School starts on Monday! Can't believe this is happening. I didn't even know this was a possibility until October of of 2015. It has been a bit of an effort to get the Division of the Blind to communicate with the State university I'm going to. They finally paid my tuition so I can start. But I still don't have my books.
Transportation is going to be interesting. My wife will drive me to school in the morning. The afternoon is going to be complicated. I live in a suburb. The city disabled transportation will drop me off close to the house but not at my house. I suspect I'll have to take Uber the rest of the way.
I'm excited. A little nervous. I meet with on campus disabled services tomorrow to see what they can do for me.
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Wednesday, January 6, 2016
Losing Well Part 22
Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
2013 was my first full year on disability. But it didn’t really feel like my time was idle. I was raising kids, doing housework, helping with homework. It was a busy time. I didn’t find it as intellectually challenging as work. I also didn’t find it as stressful.
Kate’s consulting business started to take off. She was able to make up most of the family income that I’d lost by going on disability. And she seemed a lot happier to be working than staying at home. She’d gotten bored and now she was working for herself. I was a bit envious.
My LTD insurance agent had been telling me that I had nothing to worry about. I’d cleared the investigation. At 18 months I’d be put onto “long term maintenance.” So I wasn’t too worried about my finances. I was amazed that they had spent so much money on my case. I guess they'd been hoping to catch me driving a car. I'm dumb not suicidal.
April 9, 2014
I was using my cane and somebody stopped to ask me driving directions. How desperate are you? But I was able to give directions.
May 23, 2014
Upon request of my medical physician, I went to an Urgent Care to get a Tetanus shot for a minor cut on my leg. I totally didn’t see that metal can. I should always use my cane. Arrogance will give you lockjaw.
July 11, 2014
Some loser came at me with a four letter tirade about how I shouldn't fake being blind. I didn't take it well. I thought he was going to sucker punch me. These guys are always the same. And the older I get the less patience I have.
December 2015
In July of 2014 I was told that I had a new LTD agent. He told me that he that my vote to go onto long term maintenance wasn't a sure thing. He was reviewing my case and everything was back on the table. This was not welcome news. It threw everything back into flux.
August 4, 2014
My new agent just told me that "If I had your skill set I would have found a way to adapt to losing my vision." An interesting way to try and shame me for my disability.
August 15, 2014
Appointment made to get new glasses to replace broken pair. Kids + disability = expensive.
December 2015
In September of 2014, my agent called to tell me that there had been a round table vote on if I would go on long term maintenance. He said there was one vote against - the vocational rehab case worker thought I should still be able to work. This contradicted a written statement from my Retina Specialist Ophthalmologist. She apparently knew more than my eye doctor.
The way my insurance policy was written, I had to prove that I couldn’t do any job, not just prove I couldn’t do the job I was working. In theory this meant my insurance company could force me to work at a fast food restaurant. My agent told me that if the vocational rehab coordinator could find a job for me within a sixty mile radius of my home, they’d cut me if I didn’t apply for it. My response was to ask them what job they thought I could work. He couldn’t name one. Then I asked him how I’d get to the job. He said the way the contract was written, transportation isn’t a consideration. Transportation and childcare would be my expense. Even if I was working a minimum wage job. There’s no way I could afford to get a job.
September 12, 2014
The ERSIA [Employee Retirement Income Security Act] lawyer I spoke to today said that of all the people he's spoken to this week, I'm the one he thinks won't have any problem. He told me not to comply with my insurance company requests unless they were in writing.
October 8, 2014
Got a letter today that indicated my insurance company has been accessing my general health medical history. I’d told them not to back in 2012. The letter indicates that they had been violating my HIPPA rights for the past 11 months. When I called, they stated they had not been and that the letter was sent in error. Because they’re so trustworthy, I believe them.
Part 23 can be found here.
December 2015
2013 was my first full year on disability. But it didn’t really feel like my time was idle. I was raising kids, doing housework, helping with homework. It was a busy time. I didn’t find it as intellectually challenging as work. I also didn’t find it as stressful.
Kate’s consulting business started to take off. She was able to make up most of the family income that I’d lost by going on disability. And she seemed a lot happier to be working than staying at home. She’d gotten bored and now she was working for herself. I was a bit envious.
My LTD insurance agent had been telling me that I had nothing to worry about. I’d cleared the investigation. At 18 months I’d be put onto “long term maintenance.” So I wasn’t too worried about my finances. I was amazed that they had spent so much money on my case. I guess they'd been hoping to catch me driving a car. I'm dumb not suicidal.
April 9, 2014
I was using my cane and somebody stopped to ask me driving directions. How desperate are you? But I was able to give directions.
May 23, 2014
Upon request of my medical physician, I went to an Urgent Care to get a Tetanus shot for a minor cut on my leg. I totally didn’t see that metal can. I should always use my cane. Arrogance will give you lockjaw.
July 11, 2014
Some loser came at me with a four letter tirade about how I shouldn't fake being blind. I didn't take it well. I thought he was going to sucker punch me. These guys are always the same. And the older I get the less patience I have.
December 2015
In July of 2014 I was told that I had a new LTD agent. He told me that he that my vote to go onto long term maintenance wasn't a sure thing. He was reviewing my case and everything was back on the table. This was not welcome news. It threw everything back into flux.
August 4, 2014
My new agent just told me that "If I had your skill set I would have found a way to adapt to losing my vision." An interesting way to try and shame me for my disability.
August 15, 2014
Appointment made to get new glasses to replace broken pair. Kids + disability = expensive.
December 2015
In September of 2014, my agent called to tell me that there had been a round table vote on if I would go on long term maintenance. He said there was one vote against - the vocational rehab case worker thought I should still be able to work. This contradicted a written statement from my Retina Specialist Ophthalmologist. She apparently knew more than my eye doctor.
The way my insurance policy was written, I had to prove that I couldn’t do any job, not just prove I couldn’t do the job I was working. In theory this meant my insurance company could force me to work at a fast food restaurant. My agent told me that if the vocational rehab coordinator could find a job for me within a sixty mile radius of my home, they’d cut me if I didn’t apply for it. My response was to ask them what job they thought I could work. He couldn’t name one. Then I asked him how I’d get to the job. He said the way the contract was written, transportation isn’t a consideration. Transportation and childcare would be my expense. Even if I was working a minimum wage job. There’s no way I could afford to get a job.
September 12, 2014
The ERSIA [Employee Retirement Income Security Act] lawyer I spoke to today said that of all the people he's spoken to this week, I'm the one he thinks won't have any problem. He told me not to comply with my insurance company requests unless they were in writing.
October 8, 2014
Got a letter today that indicated my insurance company has been accessing my general health medical history. I’d told them not to back in 2012. The letter indicates that they had been violating my HIPPA rights for the past 11 months. When I called, they stated they had not been and that the letter was sent in error. Because they’re so trustworthy, I believe them.
Part 23 can be found here.
Losing Well Part 21
Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
Spring of 2013. After six months, I moved from short term disability to long term disability and my insurance company requested that I signup for Social Security Disability. They paid for an outside firm to help submit my application. It normally takes two years to get approved for SSDI. My application was approved in 29 days. The government doesn't seem to see the need to fight visual impairment like they would other disabilities. It’s just a measurement to them.
My case worker from the Social Security Administration called and said that I should have my payments changed over into my wife’s name. I have no idea why she thought this was a good idea but I refused. The case worker seemed pretty upset that I didn’t do what they had told me. Story of my life, get in line. She then asked if I was the head of house. I told them I was. They said I could get money for my kids and I should submit an application for them. I sighed and told them to look at their computer because that application had already been submitted. Two weeks later my children’s application was approved.
My insurance policy with the bank said I should make 60% of my former salary plus bonuses. After SSDI. In reality, my state didn’t count my SSDI as income. This meant I made more like 70% of my former salary. Here ’s how my income would breakout over time, assuming I made $1,000 a year:
$280 - SSDI
$140 - SSDI for my children
$230 - LTD Insurance Policy
Total = $650
As my children turned 18 they would stop getting SSDI so my income would look like this:
$280 SSDI
$370 LTD insurance Policy
Total = $650
And when I turned 65 my income would drop to just the $280 SSDI. This assumes I could maintain LTD payments from my insurance company, Something they were going to fight me on shamelessly.
The loss of 30% my income was a huge blow at first. Kate had been a stay at home mother for four years. After I went on disability, she went back to work. We effectually switched roles. I was now a stay at home Dad and she was working. But because of my insurance and SSDI, I was still he breadwinner. It was a strange situation.
July 4, 2013
A year ago today I noticed new eye problems that my surgeon later told me he couldn't correct. This set me on a new path.
July 15, 2013
Made another optical tech cry after my visual field test. The doctor should really warn them about me!
September 26, 2013
Going on disability was the right decision but walking away from my team goes against everything I know. It hurt my soul. The logic of the mind eats away at the decisions it made for itself. I miss work. I miss the prestige. I miss the action. I miss the thrill. I don't miss all the conference calls.
When I was working I was headed to an early grave. All the calories to jack me up to have my head in the game. Then not having time to work out or eat right. It created a circle of failure. Walking away from work broke the cycle. And probably saved me from a heart attack.
December 11, 2013
LTD Insurance company just called to tell me they've been Googling my activities. Guess it's their way of wishing me happy holidays. I hope they have video of me walking into the occasional tree. That happens all too frequently.
December 14, 2013
Blind man runs into wheelchair.
Part 22 is here.
December 2015
Spring of 2013. After six months, I moved from short term disability to long term disability and my insurance company requested that I signup for Social Security Disability. They paid for an outside firm to help submit my application. It normally takes two years to get approved for SSDI. My application was approved in 29 days. The government doesn't seem to see the need to fight visual impairment like they would other disabilities. It’s just a measurement to them.
My case worker from the Social Security Administration called and said that I should have my payments changed over into my wife’s name. I have no idea why she thought this was a good idea but I refused. The case worker seemed pretty upset that I didn’t do what they had told me. Story of my life, get in line. She then asked if I was the head of house. I told them I was. They said I could get money for my kids and I should submit an application for them. I sighed and told them to look at their computer because that application had already been submitted. Two weeks later my children’s application was approved.
My insurance policy with the bank said I should make 60% of my former salary plus bonuses. After SSDI. In reality, my state didn’t count my SSDI as income. This meant I made more like 70% of my former salary. Here ’s how my income would breakout over time, assuming I made $1,000 a year:
$280 - SSDI
$140 - SSDI for my children
$230 - LTD Insurance Policy
Total = $650
As my children turned 18 they would stop getting SSDI so my income would look like this:
$280 SSDI
$370 LTD insurance Policy
Total = $650
And when I turned 65 my income would drop to just the $280 SSDI. This assumes I could maintain LTD payments from my insurance company, Something they were going to fight me on shamelessly.
The loss of 30% my income was a huge blow at first. Kate had been a stay at home mother for four years. After I went on disability, she went back to work. We effectually switched roles. I was now a stay at home Dad and she was working. But because of my insurance and SSDI, I was still he breadwinner. It was a strange situation.
July 4, 2013
A year ago today I noticed new eye problems that my surgeon later told me he couldn't correct. This set me on a new path.
July 15, 2013
Made another optical tech cry after my visual field test. The doctor should really warn them about me!
September 26, 2013
Going on disability was the right decision but walking away from my team goes against everything I know. It hurt my soul. The logic of the mind eats away at the decisions it made for itself. I miss work. I miss the prestige. I miss the action. I miss the thrill. I don't miss all the conference calls.
When I was working I was headed to an early grave. All the calories to jack me up to have my head in the game. Then not having time to work out or eat right. It created a circle of failure. Walking away from work broke the cycle. And probably saved me from a heart attack.
December 11, 2013
LTD Insurance company just called to tell me they've been Googling my activities. Guess it's their way of wishing me happy holidays. I hope they have video of me walking into the occasional tree. That happens all too frequently.
December 14, 2013
Blind man runs into wheelchair.
Part 22 is here.
Thursday, December 31, 2015
Losing Well Part 20
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.
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.
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.
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.
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.
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.
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.
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.
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