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Disability Grants Will Help Retinitis Pigmentosa Disabled Woman To Write

by Robin Williamson
(Kirkland, Arizona, USA)

I will be 49 in just a couple of months. I was widowed at the age of 40, when my husband committed suicide.

It took two and a half years to prove my rights as heir, as we were common law married.

After a long ordeal the judge did award me the house. Not sure if this was a good thing though. This was just before the housing crisis began.

I have four grown children. They all live 1000 miles or more away. I also have three grandchildren that I have only seen pictures of.

I live in a very rural area and have been in this area for 20 years now.

Disability Issues

The name of my problem is Retinitis Pigmentosa or RP for short. This is a deterioration of the retina. There is no cure as of yet.

The doctors really can't tell you much, other than general knowledge about RP. Individuals seem to have the same experiences, but at different intensities and rates.

Some days are better than others, but those days that I turn and slam into the wall really hurt and make for a bad day.

I am legally blind. I only have the very center of my visual field. Most people forget that I can't see much, until I fall or run into the wall.

I am not really sure if the low vision/blindness is the disability or the mental stress and depression from trying to cope with going blind at an unknown rate.

It seems like the hardest thing to explain to others. As your sight is diminishing you have tunnel vision, like a horse with blinders on.

And people with RP can't see the stars. What is happening is your light reception is failing.

It is very hard to stay strong and to keep your mind about yourself. It is hard to make decisions sometimes.

You don't always know what kind of help you may need and it is very hard asking for help from your friends.

And it's not easy finding any help in some communities. I don't recommend going blind.

Financial Hardship

Having this house has just made things more confusing for me. I am on SSDI; it's not a large income although I am very thankful I have it.

I get by, but I don't pay a house payment due to the agreement made with the loan holder to sell the house.

With the housing crisis no one is looking to move 100 miles from his or her work. I am in the middle of ranching country, very rural.

I have been in this house a long time and have not been able to do the work on it that it badly needs.

The roof leaks and I haul water inside in a jug from an outside faucet. It got mold from the leaking roof, but I did get the sheet rock and insulation torn out of that area.

I am about ready to give up on this house, and just sign it over to the loan holder. My problem is I don't know where to go, or what's out there.

Should I rent or Buy? Can I even buy? I don't have any savings.

I thought about moving closer to my children, but I don't want to burden them and I don't know how to do that over the long distance.

Not driving keeps me confused about how to take care of my own business.

I feel like I am not helpless and could do a lot of stuff and yet I am totally stumped on how to get my life in order.

Income Efforts

As I said before I am on SSDI. I never had much work experience outside the home.

I was always a wife and mother. This did consist of many capabilities. So I never considered myself as helpless or stupid.

Now with RP there is so much turmoil in my mind I don't get too much done.

I have tried hand-carving cottonwood. I thought it was cool, good for my self-esteem and I enjoy doing it very much.

I'm not very good but some pieces turn out quite alright.

I sold a few to my neighbors but it seems that I would not make my fortune there.

I have a passion for writing and have enrolled in a correspondence writing course for a small monthly payment, but with everything in my life so unorganized I can't seem to concentrate on doing the work.

Of course this upsets and stresses me.

Specific Needs

What I need is a life coach that understands my situation. I need help to figure out where I should be living and how to get there.

I don't know if I should buy or rent. I think I should be buying, but with no savings that doesn't seem possible.

Medically I am fairly healthy, but the appearance of my mouth missing so many teeth and the ones there being crooked, broken and full of cavities, turns people off.

It gives them a bad impression before they even know my name.

Before the dental on my medical insurance was cancelled, I was working on getting them pulled one or two at a time.

I have even paid cash for extractions I needed when in severe pain.

I can't seem to find a way to finish the extractions and how to get dentures.

Business Idea

If I could get my life organized and my home situation fixed, I really think I have some good book ideas.

Some are for a children's series of stories about some cowboy super heroes.

And I also would like to write about blindness. I have an idea for a weekend type seminar to teach the spouse or caring support what it is like for their blind family or friend having tunnel vision and blindness.

There are many little things that others don't think about being difficult until they give it a try with side blinders or a blindfold.

And to get the true feeling this needs to be done over a couple days so the blinders or blindfold can be worn for hours at a time.

It's not effective enough for people just to wear the blinder or blindfold for the task then take it right off to see what they did.

I feel if others experience what we are going through each day, maybe it would help in some way. They may become more supportive or at least not be so unsupportive.

There isn't a lot of material out there explaining blindness to either the sighted or to the blind.

I hear people with low vision all the time saying they wish they could find books or some kind or information on what is happening to them and how to deal with it all.

It's not just the medical outlook of particular diseases, but how actual people live with the progression of going blind.

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Jan 18, 2017
Wonderful Article
by: Mary

I really enjoyed this article. I also have RP and I am an author (working on getting my first book published). Living with the disease is very frustrating and hard, especially having to depend on others so much. I am currently on SSDI, but I hope to soon be able to make a decent income from my books so I won't have to depend on government assistance. It's a rough process however, as I'm self taught and most publishers look for credentials. I would love to read a book on the disease and living with it as well as your journey to become an author.

Thank you for sharing your story.

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