It's going to be an interesting week. I've been on long term disability for the past two years because of vision. My employer's insurance company is sending me to get evaluated by my state's Services for the Blind this week. I'm not against working, I just don't want to end up in a job that I'd hate. Just because I'm blind doesn't mean I have to be miserable, right?
Some people think everyone who's on disability and not working any level job is a deadbeat. I think that's insane. I raise children. This allows my wife to work. There's a whole lot of value to be brought to the world that doesn't include working for minimum wage. How much is happiness worth? I guess I'm going to find out.
Tuesday, April 28, 2015
Friday, April 24, 2015
From Car to Cane
I stopped driving in early September. In November of the same year, I started Orientation and Mobility (O&M) - cane training. In two months I went from shifting gears to tapping a white cane. Everything changed so fast it gave me whiplash. It was surreal.
There are plenty of elderly people out there with Macular Degeneration who don't know they have a problem. I've even seen where DMV employees help visually impaired drivers pass their driver's license test. At least I stopped driving when I found out.
There are plenty of elderly people out there with Macular Degeneration who don't know they have a problem. I've even seen where DMV employees help visually impaired drivers pass their driver's license test. At least I stopped driving when I found out.
Thursday, April 23, 2015
Visual History
The history of my visual problems is long and complicated. Here's the brief version.
Timeline
When I was 3 I was diagnosed with amblyopia. I was right handed but left eye dominate (my strong eye). So my doctors surgically straightened my "lazy" right eye and patched my left eye. The hope was that they could equalize the strength of my eyes. When they pulled the patch off, my left eye had turned out. The surgery failed. They attempted once more, this time straightening my left eye and patching the right. After the surgery, my right eye turn back out. A third surgery was not attempted.
By age 5 I was wearing glasses to school. I couldn't see the board well and I struggled. It took me until after second grade to learn how to read.
By age 7 I realized I couldn't see well at night. I was on the swim team and I did great in practice but chocked during meets because we competed outside at night in poor lighting. This was my first symptom of Retenitis pigmentosa.
Age 13 I got hit by a tennis ball in my open left eye causing scare tissue. I'd lost the ball in the air, unable to track it in my visual field.
In my 20's I got into several car wrecks. These were caused by people cutting me off. I was instant Karma. These wrecks weren't my fault legally. But after a series of incidents I took myself to the eye doctor. When I was 25, I was diagnosed with RP. My optometrist didn't know much about it After a few months of research and testing, he decided I was legally blind and shouldn't drive anymore. I hung up my keys for good. A couple of months after stopping driving I starting Orientation and Mobility training - white cane training.
A few months before my 26th birthday I made my way to Johns Hopkins to meet their retina specialists. Johns Hopkins told me that my amblyopia surgery had failed because my brain was forcing my eyes out of sync to get a wider field of vision. I had an ERG on my eye, the only official way to prove RP. The doctors were amazed I'd made it so long in life without being diagnosed. They said that was an indictment of the entire field of optometry. Johns Hopkins advised me to get cataract surgery.
At 27 I had my first cataract surgery. I had the subcapsular "RP" cataract. It was tiny but happened to sit right over my tiny field of vision. Doctors removed the natural lens of my right eye and implanted a contact like lens as replacement.
At 29 my body grew over the implanted lens. I had to have "yag" surgery to burn off the skin. I'm light sensitive so I couldn't keep my eye open for long with a bright laser pointing at it. The result was that my yag surgery left an island of skin alive in the middle of my eye, unattached to my body. My surgeon was amazed it stayed alive and documented it for publication. The flashes from the camera he used to document my eye was pure torture. Afterwards I had a second yag surgery on the same eye; a unique and unwelcome occurrence.
At age 31 I had cataract surgery on my left "good" eye. I was now using bifocals to read. Reading was so frustrating that I had to give up printed text.
At age 32 my eyes became suddenly swollen and red. I was in a lot of acute pain and discomfort. My cornea's had become infected and had growths coming out of them. I was diagnosed with Keratitis caused by the Staph bacteria. The growths would brush my eyelids as they closed. This infection could have been linked to my last cataract surgery (a batch of bad artificial lens was going around) or it could have been coincidence. For a month I went to the doctor every week and he'd yank the growths out. It was. . . not fun.
At age 33 I had yag surgery on my left eye. No second surgery required this time.
Age 38. On July 4th the fireworks didn't look right. They were all blurry. So I went to the doctor on my 39th birthday and he said it was an end stage RP symptom. The fluid of my eye was drying up and it had clumped together. This large clump would float over my tiny visual field and mimic cataracts. There was nothing they could do about it.
Current Visual Impairments
RP - highly restricted fields, 8 degrees in left eye, 7 in right (160 to 180 is normal)
Eyes correct to 20/40 for distance (using implanted lens in combination with glasses)
astigmatism prevents correction to 20/20
Nyctalopia - night blindness
Photopsia - constant flashing lights around edge of remaining visual field
Floaters - dried vitreous fluid has broken off and obscures my vision in both eyes as it passes over my visual field
Sensitive to bright light (including computer monitors)
Difficulty transitioning from outside to inside or vise versa because changes in light level
Amblyopia (cross-eyed) - two failed surgeries to correct
Monocular vision - I see with one eye at a time. My right eye is for distance, my left eye for reading. If I try reading with my right eye I get headaches
No depth perception or stereo, 3D vision
Keratoconus - blurry vision. I'm never sure what I'll be able to see when I wake up in the morning
List of Surgeries
2 amblyopia surgeries using sedation
2 cataract surgeries using sedation
3 yag laser surgeries - in-patient without anesthetic
10x Keratitis cornea growth removals - in-patient without anesthetic
Total = 17
A friend suggested that I'm now ready to be a MLB umpire.
Timeline
When I was 3 I was diagnosed with amblyopia. I was right handed but left eye dominate (my strong eye). So my doctors surgically straightened my "lazy" right eye and patched my left eye. The hope was that they could equalize the strength of my eyes. When they pulled the patch off, my left eye had turned out. The surgery failed. They attempted once more, this time straightening my left eye and patching the right. After the surgery, my right eye turn back out. A third surgery was not attempted.
By age 5 I was wearing glasses to school. I couldn't see the board well and I struggled. It took me until after second grade to learn how to read.
By age 7 I realized I couldn't see well at night. I was on the swim team and I did great in practice but chocked during meets because we competed outside at night in poor lighting. This was my first symptom of Retenitis pigmentosa.
Age 13 I got hit by a tennis ball in my open left eye causing scare tissue. I'd lost the ball in the air, unable to track it in my visual field.
In my 20's I got into several car wrecks. These were caused by people cutting me off. I was instant Karma. These wrecks weren't my fault legally. But after a series of incidents I took myself to the eye doctor. When I was 25, I was diagnosed with RP. My optometrist didn't know much about it After a few months of research and testing, he decided I was legally blind and shouldn't drive anymore. I hung up my keys for good. A couple of months after stopping driving I starting Orientation and Mobility training - white cane training.
A few months before my 26th birthday I made my way to Johns Hopkins to meet their retina specialists. Johns Hopkins told me that my amblyopia surgery had failed because my brain was forcing my eyes out of sync to get a wider field of vision. I had an ERG on my eye, the only official way to prove RP. The doctors were amazed I'd made it so long in life without being diagnosed. They said that was an indictment of the entire field of optometry. Johns Hopkins advised me to get cataract surgery.
At 27 I had my first cataract surgery. I had the subcapsular "RP" cataract. It was tiny but happened to sit right over my tiny field of vision. Doctors removed the natural lens of my right eye and implanted a contact like lens as replacement.
At 29 my body grew over the implanted lens. I had to have "yag" surgery to burn off the skin. I'm light sensitive so I couldn't keep my eye open for long with a bright laser pointing at it. The result was that my yag surgery left an island of skin alive in the middle of my eye, unattached to my body. My surgeon was amazed it stayed alive and documented it for publication. The flashes from the camera he used to document my eye was pure torture. Afterwards I had a second yag surgery on the same eye; a unique and unwelcome occurrence.
At age 31 I had cataract surgery on my left "good" eye. I was now using bifocals to read. Reading was so frustrating that I had to give up printed text.
At age 32 my eyes became suddenly swollen and red. I was in a lot of acute pain and discomfort. My cornea's had become infected and had growths coming out of them. I was diagnosed with Keratitis caused by the Staph bacteria. The growths would brush my eyelids as they closed. This infection could have been linked to my last cataract surgery (a batch of bad artificial lens was going around) or it could have been coincidence. For a month I went to the doctor every week and he'd yank the growths out. It was. . . not fun.
At age 33 I had yag surgery on my left eye. No second surgery required this time.
Age 38. On July 4th the fireworks didn't look right. They were all blurry. So I went to the doctor on my 39th birthday and he said it was an end stage RP symptom. The fluid of my eye was drying up and it had clumped together. This large clump would float over my tiny visual field and mimic cataracts. There was nothing they could do about it.
Current Visual Impairments
RP - highly restricted fields, 8 degrees in left eye, 7 in right (160 to 180 is normal)
Eyes correct to 20/40 for distance (using implanted lens in combination with glasses)
astigmatism prevents correction to 20/20
Nyctalopia - night blindness
Photopsia - constant flashing lights around edge of remaining visual field
Floaters - dried vitreous fluid has broken off and obscures my vision in both eyes as it passes over my visual field
Sensitive to bright light (including computer monitors)
Difficulty transitioning from outside to inside or vise versa because changes in light level
Amblyopia (cross-eyed) - two failed surgeries to correct
Monocular vision - I see with one eye at a time. My right eye is for distance, my left eye for reading. If I try reading with my right eye I get headaches
No depth perception or stereo, 3D vision
Keratoconus - blurry vision. I'm never sure what I'll be able to see when I wake up in the morning
List of Surgeries
2 amblyopia surgeries using sedation
2 cataract surgeries using sedation
3 yag laser surgeries - in-patient without anesthetic
10x Keratitis cornea growth removals - in-patient without anesthetic
Total = 17
A friend suggested that I'm now ready to be a MLB umpire.
Wednesday, April 22, 2015
Selfie
Special Transportation
So my case worker at services for the blind told me I should apply for special transportation services from the city. This would allow me to schedule a van to pick me up and take me places. I'd still have to pay for the rides but it would be well below normal taxi rates.
So I made an appointment. My case worker picked me to take me downtown. She told me that I probably wouldn't get access to special transportation because none of her visually impaired clients ever had (just the totally blind ones).
Half an hour later, I left my meeting with the city approved for special transportation. My case worker asked me how I convinced them. It was easy, I made a Power Point deck. I took pictures of the intersections I had to cross on a normal basis. I took photos of where I'd been hit by cars (3 times in 10 years). I left my deck with my case worker to use as a template.
So the visually impaired can get services, you just have to tell your story.
So I made an appointment. My case worker picked me to take me downtown. She told me that I probably wouldn't get access to special transportation because none of her visually impaired clients ever had (just the totally blind ones).
Half an hour later, I left my meeting with the city approved for special transportation. My case worker asked me how I convinced them. It was easy, I made a Power Point deck. I took pictures of the intersections I had to cross on a normal basis. I took photos of where I'd been hit by cars (3 times in 10 years). I left my deck with my case worker to use as a template.
So the visually impaired can get services, you just have to tell your story.
Driving
The worst part of being visually impaired and a parent is that I can't help my kids get around. I can't drive them. Maybe one day Google or Apple will help solve that with a driverless car. Now I can do is call Uber to pick us up but what do I do with the car seats once I get somewhere? There's no good solution so I just ride along like everyone else, unable to help.
The In-between World
Retinitis pigmentosa is an eye disease full of contradictions. I have what is known as tunnel vision. I see through a hole. If I'm standing in conversation with you, I could only see your nose or eye at one time, not both. The further away you are, the more I can see of you, but the less detail.
Through my visual hole, I can see about 20/40. That means I can still read. Although I haven't been able to read printed books in close to a decade. This is the contradiction. I might use a cane to get through a crowd then get to a bar and read the drink menu. This confuses people. It confuses me.
I often feel the pressure to conform to either be sighted or blind. It's easier to not confuse people with the in-between world.
Through my visual hole, I can see about 20/40. That means I can still read. Although I haven't been able to read printed books in close to a decade. This is the contradiction. I might use a cane to get through a crowd then get to a bar and read the drink menu. This confuses people. It confuses me.
I often feel the pressure to conform to either be sighted or blind. It's easier to not confuse people with the in-between world.
Daredevil
I've been watching the new Daredevil series on Netflix. Its enjoyable fantasy. I thought the first episode did a good job showing visual impairment. Like when Matt Murdoch didn't see when people were trying to shake his hand or holding on to someone's elbow to get around. He wasn't great at using his cane, truth be told. He uses it to cover his right leg mostly.
By the second episode all of Matt's impairment was gone, never to be seen again. He did make me wonder if I'm doing the whole visual impairment thing wrong. Maybe I should buy some spandex.
By the second episode all of Matt's impairment was gone, never to be seen again. He did make me wonder if I'm doing the whole visual impairment thing wrong. Maybe I should buy some spandex.
Introduction
I've been wanting to do this blog for a while. One thing that has held me back has been fears about what my insurance company would think if they stumbled upon it. I'm also a private person and it can be embarrassing to talk about going blind. So I've decided to speak up despite my concerns. Hopefully this will work out for the best.
I found out at the age of 25 that I was losing my vision due to an eye disease, Retinitis pigmentosa. Within six months of finding out about RP, my wife was gone, I had to stop driving and move away from our house and friends. RP destroyed my life.
The only link I kept to my old life was my job. I moved to a city an hour from my home so I could walk to work. I moved into a downtown apartment with no support system or transportation. My life was spiraling out of control. I sunk into a deep depression and turned to partying to numb the pain. I was only able to keep up this lifestyle for a few years before it took its toll on my health.
By my early 30's I'd settled back down. I remarried and had a couple of kids. I worked for more than a decade at my job before my vision was too bad to continue. So a couple of years ago I went out on disability.
I've made plenty of mistakes in the past 16 years of knowing about visual impairment. Hopefully I can pass on some of that wisdom here at this blog.
I found out at the age of 25 that I was losing my vision due to an eye disease, Retinitis pigmentosa. Within six months of finding out about RP, my wife was gone, I had to stop driving and move away from our house and friends. RP destroyed my life.
The only link I kept to my old life was my job. I moved to a city an hour from my home so I could walk to work. I moved into a downtown apartment with no support system or transportation. My life was spiraling out of control. I sunk into a deep depression and turned to partying to numb the pain. I was only able to keep up this lifestyle for a few years before it took its toll on my health.
By my early 30's I'd settled back down. I remarried and had a couple of kids. I worked for more than a decade at my job before my vision was too bad to continue. So a couple of years ago I went out on disability.
I've made plenty of mistakes in the past 16 years of knowing about visual impairment. Hopefully I can pass on some of that wisdom here at this blog.
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