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Deaf-Blind Reality: Living the Life|
As well as being deaf-blind, I am now arthritic and can’t walk far. Public transport is quite beyond me, but I can fetch a taxi with the telephone relay system. I ask the operator to let the driver know about my special needs. Drivers are almost always polite and helpful. I now rarely go anywhere alone, though.
I use a walker, and when I am out with service providers or even with friends, they may try to “steer” me. It annoys me, and you need to have a chat about it later. Sometimes, the helpers who are supposed to be helping will let a door slam in my face or fail to warn me of obstacles. Some are too zealous. Others don’t think ahead at all.
I have spent most of my adult life living alone with increasing disabilities, and it has made me self-reliant. Since the age of twenty-five, I have been too deaf to use voice telephone, and to be alone without help available in an emergency has been frightening. I had a TTY, but very few people had them in the 1970s. The computer with email and the telephone relay system have made life much safer for me.
Now that I’m of retirement age, the difficulties are closing in. My sight loss will soon prevent me from using the Internet for shopping, banking, accessing news (normal print is beyond me), and much more. My Braille display on the computer will give me text files, but it is impossible for a totally deaf-blind person who uses Braille to get training for Window- Eyes. My blind instructor can’t write, and I can’t hear speech or audio. Without help, my life will soon be very, very limited. I’ll have nothing but Braille books and a stuffed toy for company.
Tonilyn Todd Wisner
At different times in my adult life, I have lived in different apartments and a number of homes. At first, I was living in my family’s home alone. I had already been diagnosed with Meniere’s disease and become deaf but still had sight. I was limited in what I could do only by the fact that the Meniere’s disease causes your body to use a lot more energy than normal. I did just basic dusting, really, and washed clothes and dishes. I cooked for myself without any special aids.
When the Meniere’s disease became so severe that I couldn’t live alone, I moved into my dad’s apartment. He did all the cooking, and I helped with laundry and dishes. I also did the housework for the most part, just a little at a time.
Once I rehabilitated but was still limited, I moved away to a different state. My homemaking changed drastically then. I wanted my apartment to be clean, and most people I knew cleaned once a week. But I could only clean for about one hour at the most before I became too dizzy and nauseous. So I started cleaning one room a day. I had four rooms, so I was cleaning four days out of the week. I did my own laundry and dishes. I cooked for myself, but more often than not, it was TV dinners—I didn’t like cooking for one person.
I was unable to drive and had my groceries and prescription medications delivered. That was the only help I had back then.
When I moved back to Louisiana years later, I got my own apartment, and everything was the same as in my previous apartment. A few years after that, I met my future husband and eventually became engaged and moved in with him. I had someone else to cook for, so I started cooking again. I did all the housework—dishes, laundry, and housecleaning. The housecleaning became more rigorous, because he had six cats, two large litter boxes, and six medium-to-very-large rooms. I was still just as limited by the Meniere’s disease, so I was pretty much cleaning and doing laundry and scooping litter almost every day—five or six days a week! It was hard, but I enjoyed knowing that my house was—hopefully—clean.
A year later, I developed the constant vertigo and was mostly bedridden for two years because of this. I mostly still made my own lunch when I could manage to get out of bed and attempted some housecleaning, but that was all I did. My fiancé, Keith, had to do everything else. It was during this time that I became blind.
After two years, the doctors found the problem and operated to fix it—which worked for a while. I didn’t have vertigo, except for occasional Meniere’s attacks. After I recuperated, I picked up where I left off. I started cooking again without any special aids. I cooked on the stove, in the oven, and in the crock pot. I cut things by myself. I developed my own safety techniques.
Then we moved to a smaller home, as the large house was becoming a big burden to take care of. It’s not much smaller but a little more manageable. I was completely blind by this time. The vertigo returned, coming and going, and began to limit me again. But I continued to do all household chores. I cleaned one room every day, if I felt up to it.
I did the laundry myself, almost a daily chore, and Saturday was bedsheet day. I had my washer and dryer labeled with Braille stickers, so I could do laundry on my own. I used powder detergent, because it is easier to measure by feel. I put Braille labels on my clothes. I pinned the labels that have the colors listed on the front of my clothing with a safety pin, took it off and put it on a shelf by the hamper when I wore the clothes, and then when I got ready for bed at night, I put the pin back on before putting the clothes in the hamper.