Monday, October 24, 2011


If you’ve ever shared a meal with me or attended a social event with me where food was served—or walked past me a stone’s throw away at any of the aforementioned occasions—then you already know that I have a very restricted diet.  Most diets are intended for weight loss or nutritional gain.  Mine is of neither sort.  The sole purpose of my diet is to spare me pain.  Certain components of food, such as acid, caffeine and potassium, turn toxic inside of me and cause inflammation which escalates into a myriad of other symptoms, like tense muscles and throbbing nerves.  Essentially, pain.

I started my diet 3 years ago, when I was first introduced to my disease.  The process of adapting to my diet—and sticking to it—has actually changed the way that I think and approach life, to a certain extent.

This diet is called an “elimination diet” because you start with next to nothing, and slowly add foods one by one to “test” their potency.  Some foods are found to be “safe” and can be included indefinitely, but the “risky” foods are meant to be avoided always.

For the first couple weeks of my diet, I purged my system of everything but the basics: grains, carrots and spinach.  The goal is to have a “status quo” from which to judge your experimental additions.  My search for a direct cause/effect connection (between what I eat and my symptoms) became a sort of personal science experiment.  My “control group” was my already-tested safe group of foods.  The “variable” was one food item eaten only once during that week.  I’d then wait for my symptoms to either flare or remain constant.  One by one, I ruled out bananas, processed meats, tofu, salad dressing, and on and on.  I also found “safe” additions, like French fries, blueberries, and bacon.  While my tummy sometimes growls for hunger (or food-envy), I can honestly say that keeping to “safe” foods makes a palpable (though not entire) difference in my symptoms—that is almost worth the sacrifice of my taste buds.

My already analytical and organizational mind clung to this process of cause/effect and soon applied it—to a slightly frightening degree—to other aspects of my life and the world.  I’ve begun to expect a reason for, and an explanation to, everything that happens.  My diet gave me reins to control, ever so slightly, my pain, so I’ve monopolized this sense of power and demanded it elsewhere…with varying degrees of success.   

I’ve been rejected for programs and jobs, so I searched for the “cause”, and decided to polish my interviewing skills.  I had the “effect” of anxiety when driving on busy highways, so I endeavored to practice, practice, practice.  I acquire “fistfuls” of music, and then “sift” through them song by song and weed out the ones I don’t like.  Harmless analysis?  Not quite.

Cause/effect can only take you so far.  When my car was seriously rear-ended, through no fault of my own, and then two weeks later the windshield shattered (randomly, again without fault), I could not find solace in analysis.  I could not interpret a lesson to follow to avoid such events in the future, nor could I have foreseen or altered my behavior to spare myself or my car.  I had to admit that separate entirely from control is chaos, being in the wrong place at the wrong time.

But I’ve noticed that I still hold tightly to my control.  As Vaclav Havel puts it, “Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.”  I cling to my logic, my analysis of consequence and prevention, believing it is the highest goal, my most concrete hope. 

The supreme irony, of course, is that even as my diet spurred on my cause/effect thinking and control-grappling, the biggest thing in my life without a cause is my disease itself.

Doctors, scientists and researchers don’t understand the origins of my disease. It is not infectious or contagious.  Not caused by a parasite, bacteria or virus.  Not hereditary.  Has no set pattern or prognosis.  No prevention exists.  Nor any set treatment method.  Although evidence is spotty, my disease is suspected to be an auto-immune failure.  Meaning, my body may be fighting itself unwittingly, due to a biological misunderstanding.

I’m glad that I have a tool to improve my condition, however feeble my method of controlling my diet may be.  Sometimes I feel like I’m lost in a pitch dark room, but holding oh-so-tightly to my compass.    

Sunday, August 21, 2011

The Myth of the Quick Fix

Three years ago I was diagnosed with a chronic illness.  "Chronic" is a word that denotes time and duration.  In the case of my conditionwhich is incurableI will remain sick for the rest of my natural life.  Remissions are possible, but uncommon.  Thankfully my illness is not terminal, and it may or may not be progressive, depending on who you ask.

Many aspects of my condition have remained unspoken up until this point.  And some will remain so.  Finally though, my voice will have a space.  This space.  To begin to whisper what I've always been too afraid to say.

The first year after being diagnosed, I lived in somewhat pleasant denial.  With only intermittent panic and 0% chance of acceptance.  "I will take this medicine/have this surgery/do this treatment, and be fixed," I told myself.  "My life will start again, once I push this out of the way."

The words "chronic" and "incurable" only began sinking in after a year of failed treatments and procedures that actually only worsened my symptoms.

It turns out my life can't "begin" only after this is fixed.  Because then it will never start.  I have to build my life around my aches and pains and flares and sorrow.  I've been piecing it together ever since, Humpty Dumpty style.

I used to hold tightly to the idea of the "quick fix."  That comfort is just a click away.  Actually though, life doesn't promise an instantaneous solution to every hitch in the road.  Back before electricity, the internet, microwaves, and sliced bread, I think less people depended on or expected a quick fix because less was available to them.

I'm glad that actual quick fixes do exist.  The only trouble with them is that I've started to expect them at every turn.  And, it's a lesson I want to spare you from learning on your own, that some things stay broken.  Just because.