As you may already know I am legally blind, I began losing my vision about eight years ago at age 36 and in about a year I was legally blind. I first became aware of my vision loss when I realized that I could not see well enough to read the newspaper. I didn’t give it much thought at the time, after all I am the only member of my family on both sides that doesn’t wear glasses. My first thought when the words on the page suddenly became blurry was “it’s my turn for glasses”.
A couple of weeks later I went to the optometrist quite confidant that after a quick vision test and a prescription for glasses I would be back to reading the newspaper in know time, I could not have been more wrong.
The optometrist (who was as confident as I that glasses would do the trick) was surprised to find that regardless of the strength of the lenses he tried I could not read the chart with my left eye. He decided that a more in depth look into my eye was necessary; this is when things began to get interesting.
The good doctor fired up his super bright light to get a good look into my eye. Shortly after the light came on I found myself waking up with no idea where I was or what had happened and a loud noise in my head that strongly resembled a freight train. The noise began to subside and as soon as the optometrist told me where I was the confusion passed as well. He told me that as soon as he shined the light into my eye I went into a seizure, as apparently this sometimes happens he didn’t feel that it was a cause for concern. After about a half hour we decided to try the exam again, once again I immediately went into a seizure. At this point we decided he should call my wife to drive me home as I was no longer in any condition to drive, still under the impression that their was no cause for concern he told me to come back on Monday and he would finish the exam at no additional charge. After recuperating over the weekend I return for another attempt at completing the exam and what would turn out to be yet another seizure. After recuperating for a few minutes he told me that I was conscious just long enough to see a small spot of blood in the back of my left eye, he assured me that it was most likely nothing to worry about and that (for obvious reasons) he would not be able to finish the exam.
As I left his office he gave me the number for a specialist, however, after careful consideration I decided to call the ophthalmology clinic at The Medical College of Virginia hospital. As I told them my story I mention the speck of blood, at this point they told me I should come in immediately for a full examination. When I arrived at the clinic I was taken into the exam room where I met Dr. Swartz, the hospitals retina specialist. He seemed concerned about the blood and attempted an examination; once again I went into a seizure. In stark contrast to my past experiences as I regained consciousness I could hear a “code” alarm blasting throughout the clinic, there were two doctors in the room and shortly thereafter several nurses came running in carrying a variety of portable equipment. There was a flurry of activity to insure that I was conscious and coherent, I was then loaded into an ambulance and transported to the emergency room. This latest seizure resulted in a barrage of test and examinations including MRI’s, CAT scans, spinal taps and trips to hematology/oncology, and neurology. It was later determined that I have a sensitivity to the frequency of light used during the exams that results in light induced seizures. I was prescribed “Kepra”, an anti-seizure medication that seems to be working so far.
Now free to conduct their examination the ophthalmologist soon discovered that the vision in my left eye was 20/100 with a totally blind field in the central portion. They discovered that the blind field was the result of a hemorrhage in my retina that they could only describe as resembling Macular Degeneration. The only available option was to use a laser to stop the bleeding. Shortly thereafter my right eye began to hemorrhage resulting in vision loss in both eyes. For the next several months it seemed that as fast as they could treat one hemorrhage another would start. It would take about six months and countless exams and laser treatments before my condition would finally be positively identified as “Angioid Streaks”, oddly enough; it was first identified by the photo tech. The diagnosis resulted in yet more test as Angioid Streaks a commonly a symptom or side affect of a more wide spread disease such as Pseudoxanthoma elasticum (PXE), Paget’s disease, Sickle cell disease, Ehler’s- Danlos Syndrome, in my case no cause was found.
Angioid Streaks are (in the most basic description) cracks in the retina that allow tiny capillaries to grow through, these capillaries are extremely brittle and can rupture causing a hemorrhage, once this happens the only option is to use a laser to stop the bleeding. In an experimental effort to preserve my vision the doctors did try using cold laser or Photodynamic therapy commonly used in patients with Macular Degeneration, in my case it had no affect.
I have now been legally blind for about seven years and I live every day knowing that it could get worse at any moment, I do not however dwell on that fact or allow it to stop me from doing the things that I want to do. Regardless of the degree of vision loss one suffers it does not have to mean that their life is over, writing, wood carving,paper mache, and go cart racing (I lost) are just a few of the things I would not have done if I had not lost my vision, I simply wouldn’t have taken the time. Just last week I heard a young lady say that prior to losing her vision she had no since of adventure, since losing it she has learned to ski and tried tandem hang gliding and now intends to try every new adventurous thing she finds even remotely interesting. If you or someone you know is experiencing vision loss, and have not already done so, I strongly encourage you to contact your local Department For The Blind and Vision Impaired, you will be surprised by what you find.