To Live

I was so scared I couldn't be scared.  Ghastly scared.  I was 35, entering a renowned New York City hospital to have a biopsy.  I didn't belong there.  (Who does?)  I remember white and gray halls.  Then, the quiet, ultra-civilized office where nobody cried and nobody winced, where the magazines were all ultra-New York-chic and what did I care about this because I didn't want to die.  Period.

The office meant death to me.  The hospital meant death to me.  The biopsy meant death to me.  Death all around me.

I'd had operations before, several times, since childhood.  But this . . . this was to find out if I was going to get a death sentence.  There are some people who are not afraid of death.  I'm not one of them.

And, even more to the point, I want to live.  I wanted to live that day, too.  And I did live.  I lived through the biopsy.  I lived after the biopsy.  But I was one scared human.  Not shaking scared where your teeth chatter and you can feel fear pulsing through every cell.  No, this was a deadened kind of fear, an emotional ossification.  A pure, infused dread of everything strictly clinical and ultra-medical.  Everything. 

Now it was time to do anything to prevent myself from ever entering such a hospital again.  I went to the best alternative practitioner I could find.  I followed his suggestions to the letter.  He was good; his suggestions were right.  This doctor was, and is, gold.

Came the day, the year, when I could no longer afford to pay the fees.  My appointments slacked off.  Health troubles arose.  So many, one on top of the other, that I couldn't find it in me to be medically scared anymore.  I was medically tired.  I was chemically wiped out.  Weary beyond description.

Food and supplement regimens:  My mental capacity for following them steadily declined.  There was life to be lived.  My life had been spared a medical death sentence -- now it was time to use the life that was given anew to me each day.  But, being so tired, I found that strict and excessive health regimens interfered with thoughts, feelings, other people.  I lost track of all my regimens, could barely recall my previous list-following behavior, couldn't bear lists anymore, couldn't even make them.  I tried making a few, to recapture the old days.  I kept losing the lists.  Then I lost track of all my symptoms.  There were just so many -- which one mattered most?  How to unravel such a tangled thread?  Where would one begin?    

Well, I'm sitting here beside my 10+ bottles of supplements and facing the same question I face every single day:  How am I going to DO this?

How do I formulate a system of taking these supplements regularly, so that I can tell myself, "I've honestly tried building up my levels of this and that and now let's see the results"?  Do I even believe in supplements anymore?  Is it useless to seek nutrients apart from the foods in which they naturally occur?

It's all beyond me -- but, again, I want to live.  So, just in case I really need these supplements, I open up the capsules (can't swallow pills well) and pour as many as will fit into a jar of baby food.  It's a repulsive mixture, but things could be worse.  Each time I take a capsule from a bottle, I move the bottle to a new place on top of the computer hard drive, or on top of the table beside it.  In this way, the bottles move from table to computer and back again . . . but at least I don't repeat a dose I shouldn't repeat.  One doesn't want to overdo the liquid kelp iodine.  I've heard one can get quite itchy from a large dose.

So, this is my "list."  I'm supposed to take more calcium and magnesium but most days, lately, I haven't had the stomach for it, with the baby food jar and all.  So I'm not at my optimum levels.  Of any nutrient.

Then, there are the chemicals to avoid which I've nearly given up avoiding -- which is why I'm having trouble writing about them. Of course, I haven't bought mainstream chemical cleaners, laundry products, air fresheners, scented candles, or anything directly harmful.  It's just that I'm not thinking about these things when I interact with the outside world.  I'm often inhaling deep gulps of someone's seriously strong laundry fragrances on his or her clothes.  I no longer automatically move away.  Sometimes I get a migraine.  And many times, I don't.  I'd like to think I'm "better."  But other health things are seriously out of whack and I'm not understanding why -- if I'm so much "better."  My diet isn't bad.  It limits itself to reasonable foods, such as tuna (yes, some mercury and whatever else, but the fish part is good), salads, potatoes, beans and onions and olive oil, gluten-free protein bars, peanut butter and rice cakes, some fruit, some eggs, a bit of meat now and then, rice cereal, water, and coffee.  Has the chemical sensitivity assumed a new form?  Am I now approaching some real systemic disaster, such as kidney overload and/or failure?

From what I've read, there can be masking and metamorphosis of chemical sensitivity reactions.  I'm honestly at a place where I'm completely baffled, having serious trouble swallowing not only pills, but food, and I'm wondering how things are really going for me.  My brain is completely overloaded with chemical sensitivity information and I'm loathe to go through life mentally ticking off capsules and avoid lists in my mind while I'm trying to pay attention to other people.

Regimens can help preserve a life, and yet there is always a price of priorities clashing with priorities.

I have to say that I've arrived at a mental place where I believe that sometimes -- or even often -- I'm not going to feel well because I didn't avoid this or that perfectly, didn't eat this or that food enough, didn't take sufficient amounts of this or that supplement --

And this, for me, is life.  I can do what I can to fend off systemic destruction, but I can't do it all.  I can't even do a good portion of it.  I can do a little bit.  My health is going to be slipping and sliding.  And I'd rather not spend the rest of my life focusing on that.  I'd rather just "manage it" as it comes.  I can manage it smoothly and deftly on one day -- but on another day I might just have to tell everyone I need to stop everything and take a nap.  It's not neat and tidy.  It's not predictable.  It totally violates my sense of order and makes wreckage out of my expectations of myself.

But there it is.

Perhaps my "slot" in this vast "field" of MCS is this:  I can't change the world, as I'd hoped.  I can't even set forth a reasonable recipe for avoiding this or that, or offer a reliable regimen for supplements.

But what I can do is write about the "human experience" of MCS and its tangential issues.  I can keep others company in their trials and tribulations.  I can tell you how things really pan out, in my own experience -- and not simply how I wish they would be.

That, friends, is my "slot."  It's a much tinier one than I'd aspired to when I began this blog.  

However small a contribution it may be to the bettering of the human condition, I'd like to share it with you.

~ Carolyn