Future Reflections Winter/Spring, Vol. 14 No. 1
[PICTURE] Peter Grunwald
From the Editor: Some articles do not need any introduction or explanation. This is one of them.
In early 1952 my parents and their young daughter arrived in the United States from Germany. They settled in Chicago, and in September I was born. A few short months later, however, they got the bad news that I had a cancer in the retinas of both eyes, known as retinal blastoma. The doctors told them that the cancer was already too advanced in the left eye to warrant any treatment, and that eye was removed. But they did recommend that the right eye could be treated with radiation, and that some sight in that eye might be saved.
Obviously the choices my parents faced were wrenching, and my survival was hardly a sure bet. But they did elect to go ahead with the radiation treatment. I am sure that the doctors thought that there was a reasonable likelihood that the treatment would work, and saving the sight in even one eye seemed important to all concerned. Unfortunately, however, the treatment was unsuccessful and soon the right eye was removed as well.
Now came the daunting effort to raise a child and to learn whatever was to be learned about blindness. While (especially in the early years) my survival was still uncertain, my parents entered the task with uncommon determination.They became among the most educated and forward-thinking parents I have ever known regarding blindness. I was not at all a sheltered child. I got early cane training long before it was fashionable. I was encouraged to become physically and socially active. My parents also routinely took on the educational establishment to ensure a quality education for me. My mother became fluent in Braille, and she produced materials which would have otherwise been unavailable.
Somehow I managed to grow to adulthood. I found my niche in the work place as a piano technician, tuning, repairing, and rebuilding pianos. I have been active in community affairs and in the National Federation of the Blind and have been privileged to serve in leadership positions. For the past fourteen years I have been lucky enough to be married to a wonderful, strong, and caring woman. There have certainly been difficulties and tribulation, but I have had much of what is called the good life.
However, now the events of my infancy have come back to haunt me. However far from perfect our knowledge of cancer and its treatment is now, it was far more limited then. Radiation is used far more selectively now, and in much more controlled doses. Most importantly, there is much more understanding of the long-term ramifications of radiation treatment.
In August of 1992, I was diagnosed with a new and fast-growing cancer in the nasal and sinus area. This new cancer was almost certainly the result of the radiation treatment. At this writing, (May, 1993), I have received (and will continue to have) a number of chemotherapy treatments, and had an extremely major surgery. My future is still very much undermined.
I would guess that today, if my parents had it to do over again, they would not have gone ahead with the radiation treatment for me. Of course, they did not then have the experience of raising a blind child to a reasonably happy and successful adulthood, nor did they know successful blind adults. Saving my sight (even in one eye) seemed important, and they got the best medical advice available at the time. They then went on to become model parents. Yet the decision forty years ago to try to save some sight, however loving and well-intentioned, may yet cost me my life.
Obviously most decisions which a parent may face are not this dramatic, nor are the possible consequences. Yet each choice that a parent makes does have ramifications, whether that decision seems dramatic at the time or not. My wife Mary, for example, is blind with some remaining vision. Her mother, too, lacked knowledge and experience, and therefore went along with the recommendation of the schools that Mary learn print and not Braille. Mary is bright and inquisitive, a naturally good student. Yet she dropped out of high school because she could not keep up with the reading demands. She is now a successful businesswoman, but she must rely on others for much of her record-keeping and accounting. Her independence and available options have been seriously limited because of well-intentioned choices.
My plea to all is to become as well-informed about blindness as possible, and then spread your knowledge far and wide. My parents could not have become more medically advanced than the doctors. But if a true understanding of blindness, what it is and is not, had been more prevalent in our society, perhaps they would then have had a different perspective on the importance of the sight of one eye.
But today we all have available to us the great resource of the National Federation of the Blind through which we can soak up the knowledge and life experiences of tens of thousands of blind people and then disseminate that collective wisdom throughout society. In this way we can, for ourselves as well as others, avoid making mistaken choices for the next generation of blind children. Choices which, although made with love and the best of intentions, still may be harmful in their consequences. This is my fervent hope, and I invite all to join in this effort.