanted to be left alone, that's exactly what they should have done.
I told the rep that if you tell a disabled person that they can't do something because of their disability, that's a form of discrimination. The rep agreed and told me to contact him next time I'm flying through Heathrow. Which doesn't sound like much of a policy. He did say that he'd be contacting the "contractors" in Terminal 5 about my treatment. The management at BAA and the staff are clearly working on different incentives.
There have been several scandals in the past couple of years over the poor treatment of disabled persons at Heathrow. I suspect the staff is more afraid of their line managers seeing a blind person unassisted than they are in following their policy. They were trying to head off scandal by helping me, whether I want help or not. The staff needs to be corrected. The reason why airports rely upon the self reporting system for assistance is that there are almost always more people that need help that staff available. The system breaks down if people who don't want assistance have it forced on them. At the same time, I don't want my story to cause other people not to be helped who need it.
I posted my story to the United Kingdom forum on Reddit. The reaction was typical Reddit in someways. I got a lot of criticism for being a fat, ugly American. For being spoiled and ungrateful. They missed the point that in requesting to be left alone, I'm freeing the staff to help someone else who actually needs it. Also they didn't understand the emotional impact that being treated like a child has on someone with a disability.
Macular Edema
In July I was diagnosed with macular edema. It's a rare side effect of RP. Macular edema was causing my remaining central vision to get blurry. It's like having RP and macular degeneration at the same time. From a personal standpoint it made my vision much more sensitive to bright lights and unpredictable.
My doctor talked to me about the standard treatment - a shot of cortisone to the back of the eye. The side effects of this treatment include a 30% chance of developing glaucoma. So I have an eye disease, RP, that causes blindness. RP has caused a condition, macular edema, which can cause blindness. Macular edema has a treatment which can cause glaucoma, which can cause blindness. Also, blindness.
So we decided not to do the shot just yet. Instead we started an off label treatment; cortisone eye drops. The drops hurt a lot and I wasn't great at taking them because of all the travel I've been up to. Fast forward two months and my vision has improved. I'm not as sensitive to bright lights and I've regained a line of acuity on the eye chart. Great news. So I'm going to do another two month round of the painfully suckers. I hope we can wipe macular edema out this time.
So I'm left with something I almost never get. Good news from the eye doctor.
My doctor talked to me about the standard treatment - a shot of cortisone to the back of the eye. The side effects of this treatment include a 30% chance of developing glaucoma. So I have an eye disease, RP, that causes blindness. RP has caused a condition, macular edema, which can cause blindness. Macular edema has a treatment which can cause glaucoma, which can cause blindness. Also, blindness.
So we decided not to do the shot just yet. Instead we started an off label treatment; cortisone eye drops. The drops hurt a lot and I wasn't great at taking them because of all the travel I've been up to. Fast forward two months and my vision has improved. I'm not as sensitive to bright lights and I've regained a line of acuity on the eye chart. Great news. So I'm going to do another two month round of the painfully suckers. I hope we can wipe macular edema out this time.
So I'm left with something I almost never get. Good news from the eye doctor.
Tuesday, April 28, 2015
Vocational Rehab
It's going to be an interesting week. I've been on long term disability for the past two years because of vision. My employer's insurance company is sending me to get evaluated by my state's Services for the Blind this week. I'm not against working, I just don't want to end up in a job that I'd hate. Just because I'm blind doesn't mean I have to be miserable, right?
Some people think everyone who's on disability and not working any level job is a deadbeat. I think that's insane. I raise children. This allows my wife to work. There's a whole lot of value to be brought to the world that doesn't include working for minimum wage. How much is happiness worth? I guess I'm going to find out.
Some people think everyone who's on disability and not working any level job is a deadbeat. I think that's insane. I raise children. This allows my wife to work. There's a whole lot of value to be brought to the world that doesn't include working for minimum wage. How much is happiness worth? I guess I'm going to find out.
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