Three years ago, I went to get an eye exam, so I could get new glasses. I went to a local optometrist. He was a nice enough doctor. Friendly and easy to talk to. Everything seemed to be going well and the exam wasn’t out of the ordinary. Until, at the end of the visit, when he told me I have Macular Degeneration. Whoa! What?!
The definition of Macular Degeneration is – a degenerative condition affecting the central part of the retina (the macula) and resulting in distortion or loss of central vision. It occurs especially in older adults, in which case it is called age-related macular degeneration. (I was 39/40. Not technically old. It’s not unheard of that younger individuals develop the disease, but it is uncommon. I guess, I won the eye disease lotto! Goodie! Not!)
At the time, I didn’t know what it was or what it meant for me. The only information I got from him was that it’s not a big deal and all I needed to do was take specialized vitamins for the condition and that I’d be okay. But this didn’t set right with me. My gut was telling me this was much more serious than he let on, so I scheduled an appointment with an ophthalmologist, hoping to get more answers and a better diagnosis or treatment.
This visit had more of a sense of urgency to it. I could tell the doctor and staff were deeply concerned. I had several in depth tests that confirmed I do indeed have Macular Degeneration. And when I spoke with the doctor he was astonished the other doctor took it so lightly.
The ophthalmologist confirmed the vitamins would help, but that if/when the condition goes from dry to wet, that’s where it can get bad extremely quickly and could result in me losing my vision.
Dry macular degeneration is a type of the disease in which blood vessels in the eye do not leak. Wet AMD is a more advanced form of the disease and causes vision loss when abnormal blood vessels grow in the eye. Wet AMD occurs when the blood vessels leak below the center part of the retina, the macular.
Wet AMD requires shots of medication that are inserted directly into the eyeballs to prevent vision loss and it’s not a one time deal either. Shots need to given regularly, as in monthly, for the rest of your life.
Subsequent visits and further testing at the ophthalmologist confirmed that I’d lose my sight in ten years (so possibly seven years left). A specialized genetic test confirmed this and gave us the timeline. To anyone being given this news, it’s a tough blow. But being given this information as a visual artist… Devastating!
My ophthalmologist sees me every six months now to make sure my condition isn’t advancing and I take the daily vitamins religiously.
A few months ago, I had a scare with my eyesight. I remember it was a Friday night and I was getting ready for bed. I had opened the bottom drawer of my dresser and when I went to close it and stood up after, I couldn’t see out of my left eye. It was shocking and extremely frightening. I was afraid my Macular Degeneration was to blame.
I had to wait the entire weekend before I could see my eye doctor. It was frustrating and terrifying. The next day, in my left eye, I could see a big blood red dot. My eye looked fine outwardly and you couldn’t tell anything was wrong, so this made it even more puzzling and fearsome. It made seeing extremely difficult. I couldn’t drive and I couldn’t watch TV. There wasn’t much I could do!
Turns out I had an eye hemorrhage. A blood vessel in my eye burst. It’s actually not uncommon and can happen with strain. Though, to be fair, I don’t think I was straining that hard to shut the dresser drawer, but I digress! My ophthalmologist didn’t think it was Macular Degeneration related, but sent me to an even more specialized eye doctor and since it was considered an eye emergency, I got in to see that doctor the very same day (which was Monday). He confirmed it wasn’t related, but was concerned that if it kept bleeding, it could damage my sight.
Thankfully, the blood red dot and blurred vision went away after a few weeks and it hasn’t recurred. Knock on wood! I’m back to painting, driving, and watching TV!
There’s an artist who is visually impaired (and he lives in Texas! I’m in Texas too!) that truly inspires me and gives me hope that I’ll be able to continue creating. His name is John Bramblitt. He creates the most beautiful, colorful pieces. And it’s my understanding that he feels with his fingers what he paints and can feel what colors the paint he uses are just by feeling their viscosity. He also teaches others how to paint like he does.
Having Macular Degeneration is always at the back of my mind. How much time do I have left, before I start to lose my sight? In seven years, I’ll only be 49! What if it happens on a Friday night and I can’t see the doctor til Monday? Will I lose my sight having to wait? Will I be able to keep my eyes still enough to get the shot? How much will it hurt or be uncomfortable? How expensive is it going to be to save my eye sight? Will we even be able to afford it? What if I can’t create my art anymore? What if I can no longer see my loved ones beautiful smiling faces? What if I’ll never see the Northern Lights, the Oregon coast, or Zion National Park?
I don’t have a lot of money to travel. I don’t have any disposable income really, so it’s a distinct possibility that I’ll never get to see these things anyway, but the thought of absolutely not being able to at all breaks my heart. I want so much to see the Auroras in person! I want to experience these things with my family.
I’ve come to terms that this is my reality now. I will just keep doing the best I can and take things as they come. But when I first got my diagnosis, I practiced walking with my eyes closed and taking a shower with my eyes closed. Having my independence is important to me. I suffer from other debilitating chronic illnesses that could eventually make me totally dependent on others support. I will fight to stay as self reliant as I can for as long as I can and I hope and pray that no matter what, I’ll be able to continue to make art.
Dear reader, I hope you won’t misunderstand where I’m coming from. I know that being visually impaired doesn’t always mean you lose your independence and so many who are visually impaired lead full, rich lives. In my case, coupled with my other health conditions, I could very well lose my independence. That’s my reality, the very real and distinct possibility that I personally face.
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