SeersTower

Hello,

My husband was diagnosed with a syndrome that means that he will gradually lose his vision. He already has a very limited range of vision. Another part of his disability is partial deafness, which he has known about his whole life. He wears hearing aids.

He was diagnosed almost a year ago but he still seems to be in denial of his problem. I've been very loving and supportive but he's depressed, mean to me, sullen, doesn't want to do anything fun, and he won't sell his car (he's agreed that he shouldn't drive anymore and we need the cash).

I've begged him to go to the Braille Institute for counseling free of charge. He refuses to emotionally deal with his disability. Since he's had hearing aids since he was three, he's been treated like he's deaf or mentally handicapped at times (which he isn't, he's very intelligent) so I can see how his vision loss really comes as a kick to the balls.

I know that I can't truly relate to how he's feeling even though I know this is horrible for him. I feel that my patience is at its limit. He acts out, like taking his car for a ride when he gets angry at me. He makes me cry when he says cruel things to me.

When I try to talk to him about something concerning his disability, he asks me about how many resumes I've sent out. It's true that I'm unemployed but I consider this to be a temporary situation since the economy is lousy and I just graduated from college. I'm very sensitive about the fact that I don't have a job and he knows it. His mentioning my joblessness when I try to talk about his vision infuriates me because he's doing it just to get under my skin.

I don't know what to do anymore! I'm so unhappy with the way he's treating me. He was so affectionate before he found out about his vision loss and sometimes I see that side of him when he's in a good mood. Sometimes he tells me that he hates himself for how he treats me. I'm really confused. If he hates how he treats me, why doesn't he stop being so mean?

I've been thinking about divorcing him but that's a really big step and I'm not about to do it just yet. I can live with a disabled man but I don't think I can live with how cruel he is to me sometimes. I knew that he had something wrong with his vision before we were married but I didn't anticipate him becoming somebody totally different. I don't care if my husband can't see anything- I just want the man I fell in love with back!

If anybody can recommend resources to me as well as advice, I live in Orange County, CA.

mrs. lady

Sweetie, let me tell you how sorry I am for you and your husband. This has to an immensely hard time for you both. You sound like an amazing woman with a strong head on her shoulders though and I'm sure you'll have the strength to do what is right for you.

Honestly I don't know if anyone on these forums would be able to advise you on this. It is a very complex and unique situation. I would suggest looking into support groups for people with this disorder and their families. I'm sure they would have insights into what he is going though now and will have to struggle with in the future as well as how it will impact your relationship. Also, I think you should try and see a professional counselor, even if he won't go with you, talking to a professional about this could really help you gain some perspective.

All the best to you and your husband.

preso

I knew someone like that, who found out he had a disease that would make him not only blind but be in a wheelchair... I think it was Huntingtons disease.
He dressed up in a suit and layed in his bed and blew his head off !

so be careful and remove all guns from the house as finding out you have some terrible disease can do strange things to people.

SeersTower

Mrs. Lady, I'm taking your advice and I'm going to see a counselor tomorrow. I've asked my husband to come with me but I don't know if he will or not at this point.

As for removing all the guns from the house, he's a smart cookie- if he really wanted to kill himself, he'd find another way. So I don't think having a shotgun hanging around makes much of a difference. He isn't suicidal, as far as I can tell.

preso

If I were in his situation and told I had a wasting disease, I would be thinking about ending my life myself.
I've seen people die and a long painfu and very horrible death, and a wasting disease is something I would have trouble coping with if I got one. I think anyone would.
Your in luck though... as these days there are support groups for everything and I'm sure he can find one close to home.

best wishes

Mog

Finding out that you are slowly going blind can be a terrifying experience. It is not right to take out his frustration on you, but unfortunately the spouse pays the price in the majority of these cases.

It is hard to concentrate on being nice when you have something like this looming over you. It is extremely stressful for everybody envolved.

The good news is that there are a lot of resources available to make life a little less scary. Contact the “California Department of Rehabilitation”. They can teach him how to retain his independence and will help him to obtain gainful employment. They can help teach him Braille and introduce him to software that will let him keep using a computer.


You should be able to locate a Library for the Blind that will send him books on tape or in Braille. There are a lot of resources and support groups available if you know where to look, and these people will know where to look.

Best of luck.