While trying to enjoy what I had left, I was interrupted by the one and only research question that ophthalmologists have ever asked me. No, it is not "Did the moon hit you eye like a big a pizza pie?" Forty five years ago, the only question I was asked was, “does anyone in your family have this condition?” For the last 20 plus years, researchers have expanded their range and have been attempting to prove that either heredity or environment causes many eye diseases. The last time I heard there was still no definitive answer. I don't believe that any research question has taken the romance out of relationships and caused the decline in marriages and births more than the question of heredity. It was quite upsetting when I told family members about my disease and the doctors' concern that such diseases might be hereditary to learn that people immediately jumped to the conclusion that they should not have children rather than that all children should be screened, diagnosed, and treated early which I was not.
By focusing on the heredity question, researchers have learned that certain diseases are found more often in certain populations, but they have not discovered why these diseases only appear in certain people or at different times in each person. Why, for example, do some people develop cataracts at birth while others develop cataracts in middle age or later? Why do some members of a family have a particular disease while others with the same DNA do not? Rather than looking at either heredity or environment, I would like researchers to consider both simultaneously and ask patients the following questions:
1. Was general anesthetic used during your birth?
2. Were you deprived of oxygen before or after your birth?
3. Were you given oxygen after your birth?
4. Were you ever taken outdoors as a young child to see an eclipse by an adult holding one of those strange cardboard box contraptions? If yes, did you look up towards the sun and then get rushed into the house?
5. Did you ever hit your forehead so hard that you were not knocked unconscious but literally saw stars? If yes, what color were they?
6. Did you ever experience an extremely high fever that required hospitalization for several days before antibiotics were available?
7. Did anyone in your family smoke cigarettes?
8. Did your mother smoke cigarettes?
9. Did your diet ever change dramatically such as in your teens or college years so you started living on caffeine, pizza, and foods high in salt or sugar?
I am sure that many questions could be added to this list; however, the most important research question that a doctor should ask is, "Is there anything You can tell me that might have caused your condition?" Since my answer too many of the questions listed above would be, “Yes,” I know that a person who has been diagnosed with a potentially blinding disease is spending more hours trying to answer the question, “Why?” than any medical researcher ever will. There is no telling how many medical breakthroughs would occur if doctors started listening to patients and working with them rather than just on them.
I recently joined an online social group that serves members of my high school graduation class that will be celebrating a 50th reunion in 2015. These are the friends who knew me before my glaucoma was diagnosed. One classmate asked, “How has your poor vision affected your life?” I gave her a few quick answers, but later I realized that my partial sight loss did not change me. It changed how the world perceives me. What did change me were my discussions with my eye surgeon, Paul r. Lichter, M.D. at The University of Michigan Medical Center. Since my first appointment almost 40 years ago, Dr. Lichter has been teaching me that I am more than a defective pair of eyes. I have a brain, and he has always expected me to use it. He taught me to consider my options and to be objective. He is a master communicator who broke through the wall of distrust that I felt after numerous eye doctors had neglected to diagnose my glaucoma.
Dr. Lichter served as the Chair of the Department of Ophthalmology and was the Founder and Director of the w.K. Kellogg Eye Center. A research foundation now bears his name. It is Dr. Lichter who made me an active participant in my health care. We have a common interest, the quality of life of people with potentially blinding eye diseases. These diseases are our common enemy that we fight on different fronts. Under his guidance, I have changed from a hopeless romantic to a hopeful realist. If the moon does hit a my eye like a big a pizza pie; however, I will let him know.