I’ve never written about this before, I just haven’t even really wanted to talk about it. When something isn’t going well, I am
very ostrich-like; I prefer to stick my head in the sand and ignore the said problem. That’s the approach I’ve taken for the last fifteen years since I was originally diagnosed with pathological myopia or myopic degeneration. Until three years ago, this approach worked fairly well for me. I knew I had an eye disease, but it didn’t affect me on a daily basis. Due to high myopia (-17.50 and –15.50) I needed glasses or contacts to function, but I had been wearing glasses since I was four. This was no big deal. Other than the occasional blind or blank spot due to the retinal tearing – which would require an emergency visit to a retinal specialist -life was normal.
I developed visual disturbances in the peripheral vision of both eyes. It would look like a ceiling fan was spinning on the outside vision of both eyes. I began to develop floaters, which were a nuisance, but didn’t affect my daily life. I was diagnosed with cataracts, but assured they were baby ones and wouldn’t need to be removed for years.
About seven years ago, I developed a complication called Choroidal neovascular membrane or CNVM for short. Basically, the eye realizes it isn’t healthy and so it tries to grow new blood vessels to help the eye. This causes numerous complications which are treated with Avastin injections.
Now, when I would notice a blank or blind spot the appointments usually involved an additional step of torture. After the routine dilation and multiple doctors shining bright lights into my eyes and then pictures and more pictures of the retina, an off-label cancer drug would be injected into my eye. And, yes – it is very painful. It brought the term “stick a needle in my eye” to a whole new level. I would lose the vision in the affected eye for up to four days, the eye would swell and turn red and hurt like crazy. The upside to the injection was that the sudden and permanent vision loss that would have been inevitable five years earlier, was being able to be treated.
To date, I’ve received three injections in my left eye and six in my right. Even at this point, I still was functioning normally and I just didn’t want to be different or limited. So, I acted like all this was normal. I knew and accepted that sometime in the distant future I may have low vision or blindness, but it felt like a distant concern – I was still in my 30’s and felt a degree of invincibility. Or maybe I felt like God was putting me through this trial – but He would heal me or not allow it to progress to those extremes.
Three years ago I noticed blurriness in my left eye when I was reading. Thinking I needed new contacts, I innocently made an appointment with a contact lens doctor and believed that this issue would be resolved in a few weeks. After a harrowing summer of at least ten appointments, this doctor couldn’t correct my eye. She tried – but I was left with contacts that made me feel like I was in the county fair, looking at those funny mirrors. Words would come in and out of focus when I tried to read, which was a nightmare for a teacher. I began to wonder if this was the best I would ever see. Lines became wavy and I began to learn I couldn’t trust what I saw.
A year later, I was referred to an excellent doctor who was able to correct some of the focus issues, but she still couldn’t correct the vision in the left eye. It was attributed to presbyopia or my eyes’ ability to not focus well up close. And yes, at forty years old, that wasn’t too early for this to occur. I was convinced my lazy eye from my childhood had affected this. I was patched from age 4 to age 12 when I refused to wear the patch anymore. Here I was at 40 thinking it was my fault for not wearing the patch more. It wasn’t until just a month ago I learned the amblyopia I had as a child didn’t affect this at all.
In May of this year, I was driving home after dark at night and was struggling to make sense of the taillights in front of me. Instead of seeing the usual two, I was seeing eight. The traffic light was four lights and not one. I was concerned because fall was coming and I would need to see after dark to drive my children to various activities. I quickly made an appointment with the retinal doctor who confirmed it was a contact lens problem. I remember explaining to the receptionist at the contact lens doctor that I couldn’t wait two months for an appointment, I needed to get new contacts a.s.a.p. – so I could drive at night.
My denial had to stretch the patience of my kind doctor. She tried and tried and tried to eliminate the triple vision I was seeing when I looked at lights. I was so persistent and with an hour drive each way to see her, I spent many summer days challenging her to fix my problem. She graciously sent me back to the retinal specialist.
That appointment was the first I really understood what was going on. The doctor showed me pictures of my retina and explained the left eye had some buckling due to the progress of the disease. That was most likely causing the wavy lines I see. The double/triple vision was due most likely to a bleed I had very close to my central vision. The likelihood of my vision in my left eye being corrected to anything better than 20/50 with double/triple vision was slim to none. I couldn’t believe my ears that day. Weren’t they going to fix this? Didn’t they understand I CAN’T SEE??? I wouldn’t be able to drive at night – didn’t they realize how this was an inconvenience for me – for my family? I needed to see at night to drive to lead Bible studies and take my kids to soccer and youth group. I didn’t want it for selfish reasons. This really wasn’t happening, was it?
The retinal specialist gave me a referral to another specialist to rule out muscle issues. He felt the chances of it being that were slim, but at this point, they needed to leave no stone unturned. He also mentioned the possibility of a laser surgery to see if that would correct some of the issues the contacts couldn’t. Small bits of hope. I’ll see the muscle specialist on Wednesday of this week. I’m so scared because I don’t want to hear more bad news. Remember the ostrich. I think I’d rather not know.