Two months ago, I was walking down the steps of a dark movie theater, and I fell. Hard. The step I was aiming for was much further away than I thought, and instead of hitting solid ground with my left foot, I tumbled into darkness. For a frightening split second I was falling without a sense of where I was going to land. It reminded me of the time I was thrown into a swimming pool before I knew how to swim. I started to sink to the bottom instead of floating to the top. Time stands still when you panic. These moments felt like forever.

I survived my long ago pool misadventure so unscathed that I ended up becoming a competitive swimmer.   Falling in the movie theater was somehow more traumatizing.

katfallstairsWhen I fell two months ago, I landed, Thank God, on the fleshiest part of my body–my ass, whose amplitude I was suddenly grateful for. Its largesse cushioned my fall and likely saved my hips from breaking. My left tricep slammed into the plastic edge of the nearest chair, but the rest of my body that made contact collided with nothing harder than a cushion. I banged my head, but not too hard.

I called softly for my husband, whose eyes got very wide when he saw me on the floor. He pulled me up and I steadied myself, grateful to be vertical. Hand on his arm, I hustled us to the nearest exist. Outside, in the fading light of evening, tears flowed.

I felt humiliated.

I guess it could have happened to anyone. But it happened to me. And it’s no mystery why. My depth perception has gone to shit. My eyes are failing me. I think I’m losing my sight.

I’ve had eye issues as long as I’ve had joint issues. In fact, the eye problems helped facilitate my very early JRA diagnosis—many of us who are diagnosed with RA in our childhood also suffer from Iritis, and the Iritis symptoms, coupled with joint pain, can help confirm that it’s indeed JRA.

For most of my life, my joints and related mobility issues were always more pressing.   Until about five years ago, my eyes just weren’t that bad.

And then, things changed, and fast. Suddenly, not only did I have Iritis, but I had cataracts and was at risk for glaucoma. With time all of these problems spiraled out of control. “Unmanaged,” is what the doctors say about my eye disease. Eye diseases.

Right now I’m dealing with three overlapping eye issues (in addition to the ever-present joint trauma of RA), each eye issue independently severe.

Katherine at Mount Sinai Hospital in New York, goofing around before her first glaucoma surgery.

Katherine at Mount Sinai Hospital in New York City, goofing around before her first glaucoma surgery

Up first! Both eyes have damaged optic nerves. My left eye has been operated on twice because the nerve damage was severe enough to be considered glaucoma. The first surgery was sold to me as relatively straightforward. Recovery time was supposed to be six weeks, and that surgery would fend off any further nerve damage.  For life!  Instead, it took six months to get better, and I had to go under the knife (yes, they use a scalpel) a second time to “correct” the first surgery. The second surgery, during which I was awake for the entire three hours, ended with a corneal implant. The right eye, up until recently known as my “good” eye, is well on its way to the same fate.

I also am experiencing Iritis flares in both eyes, which means I’m on high doses of steroid eye drops. Which can cause elevated intraocular pressure, and, you guessed it, lead to glaucoma. The Iritis treatment caused the glaucoma, which just feels like an especially cruel twist of fate.

A few weeks ago I discovered that I have a macular edema in my right eye. Which means more doctor appointments and eye dilations. My glaucoma doctor wanted to make sure there wasn’t a problem with my retina, which apparently he couldn’t determine on his own, so he sent me off to yet another office to see a retina specialist. Word to the wise—retinal disease is a specialty so in demand that it’ll give you the means to set up a multi-doctor practice in Beverly Hills.

The retina doctor, who’s an asshole, albeit a competent one, put me through an uncomfortable procedure that involved getting dye infused into a vein to see if I had retinal vasculitis. The dye made me nauseous but thankfully there’s no vasculitis (“Yet!” I thought to myself). But that meant that the edema was something of a mystery. And apparently where’s there’s an ocular mystery there’s reason to pump more steroids into your eye. This time, I got the steroids via a 25-gauge needle the retina doctor shot through my lower right eyelid.

“Zero!” is what he said when I asked him what my recovery time would be.

It’s taken about a week to feel better.

I guess there’s a fourth problem here. I can’t get new glasses to help with the vision issues in my right eye.  Because of the edema and all the drops I’m on to fix it, the vision in my right eye changes hourly. I can’t just pick up five pairs of cheap glasses with varying degrees of power from Walgreens, where I buy my snazzy plastic non-prescription sunglasses. I’m nearsighted in my right eye and farsighted in my left, a consequence of bilateral cataract surgery that I got before doctors were implanting progressive, versatile lens that wouldn’t cause this kind of problem.  I’m mono-visioned, and my eyes only work well when they can work together. Every pair of glasses I own has very, very different prescriptions on the left and the right side.

If one eye has compromised vision, I’m left with one eye that’s only nearsighted or only farsighted, which means my depth perception is screwed.

Which is exactly why I fell.

I’m scared.   My eyes are only getting worse with time and when one problem’s solved another creeps into view (there are so many good eye puns). I’m thinking about learning Braille. I’m compressing my ten-year plan into a five-year one so that I can achieve certain milestones and accompanying security sooner rather than later.

Here in Los Angeles I can take Uber around town and have been blessed with patient drivers who pick me up after my dilations and don’t give me a hard time when I can’t see them even if their cars are right in front of me. Though I have enough vision in my left eye to safely drive, I’m cautious about it and have resorted to all kinds of public transportation, including an overall positive trip on the Metro Expo line to downtown LA for a meeting. I took Amtrak down to San Diego. Whatever.

But what I’m most afraid of is the dark. Well, the movie theater dark.

Up until I fell there was nothing I loved more than going to the movies. Since my twenties I’ve had no problem going alone, and scoff when the people working the ticket counter feel the need to verify that yes, I just need one ticket for Dirty Dancing: Havana Nights even though it’s 7:30 p.m. on a Friday. There’s something deliciously luxurious about sitting alone in a plush chair, enveloped in darkness and swept away by the movie of your choosing.

If you lose your sight you lose your independence. Or maybe you just have to relearn what independence means.

Right now, it means being able to go to the movies on my own. I went to a matinee yesterday, in the middle of the afternoon, when I knew the theater would be empty and no one would jostle me out of the way. I went to a theater where I could choose a seat that would require no crawling over other people to get to.  I needed the least number of stairs possible. I had to minimize the chance of wiping out.

My eyes had a hard time adjusting from the bright Southern California sun to the relative darkness of the theater lobby. So I paused and pretended to fiddle with my phone before I moved on to the concessions stand.  After about 30 seconds I’d adjusted enough to walk around comfortably.

The movie was ok, but the movie wasn’t really the point. I ended up sliding down two seats from my pre-selected location once I realized two women with canes were going to have to crawl over me if I didn’t. They were gracious and included me in their post-movie movie recap.

I saw them struggle to get in and out of their seats. They didn’t say anything about it.

None of us fell on the way out. As far as I know.

Maybe if you fall and no one sees you, it never happened.