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.

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.

Losing Well Part 3

Continuation of my series Losing Well. Part 1 can be found here.


   I threw myself into my new job as an IT consultant. I was working long hours and  didn’t get to see my wife much. This was probably good for our relationship. At least at first. I was having increasing problems driving at night and this did cause some stress between us. After a year of consulting, I was hired to work for a bank in their IT department. She was excited about my new job because it meant stability. She wanted to stay at home and have kids.  
    Late that spring, I went to the an optometrist to get a new prescription. My wife was sick of my complaining about not wanting to drive at night. So I explained to the doctor that I had problems driving after sunset. I also told him how I tripped a lot and couldn’t find things that I had just set down. The doctor had me take a visual fields test. The test was easy enough. I looked at a blank screen and whenever a flash of light appeared, I just had to push a button.
    At first, I thought the machine was malfunctioning. I didn’t see any lights flash for the first couple of minutes. Finally, after about ten minutes and a handful of button pushes, the computer evaluating my performance stopped the test. The computer thought I was lying. I was below it's level of peripheral vision measurability. At first I thought it was a software bug. That’s something that I could understand. The doctor had me retake the test.
    By this time, the practice had closed and the doctor was acting nervous. He’d dilated my eyes several times and the sun had set. I was fearful of the drive home. The doctor pulled out his old college textbook and handed it to me. He told me that I had an eye disease of the retina, retinitis pigmentosa. The disease had no treatment or cure and it was probably going to lead to blindness.
    I thanked the doctor and went to my car. I was numb. I called my wife. I told her that I probably needed to stop driving. Her reaction was to get angry at me. She told me that since there was nothing I could do about the eye disease, I shouldn’t change my life. I should just keep doing what I’d been doing. I thought this was preposterous. I didn’t realize it at the time but finding out about RP would destroy my life.

Part 4 can be found here.