Meet Chris Barnes. Coats Disease patient. Athlete. Advocate. And our newest JMCDF Ambassador:
“My story starts at high school soccer practice when I was 15 years old. We were working on heading drills into the goal and I was missing all the balls that would come to me. It was really hard to see and I thought it was the sun’s glare but the sun was at my back.
I didn’t say anything about it to anyone, but the guys were starting to think something was wrong since I love headers into the goal and it was what I could do really well. I went through practice and then my dad picked me up and I told him about the heading problem and he had me close my right eye and tell him what I saw out of the left eye. This is where I got scared; I said I can’t see anything out of it. He said stop messing with him, but the truth was that I could not see anything.
My parent’s family friend is an eye doctor so we called him when we got home and told him what was going on. Since I really could not see anything, he told us to meet him at the office just to make sure things were not bad and needing emergency surgery.
He looked in my eyes and then he looked at great length in my left eye. He said he wanted to get a specialist into the office to look at it the following morning. I started to get scared when he told me that. I have know Dr. Board for many years prior to that day so I felt like he was taking good care of me and wanted to make sure everything was okay. The following day a doctor from Duke University was there to see what was making my sight missing from my left eye. He looked at my eyes and then talked to my parents regarding what he saw. There were blood vessels that were leaking in my left eye and the blood was in front of the retina, that is what was causing the blindness in my left eye.His thought, surgery, right then and there. My family and myself thought it was needed, if something was bleeding, we needed to stop it, right? The first surgery was the worst. I sat there with my eyes wide open and starred at a needle that was being put into my eye socket, just below the left eyeball so that the eye could be numb for the first of five laser surgeries that I would go through over the next year. The surgery was quick, but not painless. The doctor said that the blood leaking might be from all the soccer that I played growing up… I see now that he had no idea what was going on. He put me on the sidelines for two weeks from all sports to see if it was from being hit by a ball or from running.Two weeks later, more blood, more questions, which lead my family and I to search for more doctors and more answers. We found a doctor in Maryland, at John’s Hopkins Hospital who was one of the top eye doctors on the east coast.
After the first visit at John’s Hopkins, we had our questions answered, I had Coats Disease. Fifteen years old and hearing the news that the blood was blocking my vision and it might be there forever is pretty heavy. While I was there the first time, I had another surgery then every four months for a year I would go back for more surgery. The bleeding stopped as more laser surgeries were happening. I ended up with 5 laser surgeries, scars on my eye, vision loss, but it was not the end of my life. I was 16 years old, I was able to drive, and I was still playing soccer, some things had to change on the field but soccer is what I wanted to do.
Fast forward to today, I am 29 years old, still have vision loss in my left eye but making something out of it. I did not let Coats Disease end my sports obsessions. I played college soccer for a year, I have been a sponsored surfer, I run marathons and ultramarathons, do triathlons and Ironman triathlons, I am a sponsored Gatorade athlete, I am a coach and I am a web designer. But the one sport that I am most passionate about is guiding visually impaired or blind athletes in marathons or triathlons. I got involved with an organization called C Different Foundation based out of Houston, Texas. From there I have met people all over the United States and Canada who guide or need guiding. This year I was privileged enough to give up my Boston Marathon qualifying time to guide a visually impaired runner named Robbie.
Looking back at the days when I thought things were going to be bad, I was blind in one eye, what was I going to do? I won’t be able to do anything, I am blind. What was I thinking? Everyone has two eyes, one of my eyes got bad, and then the other eye, well the other eye got better and was 20/15 the last time I went to the eye doctor. So, if you or your child has Coats Disease and you think that they will not be able to live a normal life due to the disease. Think again, they can, it is up to them, and they can sit back and have a sympathy party or get out there and do what they want to. I hardly tell people about my eye and what all I have been through. It is something that I keep to me and don’t want people to look at me differently or think of me as only having eye sight in only one eye. I hate being treated special so I keep the Coats Disease history to only close friends and family.
I hope that this helps you or your child to see that just because you have Coats Disease, at any stage, you can do what you want and not have anyone hold you back. It is your life, do what you want and leave nothing left in the “I wish I could” column.”
