It penetrates, it invades

At first I just dimmed my bedroom, when atropine made me permanently light-sensitive in 1984. Large mistake. As long as I didn't have a totally dark room to use whenever needed, the sensitivity gradually snowballed. In a few weeks, I reached a horrible day when it was painfully clear I couldn't be around light anymore. The one room with no windows was my parents' closet, and I had to hole up there. To their credit, my parents went out and bought materials with which to get my bedroom black, and not just dim. I'd done a lot of damage to my nervous system without realizing it, though, by delaying this step, and it took several awful months before the sensitivity went down enough for me to be out of the dark room. I still had to stay in low light, as I have ever since.

I don't think that as long as I live, I'll ever get across the intensity of the reaction of my nervous system to light, how extremely "invasive" it is, and how penetrating. It stabs into you more deeply than you probably have ever imagined anything doing. Family, doctors, and others over the years have no doubt thought that it was a more ordinary sort of "surface" thing, as if my eyes just "hurt" in the usual way. It's electrical. It's like a sort of mini-electrocution, "mini" only in the sense that it doesn't actually kill me. It doesn't take long for people around you to start assuming you're prone to exaggeration, when all you've got are vague words about how severe your problem is, without having good language to describe specifically what it feels like. There went my family.

It's important to me to be as accurate in the words I use as I can be, without either exaggerating or downplaying these neurological effects. I'm just saying what's happening. I'm not after sympathy. Sympathy is usually undignified, and it's certainly undignified to beg for it by exaggerating symptoms. What good would sympathy do for someone, without a genuinely severe problem, anyway? What would you need it for?

I think the electrical effects led to my acquiring Multiple Chemical Sensitivity (Environmental Illness) in April 1984. I think the body just isn't built to take extra current going through it like that, and finds some way to break down... Amongst several triggering factors, the big one was the opaque black plastic that my parents had covered the bedroom window with. The sun would heat it up, and my system got sensitized to the plastic fumes.

I guess that the main thing I wanted to say today was about the penetrating, invasive nature of the effect from light. That may be the point at which all the misunderstanding happens. The severity makes all the difference in the world... if this "electricity" I experience isn't almost unimaginably intense, if it's assumed to be irritation or milder pain, something ordinary, then I appear to be some nut who has a phobia about light and hides away in the dark for no good reason. People are far more comfortable thinking that way about people. Cynicism is our default state of mind.

This is a question I've heard others ask, who have unusual, invisible illnesses: Why can't they just assume I want to get well? I dream about being outside in the sun, without these neurological effects. It's all I live for.