Saturday, August 6, 2016

A Quiet Courage. Caroline's path.

I don't know "normal". Diagnosed with congenital glaucoma at 3 months old, I have no concept, no recollection of "normal" vision. At 3 months old the world should have been a wonder to explore, big and bright, not a series of surgeries.

My name is Caroline. I'm a 21 year old college senior.

Both my Father and younger sister have glaucoma and yet the doctors were surprised that it was passed on to me. I've lost count of eye surgeries. They pierce the years from infant through 8th grade. I've had more than one trabeculctomie, goniotomie and an Ahmed valve. The nurses at St. Louis Children's Hospital remember me as a baby- my future in their hands and those of the surgeons. I know what medications will make me sick. I can tell the nurses the best vein to start an IV in. The hospital visits, procedures and follow ups consumed a large part of my young life. But while I had those challenges, my most difficult challenge was just being a "normal" kid.

Growing up as that kid that was always in the hospital, I was often the odd one out. Peer pressure, groups of friends, cliques and adolescent angst made me just want to fit in. I longed to participate in sports but at the age of nine I had to give up the softball team, leaving my friends and team mates behind. Contact ball sports were deemed unsafe due to the ever present potential of head injury. The fact that I always had to wear sports goggles made me the subject of chatter I did not want. I wanted to be like everyone else. Normal.

I turned to swimming. The buoyancy of the water, the freedom of cutting each stroke with a purpose, each kick became a boost that empowered me to keep pushing forward. While there were limitations - sports goggles are an absolute - water from a public pool, lake or ocean can never enter my eyes for fear of an infection that could take away my sight.

While I'm grateful that I have my vision and that eyewear has come a long way there is still that sense of self-consciousness the comes with it. I'll never show my true face without the mask of prescription glasses. Contact lenses are out of the question. It's a small price to pay I know. Glaucoma teaches me lessons every day. Yes, I wear glasses but I can drive! My doctors thought that would never happen.

One of my favorite quotes is from Charles Swindoll - "Life is 10% what happens to you and 90% how you react to it." While I will never regain my lost vision or play contact sports I still have hope for the future. We need to find a cure, a better treatment for this misunderstood disease and keep a positive attitude.

Despite it all I'm a pretty typical senior in college, double majoring in finance and management. I started my life with congenital glaucoma but it does not define me. In less than a year I will graduate from college.

My name is Caroline. And I will be a college graduate - not a college graduate with glaucoma. And I have hope, hope for a cure.

Glaucoma can strike anyone at any stage of life. There is no cure. Vision that is lost cannot be regained. Get the facts. Schedule an appointment with an opthamologist for a comprehensive exam  A high risk group includes having a family history of glaucoma, being very nearsighted or diabetic. African Americans, Hispanics, also being over the age of 60 increases the risk. You can be born with glaucoma. There is treatment - lifelong treatment - once you are diagnosed. But you must be first diagnosed.

For more information please visit, the Glaucoma Research Foundation's web site. It's your vision. Don't lose it.

This blog has been written with Caroline's permission. If you'd like to share your story please contact me at Thank you. 

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