I exist here

The basics

It started in the early '80s as a severe eye/neurological problem, involving serious hypersensitivity to light. I'd been given atropine eye ointment, and it changed the whole behavior of my eye muscles, making them go into spasm and stay that way whenever I was around light, or tried to focus on print. This has only become worse and worse ever since. It's not just painful; there is also an extreme "current" or "electricity" that results throughout the body, but that doesn't begin to describe it. It's horrible.

In 1985 I acquired Environmental Illness (also called Multiple Chemical Sensitivities... EI or MCS). It looks as if the EI resulted from the nervous system problem I already had; either way, it's all one interconnected phenemenon now. EI means that one's system reacts to everyday substances that most people have no difficulty with, a form of allergy, but mainly to chemicals and synthetic products, especially man-made perfumes. Reactions can be severe and life-threatening, and can take any form, but also can be very hard to characterize in words.

This is not some sort of technical blog for medical experts, nor is it just a listing of symptoms. It's about the experience of a human being trapped inside a sort of invisible jail cell created by symptoms, with soundproofed walls. I'm sorry if that sounds melodramatic, but it isn't. The symptoms themselves (partly bad memory/concentration, but it's not that simple) make it very hard to talk about or describe the condition. I keep going "blank", forgetting... it becomes almost impossible to process information in my head. That's the only way I can think to put it. Therefore, getting help has been impossible. If your communication is terrible, how can you give doctors or others the information they need in order to help you? How can you persuade people who doubt you?

This blog is an attempt to get around that problem, and to talk about what it's like to experience all this. After 29 years, I have to start to be heard.