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.