If home is where the heart is, what about the hurt?
Would it follow me there, too?
Upon my return from university, I sat in my straight jacket of pain watching my parents take action.
My dad pulled out the plaid sofa bed in the basement so I could sleep upright by leaning on the back of the couch. He moved the TV close, pushed the shuffleboard out of the way.
My mom brought me warm towels to pack around my chest. When that didn’t ease the hurt, she wrapped her arms around me, trying to minimize the ripping pain that came with each breath.
They’d booked me an appointment for the following day with our family doctor, but I was without hope. After five doctors and 18 months, I already viewed the medical profession with doubt and disappointment.
But as I unspooled my story to our GP, he didn’t take his eyes off of me, or scrawl a prescription for sleeping pills. He put a stethoscope to my chest, probed by tender joints and then leaned close.
“I think you have systemic lupus,” he said.
I remember thinking, ‘Lupus, like a wolf? What an awful name for a disease.’
If he told me that was an autoimmune disease, I can’t remember. Or that my own cells were attacking my connective tissue? The facts of the disease are like a tattoo I got when I was drunk; I can’t quite remember how they got there.
The doctor explained I either had pericarditis or pleuritis; inflammation of the connective tissue surrounding the heart or inflammation of the lining around the lungs. Both cause intense pain upon breathing, laughing, crying—essentially, the stuff of life was hurting.
I told him I planned to start my first job as a daily newspaper reporter on the following Monday.
He never told me not to. Instead, he put me on 20 milligrams of prednisone (an apparent miracle drug), booked a chest x-ray and an appointment with a specialist. He also sent me for blood tests to look for telltale markers to confirm his tentative diagnosis.
Outside, he told my mother that I was seriously ill. And he was a bit surprised that I still wanted to start my summer internship. He couldn’t figure out why I wasn’t defeated by the diagnosis.
But here’s the thing. I was overcome with relief. I felt like running down the street cheering; if I could. Anyone who has gone for months or years of misdiagnosis is relieved to know it’s more than a mirage. Fear comes later.
And besides, I had no idea I was stuck with a serious chronic disease for the rest of my life. I left thinking that if I took the prescribed medication, I would get better.
I didn’t yet know to be afraid of the wolf that was stalking me.
I also felt I couldn’t turn my back on this opportunity. Only four other third-year journalism students in my cohort had landed a summer job at a daily newspaper. With this experience, I was pretty sure that the following year, upon graduation, I could win a summer internship at the Toronto Star. I needed this experience—and the clippings for my portfolio.
My parents didn’t know how to react to my determination to show up for work. They couldn’t forbid me to go. And if I was only comfortable standing, why not try working? That said, I couldn’t walk a block.
On Monday morning at 8 a.m., five days after my tentative diagnosis, I got into my mom’s Ford Pinto and she drove me 45 minutes to the Province offices in downtown Vancouver. As I shuffled into the building, trying not to pant, I wondered when the prednisone would kick in so I could shake this thing off. I also wondered how I would get through the first day of the start of my career.