For those very nearsighted or with macular degeneration

 

 

Some people hesitate to share their personal experiences, and I definitely keep some things very private, but if I feel that my own experience can help someone else, I am an open book. The more support I can give and receive, the better.

See that photo on the right? That’s how my right eye sees the world, and it’s how I’ve been seeing it since I was 32. I have macular degeneration. Not caused by diabetes, because I’m not diabetic.

Nope, caused by being severely nearsighted. I started wearing glasses at the age of nine, and by the time I was 13, my vision without those lovely Coke-bottle thick glasses was 20/800 in my left eye (my good one) and 20/1000 in my right. Yes, you read that correctly. 20/1000.

Needless to say, I was determined to wear contacts, those hard things you had to start out wearing two hours a day then gradually add thirty minutes a day until you built up enough callouses to avoid feeling like you had sand in your eyes. But with those Coke-bottle glasses—well, I was determined.

Anyway, quick history. At 32, my right eye hemorrhaged. I woke up one morning and saw a brown, swirling blob in my central vision. Quick trip to my optometrist, who immediately sent me to a specialist on a Saturday in Memphis. Lengthy exam. Prognosis. Nothing we can do. Don’t know why this happened.

Fast forward to age 51. While cleaning my kitchen, I noticed the top of my stove wasn’t straight, it looked wavy (with my left eye, my good eye). Hmmm. That’s not right. Call my optometrist. Says “come in now.” I go. Guess what? Leakage in my left eye. This time I was able to go to Jackson as a retina specialist was now there one day a week (he’s there or in Paris all week now).

The leakage was sealed off with an eye injection, Avastin. I went every three months for a year until it was sealed and then was released.

But why was this happening? Wasn’t macular degeneration a condition for old people? Well, yes, mostly. But for the severely nearsighted, it is caused by the elongated eyeball that constantly pulls and stretches the retina, allowing blood vessels to form behind it. No, not for every nearsighted person. But for some, especially the severe ones. The blood vessels leak serum or even hemorrhage completely, with blood. The macula is the part of the retina where you have your central vision, the part that gives you clarity in vision.

In 2011 it started leaking again. More injections, every six weeks at first, then stretched out to three months. Everything under control until 2014 when my left eye hemorrhaged blood in the central part of my eye, the macula. I freaked out. Was I going to be legally blind, living a life with only peripheral vision? Remember, when I was 32, they couldn’t do anything.

But in 2014, they had a procedure that had been around for about ten years, a vitrectomy. Not sure of the spelling and too lazy to look it up this morning. Maybe vitrektomy. Doesn’t matter. A one and a half hour surgery in which they REMOVED the vitreous tissue in my left eye, replaced it with something else, and inserted a gas bubble (like with retina detachment) to push the blood out of my central vision. Had to keep my head down for a week. Had to sleep face down with my head hanging off the bed. Didn’t sleep much. Couldn’t watch TV for a week. Couldn’t read, because the gas bubble interfered with my left eye, and as far as my right eye—well, you see how I see with it. Boy, I wished for company and phone calls that week. It worked, but the gas bubble was like fertilizer to cataracts, so within six months I was unable to see well enough to drive (corrected vision at that point was 20/400) and I had to have cataract surgery.

Cataract surgery was the best thing that ever happened to me. For the first time in many years, I could actually see a clear world when I woke up in the mornings. I could see a clear world while swimming. When I went back for the follow-up checkup the day after surgery and I was reading the eye chart down to 20/50 without glasses, I literally cried tears of joy.

So everything was good, right? I still couldn’t read small print because of a permanent blind line left by the blood hemorrhage, but I loved Kindle which enabled me to enlarge the font. I still had to have the shots periodically to prevent new leaks.

This past March, though, my left eye started having serum leaks again. The Avastin was no longer working, so the doctor (shout-out to Dr. Don Wright and Dr. Brad Priester, my heroes—oh, and Dr. Suni, too, who did the vitrectomy because Dr. Priester was out of town) switched to medicine called Lucentis. He had to give me a sample at first because, of course, he had to get insurance approval, and these shots are very expensive.

The Lucentis didn’t work, and the leakages worsened, along with my vision. The doctor tried to get one more option approved, which insurance denied because that medicine is only approved every three months, and I have to get the injections monthly. So in September, he simply gave me another Lucentis shot and hoped for the best.

And, almost miraculously, it worked. I have had the best vision this past month that I’ve had since March. I don’t know why it worked this time, but it did. Last Wednesday, I had another Lucentis injection, and we’ll keep with that as long as needed.

Okay, I said this would be quick, but it wasn’t. But I wanted to explain. First, understand my right eye has no hope. It has a macular hole. Next, in spite of seeing so much better, I still struggle in dim lighting. I struggle at church with the songbook. Whoever is at the front leading us, I can’t see well, and the blind line makes it look like the top of his head is missing. If you pass me in a car, I cannot see your face behind that tinted windshield. If you are far from me (like when I am substituting at school), oh, like 20 feet away, I can’t make out your facial features. Sitting in my living room at night, I can’t see the facial features of my family members or friends if they’re more than five feet away because the lighting is not bright enough.

But that’s okay. I am grateful for what I’ve got. And I’m sharing my story in the hopes that if you or someone you love is struggling with this issue, whether age-related or like mine, you will understand what they’re going through. And if you’re blessed with good vision, please don’t take it for granted. Believe me, the Helen Keller jokes I grew up hearing are not funny. For someone who loves to read and draw and paint, like me, my vision is my most valued sense.

If you notice wavy lines or see flashing lights that won’t stop, get to your optometrist. The sooner you catch it, the better. And the idea of eye injections sounds horrible, but they use numbing drops and a numbing shot, so you never feel the needle going into the white of your eye. You will see the medicine swirling around. No big deal, once you get used to it.

And hang in there. You could have smooth sailing from now on, or you could have a very bumpy road as I have had. Just do what the doctor tells you (eat those leafy greens, take those AReds2) and appreciate what vision you have.

I know I do.