Introducing: My Disease

Glau-coma (glaw-comb-uh)

  1. A word you don’t know until it affects you or someone you love.
  2. A disease with symptoms including uncertainty and anxiety about the future.

The thing that I often forget about my condition, and that’s the fact that it’s progressive. It’s not an obvious disease with many symptoms, and it moves slowly so it’s often hard to tell when things are getting worse. That’s why my condition Glaucoma is often called “the thief of sight”. I was reminded of these facts when my at a routine appointment, my doctor began to share concerns with me about my left eye.

The drain in my left eye (which has a fancy name that I can’t remember) stopped being as effective and as a result, fluid was building up in my eye causing damage. So my doctor started to talk about options and all the things we had to consider; my departure to college and my access to health care far away from my eye specialist. When set a details and awaited contact from my doctor’s secretary.

As all of this was happening, I’m reminded of the hardest parts of my disease. It’s not having surgery, although that can be tough and sometimes uncomfortable, I’ve been under anesthesia probably over 30 times. On top of that eye surgery is probably one of the least invasive surgeries you can have. So yeah, surgery is not something I want to do by any means but it doesn’t make me as apprehensive as you might think.

The hardest part is being reminded of the inevitable. After over 20 surgeries and years of a rigorous schedule of medicines, my disease will still be there. My confidence has taken time to build yet, I know that someday there will be another challenge for me to overcome. A new state of being for me to accept. Perhaps the worst part in all that I just mentioned is the “someday”. I have no way of knowing when I’m losing more eyesight, or even if I’ll wake up tomorrow with half the vision I have now.

I’m not writing this as a sob story about the painless slow-moving disease that glaucoma is. I know that I’m incredibly lucky, because I’ve never had to fear that my disease would take my life. However, Glaucoma is still taking something precious from me. The ability to see new parts of the world and even more importantly, the ability to see my loved ones grow and change. I know that many don’t understand what having Glaucoma means, that it can affect all kinds of different people of any age, and that there’s no cure. I’m not a doctor, but I think that if this disease gets more attention, a cure can be found. This is my selfish plug, partly because I would love there to be a well-tested cure so that I can keep the rest of my vision, but also because the world would be a better place with one less chronic illness out there.

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