My eyes crashed severely on the Tuesday before Thanksgiving at 6 PM. This wasn’t the first time they had crashed severely. The first time was on December 19, 2009, as I was reading Special Topics in Calamity Physics, a novel I couldn’t put down. That crash left me unable to read, look at photos, or draw, but this crash has forced me into the dark.
ME/CFS is characterized, in part, by “crashes”: sudden increases in symptoms that can follow too much activity (physical or mental), a secondary illness, or stress. A typical crash, for me, includes increased fatigue, mental fogginess, headaches and weird pains, achiness, and increased sensitivity to noise. Until last year, I didn’t realize that my eyes could crash on their own, separate from my typical, whole-body crashes.
This current crash has two distinct parts: Extreme sensitivity to light and profound weakness of the eye muscles, which makes it impossible to focus on anything without major discomfort. My eyeballs hurt and feel exhausted with a minimum amount of movement left or right, up or down. The muscles in my face around the eye sockets feel strained and twitch periodically. I cannot look at anything, not words on a page, the remote control, the labels on my medication and supplement bottles, or the numbers on the phone touch pad. I haven’t seen Mike’s face, or my own, in two weeks.
Much of the time, I wear a mask that blocks out all light, especially when I am sharing a room with Mike, who, being a normal person, prefers the lights in the apartment to be on. But when I’m alone, the lights are off. We’ve covered the windows with dark sheets to block out light, which gives the apartment a haunted house look, even during the day. Being in the dark all the time has its challenges, and I’ve had to learn to do everything by feel, from retrieving food from the fridge, to dialing a phone number, to maneuvering around the apartment.
The neurological effects of the crash are bizarre. Frequently, whether my eyes are closed or open in the dark rooms, I see flashing lights, like strobe lights which give my surroundings an even more nightmarish feel. With my eyes closed or in the mask, I see shapes, colors and figures, moving, morphing, transforming,unfolding like a silent film against the inside of my lids. Now crowds moving along a city street, now children in a playground. Where in the recesses of my brain do these vivid images come from? Sometimes all I see is a continually stretching, reaching, brilliantly colored, violet or green form, imploding and exploding like the default screen saver that used to appear when my Mac sat idle for too long.
This crash was unexpected, a shock, and once again, I am reminded not to underestimate this disease. When something like this happens, difficult and unpredictable, I seem to go through four distinct phases. The first, which only lasts a day or two, consists of disbelief, outrage and denial. Then there’s the sadness and anger, which can last for days, and features regular outbursts of crying and yelling at innocent people and inanimate objects. The third stage includes problem solving. The sadness and anger start to ebb a bit, acceptance of the situation is imminent, and it’s time to problem-solve. (For example, I came up with a system to mark the keys on my computer keyboard with tape so that I can identify keys I don’t have memorized, like Command and Option, and I’ve learned to designate permanent homes for things like the remotes, phone and water glass so that I can find them again in the dark.) The last stage I call “equilibrium.” New solutions have been implemented, the sadness and frustration, though still there, are less acute and volatile, and I have adjusted to the changes in my daily routine. Life gets its rhythm back after being suspended for what seems like way too long, and I find I can focus better on my projects and things beyond the crisis.
Since I began writing this post, things have improved slightly, which is encouraging. But once again, the disease has reminded me that it’s bigger than I am, and unpredictable, and has tricks up its sleeve. I’ve been taught this lesson before. I probably should have taken better care of my eyes, should have rested them more, should have stopped trying to look through the box of old photos Mike found, should have stopped taking pictures so often. Maybe I could have prevented the crash, but then again, maybe not. I will be more careful now, at least as long as the memory of being sightless lingers. But someday I’ll forget, or I’ll ignore, and reach for something that’s just a little bit too far beyond the edge, and I’ll crash again.