The Complexities of MCS II: A ‘Perfect Storm’ – Or What? by Cort Johnson
Several times a year events conspire to send my sensitivities to new heights. This blog covers a few days during such a period and my efforts to figure out what went wrong.
It takes a cold?– I love vacations, not the ones I take, but the ones other people do. I don’t really have a ‘home’, per se. or a room. There is no room I can hang out in by myself or rest or read or listen to music. In San Diego I have a place at the dinner table; in Nevada at my fathers house the only room I could call my own is heavily carpeted.
When everyone goes away, however, I have the dining room – uncarpeted in both houses to call my own. I can’t tolerate either for long periods of time; a few hours in the morning and then at night but when the family goes on vacation – it’s all mine. I can listen to music, watch DVD’s, do whatever…it’s a vacation for me too. After a while the isolation can become stifling but for a few days it’s great – I have a room of my own. .
This time the family’s vacation ended with a problem. Kate, one of the kids on the trip, got sick with a stomach flu on Tuesday and then my nephew Quentin got it on Friday. On Saturday, the day they returned, he couldn’t keep anything down. I eyed him warily, started washing my hands.frequently, and began counting the days – I figured if I made it past three days I’d probably be okay. It hit both me and my sister on Tuesday. She threw up and felt better but I just got extremely nauseous and stayed that way (Problem #1).
Shelter From the Storm– Unfortunately a big storm was moving in the next day (Factor #2). I’d been sick – as I usually am during winter – on and off for the past few months and it was on again. Even though this is a fairly mild cold, no stuffy nose, sore throat or fever, just fluey symptoms when I eat or move around much, I didn’t want to face what looked like a major storm huddled under my tarp on the hillside. I can handle intermittent ‘showers’ but steady rain is a problem. Since I’m camping illegally I can’t pitch a tent, so I have to drape the tarp over me and if really rains my linen is going to get wet – the only question is how much. Even a small leak in a small area can penetrate all 15 or so of my sheets and blankets. It takes a lot of work and a good deal of change to wash and dry everything. Plus I have to wake up before 6 am and drag everything, sometimes in the rain, to the car – a miserable and trying experience.
The night before I got sick the fog had rolled in. When this happens it picks up toxins from the golf course that make breathing difficult for me. In order to get away from the golf course I had dragged my linen way up the hill. I don’t usually do this – it’s exhausting for one thing and it’s really bushy up there, and the bushes, a combination of black sage, coastal sage and sugar bush, are really aromatic. I can only handle about one night in such a pungent environment. This time, figuring I wasn’t going to see anyone late at night instead of getting off the path as I normally do I simply plunked my linen down in the middle of it and went to sleep. The next morning I noticed my linen really stank.
Coming down early that morning I could tell my senses were hypersensitive, the hillside reeked, the linen reeked, the backyard reeked; everything was almost painfully pungent – my senses were obviously jacked up. I asked Rob, my sister’s husband, if he smelled anything but he didn’t. What was going on here I wondered? Had my linen gotten contaminated in the Laundromat? Or was my cold causing problems? Colds have never raised my sensitivities before but I had gotten really nauseous with this one – a common reaction I had to chemicals.
The other problem was the car ( #3). For the past month and a half I had once again been having mysterious problems with my minivan. I had checked it thoroughly but couldn’t find any substantial leaks in the engine, nor were there any holes in the floor or anything in the interior that was suspect – I was completely stumped. Only 4 months ago I had finally solved a problem that had gone for almost 6 months without resolution. That problem had kept me stuck in San Diego for the summer. It had turned out to be a relatively cheap fix – some ‘leaking’ gas lines – but it had taken forever to find them.
It had been a frustrating summer. My health is much better in the Nevada desert; at one point the year before I wondered, in fact, if I was going to have a major breakthrough. Since however, just about every time I tried to get back there problems with fumes in the car had derailed me. I spent much of the summer fuming about my &^^*#$$%ing car…and now, a short time later, I was having mysterious problems with it again.
This time I thought I might have found the problem; a small leak in the rear main seal. This is a particularly bad place to have a leak – it’s near the catalytic converter – and if it leaks it can blow right onto it and vaporize. I had been assiduously cleaning that area every day and I was beginning to dare to hope that I’d fixed it. The only problem was that I’d had that leak for a lot longer than I’d had this problem.
I didn’t feel ready for an hour and a half trip in the van but with this big storm coming I didn’t feel like I had much of a choice – I threw my stinking linen inside and left. By the time I hit Ramona, about 20 miles away, I was in trouble – my breathing had shortened, I felt irritable and out of it and I could the feel the nausea starting to rise. After about 40 miles I had either adjusted or recovered and was feeling pretty good but as I pulled into Borrego Springs I was a sick as a dog; My breath was short, I felt wrung out and nauseous, was having trouble communicating and the smell of the linen seemed pervasive. When I am overexposed to something I can taste it in my mouth and that’s what I could mostly taste – the smell from the linen. I thought #*$&! That goddamn linen is killing me! Even though I had just spent $25 washing my linen I had to wash it again – I doubted I’d get any sleep if I didn’t and I’d already had one bad night of sleep.
Laundromats have to be approached with caution, however. They are full of scents from the perfumed detergents people use. Anything washed in them is sure to be contaminated Most of the time it’s gone in a day or two but every once in a while it takes 4 or 5 days to ‘outgas’, and maybe once a year or so, I encounter something so noxious that I wonder if it could imperil my health. I vividly remember one episode in the desert that left me almost debilitated. During one of my few snatches of sleep that night I dreamed I was being dragged me down to hell. Every time I fell asleep I had a nightmare. God knows what was in those clothes.
Because of their dangers I try to visit Laundromats early in the morning before anyone’s had a chance to get in there and never on the weekend when they’re really busy. Here I was, though, on a Sunday afternoon staring a row of washers- everyone of them FULL with linen from the hotel, a huge box of cheap, industrial strength, highly perfumed detergent sticking up from a mound of already washed clothes.
There was nothing to do but forge ahead – better to spend a night in highly perfumed linen (Problem #4), I thought, in what I had been sleeping in. I washed everything twice, once with soap and once without, crossed my fingers and drove out into the desert. I still felt terrible. – usually when I’m having trouble with the car I recover fairly quickly. Now several hours later I was almost as sick as ever.
I’d encountered another problem, however, driving in – I had smelled smoke (Problem #5). This was strange given the cool and cloudy weather. To get to the desert from San Diego you leave the coast climb up into the mountains and then dip back down into the desert. It was during the last part of the drive in the mountains that I’d smelled smoke. Smoke is always bad; it doesn’t matter where it comes from – trees or factories or whatever, smoke is a bad thing if you have MCS. I had looked around but couldn’t find anything but then as I descended the steep grade to Borrego Springs there they were – spirals of smoke rising just outside of town – they were burning the orange groves. So I had smoke to contend with as well. That wasn’t good but still it wasn’t a lot of smoke; I still couldn’t figure out why I was feeling so bad.
There was still another problem, however. Most of the storms that hit San Diego come from the west. This is a good thing. Twenty-five miles to the east of Borrego Springs is a huge, neglected, dying lake called the Salton Sea that is prone to algal blooms. The wind usually blows in the desert from the west in the early morning, from the east during the day, and then from the west at night. If the wind is blowing from the east it can blanket the area with a nauseating stench that has many times chased me out of the desert. Since storms almost always come from the west they provide me a window in which I can be reasonably sure I’m not going to get hammered by this stench.
This storm, a tropical one, came from the southwest and the wind was blowing from the east. This is why I was smelling smoke from the desert in the mountains. In order to get away from the mountains and the rain I had moved further east than I would ordinarily dare and I could smell the edge of the taint from the lake in the air (Problems #6). It wasn’t terrible but it was there and for some reason, even though I was to the east of the fires, I could smell some smoke as well.
This was all compounded by the type of storm that rolled in. It wasn’t the kind of fast-moving windy storm we usually get from the north. It was a slow moving storm with a low cloud cover that essentially captured all the junk in the air underneath it. Instead of cleaning the air it was actually making it worse (Problem #7).
The cure for all this, of course, was rain, and early that morning it finally did rain intermittently. The rain was good but since I was in the desert it lead to another problem (Problem #8). The desert is full of aromatic shrubs and if there’s one thing I can’t stand anymore it’s a good aroma. During the summer I have to stay away from dense stands of creosote bush because of their stink. During the winter I have a problem with one shrub, in particular, that stinks to high heaven when it gets wet. Unless I’m in wash, where it’s particularly abundant, it’s more an annoyance than anything. This time, even though I wasn’t near a wash and was, in fact, camped in what I thought was a ‘safe spot’, this bush all of sudden became a real problem. It’s hard to describe an odor welling up inside of you but that’s what it felt like – and even if it’s a good odor it’s not a good feeling. It’s usually accompanied by a sore throat or nausea as well a fatigue and problems with cognition.
I was surprised at how badly I was reacting to it but I knew it was temporary; the storm was passing, the area was drying out, and by the afternoon it should be gone. I packed up and headed towards town to check up on my e-mail. When there I opened my computer and was stunned at how badly I felt. Computers have been a problem since I got MCS but they have been an ever lessening problem. I can now fairly comfortably spend a couple of hours a day on them but this….this was incredible. It felt like some magnetic force was gripping me and sucking my energy away. In all my years with MCS I had never experienced this bad a problem with a computer. A friend came over and said I was looking pretty bad.
Somehow the last couple of days had conspired to blow my sensitivities sky high. This was getting serious! – what in the world was going on?
Some Reflection– It’s at times like this I look at everything that’s happened in my life. Perhaps it was just a bad sequence of events – a ‘perfect storm’ of problem that conspired to overwhelm my defenses; I was after all sick, traveling with a load of bad linen, perhaps in a bad car, into a somewhat smoky, smelly environment turned bad by aromatic shrubs and my sleeping in bad linen.
These were a lot of little and some not so little problems but I didn’t think it added up. I deal with ‘little’ problems all the time; I am almost never in a safe environment; my sensitivities are a constant problem and problems often seem to cascade without warning. I knew I had pushed the envelope but I didn’t think I had pushed it that far.
I had one other candidate. Just before the trip I had been taking a liquid vitamin supplement called ‘Vibe’. It had worked great. I’ve never had any sort of reaction one way or another to vitamins but this colloidal supplement had boosted my energy dramatically. I had been downing it pretty frequently. Could my increased sensitivities be due to my ‘reaction’ stepping in? That was certainly possible. My worst sensitivities over the past few years have, in fact, come when I’ve ‘overused’ something that’s helped me. I hadn’t taken it for a day though – time enough, I thought, for that problem to start to subside.
It Takes a Car?– The next day was better, I was weak but starting to revive and the next day I was better still when I returned to San Diego. I managed the trip fairly well, even did some work in the garden and the next day got in the car to go to the university to do some research and bam! It was back. I made it to the university but was sick and nauseous. I spent the rest of the day slowly making my way back home. I did a stage and then rested, another stage, rested. It was nemesis – that $%&*ing car all the time. It had got me going out to the desert. I had recovered somewhat in the clean desert air and then it got me again when I got to the less clean San Diego environment.
This wasn’t the kind of car problem I was used to having, though. Usually when the car develops a leak somewhere, it rapidly drives me bananas. It usually quickly gets so bad I can barely drive it a mile or two without getting really ill. These leaks, while dramatic in their effects, are usually a piece of cake; they are big enough that they are usually easy to find. Even though I get really ill once I get out of the car I usually recover pretty quickly.
This problem was just the opposite. This time I was able to drive the van a considerable distance before getting really ill but I wasn’t getting over this problem anytime soon. I was sick all that day and most of the next and was still sick the next day although I’d hardly driven the car in two days.
I had examined this car up and down; the engine, the flooring (no holes), the interior (no noxious materials) and had found nothing out of place. Somehow one possibility had eluded me, however. The side window had broken about nine months earlier and since I couldn’t afford to get a new one I tapped a plastic sheet to it using duct tape. Duct tape is real no, no for some people with MCS but I’d no problems with it. By now, however, I’d used so much duct tape on that window that the doorframe had become caked with residue. Could I slowly have become more and more sensitive to the duct tape? It was stupid of me, really, to have treated such a potentially toxic material so casually. It was always meant to be a temporary fix but I had let it go… This could possibly explain my long recovery period – I’d probably accumulated a lot of that stuff in me over time. Nor was the plastic good – it was a soft plastic that was probably pretty noxious. What was I thinking I wondered?
Still I wasn’t convinced. Since my problems in the car were greatly pronounced when I started the engine I was still zeroed in on that engine. I’d had a bad spill in the car, though, about two years earlier, that caused me to react badly when the engine was started as well. There was certainly no harm in trying. I got some Goof Off and cleaned the stuff off. I was sicker than ever that day but that may have been a good sign given my exposure to the duct tape as I got it off. Despite its incredibly toxic nature I am usually able to use Goof Off without much problem; it works quickly and dissipates rapidly in the air.
The next day I was better and did seem to do somewhat better in the car. Then about a week later I started to deteriorate again! But after awhile I realized this was clearly due to something else. I checked the engine again – nothing. After a couple of weeks I thought I’d identified the odor – radiator fluid. A close examination of the radiator found a very slight leak at a bolt – something you’d never notice it unless you were looking for it. The fluid had eventually made its way about halfway down the radiator. I was astonished I had reacted to such a inconsequential leak. I tightened the bolt, cleaned off the radiator, then about a week later had the engine steam cleaned and the interior cleaned. A couple of days later a big storm hit; I held my breath, piled everything into the van and headed out to the desert – it was a breeze; after two months I had my car back again.
(Of course it couldn’t be that easy could it? The first night in the desert I woke up gasping for breath and eyes burning because of some plant I’ve apparently become allergic to. On the way out of there at one in the morning, wind blowing seemingly at gale force, I careened into a rock at the side of the road, bent my rim and ruined my tire. That meant a NEW tire – a substance that will be quite noxious for the next month or so. Such is life with MCS)
Conclusion– I am still unclear exactly what happened to raise my sensitivities to such a high levels for that week or so. The car was clearly a major culprit as was my mysterious problem with the linen. All in all, though, it seemed more like a ‘perfect storm’ of events cohered once again to just whack me a good one – that’s the rollercoaster that is MCS.