Tuesday, December 22, 2015
Latest
I haven't been able to work on Losing Well lately. It's the Christmas holidays and I have kids all over me.
Friday, December 18, 2015
Losing Well Part 9
Continuation of my series, Losing Well. Part 1 can be found here.
January 2001
Ever since I found out about RP, a question has been repeating itself in my head: how did I not notice my legal blindness? How did doctors trained to look at the eye not notice? My doctors looked for expected results while my own brain filled in my blind spots. When I walked or drove, I scanned my surroundings. This allowed me a virtual sense of normal mobility. But my brain was lying to me. I spoon fed the truth. By myself.
My doctors were amazed that no one had diagnosed my RP before became an adult. Everyone knew I had vision problems. I just did my best. My brain adapted. I avoided driving at night. I constantly scanned my environment for obstacles. Over time my coping methods started to fail as my visual filed declined.
Vision is a lot more then just acuity. Normally sighted people have 300 degrees of vision in each eye. My field of vision is about 5% of that and has been shirking my entire life. At this point, I’m seeing through a tiny pinhole of vision. What makes this confusing is that my eyes correct to about 20/40. I can read and I can even see faces (but I can only see your nose or mouth, not both at once).
Emotionally, I was a wreck after finding out. How do you deal with the fear and the pain and frustration and not lose your mind? You either decide that you will continue to live or you won't. Most people choose to live. I decided that there were a lot of things in this world I wanted to see and experience and I needed to do it now.
Strangely, while I was very upset, I was also exuberant about finding out I was going blind. I know that sounds crazy but I understood now. So that’s why I was so awkward! It explained so much that I had struggled with growing up. I felt complete in the midst of my outward inability. My whole life experience looked differently with the knowledge of RP.
My perception of myself and of life were changing. I started to realize that all of my life I’d valued myself based upon what others were thinking. I didn’t trust myself. I had strong ideas of what I wanted to do and be but I still perceived myself as incapable in the eyes of others.
At first, I only saw negative. The stress was warping my ability to feel or do anything. So I looked within myself for some sign that I could handle this. My future was looming, massive and unstoppable and I wasn’t sure how I was going to have the strength to get up in the morning. Then I realized something about myself. I’m a fighter.
Part 10 can be found here.
January 2001
Ever since I found out about RP, a question has been repeating itself in my head: how did I not notice my legal blindness? How did doctors trained to look at the eye not notice? My doctors looked for expected results while my own brain filled in my blind spots. When I walked or drove, I scanned my surroundings. This allowed me a virtual sense of normal mobility. But my brain was lying to me. I spoon fed the truth. By myself.
My doctors were amazed that no one had diagnosed my RP before became an adult. Everyone knew I had vision problems. I just did my best. My brain adapted. I avoided driving at night. I constantly scanned my environment for obstacles. Over time my coping methods started to fail as my visual filed declined.
Vision is a lot more then just acuity. Normally sighted people have 300 degrees of vision in each eye. My field of vision is about 5% of that and has been shirking my entire life. At this point, I’m seeing through a tiny pinhole of vision. What makes this confusing is that my eyes correct to about 20/40. I can read and I can even see faces (but I can only see your nose or mouth, not both at once).
Emotionally, I was a wreck after finding out. How do you deal with the fear and the pain and frustration and not lose your mind? You either decide that you will continue to live or you won't. Most people choose to live. I decided that there were a lot of things in this world I wanted to see and experience and I needed to do it now.
Strangely, while I was very upset, I was also exuberant about finding out I was going blind. I know that sounds crazy but I understood now. So that’s why I was so awkward! It explained so much that I had struggled with growing up. I felt complete in the midst of my outward inability. My whole life experience looked differently with the knowledge of RP.
My perception of myself and of life were changing. I started to realize that all of my life I’d valued myself based upon what others were thinking. I didn’t trust myself. I had strong ideas of what I wanted to do and be but I still perceived myself as incapable in the eyes of others.
At first, I only saw negative. The stress was warping my ability to feel or do anything. So I looked within myself for some sign that I could handle this. My future was looming, massive and unstoppable and I wasn’t sure how I was going to have the strength to get up in the morning. Then I realized something about myself. I’m a fighter.
Part 10 can be found here.
Thursday, December 17, 2015
Losing Well Part 8
Continuation of my series, Losing Well. Part 1 can be found here.
May, 2000
I decided that I just didn’t need to define myself as I always have or by value systems that I no longer hold. I don’t need to be dating to feel complete. I have all I need within myself. I am a whole person.
July, 2000
Division of the Blind just called to verify I’d gotten the job set up on my “employment plan.” When I went to them I was employed and I still am employed.
August, 2000
Vancouver Trip. Did Stanley Park, the shops in North Van. I hiked down a dam to a salmon spawning, crossed a suspension bridge over a waterfall. What a great city.
8 September 2000
Been a year since I drove a car. Wow. It still frustrates me that I’m stuck so much of the time. I asked the city about special transportation but they told me I had a job so I wouldn’t qualify. That made no sense to me.
29 September 2000
We went over to a bar and played some pool. We lost, but afterwards, I pulled out my cane. The look on their faces was priceless. I can be so mean.
5 October 2000
Today I found out that I’m divorced. Let the fun begin
6 October 2000
For about the third of fourth time that night some drunk guy asked me why I was faking being blind. I ended up actually explaining it to him and this girl. I got her number but I can’t remember anything about her.
7 October 2000
My friends had an invite to a someone's birthday party - someone I'd never met before. There were a lot of people at the party in a small house. I met this girl. She’s a scientist. We talked most of the night. I got her number.
8 October 2000
I was at a bar and I ran into this guy who loved my cane. “Hey, I gotta have one of those stick things.” What an idiot. Sure no problem guy, let me give you RP then see how much you gotta have one.
9 October 2000
Before I knew about RP I had all the mobility that I needed. Yet I was trapped. Now, I'm free and I no longer have mobility. I traded one form of slavery for another. But my slavery now is one of convenience. Life is not defined by your physical attributes unless you let it be.
12 October 2000
Went out with the scientist, Kate. She has some strange/exotic/cool tastes in music. I like that.
16 October 2000
Wild ride, the movie, Dancing in the Dark. It's a kick in the ass. In it, Bjork plays a mother who willingly allows herself to be hung to death in order for her son to be able to pay for an operation to keep his eyesight. I got physically sick when I realized what it was about. Talk about a slap in the face.
The movie is clearly intended to be anti-capital punishment. Their means are just very upsetting. Came back home and Mom called me with news about some miracle drug that will help my eyesight. It was not what I needed. Why can’t people accept blindness? What's the big deal? If my eyesight is understood to be worth someone else's life, what does that say about me who will lose it? Is my life not valuable without eyesight? I think it is.
18 October 2000
Kate called. We had a good conversation. I really like her. Even if nothing would ever work out between us, I hope we can become friends. She wants to hangout next week sometime.
27 October 2000
Was out with friends downtown. I was walking down the sidewalk when this woman and her friends jumped out of a limo dressed in rave gear. I got out of their way on the sidewalk. The woman held out her hand and said, “you’re not blind.” I couldn’t see her hand and she slapped me across the face.I was too shocked to do much. My friends yelled at her. I was like, what just happened?
9 October 2000
Turned down a job. It paid more but I had no reliable way to get there. Damn RP.
11 October 2000
Kate came and got me around dinner time. Went out on the dance floor. With RP it’s like dancing in the dark by myself. Less fear that way.
17 October 2000
Another department at the bank is offering me more money for less responsibility. How often does that combination happen? My boss is really pushing for me to stay. What do I do? She took a risk on me two and a half years ago. Should I take a risk with her now? I like the stability of the new job and the money but is it good for my career? With RP, should my ego play an y part? My gut is to stay with my boss.
20 October 2000
Made the decision that I’m going to stick with the job. Sigh. Bye bye money. Did I do right? Will I ever know?
22 October 2000
I’m in a rut. I depend too much on going out to have fun. I‘m not dealing with things in the “right” way. It’s just hard for me now. Everything is in flux all the time
27 October 2000
I got to work and my boss called me into her office. She told me that I got nice race. Much more then what I turned down last week!
17 November 2000
The girls love to steal my cane when I’m on the dance floor. Which I don’t really mind. It's fun trying to get it back. It’s the guys I don’t like. The ones who try to run me over with their cars to see if I’ll jump out of the way. Or when they honk their horns and yell out. “you faker.” They're right. I am a faker. I'm just not sure what I’m faking anymore.
9 December 2000
Kate came over. We drank coffee then went over and walked around. I bought her a pair of sunglasses for her birthday. Made her happy. She dropped me off about 4:30 because she had to go to dinner with her parents for her birthday. About an hour after she left, she called me to see if I wanted to go out that night. I was like, sure.
16 December 2000
Cleaned up a bit. Big date planned with Kate. When she got here I just sensed that things had changed between us. I grabbed her hand on the walk to the show and she didn’t let go. Really enjoyed the play. On the way back we kissed in the rain in the graveyard beside my condo. I popped the umbrella over our head just as our lips met. I crack myself up sometimes. So Kate is now my girlfriend. I was all prepared to wine and dine her into submission but she came with her own plans.
December 2015
2000 was my first full year with RP. In the spring of that year I traveled to Johns Hopkins in Baltimore to get a definitive diagnosis. They told me that I probably had ten years of “useable” vision left. That started a clock for me. I felt motivated to see as much of the world as possible in my time left. I threw myself into going out, travel and trying to experience the world as much as possible.
I used RP as a catalyst to reshape myself. I decided I was going to be successful because it was hard. Because the sighted world saw me as incapable. I wanted to beat them at their own game. My reinvention led to getting a new circle of friends, a girlfriend and buying he first piece of real estate I’d ever owned.
RP also exposed to frustrating limitations. I wasn’t able to take a fantastic new job because I couldn’t get transportation. I was also learning how to use the cane in public. The results were mixed. My cane and limited vision confused everyone. Sometimes even myself. If I pretended to be sighted I’d end up acting strange when I couldn’t see. When I used my cane, I got a lot of unwanted attention or people were confused when I still showed some visual ability. It’s a dilemma with no good choices.
Part 9 can be found here.
May, 2000
I decided that I just didn’t need to define myself as I always have or by value systems that I no longer hold. I don’t need to be dating to feel complete. I have all I need within myself. I am a whole person.
July, 2000
Division of the Blind just called to verify I’d gotten the job set up on my “employment plan.” When I went to them I was employed and I still am employed.
August, 2000
Vancouver Trip. Did Stanley Park, the shops in North Van. I hiked down a dam to a salmon spawning, crossed a suspension bridge over a waterfall. What a great city.
8 September 2000
Been a year since I drove a car. Wow. It still frustrates me that I’m stuck so much of the time. I asked the city about special transportation but they told me I had a job so I wouldn’t qualify. That made no sense to me.
29 September 2000
We went over to a bar and played some pool. We lost, but afterwards, I pulled out my cane. The look on their faces was priceless. I can be so mean.
5 October 2000
Today I found out that I’m divorced. Let the fun begin
6 October 2000
For about the third of fourth time that night some drunk guy asked me why I was faking being blind. I ended up actually explaining it to him and this girl. I got her number but I can’t remember anything about her.
7 October 2000
My friends had an invite to a someone's birthday party - someone I'd never met before. There were a lot of people at the party in a small house. I met this girl. She’s a scientist. We talked most of the night. I got her number.
8 October 2000
I was at a bar and I ran into this guy who loved my cane. “Hey, I gotta have one of those stick things.” What an idiot. Sure no problem guy, let me give you RP then see how much you gotta have one.
9 October 2000
Before I knew about RP I had all the mobility that I needed. Yet I was trapped. Now, I'm free and I no longer have mobility. I traded one form of slavery for another. But my slavery now is one of convenience. Life is not defined by your physical attributes unless you let it be.
12 October 2000
Went out with the scientist, Kate. She has some strange/exotic/cool tastes in music. I like that.
16 October 2000
Wild ride, the movie, Dancing in the Dark. It's a kick in the ass. In it, Bjork plays a mother who willingly allows herself to be hung to death in order for her son to be able to pay for an operation to keep his eyesight. I got physically sick when I realized what it was about. Talk about a slap in the face.
The movie is clearly intended to be anti-capital punishment. Their means are just very upsetting. Came back home and Mom called me with news about some miracle drug that will help my eyesight. It was not what I needed. Why can’t people accept blindness? What's the big deal? If my eyesight is understood to be worth someone else's life, what does that say about me who will lose it? Is my life not valuable without eyesight? I think it is.
18 October 2000
Kate called. We had a good conversation. I really like her. Even if nothing would ever work out between us, I hope we can become friends. She wants to hangout next week sometime.
27 October 2000
Was out with friends downtown. I was walking down the sidewalk when this woman and her friends jumped out of a limo dressed in rave gear. I got out of their way on the sidewalk. The woman held out her hand and said, “you’re not blind.” I couldn’t see her hand and she slapped me across the face.I was too shocked to do much. My friends yelled at her. I was like, what just happened?
9 October 2000
Turned down a job. It paid more but I had no reliable way to get there. Damn RP.
11 October 2000
Kate came and got me around dinner time. Went out on the dance floor. With RP it’s like dancing in the dark by myself. Less fear that way.
17 October 2000
Another department at the bank is offering me more money for less responsibility. How often does that combination happen? My boss is really pushing for me to stay. What do I do? She took a risk on me two and a half years ago. Should I take a risk with her now? I like the stability of the new job and the money but is it good for my career? With RP, should my ego play an y part? My gut is to stay with my boss.
20 October 2000
Made the decision that I’m going to stick with the job. Sigh. Bye bye money. Did I do right? Will I ever know?
22 October 2000
I’m in a rut. I depend too much on going out to have fun. I‘m not dealing with things in the “right” way. It’s just hard for me now. Everything is in flux all the time
27 October 2000
I got to work and my boss called me into her office. She told me that I got nice race. Much more then what I turned down last week!
17 November 2000
The girls love to steal my cane when I’m on the dance floor. Which I don’t really mind. It's fun trying to get it back. It’s the guys I don’t like. The ones who try to run me over with their cars to see if I’ll jump out of the way. Or when they honk their horns and yell out. “you faker.” They're right. I am a faker. I'm just not sure what I’m faking anymore.
9 December 2000
Kate came over. We drank coffee then went over and walked around. I bought her a pair of sunglasses for her birthday. Made her happy. She dropped me off about 4:30 because she had to go to dinner with her parents for her birthday. About an hour after she left, she called me to see if I wanted to go out that night. I was like, sure.
16 December 2000
Cleaned up a bit. Big date planned with Kate. When she got here I just sensed that things had changed between us. I grabbed her hand on the walk to the show and she didn’t let go. Really enjoyed the play. On the way back we kissed in the rain in the graveyard beside my condo. I popped the umbrella over our head just as our lips met. I crack myself up sometimes. So Kate is now my girlfriend. I was all prepared to wine and dine her into submission but she came with her own plans.
December 2015
2000 was my first full year with RP. In the spring of that year I traveled to Johns Hopkins in Baltimore to get a definitive diagnosis. They told me that I probably had ten years of “useable” vision left. That started a clock for me. I felt motivated to see as much of the world as possible in my time left. I threw myself into going out, travel and trying to experience the world as much as possible.
I used RP as a catalyst to reshape myself. I decided I was going to be successful because it was hard. Because the sighted world saw me as incapable. I wanted to beat them at their own game. My reinvention led to getting a new circle of friends, a girlfriend and buying he first piece of real estate I’d ever owned.
RP also exposed to frustrating limitations. I wasn’t able to take a fantastic new job because I couldn’t get transportation. I was also learning how to use the cane in public. The results were mixed. My cane and limited vision confused everyone. Sometimes even myself. If I pretended to be sighted I’d end up acting strange when I couldn’t see. When I used my cane, I got a lot of unwanted attention or people were confused when I still showed some visual ability. It’s a dilemma with no good choices.
Part 9 can be found here.
Wednesday, December 16, 2015
Losing Well Part 7
Continuation of my series, Losing Well. Part 1 can be found here.
January, 2000
They decided to do away with my whole group as soon as this project is over at the bank. It’s classic common sense accounting that makes no sense in the software industry. Let’s cut all these expensive techies. But they don’t realize how much we save and earn the bank. Just another sign that MBA training is behind the tech curve. Everyone is leaving. Stressful time.
February, 2000
I bought the condo! Went to San Fransisco for the first time. Got to see the Golden Gate. Went to a great 150 year old bar for breakfast not far from the Wharf. Also got a new job at the bank. I’m working on the web now. Another notch in my belt. I’ve been promised a team lead position if I stick it out. Otherwise, going out a lot. Dated a couple of girls. I’m not really ready.
March, 2000
Moved into the condo. Now I have a swinging bachelor pad right downtown. Let the fun begin. Running sound whenever the band gets a gig. Been a year since I found out about RP. What a mess it made of my life. Not all changes are unnecessary.
April, 2000
My life is surreal. It makes no sense to me. I’m fighting against a future so certain that I falter under it’s gaze. And yet I do the impossible. Everyday, day after day. I no longer recognize what I have become. I never planned this version of me.
19 April 2000
Went to Johns Hopkins. They had nothing good to say to me. My fields are down to 10 and 7. Around 5 percent. Found a cataract in my right eye, inoperable. They did not want to operate on my amblyopia either. Fine with me. I get the sense they’re just trying to make me comfortable without wasting effort on mostly fruitless opportunities. Did the DC thing on the way home. The capitol mostly. Also, I am now a team lead at work.
The following is my medical report from my appointment with Johns Hopkins. I’ve elaborated on the findings in brackets. The information was presented to me in this complicated fashion with little explanation.
Letter from Johns Hopkins:
We discussed the surgical options for the exotropia. He has a quite restricted visual field, and he may actually be gaining an artificial increase in his visual field with the strabismus [lazy eye]. I explained that we could surgically straighten the eye which would improve his ability to make eye contact and improve the appearance, but it would have the negative consequence of constricting his already limited visual fields.
Regarding the symptomatology, he has a strong left eye fixation preference and probably has used that eye most of life. Perhaps as the visual field has begun to decline, he is s witching spontaneously to the right eye more frequently. This use of an amblyopic eye can cause the instability that he noticed. In addition the cataract is probably causing the halos and blurred vision on that side..
Major Findings:
There is no significant improvement on pinhole. Retinoscopic [the refractiveness of the eye] flash of the right eye over his Rx was plano [flat].
Extraocular movement were full. The lids were normal. Visual fields were constricted with spared islands peripherally. Conjuctiva is normal. Cornea is clear. Anterior [toward the front] chamber is deep and quiet. The iris appears normal. The patient is pseudophakic [no known meaning] in the right eye and has a tiny posterior subcapsular opacity [opaque] in the left eye which I do not believe is visually significant.
Dilated fundus [the base of a hollow organ] examination was performed with indirect ophthalmoscopy [examination with a ophthalmoscope] and slitlamp for biomicroscopy [microscopic examination]. There is disc pallor [unnatural paleness] in both eyes. The arterioles [arteries between the muscles arteries and the capillaries] are narrowed.
There is no definite macular edema [accumulation of fluid or hard tissue around the macula in the retina], but this was a difficult examination. There is diffuse bone spicule [small sharp-pointed particulates] pigmentation for 360 degrees in both eyes.
Goldmann visual fields [manual tests] were performed with to document any progression in the RP. In the right eye, he no longer had a temporal [towards the temples] crescent present. The central field to the V-4 appears slightly more constricted to about 25 degrees in diameter in the right eye. The left eye, there is still a preserved crescent temporally with a central field diameter of about 30 degrees to the V-4. Thus, there was a loss of the temporal crescent in the right eye and some small amount of narrowing of the field centrally.
Assessments:
1. Retinitis pigmentosa, sporadic inheritance.
2. Cataract, posterior subcapsular, right eye.
3. Exotropia constant [lazy eye].
Part 8 can be found here.
January, 2000
They decided to do away with my whole group as soon as this project is over at the bank. It’s classic common sense accounting that makes no sense in the software industry. Let’s cut all these expensive techies. But they don’t realize how much we save and earn the bank. Just another sign that MBA training is behind the tech curve. Everyone is leaving. Stressful time.
February, 2000
I bought the condo! Went to San Fransisco for the first time. Got to see the Golden Gate. Went to a great 150 year old bar for breakfast not far from the Wharf. Also got a new job at the bank. I’m working on the web now. Another notch in my belt. I’ve been promised a team lead position if I stick it out. Otherwise, going out a lot. Dated a couple of girls. I’m not really ready.
March, 2000
Moved into the condo. Now I have a swinging bachelor pad right downtown. Let the fun begin. Running sound whenever the band gets a gig. Been a year since I found out about RP. What a mess it made of my life. Not all changes are unnecessary.
April, 2000
My life is surreal. It makes no sense to me. I’m fighting against a future so certain that I falter under it’s gaze. And yet I do the impossible. Everyday, day after day. I no longer recognize what I have become. I never planned this version of me.
19 April 2000
Went to Johns Hopkins. They had nothing good to say to me. My fields are down to 10 and 7. Around 5 percent. Found a cataract in my right eye, inoperable. They did not want to operate on my amblyopia either. Fine with me. I get the sense they’re just trying to make me comfortable without wasting effort on mostly fruitless opportunities. Did the DC thing on the way home. The capitol mostly. Also, I am now a team lead at work.
The following is my medical report from my appointment with Johns Hopkins. I’ve elaborated on the findings in brackets. The information was presented to me in this complicated fashion with little explanation.
Letter from Johns Hopkins:
We discussed the surgical options for the exotropia. He has a quite restricted visual field, and he may actually be gaining an artificial increase in his visual field with the strabismus [lazy eye]. I explained that we could surgically straighten the eye which would improve his ability to make eye contact and improve the appearance, but it would have the negative consequence of constricting his already limited visual fields.
Regarding the symptomatology, he has a strong left eye fixation preference and probably has used that eye most of life. Perhaps as the visual field has begun to decline, he is s witching spontaneously to the right eye more frequently. This use of an amblyopic eye can cause the instability that he noticed. In addition the cataract is probably causing the halos and blurred vision on that side..
Major Findings:
There is no significant improvement on pinhole. Retinoscopic [the refractiveness of the eye] flash of the right eye over his Rx was plano [flat].
Extraocular movement were full. The lids were normal. Visual fields were constricted with spared islands peripherally. Conjuctiva is normal. Cornea is clear. Anterior [toward the front] chamber is deep and quiet. The iris appears normal. The patient is pseudophakic [no known meaning] in the right eye and has a tiny posterior subcapsular opacity [opaque] in the left eye which I do not believe is visually significant.
Dilated fundus [the base of a hollow organ] examination was performed with indirect ophthalmoscopy [examination with a ophthalmoscope] and slitlamp for biomicroscopy [microscopic examination]. There is disc pallor [unnatural paleness] in both eyes. The arterioles [arteries between the muscles arteries and the capillaries] are narrowed.
There is no definite macular edema [accumulation of fluid or hard tissue around the macula in the retina], but this was a difficult examination. There is diffuse bone spicule [small sharp-pointed particulates] pigmentation for 360 degrees in both eyes.
Goldmann visual fields [manual tests] were performed with to document any progression in the RP. In the right eye, he no longer had a temporal [towards the temples] crescent present. The central field to the V-4 appears slightly more constricted to about 25 degrees in diameter in the right eye. The left eye, there is still a preserved crescent temporally with a central field diameter of about 30 degrees to the V-4. Thus, there was a loss of the temporal crescent in the right eye and some small amount of narrowing of the field centrally.
Assessments:
1. Retinitis pigmentosa, sporadic inheritance.
2. Cataract, posterior subcapsular, right eye.
3. Exotropia constant [lazy eye].
Part 8 can be found here.
Losing Well Part 6
Continuation of my series, Losing Well. Part 1 can be found here.
3 September 1999
To Whom It May Concern,
Mr. Mayhew is a client of the state Division of the Blind [and is] seeking help with mobility issues which are a result of his retinitis pigmentosa. He does have retinitis pigmentosa and does have severe restrictions in his visual fields.
Individualized Plan for Employment
This is my individualized plan for employment. I have been provided with opportunities to participate and make informed choices in my vocational goal, services, service providers and ways to get services. The employment goal is should be met by 6/2000. These are the services needed to meet my employment goal:
Services needed: Mobility Services
Beginning Date: 9/99
Who will pay for service: Division of the Blind
Services needed: Guidance and Counseling about adjustment to blindness
Beginning date: 9/99
Who will pay for service: Division of the Blind.
3 September 1999
The wife and I have come to an agreement about the stuff. I’m starting over. But that’s okay. My friends are going to help me move all that’s left. I’m looking forward to it! I think that this is one of the best things that could happen to me.
4 September 1999
Things are crazy here. I got the separation papers from wife. Trying to pack. I met my case worker. She was nice but the documentation they have you fill out is so insulting. It’s like I’m going blind on purpose just so i can milk the state.
10 September 1999
I moved to an apartment 4 blocks from work. I moved in with nothing more than my clothes and a sleeping bag. I let her have everything. Stopped driving.
21 October 1999
I’m supposed to run sound for a band tonight. I don't know if I told you or not but I started using a cane. I really think this is a good thing. Finally got furniture for the apartment.
9 November 1999
When I started emailing you I was married, drove and lived in a house in the country. Now I use a cane, live in an apartment in the heart of the city with all new stuff and I’m separated from my wife. It has only been six months! I look around sometimes and wonder how the hell I got here. But in many ways, I’m happier.
27 December 1999
Sorry it has been so long. Got really busy at work. All this month I have been putting in 60+ hour weeks. I’m buying a condo! It’s right across from the park and about 2 blocks from work.
December 2015
Somehow I survived 1999, my year of upheaval. Everything I knew came crashing down. I was very numb during this whole process. I kept busy working. I was lucky to have a job. It kept me going and allowed me to afford to live downtown. In the space of a year, I’d morphed from a home body married man into a work hard/play hard single man. The transformation left me dizzy.
Another big change in 1999 was using a white cane. The cane is a symbol and it identified me as disabled. I needed to use it to get around and let others know that I needed help getting around. But I had a hard time admitting my weakness to the world. I didn't like being needy.
Towards the end of 1999, I started seeing a therapist. She was worried that I’d slipped into a situational depression. She told me that what I needed was grief counseling for losing my eyesight. She encouraged me to start dating again.
Part 7 can be found here.
3 September 1999
To Whom It May Concern,
Mr. Mayhew is a client of the state Division of the Blind [and is] seeking help with mobility issues which are a result of his retinitis pigmentosa. He does have retinitis pigmentosa and does have severe restrictions in his visual fields.
Individualized Plan for Employment
This is my individualized plan for employment. I have been provided with opportunities to participate and make informed choices in my vocational goal, services, service providers and ways to get services. The employment goal is should be met by 6/2000. These are the services needed to meet my employment goal:
Services needed: Mobility Services
Beginning Date: 9/99
Who will pay for service: Division of the Blind
Services needed: Guidance and Counseling about adjustment to blindness
Beginning date: 9/99
Who will pay for service: Division of the Blind.
3 September 1999
The wife and I have come to an agreement about the stuff. I’m starting over. But that’s okay. My friends are going to help me move all that’s left. I’m looking forward to it! I think that this is one of the best things that could happen to me.
4 September 1999
Things are crazy here. I got the separation papers from wife. Trying to pack. I met my case worker. She was nice but the documentation they have you fill out is so insulting. It’s like I’m going blind on purpose just so i can milk the state.
10 September 1999
I moved to an apartment 4 blocks from work. I moved in with nothing more than my clothes and a sleeping bag. I let her have everything. Stopped driving.
21 October 1999
I’m supposed to run sound for a band tonight. I don't know if I told you or not but I started using a cane. I really think this is a good thing. Finally got furniture for the apartment.
9 November 1999
When I started emailing you I was married, drove and lived in a house in the country. Now I use a cane, live in an apartment in the heart of the city with all new stuff and I’m separated from my wife. It has only been six months! I look around sometimes and wonder how the hell I got here. But in many ways, I’m happier.
27 December 1999
Sorry it has been so long. Got really busy at work. All this month I have been putting in 60+ hour weeks. I’m buying a condo! It’s right across from the park and about 2 blocks from work.
December 2015
Somehow I survived 1999, my year of upheaval. Everything I knew came crashing down. I was very numb during this whole process. I kept busy working. I was lucky to have a job. It kept me going and allowed me to afford to live downtown. In the space of a year, I’d morphed from a home body married man into a work hard/play hard single man. The transformation left me dizzy.
Another big change in 1999 was using a white cane. The cane is a symbol and it identified me as disabled. I needed to use it to get around and let others know that I needed help getting around. But I had a hard time admitting my weakness to the world. I didn't like being needy.
Towards the end of 1999, I started seeing a therapist. She was worried that I’d slipped into a situational depression. She told me that what I needed was grief counseling for losing my eyesight. She encouraged me to start dating again.
Part 7 can be found here.
Tuesday, December 15, 2015
Losing Well Part 5
Continuation of my series, Losing Well. Part 1 can be found here.
1 August 1999
My employer hired an outside company to help its employees deal with future planning and they are calling me today to go over Long Term Disability and SSDI.
3 August 1999
I had the test, but no test results. My doctor is out of town until next week. He originally had me take a 60 degree threshold test which he now thinks was too broad to determine how many degrees I still have. So I went back and took the 2-30 degree test. The test doesn't tell you how many degrees but it does print out a map of what I can see. I’ll be surprised if I have more than 15 degrees in my left eye and more than 10 in my right. Total guess work at this point. Find out next week. I guess that would make me legally blind. Wait and see.
6 August 1999
I went to counseling. Oh boy. I told her all of the things that I have been telling you. It kinda felt good to get it all out. But she got really upset. I honestly don't think that she thought her actions had their own effect on our situation. So all of my hurt and anger is out there now.
7 August 1999
I met with the guy at work who is blind. He was born without eyes. He told me that he thinks I’m in a tougher place because I know what it’s like to see. I live in that gray in-between world of the half-sighted.
8 August 1999
A friend called me. I will be running sound for a band tonight at a art gallery/night club. My life has changed so much since my wife left. I never would have done half of this stuff before
19 August 1999
The marriage counselor just called. My wife has decided to stop counseling. I’m not sure what this means exactly. I have called her house and no one answers. I don't know if this means she wants a separation or what. Needless to say, I am a little upset.
21 August 1999
Will I come out a stronger person? I don't know.
22 August 22, 1999
I find out tomorrow if I am legally blind. Nervous. I need a vacation
23 August 1999
Wife just called. She wants to separate our possessions.
23 August 1999
Turns out I find out tomorrow if I am legally blind. If I am, I have to stop driving and move to were I can get to public transportation. My marriage counselor called to say that my wife wants to stop counseling and she called me today to say that we need to separate our possessions. That is about it though.
24 August 1999
Found out today I’m legally blind. I have less than 20 degrees if vision. Also met with Division of the Blind today.
26 August 1999
I cannot seem to feel anything. Like I am a spectator in my own life.
29 August 1999
I found an apartment.
30 August 1999
I got a really cool apartment 4 blocks from work. Getting legally separated. Stop driving soon and that is going to be a shock to the system. I have a case worker at Division of the Blind now. Start cane training pretty soon. Life is moving real fast here.
Part 6 can be found here.
1 August 1999
My employer hired an outside company to help its employees deal with future planning and they are calling me today to go over Long Term Disability and SSDI.
3 August 1999
I had the test, but no test results. My doctor is out of town until next week. He originally had me take a 60 degree threshold test which he now thinks was too broad to determine how many degrees I still have. So I went back and took the 2-30 degree test. The test doesn't tell you how many degrees but it does print out a map of what I can see. I’ll be surprised if I have more than 15 degrees in my left eye and more than 10 in my right. Total guess work at this point. Find out next week. I guess that would make me legally blind. Wait and see.
6 August 1999
I went to counseling. Oh boy. I told her all of the things that I have been telling you. It kinda felt good to get it all out. But she got really upset. I honestly don't think that she thought her actions had their own effect on our situation. So all of my hurt and anger is out there now.
7 August 1999
I met with the guy at work who is blind. He was born without eyes. He told me that he thinks I’m in a tougher place because I know what it’s like to see. I live in that gray in-between world of the half-sighted.
8 August 1999
A friend called me. I will be running sound for a band tonight at a art gallery/night club. My life has changed so much since my wife left. I never would have done half of this stuff before
19 August 1999
The marriage counselor just called. My wife has decided to stop counseling. I’m not sure what this means exactly. I have called her house and no one answers. I don't know if this means she wants a separation or what. Needless to say, I am a little upset.
21 August 1999
Will I come out a stronger person? I don't know.
22 August 22, 1999
I find out tomorrow if I am legally blind. Nervous. I need a vacation
23 August 1999
Wife just called. She wants to separate our possessions.
23 August 1999
Turns out I find out tomorrow if I am legally blind. If I am, I have to stop driving and move to were I can get to public transportation. My marriage counselor called to say that my wife wants to stop counseling and she called me today to say that we need to separate our possessions. That is about it though.
24 August 1999
Found out today I’m legally blind. I have less than 20 degrees if vision. Also met with Division of the Blind today.
26 August 1999
I cannot seem to feel anything. Like I am a spectator in my own life.
29 August 1999
I found an apartment.
30 August 1999
I got a really cool apartment 4 blocks from work. Getting legally separated. Stop driving soon and that is going to be a shock to the system. I have a case worker at Division of the Blind now. Start cane training pretty soon. Life is moving real fast here.
Part 6 can be found here.
Losing Well Part 4
Continuation of my series Losing Well. Part 1 can be found here.
What follows is a blow by blow description of how RP changed my life. Whenever possible, I use primary sources. These could be emails that I sent, journal entries and even IM’s. I expand this narrative to further explain events as they unfolded. The text has been edited where necessary for grammar and context.
May 1999
I got the shock of my life. Forever to be changed. Made sense in a weird sort of way. Explained a lot of my problems growing up. Wife didn’t take it well. Afraid that she will have to take care of me some day. “I didn’t sign up for this.”
Worried that I will have to stop driving if I am legally blind. Not sure how you even find out. Trying to deal with RP. Still working really hard.
2 May 1999
I just ran across your site and I was hoping that you could send me in
the right direction here. My doctor told me last night that I have RP. I know nothing about it. I have the same symptoms that you described, lack of night vision, bad peripheral vision, use of one eye at a time, lack of depth perception. It’s good to know I am not the only one. I am going for a second opinion soon.
25 May 1999
No one else in my family has RP. My parents keep saying that they will find a cure for RP. They’re trying to help me but all I really need is for understanding, not false hope.
1 June 1999
Work has been insane. My current project is just about over so I look to have a better summer than I did spring. Things at home have suffered though. Ups and downs. Started marriage counseling.
25 June 1999
I’m still fighting with the insurance people. I'm glad RP isn’t life threatening. I’d be dead by now. Counseling sucked. We had a talk this weekend about how she had reached the end of her patience and that if I did not change soon then she would leave. It would almost be a relief. I have no hope this can be worked out. I have no hope that it will end quickly either. I feel in limbo hell. I guess I could make the first move but it was for better and worse and all of that.
2 July 1999
Wife is spending the night at her Mother’s. I see nothing else I can do. If we separate, I don’t think I could ever come back. Freedom would taste too good.
4 July 1999
Independence Day. Let’s see, wife is still at her Mother’s and is not coming back until she thinks that I've changed. I’ve enjoyed the last several days of solitude. I realize now how much my will has been sucked into pleasing her.
Anyway, went out drinking last night for the first time since I can't remember. A good friend drove and everything. I ran into some of the same problems that you talked about - hard to read faces, running into people/things. But it was still a blast. In a strange way, I could see better outside since all the streets are lighted.
7 July 1999
I’m going to get genetically tested for RP. The insurance came through after a month of paper work hell. I think that they will approve anything if you fill out enough forms and make them keep reading them. They told me about a prescription Vitamin A that I need to start taking. It seems to slow the spread of RP somewhat. Anything that helps.
15 July 1999
It’s strange now that I’m living alone.
23 July 1999
I just found out that you have to have more than 60 degrees of vision to drive. So before long, I will have to stop driving. And in the middle of this my wife walks out. I feel like I am being kicked while I am down.
24 July 1999
As far as driving, my optometrist said he was going to doing some searching and re-exam my charts and give me a recommendation next week. My Ophthalmologist didn't give me the time of day. He didn’t know anything about RP. I wonder how typical this is?
25 July 1999
I read through the weekend’s RP digests [email listserver] and it has me thinking about my future. My company offers long term disability but I don't know a thing about it. I would have to find the "right" way to ask that question. Anyway, it is an idea that I am thinking of. I hope I have decades of private employment before me but you just never know.
26 July 1999
I have a work handbook but it doesn't go into much detail. My boss knows I have RP and has been understanding so I think I'll just talk to him about it. I don't want to go blind alone either. I feel so confused. Nothing has ever prepared me for this moment in life. If I divorced who would want a visually impaired boyfriend? I have always solved problems by thinking out of them but I can not think my way out of any of this.
I know that I need to stop driving sooner rather than later. And to accomplish that goal I have to move. But I live in our house. If I left now it would end the marriage for real. Wife doesn’t want to live in the city. It’s so frustrating. I feel trapped into staying here and driving. I both want to and don’t want to start cane training. I guess it is an acceptance of RP that I haven’t been able to commit to yet. But at night I feel helpless.
27 July 1999
I called the state’s Division of the Blind. They’re two blocks from where I work. They gave me a run down of the services that they provide and none really applied to me but O&M [cane training]. I’m night blind to the point of being a danger to myself. They said I need to meet with them so that they could open a case on me then they would refer me to O&M training. I told them I would call them. It would be a big first step that I am hesitant to take.
28 July 1999
I just called back my optometrist. I have an appointment for next week. We’re going to narrow down exactly how much field of vision I have left.
29 July 1999
I’m feeling trapped into staying at the house. I think I’m going to have to stop driving soon and to do that I have to move. But I can’t do that until this thing with the wife is settled. So I'm stuck and it's for real reasons that I need to move. So frustrated. I'm thinking about getting O&M training for night time walking. Sick of killing myself at night.
30 July 1999
I called the Division of the Blind. I feel so weird doing this. I’m on an list server for RP that is helping me. The best way to describe what I have is, I can see a paper clip on the other side of the room but I will trip over an Elephant trying to get to it.
31 July 1999
In therapy I told them how horrible things have been going and my wife seemed pleased that things were going so bad for me. I’m sick of all of this. I'm starting to foresee life every after without her. And that thought does not hurt as much now. At least the limbo would be over.
Part 5 can be found here.
What follows is a blow by blow description of how RP changed my life. Whenever possible, I use primary sources. These could be emails that I sent, journal entries and even IM’s. I expand this narrative to further explain events as they unfolded. The text has been edited where necessary for grammar and context.
May 1999
I got the shock of my life. Forever to be changed. Made sense in a weird sort of way. Explained a lot of my problems growing up. Wife didn’t take it well. Afraid that she will have to take care of me some day. “I didn’t sign up for this.”
Worried that I will have to stop driving if I am legally blind. Not sure how you even find out. Trying to deal with RP. Still working really hard.
2 May 1999
I just ran across your site and I was hoping that you could send me in
the right direction here. My doctor told me last night that I have RP. I know nothing about it. I have the same symptoms that you described, lack of night vision, bad peripheral vision, use of one eye at a time, lack of depth perception. It’s good to know I am not the only one. I am going for a second opinion soon.
25 May 1999
No one else in my family has RP. My parents keep saying that they will find a cure for RP. They’re trying to help me but all I really need is for understanding, not false hope.
1 June 1999
Work has been insane. My current project is just about over so I look to have a better summer than I did spring. Things at home have suffered though. Ups and downs. Started marriage counseling.
25 June 1999
I’m still fighting with the insurance people. I'm glad RP isn’t life threatening. I’d be dead by now. Counseling sucked. We had a talk this weekend about how she had reached the end of her patience and that if I did not change soon then she would leave. It would almost be a relief. I have no hope this can be worked out. I have no hope that it will end quickly either. I feel in limbo hell. I guess I could make the first move but it was for better and worse and all of that.
2 July 1999
Wife is spending the night at her Mother’s. I see nothing else I can do. If we separate, I don’t think I could ever come back. Freedom would taste too good.
4 July 1999
Independence Day. Let’s see, wife is still at her Mother’s and is not coming back until she thinks that I've changed. I’ve enjoyed the last several days of solitude. I realize now how much my will has been sucked into pleasing her.
Anyway, went out drinking last night for the first time since I can't remember. A good friend drove and everything. I ran into some of the same problems that you talked about - hard to read faces, running into people/things. But it was still a blast. In a strange way, I could see better outside since all the streets are lighted.
7 July 1999
I’m going to get genetically tested for RP. The insurance came through after a month of paper work hell. I think that they will approve anything if you fill out enough forms and make them keep reading them. They told me about a prescription Vitamin A that I need to start taking. It seems to slow the spread of RP somewhat. Anything that helps.
15 July 1999
It’s strange now that I’m living alone.
23 July 1999
I just found out that you have to have more than 60 degrees of vision to drive. So before long, I will have to stop driving. And in the middle of this my wife walks out. I feel like I am being kicked while I am down.
24 July 1999
As far as driving, my optometrist said he was going to doing some searching and re-exam my charts and give me a recommendation next week. My Ophthalmologist didn't give me the time of day. He didn’t know anything about RP. I wonder how typical this is?
25 July 1999
I read through the weekend’s RP digests [email listserver] and it has me thinking about my future. My company offers long term disability but I don't know a thing about it. I would have to find the "right" way to ask that question. Anyway, it is an idea that I am thinking of. I hope I have decades of private employment before me but you just never know.
26 July 1999
I have a work handbook but it doesn't go into much detail. My boss knows I have RP and has been understanding so I think I'll just talk to him about it. I don't want to go blind alone either. I feel so confused. Nothing has ever prepared me for this moment in life. If I divorced who would want a visually impaired boyfriend? I have always solved problems by thinking out of them but I can not think my way out of any of this.
I know that I need to stop driving sooner rather than later. And to accomplish that goal I have to move. But I live in our house. If I left now it would end the marriage for real. Wife doesn’t want to live in the city. It’s so frustrating. I feel trapped into staying here and driving. I both want to and don’t want to start cane training. I guess it is an acceptance of RP that I haven’t been able to commit to yet. But at night I feel helpless.
27 July 1999
I called the state’s Division of the Blind. They’re two blocks from where I work. They gave me a run down of the services that they provide and none really applied to me but O&M [cane training]. I’m night blind to the point of being a danger to myself. They said I need to meet with them so that they could open a case on me then they would refer me to O&M training. I told them I would call them. It would be a big first step that I am hesitant to take.
28 July 1999
I just called back my optometrist. I have an appointment for next week. We’re going to narrow down exactly how much field of vision I have left.
29 July 1999
I’m feeling trapped into staying at the house. I think I’m going to have to stop driving soon and to do that I have to move. But I can’t do that until this thing with the wife is settled. So I'm stuck and it's for real reasons that I need to move. So frustrated. I'm thinking about getting O&M training for night time walking. Sick of killing myself at night.
30 July 1999
I called the Division of the Blind. I feel so weird doing this. I’m on an list server for RP that is helping me. The best way to describe what I have is, I can see a paper clip on the other side of the room but I will trip over an Elephant trying to get to it.
31 July 1999
In therapy I told them how horrible things have been going and my wife seemed pleased that things were going so bad for me. I’m sick of all of this. I'm starting to foresee life every after without her. And that thought does not hurt as much now. At least the limbo would be over.
Part 5 can be found here.
Subscribe to:
Posts (Atom)