Test results change lives. They can define and redefine a person in a flash. Remember how you felt when you first passed the test for your driver’s license? In a matter of minutes you went from kid passenger to Grown Up Driver. How about the SAT or the GRE or the MCAT? Those scores sealed your academic fate: told you and whoever else accessed them what tier school you could or could not attend and how many degrees you could pursue. One minute you’re dreaming of climbing the steep hills of Ithaca in a Cornell red jacket and the next you’re standing in line with a mountain of textbooks, sporting the muddy colors of Whatsamatta U.
I still remember the moment the dermatologist came into the exam room to tell me the skin biopsies came back with a diagnosis of dermatitis herpetiformis. My face lost its color as I thought this meant I’d acquired some horrific contagious disease that would render me dateless for the rest of my life. Then she handed me the pathology report. It said DH is related to celiac disease and I nearly fainted with relief.
And then the enormity of that diagnosis hit me. I still might end up dateless for the rest of my life but for very different reasons. A few weeks later, the gastroenterologist confirmed the celiac disease diagnosis and I suddenly had an explanation for years of bizarre symptoms that often rendered me incapable of getting out of bed except to slather more cortisone cream on my bumpy, pruritic knees.
Life changed again last week when I heard the good news that my gut was too healed from strictly following the gluten free diet for five years to advance in the clinical research trial of a drug that held the promise of healing intestinal damage from celiac disease.
I’ve healed. Healed! Me. Healed. No, not cured, but healed.
This sounds strange to me. I’m used to having more diagnoses and more damage and more symptoms, not less. I’m used to being somewhat sickly on a regular basis, with flares of being downright incapacitated. I’m used to having weird medical situations the average bear doesn’t experience.
Nine years ago, what started as a mild ankle sprain sustained on the job turned into an agonizingly painful situation requiring surgery to reattach two tendons to the bones they were supposed to be connecting and reshaping the ankle bone which was chipped. After twelve weeks on crutches sporting three different casts I began eight months of physical therapy that never resolved the pain. Sometime around Christmas, the State Board of Workers Compensation mailed me a check with a note that said, in essence, “Sorry you are permanently partially disabled.”
A similarly “mild” case of tennis elbow (I don’t play tennis) two years ago turned into surgery to cut out a badly scarred portion of the tendon and reattach the remaining tendon to the elbow. More months of physical therapy followed but because this wasn’t a job-related injury, Workers Comp didn’t really care if I was or wasn’t partially disabled. It took two years for the pain to subside but today my arm feels pretty darned good, except in the winter when it’s cold.
In fact, when the cold weather comes, or a cold hits me, my elbow and ankle both ache. Thank God for Salonpas patches. Those little medicated things soothe the pain so effectively I don’t mind smelling like a koala (it’s the menthol, not the salicylate).
That’s the kind of freaky health history I have: nearly died at birth (cord wrapped around my neck), eight surgeries, three autoimmune disorders, frequent respiratory infections, chronic allergies, violent crime survivor, and accident prone. It’ll take some time to adapt to this new healed gut me.
It’s also taking time to adjust to not being a part of the research trial. I got so accustomed to calling the symptom hotline every night to report my symptoms, I now feel like something’s amiss because I don’t have to punch numbers for four minutes before turning out the light. I don’t have to decide if my tiredness is mild, moderate, severe, or very severe.
The upside of not keeping track of my symptoms is, well, not keeping track of my symptoms. I don’t have to be hyper aware of every little thing happening in my body. I can move through the day without worrying if that’s actual bloating, or just the effect of too much sparkling water. I don’t have to be so focused on my state of being that I can’t enjoy the moments that stack on top of each other to form a day of living.
I can think of someone other than myself, which may be the greatest relief of all. I get pretty darned tired of me. You are much more interesting. So how’s your tiredness? What kind of pain are you having? What do you do to make the most of life? How can I help?