I slowly walked the length of the mall, exaggerating the shallowness of my breath, as I attempted to inhale deeply. My body and I had been at odds for years, but this was different. Something felt wrong.
Google confirmed it. I typed out my symptoms as I always did, the diagnosis was as clear as the screen I had typed them on, slightly blurry. I had tuberculosis. The obscurity of catching tuberculosis, while living in a first world country, made me quite confident it was indeed what I had contracted. My life and my body do not often choose ordinary, and Google had never yet steered me wrong.
I worried I would be a headline in the local newspaper. Several years earlier, I read about a man who had died while using an outhouse, it seemed like an unfair thing, to publish the details of such a death, adding unnecessary insult to fatal injury. I worked at a butcher shop and volunteered in two kindergarten classes, while attending university. I was a public health risk; it would be unwise not to alert the community.
I remembered the commercials, listing tuberculosis as a common side effect, among many, of the drug I injected into my body twice a week. I had to have both a TB test and chest x-ray before it could be prescribed. The piles of paper work required to be approved for it almost persuaded me from pursuing it, but I needed it.
I was sixteen when I began to feel achy and was soon diagnosed with rheumatoid arthritis. Too old for it to be juvenile arthritis, but too young for this to be common, my body fought hard against the usual.
Upon meeting with a physician, I received a slightly less exciting, much more mediocre diagnosis, pneumonia. I took the antibiotics. After a week my breathing eased and I had nearly forgotten it all, when it happened again, the difficult breathing. As a precaution, I was sent for x-rays which revealed something unidentifiable inhabiting my lungs. A CT scan revealed something still undetermined lurking in my lungs, so a bronchoscopy was ordered.
A few days later, a panicky phone call revealed I had tuberculosis. My faith in Google was restored. I realized the seriousness of this communicable disease as three more calls, in quick succession, pleaded with me to surrender myself to the Centre for Disease Control.
I had to stop the medication I was taking, immediately. I was scared, this medication had made existing less painful, almost comfortable. It was the last step in a long line of medications I had tried, the only drug that could mask the pain I was in while protecting my body from itself.
***
My mom cried when I received my RA diagnosis. To be fair, she frequently cried at heart-warming Tim Hortons commercials too, but this was different. She cried more as she watched my body slowly deteriorate, the swelling caused my wrist bones to disappear, my thumb to no longer bend and my hands to become permanently disfigured. She was there when the doctor told me I was bleeding internally. It made sense. For months I had been taking an extra dose of my medication, the one that advised to not take it on an empty stomach. I took it on an empty stomach, in the middle of the night, because the pain that radiated every joint in my body made sleeping painful. I had to stop that medication, my body had become accustomed to it and it hurt.
My mom, preparing to attend nursing school, seemed a little too excited when I was prescribed my first injectable medication. I reluctantly indulged her, I wasn’t ready to do it myself. She prepared my first injection with gloved hands. The instructions, she had very carefully read, made the gloves sound very important. The medication entering my body was too toxic to come into contact with her skin. I’m not sure I gave that drug a fair chance, when I nervously reported it wasn’t working and moved onto the next one.
***
Perhaps I didn’t quite understand the serious implications of having tuberculosis. I announced my arrival at the Centre for Disease Control and took a seat in the waiting room. It was ten minutes before they realized just which patient I was. In that time I had had a lengthy conversation with a newly landed immigrant. I shook his hand as I welcomed him to Canada and we chatted about his first weeks here.
And then they called my name, passed me a mask, and asked me to continue waiting in the exact same area I was hoping to hide my now-masked face from. Suddenly, all conversation came to halt. People glanced uncomfortably in my direction, careful not to lock eyes with mine.
I was brought into a back room. They asked so many questions. They wanted to know where I had contracted it, but nothing I said met any of their expectations. Given a variety of requisitions, several back up masks and a paper bag filled with pills, the next six months were mapped out for me.
I was sent for x-rays, conveniently just down the street. I left the building and walked down the busy city street, feeling ridiculous, but I remained responsibly masked. Free from the confines of the Centre for Disease Control, I tried to pass myself off as one of those mostly-regular paranoid individuals, afraid of contracting some sort of airborne disease, rather than the infected and possibly contagious individual I most definitely was. Safely inside the door, my masked face bought me a precedent place in line.
I had been for many x-rays before. The uncomfortable positions, the lead lap belt, protecting my reproductive organs from the radiation the rest of my body was frequently exposed to, and the awkward small talk with the technician, were all too familiar. X-rays were how the doctors tracked the progress of the disease that was slowly eating away at my joints, my own body vindictively attacking itself and now my own lungs were turning on me.
Then blood work. Fully masked, they ushered me into a private room and asked another series of questions as they drew vial after vial of blood. Still stunned, the medical community wanted answers. While I explained about the medication I was taking, they wanted something further and tested for a gamut of conditions.
I was also familiar with blood work, and needles. A well-worn monthly requisition resided in my wallet and the medication I had been on for the last couple of years required that I give myself twice weekly injections. I always knew what to expect and yet somehow I always put it off until the very end of the day and always hovered a long while before bracing myself and burying the needle into my already bruised thigh.
I took a test home with me, to confirm whether I had the infectious type of tuberculosis, or the dormant non-infectious type. The test required me to collect saliva over three days, to submit the collection and to wait. My birthday was on day three.
My mom, now a nursing student working part-time, was torn on whether she should risk her health visiting me on my birthday. She decided that eating cake outdoors would be a small enough risk, that she was willing to expose herself and my two younger sisters to it. On my birthday, I answered the doorbell to three masked individuals. No unnecessary chances were to be taken. We sat outside while my sisters and I mockingly laughed at my mom, at the absurdity of attempting to wear a mask while eating birthday cake.
I ended my quarantine by delivering my sample to the lab. I later learned I was not infectious. I celebrated the good news with a sigh of relief and my fear of being an alarming headline subsided.
The good thing about non-infectious TB is that it is straightforward. Six months of several antibiotics and a B12 vitamin, no deviating.
When I was newly diagnosed with arthritis everyone thought they should weigh in, sharing opinion after opinion, treatment after treatment. I politely listened to a range of suggestions. It was exhausting, and yet I was hopeful something simple would work. I eventually learned to say “no thank you,” and later to say it bluntly. Living with chronic pain, I had become slightly irritable all the time and more easily irritated by useless suggestions from people not also suffering from crippling, bone altering conditions. Exhausted and in pain I needed something strong and something effective.
I had been to an arthritis support meeting, held in the hospital. I left despairingly. I had shaken hands with crippled hands and listened to their daily plights, this was likely the direction that my body was heading. Only a few years later I too, would have the bent hands indicative of rheumatoid arthritis, I would lose ninety percent range of motion in my wrists and I’d grow accustomed to the constant aches and pains. A body in constant pain with many restrictions would become my home and I would grow comfortable there, weirdly grateful it was not a harsher more formidable disease.
After weeks without taking my medication, I realized that my arthritis was in a partial sort of remission. The inflammation and pain were minimal without the drug that I had relied on for years. The TB was eventually shelved and added to the growing stack of anomalies.
And now, 10 years later, I recount my visit to see the rheumatologist, back to my mom, a recent graduate and registered nurse. At my first check up in years, I asked him, “When do you think it will come back?” He replied, “If I was a betting man, you’d already have it back.” And so I wait, every day evaluating my body, checking in with my knees, wrists and feet, enjoying each day where the pain is minimal. This feels like borrowed time and for once I’m happy with by body’s choice to be unique.
