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I saw the world with near perfect vision this week. It was so surreal that my logical brain is still processing it: low vision to seemingly crystal-clear vision and back again. I think I fell down the rabbit hole like Alice, or more accurately, I finally climbed back out.
It wasn’t really a Lewis Carroll tale. I finally saw an optometrist who works with scleral contact lenses this week. These medically necessary contact lenses, which can work for those who are contact lens intolerant like I am, are my only hope to ever truly see again. Scleral lenses can correct keratoconic vision and actually help severely dry eyes like mine, as the lenses are filled with saline solution which keeps the cornea and most of the sclera nice and moist.
Scleral lenses, like other specialty lenses, need to be a perfect fit. The optometrist, who was very knowledgeable with a great personality to boot, had to determine the correct diameter lens for my eyes and then try various lenses out for fit. The lenses seem very difficult to get in due to the fact that the saline solution can’t spill out, so he had to put them in with my face parallel to the floor, which is what I will do on my own in due time. If I blinked while he held my eyelids wide open to get the huge lenses in, an air bubble formed and then the process needed to be repeated. The lenses were inserted and removed with a little suction cup on a stick.
After much trial and error, I had two scleral lenses in my eyes and they gave me a smooth corneal surface, instead of a keratoconic one. However, the doctor pointed out after looking at my corneal topographies, which at least haven’t changed in 2 months, that the center of my left cornea is now completely flat, which is not normal at all after cross-linking (CXL) and finally explains why my refractions for the FDA clinical trial show farsightedness in that eye now, not that I can see far or near for that matter. I get a + rather than a – reading, to put it in layman’s terms. No wonder the scan says the severity of keratoconus is 0%—the steep, cone-shaped cornea I had got bulldozed by CXL for some reason. Well, so much for a safe surgery with hardly any complications.
The scleral lenses need a prescription in them like regular contacts, which I’m sure my good doctor was dreading by then, but regardless, I needed the scleral lenses in my eyes to get an accurate refraction. I looked through the refractor and the doctor began flipping lenses over my right eye. Which lens was better? I should get a lollipop after refractions at this point. The odd thing was that I could see a difference in the lenses nearly every time for once. Suddenly, I had dark-black, crisp lines of letters in front of me. The ghosting—or multiple images—was gone! I read 20/20 with ease and I knew it was really 20/20.
He repeated the test with my left eye with good results, but not superb. There was still some faint ghosting and the letters weren’t as crisp, but I read 20/30 and with ease again. I quickly rambled off the letters instead of taking 5 minutes and guessing like I normally do. There’s a reason why the left eye—my better eye before CXL—can’t read 20/20 even with scleral lenses. That eye has developed central corneal opacity, a type of scar, that’s in front of my pupil and is affecting my vision. The optometrist discovered it in a simple exam of my corneas, and I thought he was confusing it with the right eye, which developed opacity months ago that’s not affecting my vision. He wasn’t. I have a serious scar in my left eye now.
This was just maddening because my idiotic corneal specialist wanted me to return to L.A. to see my CXL surgeon due to the mild opacity—more like a slight haze—in my right eye and has been monitoring this rare side-effect of CXL for months. I literally saw him 2 weeks ago and he never noticed the scar in my left eye that has stolen more of my vision? The optometrist, who should be the M.D., luckily has a better corneal specialist for me to see who I’ve never heard of, so possibly he’s new to the area. I wish I had been told that my vision wasn’t fluctuating at all per my scans, rather than the opposite, so I could have seen the optometrist sooner, who would have gotten me to the new corneal specialist in time to possibly treat the scar. I trust this new doctor, and that’s a rare thing.
So, now my doctor had my prescription, which must be the strangest in the world. He put it into what looked like opera glasses—ah, the post is making sense now. He handed them to me and told me to look through them. I noticed they were heavy as I held them with two hands and placed them in front of my eyes. I could see! I saw my doctor and there was so much detail in his face that I hadn’t seen before. Even the color of his skin had more tones and shades. I looked around the room as if I hadn’t been sitting in there for more than an hour. He told me to walk around with them, so I eagerly did.
I think I was falling down the rabbit hole again. I became extremely dizzy and felt like I had heavy moon boots on. I noticed I was walking at some strange angle—almost on a backwards incline, yet I felt I was falling backwards so why couldn’t I lean forward? I tried to keep walking, although I looked like a cat in kitten mittens. I saw the waiting area that was down the hall and it seemed so close. How could I see it? I walked towards it with my opera glasses and kitten mittens walk. I turned the corner and saw all the glasses in display cases for sale. I think I could have read the price tags if I cared to, but why bother when glasses don’t correct my vision. How surreal it all was. The dizziness was getting to me so I headed back to the room with my weird walk.
I told the doctor how I could see everything, but I felt so dizzy and couldn’t walk—as if my depth perception were off. Perhaps the prescription was too strong, although I wasn’t getting a headache and my eyes didn’t feel like they were crossing, which I’ve experienced with poorly prescribed glasses for mild myopia in years past. He said that the opera glasses are very thick and aren’t exactly the same as the thin scleral lenses that will be right on my eyeballs. He also reminded me that I will need to adjust to seeing again. What an odd concept! Then, I handed him the opera glasses and re-entered Low Vision Land.
I could see less than 2 years ago. They say that you don’t know what you have until it’s gone, but one could also say that you don’t know what you lost until you get it back. During the aria, while I ungracefully walked around the optometry clinic with my opera glasses on, I was in la-la land—maybe I was seeing Madame Butterfly in there like I did years ago at the now demolished Seattle Opera House. I forgot that I once saw the world this way, sans opera glasses. In such a relatively short time, I’ve become resentfully accustomed to this horrible vision. When it was briefly gone and then came back, I realized how abysmal my vision really is. I truly felt blind.
That made me think this week, as I replayed my aria of sight in my mind while waiting for the scleral lenses to be made in Texas. I should have them within a month and then I’ll know if they will truly work for me. I’m used to my low vision again and only have snapshots in my head of that near perfect vision I experienced. What if science invented something that could take away the unbearable, chronic pain that I’ve lived with for 12 years from Ehlers-Danlos? What would that aria be like when my collagen acted properly and all the connective tissue in my body came back together and healed itself? Would I just sit for hours since I can’t sit long due to the pain? Would I feast on the hundreds of foods that my GI tract can no longer digest? Would I regain 20 IQ points from not having a brain on pain? Would I catch the next flight out of this horrid city and be an expat again—my ultimate dream?
I would forget what the pain is like during the aria, just like I did with my low vision. Then, when the doctors took away whatever medical miracle made the pain go away and it all came rushing back into my body in a nanosecond, much like removing the opera glasses, I would scream the most bloodcurdling scream imaginable and it would be heard all the way in Japan—just as Madame Butterfly commits suicide with her father’s hara-kiri knife.