Hi Michael,
I'm Z, 18, from Washington. I share your eye disease. I was diagnosed at 14 and would like to know what to expect in the future with my eyes. Blessing.
Thank you,
Z
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Hi Z,
For so few words, that is one big question, and a tough one to answer. The problem is, retinitis pigmentosa takes on so many forms and reacts differently in each individual. I've know of people who lost their vision very quickly, and I've known people like me, who had a slow decline.
I'm guessing you've already read up on the disease, looking at places like wikipedia (http://en.wikipedia.org/wiki/Retinitis_pigmentosa) or the Washington State Department of Services for the Blind (http://www.dsb.wa.gov/), so all I can really do is speak from my own experience.
For me it was a gradual decline, a thing so slow I almost didn't realize how bad my vision had become. Almost. I was diagnosed at 15 years old, and was almost 40 before enough of my vision was lost to make me legally blind. I started by losing my night vision first, then came a slow decline in my forward daytime vision and peripheral. I've reached the point now where it's like looking through a tube at the world, and I can't really see much of anything at night. The thing is, I lived a normal life for years before I had to start making adjustments (which we will talk about in a bit).
I think the important thing is to acknowledge that it will change your life, but to not let it stop you from living. As your vision degrades and fades, things will get harder, there will be things you have to stop doing for safety's sake (like driving, which was the hardest transition for me to make).
Another important thing is: Don't lie to yourself. Once you start losing vision, once it become noticeable, deal with it head-on. Get help, get training. Learn to use all the adaptive technology out there, like JAWS for Windows, high powered magnifiers, voice software, talking clocks, microwaves, and stoves. Learn to use the white cane or a guide dog and to read Braille when the time comes.
Don't be afraid to be a part of the world around you. Too many people, faced with the difficulties of dealing with a disability, stop interacting with the world, shut their doors, withdraw from life. Don't do this. Ask for help. Be engaged with the world around you. There are people who are willing to help, and in fact are paid to help. Let them.
Never let anyone tell you that you can't be something. Okay, you might not be able to do some jobs, like drive a truck or operate heavy machines or fly fighter jets, but there is plenty of opportunity for folks who are blind or who have low-vision, especially in the arts and technology fields.
As you lose vision, you'll have to learn to adjust. You'll learn to memorize the placement of furniture (and I promise, you'll trip over it from time to time when people move it). You'll learn to move a little slower and to be aware of your surroundings. You'll learn to move through space you cannot see, or at least cannot see well, by trusting your ears and your nose and the air currents on your skin. You'll learn to count steps on the stairs and count steps to places around the house. Routine will be your friend, but don't let it chain you down either.
You will have days that are worse than others. One thing I and others I've known have experienced is that RP makes your sight unpredictable. Some days it's almost like I can see normally, some days I'm almost totally blind. Most days I'm somewhere in-between. I went to a psychologist (who was blind) to get assistance with dealing with depression and with making the adjustment. She helped me a lot, because she had been there, she understood what a difficult transition it was going to be. And I won't lie to you, it was difficult for me, and will be for you.
There will be days when you knock over drinks, walk into walls, and trip over things you didn't see. It will be frustrating. There will be days you will hate the world and the unfairness of it all. There will be days you won't want to get out of bed. There will be days when you are depressed. That's okay. Take a day off and stay in bed. Be angry at the world. Then pick yourself up, dust yourself off, and go on with your life, because that's really all you can do.
It's a big, scary thing, but you can't let it destroy you. You can't let it leave you angry and broken and bitter at the world, because that is no way to live. Find something you love and do it. Surround yourself with people who care about you. Let them help, but learn when to tell them to give you space.
The best thing you can do--the very best thing--is to make a good life for yourself, whatever that means to you.
I don't know how much this helped, but if you want to talk again, please feel free to email me in the future.
Best Wishes,
Michael Merriam
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The best thing you can do--the very best thing--is to make a good life for yourself, whatever that means to you.
That goes for all of you.
In Peace,
Michael
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