I was updating the blog regularly until I went to school. There was just no way to keep it up after that. School was pretty hard for a variety of reasons. Mostly because I can't see very well and it took me a long time to keep up. I did end the semester on the Dean's list, which feels impossibly amazing.
As far as my disability, my macular edema has convinced my LTD insurance company in ways my RP never could. I guess they just understood macular edema better than RP. They told me I've been moved to long term maintenance. They aren't exactly trustworthy but that sounds better than the short term harassment policy they had me on.
Last year I got to travel, this year I went back to school and did well. What am amazing 12 months. Life and visual impairment don't have to suck.
Tuesday, June 14, 2016
Friday, March 4, 2016
School Update
It’s spring break which means I can finally come up for a breath and reflect on what’s been going on. Going back to school has been tough, time consuming, enlightening, and interesting. But not very enjoyable.
I last went to college in 1996. Since then, things have, um, changed. If you wore headphones in public twenty years ago, you were square. Now everyone does. Computers were mostly used in labs and laptops were rare and not allowed in class. Citing the internet would get you laughed at. In general, students treated professors with more respect. I’ve been surprised by the amount of arguing, talking, phone using, tardiness, and leaving early the students do. The older the students are, the less this behavior is evident. So it doesn’t happen nearly as much is my senior level classes. I guess the students either mature or leave.
For the most part, the students have shown no interest in my disability. I’m stared at a lot but rarely asked questions. One class took us on a surprise field trip to a garden on campus. I quickly fell behind. In a class of over 70 students, only one noticed, or cared notice, and came back to help me catch up. I will say, I’ve gotten to know my lab partners pretty well and they’re nice, smart and friendly. They’re all surprised when they find out my age. They mostly assume I’m around 30.
This is my first time being a disabled student. I get caught in some tough situation. Professors like to use Powerpoints with the lights off, which makes it impossible for me to take notes. Or an open note quiz is really a reading test for me because I can only see one word for every five a normal person can. Open note quizzes are just quizzes for me. When I have time to do assignments, papers or projects, I usually do pretty well.
Personally, I’m not as fast as I was twenty years ago. I make up for that, I think, with better attention to detail, organization and commitment. Because I transferred in with a degree, I’m taking only major classes, all science. When the labs are added, I’m in class about 20 hours a week. Any one or two classes might have been alright but together their almost too much. Add the time out of class for projects and studying and I’m probably doing 50 - 60 hours of work a week. Most students could probably do it quicker, I just don’t read that fast anymore. I have no idea how my classmates maintain their social lives while being full time.
The professors. Not sure how honest I want to be in this space. They’re smart and generally helpful. I think I’m older than half of them. I have been surprised at how much I have to connect the dots in some classes. There isn’t always a clear narrative between instruction and assignments or tests. This type of behavior wouldn’t cut it in the corporate world I came out of.
I will say that the science I’ve been learning has actually been changing my perspective and helping me see the world in ways I never have. That’s the point of education, or it should be. I hope all the stress I’m under is worth it. I’m not sure how long I can keep up the pace as a full time student. I might need to rethink my approach, slowdown. I want to enjoy this process as well as learn from it.
I last went to college in 1996. Since then, things have, um, changed. If you wore headphones in public twenty years ago, you were square. Now everyone does. Computers were mostly used in labs and laptops were rare and not allowed in class. Citing the internet would get you laughed at. In general, students treated professors with more respect. I’ve been surprised by the amount of arguing, talking, phone using, tardiness, and leaving early the students do. The older the students are, the less this behavior is evident. So it doesn’t happen nearly as much is my senior level classes. I guess the students either mature or leave.
For the most part, the students have shown no interest in my disability. I’m stared at a lot but rarely asked questions. One class took us on a surprise field trip to a garden on campus. I quickly fell behind. In a class of over 70 students, only one noticed, or cared notice, and came back to help me catch up. I will say, I’ve gotten to know my lab partners pretty well and they’re nice, smart and friendly. They’re all surprised when they find out my age. They mostly assume I’m around 30.
This is my first time being a disabled student. I get caught in some tough situation. Professors like to use Powerpoints with the lights off, which makes it impossible for me to take notes. Or an open note quiz is really a reading test for me because I can only see one word for every five a normal person can. Open note quizzes are just quizzes for me. When I have time to do assignments, papers or projects, I usually do pretty well.
Personally, I’m not as fast as I was twenty years ago. I make up for that, I think, with better attention to detail, organization and commitment. Because I transferred in with a degree, I’m taking only major classes, all science. When the labs are added, I’m in class about 20 hours a week. Any one or two classes might have been alright but together their almost too much. Add the time out of class for projects and studying and I’m probably doing 50 - 60 hours of work a week. Most students could probably do it quicker, I just don’t read that fast anymore. I have no idea how my classmates maintain their social lives while being full time.
The professors. Not sure how honest I want to be in this space. They’re smart and generally helpful. I think I’m older than half of them. I have been surprised at how much I have to connect the dots in some classes. There isn’t always a clear narrative between instruction and assignments or tests. This type of behavior wouldn’t cut it in the corporate world I came out of.
I will say that the science I’ve been learning has actually been changing my perspective and helping me see the world in ways I never have. That’s the point of education, or it should be. I hope all the stress I’m under is worth it. I’m not sure how long I can keep up the pace as a full time student. I might need to rethink my approach, slowdown. I want to enjoy this process as well as learn from it.
Friday, January 15, 2016
One Week In
College is a kick in the head. I'm enjoying it but wow. Who takes four science classes in the same semester? It's foolishness.
It's strange being a disabled student. I get looked at a lot when I'm using my cane. I just ignore the stares because to acknowledge them would be even more confusing. I find walking around campus to be stressful. I'm constantly on guard from all the traffic and when I get to my destination I'm tired.
Gripes over. I'm actually enjoying myself. I enjoy having a task to tackle. The people have been nice. Most of my professor's met with me to go over concerns either they had or so I could tell them what I need. I'm optimistic this will work out.
It's strange being a disabled student. I get looked at a lot when I'm using my cane. I just ignore the stares because to acknowledge them would be even more confusing. I find walking around campus to be stressful. I'm constantly on guard from all the traffic and when I get to my destination I'm tired.
Gripes over. I'm actually enjoying myself. I enjoy having a task to tackle. The people have been nice. Most of my professor's met with me to go over concerns either they had or so I could tell them what I need. I'm optimistic this will work out.
Wednesday, January 6, 2016
School Updates
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.
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.
Losing Well Part 23
Continuation of my series, Losing Well. Part 1 can be found here.
November 13, 2014
Two years after I went out on leave due to my visual disability, I got a letter in the mail welcoming me to Medicare. A lot of people are, understandably, very happy when this day comes. Me? Not so much.
I didn't request to participate in Medicare. The government just automatically signed me up for Medicare Plan A and Plan B. Plan A is free to me and covers hospital stays. Plan B will cost me $104 a month, increases yearly, and is a major medical plan. To get a truly functional health plan I'd need to pay for Plan C; a Medicare Advantage plan offered by an HMO/PPO.
Thing is, I don't need Medicare. I have insurance already through my employer. And since my plan provides for my family, I'm not making any changes. So clearly I'm not going to pay for Plan C - I don't need two complete health policies for one person. And Plan B looks redundant and not worth the expense. I'll keep Plan A because it literally isn't possible to cancel.
So here's the rub, the government has built in an incentive to try and force me to sign-up for Plan B. If I don't sign up when Plan B is first made available and I want to sign-up at a later date, there will be a penalty. Plan B will go up 10% in cost for every year that I'm eligible but didn't participate.
So If ten years from now I lose my employer based insurance and want to get Plan B it will cost me $208 (in 2014 dollars) instead of $104. A month, every month! If I wait 15 years, it will cost $260. Remember this is just for a major medical plan, not an actual health plan. I'd still have to pay for Medicare Advantage separately.
I talked to the Social Security administration and they confirmed that there is no cap to the 10% yearly penalty. They said it would reset when I hit 65, over two decades from now. In theory I could end up having to pay more than 240% in penalties on a monthly basis if I lose my employer based insurance.
But isn't that why we have the affordable care act? If I lose my insurance I can just jump on healthcare.gov and buy a plan from the exchanges. But I can't. Since the government signed me up for Medicare, I lost the ability to buy insurance on the open market. Providers are only allowed to sell me Medicare Advantage plans, which I have to purchase Plan B to qualify for.
Normally, Medicare doesn't impose the Plan B penalty on people who have employer based insurance. But for some unexplained reason, people in my situation do not qualify for the penalty exemption based upon how the IRS taxes my income.
So I'm left with a choice. If I waive Plan B the government will start adding the fees onto to my hypothetical premiums. Which wouldn't matter as long as I keep my employer based insurance. But we live in uncertain times. My employer is not required by law to allow my participation on their health plan. And I assume they could remove me from it. This might get them some bad press but other companies have removed insurance access to their disabled/retired employees.
So until I hit the age of 65, will I really be able to participate in my employer's plan? I hope so. But can I realistically count on it? Since I will not be allowed onto the open market to purchase a health plan, it's hard to see how I do anything but pay the Plan B $1,250 yearly fee.
I might be able to make back a small percentage of the Plan B premiums if Plan B covers my employee based insurance policy co-pays. But the vast majority of my Plan B premiums are going to be wasted on a product I'm already purchasing. I'm essentially buying Plan B as a hedge against my actually insurance plan going away. Plan B is functioning more as very expensive liability insurance. On my insurance.
Oh, well. My family didn't need that money anyway.
To be continued. . .
November 13, 2014
Two years after I went out on leave due to my visual disability, I got a letter in the mail welcoming me to Medicare. A lot of people are, understandably, very happy when this day comes. Me? Not so much.
I didn't request to participate in Medicare. The government just automatically signed me up for Medicare Plan A and Plan B. Plan A is free to me and covers hospital stays. Plan B will cost me $104 a month, increases yearly, and is a major medical plan. To get a truly functional health plan I'd need to pay for Plan C; a Medicare Advantage plan offered by an HMO/PPO.
Thing is, I don't need Medicare. I have insurance already through my employer. And since my plan provides for my family, I'm not making any changes. So clearly I'm not going to pay for Plan C - I don't need two complete health policies for one person. And Plan B looks redundant and not worth the expense. I'll keep Plan A because it literally isn't possible to cancel.
So here's the rub, the government has built in an incentive to try and force me to sign-up for Plan B. If I don't sign up when Plan B is first made available and I want to sign-up at a later date, there will be a penalty. Plan B will go up 10% in cost for every year that I'm eligible but didn't participate.
So If ten years from now I lose my employer based insurance and want to get Plan B it will cost me $208 (in 2014 dollars) instead of $104. A month, every month! If I wait 15 years, it will cost $260. Remember this is just for a major medical plan, not an actual health plan. I'd still have to pay for Medicare Advantage separately.
I talked to the Social Security administration and they confirmed that there is no cap to the 10% yearly penalty. They said it would reset when I hit 65, over two decades from now. In theory I could end up having to pay more than 240% in penalties on a monthly basis if I lose my employer based insurance.
But isn't that why we have the affordable care act? If I lose my insurance I can just jump on healthcare.gov and buy a plan from the exchanges. But I can't. Since the government signed me up for Medicare, I lost the ability to buy insurance on the open market. Providers are only allowed to sell me Medicare Advantage plans, which I have to purchase Plan B to qualify for.
Normally, Medicare doesn't impose the Plan B penalty on people who have employer based insurance. But for some unexplained reason, people in my situation do not qualify for the penalty exemption based upon how the IRS taxes my income.
So I'm left with a choice. If I waive Plan B the government will start adding the fees onto to my hypothetical premiums. Which wouldn't matter as long as I keep my employer based insurance. But we live in uncertain times. My employer is not required by law to allow my participation on their health plan. And I assume they could remove me from it. This might get them some bad press but other companies have removed insurance access to their disabled/retired employees.
So until I hit the age of 65, will I really be able to participate in my employer's plan? I hope so. But can I realistically count on it? Since I will not be allowed onto the open market to purchase a health plan, it's hard to see how I do anything but pay the Plan B $1,250 yearly fee.
I might be able to make back a small percentage of the Plan B premiums if Plan B covers my employee based insurance policy co-pays. But the vast majority of my Plan B premiums are going to be wasted on a product I'm already purchasing. I'm essentially buying Plan B as a hedge against my actually insurance plan going away. Plan B is functioning more as very expensive liability insurance. On my insurance.
Oh, well. My family didn't need that money anyway.
To be continued. . .
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.
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.
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