The Embryo Room

I am the river

2011-10-17T09:55:00.000-07:00

Water is basic. Physically, we're a sort of tenuous framework of bone and muscle swimming in a sea of water. It doesn't just move through us, it IS us. It fills our tissues and allows them to function, including the brain, but the water doesn't just service our more solid parts; that life-- our existence-- goes on in the liquid as much as the solid. A river is always flowing through us, but it doesn't wash us away, miraculously, we stay ourselves.

Well, most of us. Think how vulnerable that makes us. Me in particular, of course. As I've said before, I can't find a kind of water I don't neurologically react badly to, now. This MCS of mine means that I *don't* stay myself, when the chemicals and/or minerals I react to (but which most of you don't) churn and rush into me, through the open floodgates. It gets into every cell, of course, including brain cells. It changes what and who I am, and how I experience. I'm... less. Along with more of the horrible "electrified" effects, I feel and think with much less depth. Less of me is there. It's as if more brain function must be needed, to generate a full personality, and I've only got a fraction of what's needed. One thing that isn't diminished is a sense of horror at having this happen to me, with fewer and fewer breaks, as the years go on, and how increasingly disabling it is. Part of this horror is from the obscene amount of lost time. Every day or year spent like this is dead time I can't get back.

There's a movie, "The Unbearable Lightness of Being". I forget if I've actually seen it, but the title certainly leapt out at me... You could not come up with a better description. It's one thing to suffer (and that word definitely applies to me, without a single drop of melodrama), in the usual sense. It's yet another layer of suffering on top of that one, though, when you can't feel and process and experience your own existence properly. The toxic overload, whatever environmental chemicals are involved, makes me into a half-person. I'm a "lighter" thing, disconnected, empty. It's like walking around half-dead, except the symptoms, pain etc, are experienced fully. After months then years of this, after people have seen me "thin out" and get duller, even I can't help looking at myself as nothing, because if the depth doesn't return, it's a sort of fait accompli... I AM some dull, inconsequential half-person. I think I'm in the process of losing valued friends because of this.

By the way, anyone who insists on treating this as psychological not neurological... psychological problems involve mood changes, not shallowing of emotion. Also, my sanity and judgment aren't impaired. Chemical sensitivities are real, and affect many people, with doctors' practices and support groups devoted to it. Psychological problems aren't triggered by light or environmental exposures such as chemicals in water. It's just the awkward language I'm forced to use, to describe a nearly indescribable state, that encourages the confusion. Actually, all it would take is for someone to experience what I do for fifteen seconds, to end the "psychological" talk... unfortunately, it's not in my power to make that happen.

It penetrates, it invades

2011-04-11T13:39:00.001-07:00

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.

Latest graphic representation of condition...

2011-02-20T18:10:00.001-08:00

Watch this space, yet again

2011-02-20T18:03:00.000-08:00

It seems I didn't really get a good description written of this condition in the first post. I need to rehaul this whole blog and start again from scratch. I need to devote a lot of time and effort to recover from what I do to the eyes by being online (and other symptom-inducing factors) first, though.

Stay tuned, please....

My Street

2010-09-27T19:05:00.001-07:00

my cramped accommodations

2010-06-30T19:05:00.000-07:00

There is something incredibly wrong going on, neurologically, in that area between my eyeball and eye socket; some important and delicate nerve being impinged upon, I suppose. Doctors would do primitive scans with no resolution, find nothing, then send me away impatiently. I live in that almost nonexistant space. I'm slowly being squeezed to death there. I've been thinking about how to draw that.

e y e

2010-06-27T17:08:00.000-07:00

Watch this space

2010-04-11T03:58:00.000-07:00

This post is a sort of "placeholder", or I.O.U.. I need to try to describe the worst part of this condition, the part I never got to in previous posts, but which is the hardest to describe. I can't do this well right now. For now, I'll just say that a severe "hollowing" or "shallowing" of thought, emotion, and experience are involved, brought about or worsened by light, eye pressure, and some environmental factors, and pills I'm forced to take for other symptoms such as aspirin/caffeine powder.

I thought I'd come up with some very good adjectives for this. Calling it a hollowing or shallowing of emotional experience seemed like perfect wording, to me. It turns out, though, that those words mean absolutely nothing to people. It's as if I'd used no words at all. That basically kills any hope I'd had of communicating this, since apparently people cannot or will not grasp any words I can think of to describe the phenomenon.

I might need to find someone who can begin to understand, before I can try again to find other words. It's hard work fighting against the memory and concentration problems to communicate... and I guess I need to know someone's listening before I try again.

My street

2009-11-25T10:57:00.000-08:00

The first step that I can't take

2009-11-25T10:49:00.000-08:00

If I could research things as I need to, I'd learn about the biochemistry of vision. Somewhere between the photons hitting my retina and my brain, something's very wrong. Doctors may have specialized knowledge, but not the imagination, creativity, or motivation to apply it to my case. Those I have, I just don't have the knowledge, or eye/brain function needed to learn what I need to know.

I exist here

2009-08-11T22:47:00.000-07:00

The basics

2009-08-10T17:43:00.000-07:00

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.

2005-11-01T08:02:00.000-08:00

The Embryo Room

2005-10-11T22:47:00.000-07:00

The title is from the UK television program called the The Prisoner. Patrick McGoohan was made to stay in a room which would regress him to childhood, then take him forward through his life, showing why he made the decisions he did. Barriers are stripped away, and he's forced to reconnect with his most basic gut-level impulses. This episode made a huge impression on me in my formative years.