I just got back from seeing the ocular oncologist, eye specialist, who gave me a clean bill of health. I realized while I was sitting in the room waiting for the doctor that one, it’s been 30 years since they found something wrong with my left eye, and second, I really have never spoken about what I have gone through.
I usually give people the sound bite of “overcoming adversity with being blind as a teenager and the removal of my left eye at an early age” and sometimes a bit more but never in-depth. I really found no reason to truly speak about it as it has been my burden to bear. When the best eye doctor in the world doesn’t have an answer for why you went blind and you stop counting after 12 eye surgeries as a kid, you don’t feel compelled to really talk about them.
Though I figured maybe it was time to talk.
Most people ask so did they ever find out what was wrong? The answer is no. When it came to my left eye I have seen countless doctors and even the best ocular oncologist in the country and no one could ever give a definitive answer of what took my vision at age 7. They tested me for everything you can think of and I do mean everything.
Dr. Devron Charr who is considered the best in the country once told me many years into seeing him “Kent I usually see people once before surgery, during surgery, and then post-operation. You, I have been seeing for seven years”.
I could not tell you how many times I have been sitting in a chair looking at the same set up in the picture below.
At age 13 something went wrong with my right eye, even though they thought the left would not affect the right. Luckily they caught it in time. By that time I was over legally blind, which is 20/200, I was 20/400. That means that big E on the eye chart was blurry for me. I was blind for many years in both jr. high and high school.
Below is a picture of my right eye. The red circle shows years of scar tissue from past surgeries and procedures…. and yes that is a lot.
To streamline this blog post, I will bullet point 30 years of my medical history.
- I had cataract surgery.
- I had laser surgery, twice.
- I had Cryotherapy surgery. It was considered experimental at the time. (I was 17th in the world to receive it.)
- I had a biopsy procedure on my left eye. (i.e. they cut a piece of tissue out).
- I have had countless injections procedures both asleep and fully awake (directly in the eye…. with a needle… no really… sometimes multiple injections).
- I had eye removal surgery at age 13. This is was because my muscles in my left eye was starting to atrophy (they were wasting away).
- For reference, atrophy feels like the worse migraine you’ve ever had, and now times that by 100 and put it behind your eye.
- I stopped counting after 12 surgeries and procedures… I think it’s somewhere between 15 and 17.
- As a kid I went to the eye doctors so many times I started to memorize the eye charts…. they had to switch them to numbers instead of letters.
- I have had hundreds of hours of medical testing done to me…. and I do mean hundreds.
- I can’t speak ocular oncology but I know enough of their terms that I understand what it means.
- I have had visiting doctors from Japan look me over and they were baffled.
- I hear the still do case studies about me at UCSF.
- While I was blind my other senses were superhero enhanced. Hear, smell, and taste were all at 110%.
- Reminder all of this above was before I even turned 18 years old.
Once again they still never had an answer to why I lost my vision. It wasn’t cancer, aids, or anything you can think of. Are things better now? Yes, today I got a good clean bill of health and everything is looking good,.
I don’t write this for pity or sorrow. I just thought it was time for people to have a better understanding of what I went through.