Diabetics, Don't Give Up On Braille

by Allan Nichols

This article first appeared in the Braille Monitor, published by the National Federation of the Blind--and was reprinted in Voice of the Diabetic, Volume 5, Number 4, Fall 1990 Edition.

If you are a long-term insulin-dependent diabetic like I am, and you have attempted to learn Braille, you may have said to yourself, "Oh, I can't learn Braille, my fingers aren't sensitive enough." Unless there is a substantial loss of feeling in one's fingertips, there is hope for at least some diabetics to be able to use Braille. I can't speak for everyone, but I can relay my own experience and give some tips that I use to read Braille, which may help those with this problem.

Long-term diabetics often have a condition known as "diabetic neuropathy", a circulatory problem causing many of the complications that we diabetics might encounter. Neuropathy causes not only insensitivity in the fingertips and toes, it also causes blindness, kidney failure, heart attacks, and other related medical problems. I have been a diabetic for over 25 years and have suffered several of these complications.

In 1964, at the age of 13, I was diagnosed as having diabetes. It wasn't until I was twenty-two years old that I began noticing the first complications of diabetes.

The first complication, diabetic retinopathy, began with a hemorrhage in my left eye. Then four years later, after some photocoagulation treatments on both eyes, including laser and xenon light, I lost most of my vision.

I was first introduced to Braille in July, 1978 at The Allan H. Stuart Camp for the Blind and Visually Handicapped located on Casper Mountain near Casper, Wyoming. Camp lasted for two weeks, and I was able to learn grade one Braille, as well as other alternative techniques of blindness.

At that time, I had reasonably good tactile feeling in my fingertips and was able to pick up this skill fairly quickly even though I didn't think so at the time. My expectations of my ability to pick up Braille in such a short time were a bit naive and inflated.

At camp I used jumbo Braille, which enabled me to understand the makeup of the cells easier. Later I was introduced to the regular- sized Braille text with which I thought I would have trouble. Now, it seems to have been just a matter of experience.

Also at that time, I didn't see the true benefits of learning Braille, other than the ability to play cards again which I had missed doing with my wife and friends. About once a week, we got together to just unwind and have fun with our card games.

After I learned to read grade one Braille, I slowly began increasing my reading speed on the cards until I was able to read nearly as fast as I had before I lost my eyesight. However, my main motivation was still little more than the ability to play cards.

After being blind for about ten months, I began having problems with swelling in my ankles, a sign of kidney disease as I found out later. By April, 1979, I was rather sick due to kidney failure. By June I had gained twenty-five pounds from fluid retention due to the inability of my kidneys to function properly.

Looking at it in retrospect, it is scary to think that I almost died of congestive heart failure--caused by the improper filtering of blood through the kidneys.

During this time, I did little more than exist, although I was running a small coffee shop. My regular working hours were from 7:00 a.m. to 3:00 p.m., and only in the mornings on Mondays, Wednesdays, and Fridays, and dialyze in the afternoons on those days 1:00 p.m. to 6:00 p.m.

It was very taxing on my system, and I hated the whole regime of the restricted diet, feeling tired all the time, the severe cramping while on dialysis, if not to mention the fact that my doctors treated me like a child. Also, I gained too much weight between dialysis sessions.

After almost dying a couple of times because my blood sugar and potassium levels were too high, I decided that there must be a better way to live than the way I was doing it.

After some careful investigation and evaluation, I went, in June, 1980, for a kidney transplant. I told myself and several other people that it would be better to die on the operating table in the pursuit of a good kidney than to continue the agonizing way I was living. It turned out to be one of the wisest decisions that I have ever made. If I had it to do over again, even with the problems that I encountered then and since, I would go through it all again. Despite some complications after the transplant, I now had a good working kidney. And, for the first time in a long while, I felt human again.

Even anti-rejection medication for the transplant was not without its own complications. Shortly after my operation, I noticed that I was loosing the feeling in my toes. Despite this concern, I was able to put my life back together. However, about five weeks after leaving Bishop Clarkson Memorial Hospital in Omaha, Nebraska, I had to return for three weeks when one of my old kidneys became infected; it had to be removed.

At this point, I had several things going against me which might have reduced my circulation. First, my diabetes continued to be a factor. Second I had just spent a year on renal dialysis with all of its complications, not to mention all of the surgeries involving anesthesia and pain killers. Finally, there was a new problem of which I was ignorant for several years. That was the problem of the anti-rejection medications, prednisolone and Imuran. Prednisolone, which is similar to prednisone, a steroid, was given to me. I was the first patient to use it to prevent kidney rejection. It offered the benefit of not allowing calcium to leak from my bones.

There is, however, a complication with these drugs. Recently I listened to some articles about transplantation in the Voice of the Diabetic and I discovered that we transplant patients have a greater risk of amputation. Sure enough, I was one of the unfortunate ones to be faced not one but two amputations of my feet which developed after two separate incidents of infected sores on them.

The first one took place in 1981, when my right foot was amputated. The next one took place in 1987, beginning with a series of amputations of toes of my left foot, resulting in the loss of the lower part of my leg up to about six inches below my knees. I now have a matched set of stumps and use two artificial legs.

During this time of health problems, I had a lot of time on my hands. Since the coffee shop where I had been working closed due to its bad location, I decided that with all of this time I would teach myself to use grade two Braille. I got some beginning textbooks from Services for the Visually Handicapped here in Cheyenne and began to work on it without an instructor. The pace was slow because of the problems associated with my neuropathy, and I was only able to work on it for short periods of time, before the Braille characters would seem to just mush together.

If I hadn't had so much unfilled time, I might have given up on the whole project. But I wanted to be able to read some magazines I had received from National Geographic and Guideposts

I found that I had to have patience with myself so that I could learn Braille. I made several starts and stops. There were times when I would read a lot and times I would not read at all. During this time, I began to realize what advantages Braille offered, not only to read it, but to write it.

I began to use the slate and stylus which were given to me at the Casper Mountain Camp where I had first learned to use Braille. At the time I used Braille for little more than phone numbers and short notes.

All this time on my hands also allowed me time to think, especially about how I wished I could be working at a satisfying job again. I knew that if I was ever to work again, especially in a job I would be satisfied with, I would have to learn the alternative techniques of coping with blindness. Braille would have to be high on the list of priorities, so that when I went back to college, I could take my own notes. At that point, I was introduced to the students and staff of the Colorado Center for the Blind (CCB) in Denver, at a convention of the Wyoming National Federation of the Blind.

I had been a member of the NFB since 1983, but I didn't really appreciate all of the benefits that I could gain from such an affiliation.

Talking with Diane McGeorge, director of the Colorado Center for the Blind and President of the Colorado affiliate of the National Federation of the Blind, and others convinced me that I could gain the necessary skills that I needed to compete on equal terms with my sighted counterparts at college and in the job market.

It took a lot of haggling with the Wyoming rehabilitation agency counselors but, in February of 1989, I began attending the Colorado Center for the Blind in Denver.

The changes made in the lives of those fortunate enough to attend such a facility are dramatic! Besides the training in cane travel, daily living, Braille, and using the computer for the first time, we engaged in special activities such as cross-country skiing and a six-week course in technical rock climbing. I began feeling good about myself as a blind person. Using Braille began to make some sense when it came to using it in everyday life.

I began using it to make grocery lists; to balance a checkbook and to take messages at the apartments and at the center. Using Braille more increased my reading speed. I was really enjoying my training at the CCB, especially attending the convention of the National Federation of the Blind, held in July, 1989 in Denver.

My whole world came crashing down at the close of the convention. This was partly due to the walking I did during the convention and partly due to the heat during this time. (It was over 100 degrees for most of the week.) At this time I developed a sore on my right leg where my stump was rubbing on the inside of my artificial leg. The sore became infected, and soon I was unable to put on my right prosthetic leg. I ended up having to spend more time in the hospital and had several setbacks before I could resume my training at the CCB.

Again, I had more time on my hands. I had to use a wheelchair or a walker to get around. This time I was determined to make the best use of my time by earnestly working on my Braille.

To become more proficient in Braille, I began to use the Perkins Brailler. To keep up both my Braille skills and my spirits, I began writing some original jokes for my family and the students and staff at the Colorado Center. I found that using the Perkins Brailler was a lot faster than using the slate and stylus, although they both have their uses at different times.

I also got some Braille material to read, although there is precious little found in Cheyenne, Wyoming. I read my first two books just for pleasure, All Quiet on the Western Front and The Bridge at Toko Ri.

I made some discoveries about how I could increase my reading speed and comprehension. These included making sure that my diabetes was under control, getting regular exercise, (especially before trying to read), having the Braille material at the right level to facilitate circulation, and having my fingers warm enough.

The most important of these was keeping my blood sugar properly regulated, for my most effective reading was done when a desirable blood sugar was reached. I found that keeping my arms at a slightly downward slant while reading improved blood circulation to my hands. I also found that reading in a warm room or warming up my hands after being outside during cold weather helped me with character recognition.

My leg finally healed, enabling me to continue my training at the CCB, so in mid-October, I returned to the center to finish my training there. I believe that the whole experience gave me more of an appreciation for the abilities I possess instead of worrying about any diminished capacity that I might have.

I graduated from the Colorado Center for the Blind on December 8, 1989, with my next step to be the continuation of my college training. Presently, I am attending Laramie County Community College in Cheyenne. I plan to complete my Bachelor's Degree at the University of Wyoming in Laramie and eventually work toward becoming a marriage and family counselor.

It has been my experience, while taking my psychology and computer courses, that Braille is an indispensable tool for me, even though I do use the talking computer for some applications. When it comes to taking my own notes, Braille is quite valuable in the learning process. I have discovered that just the procedure of typing Braille notes from the textbook has enabled me to comprehend the material more easily than I would be able to if I were merely listening.

Both my Braille and computer keyboarding skills have improved while I have been back in college. I have not been tested on my typing speed lately, but the true test has been using both effectively and expediently. I have found that I can increase my reading speed and remember all of the abbreviations which used to give me trouble. My typing from just my computer textbook has become quite a pile of voluminous notes.

Another benefit of using the Perkins Brailler has been an increase in my reading speed as my typing speed increases. I believe that the two are interrelated. I don't know how fast I can become in my reading and writing of Braille, but I know that I wouldn't want to return to the way I was before I learned how to use this valuable tool. I would urge any blind person to use Braille if at all possible. Especially if you are a diabetic and have some feeling in your fingers, be sure you use it or you will lose it.