Oscillating flower petals. Dancing dots. A kaleidoscopic galaxy bursting in my field of vision. This was all new, and coincided with my hospitalization for a kidney biopsy.
There were concerns I might be having lupus-related mini-stroke so an MRI was ordered to look for a brain bleed. While waiting, the doctors let me out of the hospital for the weekend.
As an antidote to illness, we went house hunting.
While I needed fistfuls of drugs to beat back the inflammation gnawing on my kidneys I also needed somewhere better to live. I needed to not live above a drug dealer and his prostitute. I needed not to be disturbed by their frenetic negotiations over sex, money, drugs. I needed a safe cocoon where I could sleep through the night.
My better health seemed to depend on it.
When you have an illness that makes no sense, it becomes a fool’s pastime to look for connections and causes behind the descent to disease. At one time or another, I’ve sworn off gluten, corn, eggs, dairy, sunlight, stress, soy, red meat, all meat — and had my mercury fillings removed, to name a few fanciful attempts to feel better.
Back then, in hospital, I was extremely irritated to learn from a kidney biopsy that I had the most serious type of lupus nephritis; class IV, diffuse and proliferative. What was the cause? Rampant inflammation couldn’t have done that kind of damage overnight and must have been simmering for a while, right?
My internal detective kicked into high gear in the middle of the night. On my mind:
- Maybe my kidneys had been inflamed at a low level since my lupus diagnosis in university, and it had taken this long for the inflammation to impair my kidney function. Maybe years ago when various rheumatologists kept measuring extremely high levels of anti-double-stranded DNA antibodies, which is suggestive of lupus nephritis, they should have biopsied my kidneys and clobbered me with powerful immunosuppressants. Why hadn’t they acted sooner, instead of waiting until my kidneys were in jeopardy?
- Did my kidney inflammation have something to do with the odd burn on my face that I got most days after a few hours in the Ottawa Citizen newsroom, where, for the record, I’d been controlling my stress level pretty well? There is now solid evidence that UV rays from improperly covered fluorescent lights and poor quality computer screens can flare lupus nephritis, but back then it was only a hunch.
- Was lack of sleep exacerbating my immune dysfunction? Mostly because of prednisone and more recently because of the caterwauling of the drug dealer and his prostitute girlfriend, I endured fractured shuteye.
About last night
Our two-bedroom rental apartment was in a Victorian home in Ottawa’s Glebe neighbourhood, inhabited by wealthy white hairs, well-to-do civil servants and cohabitating students. A commercial pilot and his nurse wife lived above us. A greasy haired 30-something punk in denim and his scrawny girlfriend Tammy lived in the basement. By listening in on their trashy arguments, we figured out he was a pimp, she a prostitute, with a dollop of drug dealing on the side. They must have thought no one would suspect their criminality amid the upwardly mobile.
One afternoon, I heard screaming outside and looked out to watch Tammy walking on her hands, while shirtless, across the front lawn. Many mornings, I awoke around 5.30 a.m. to the sounds of her clomping down the external staircase in her chunky platforms after a night of turning tricks. He usually set on her immediately.
“How much you make?”
“Leave me alone. I’m tired.”
“Hand it over.”
Sometimes, they sniped, other times, scuffled. A smack. An inhuman howl. Maybe laughter. He’d crank up the stereo. Heavy metal blasted through our vintage floorboards.
Not long before I was hospitalized, I heard a jackhammering down the stairs and pounding on the basement door. It was after midnight.
A blunt, stupid voice: “Hey bitch, where is he?”
“I don’t know who you mean.”
“Your old man owes me a little something. I think I’ll take a look around.”
A drawer fell and cutlery scattered. As usual, she screamed.
“Ha! Got it!”
“He’ll kill you. Get out. GET OUT.”
She sobbed herself to sleep while I lay awake worrying about what would happen when the pimp returned home to learn he’d been robbed. Just after 3 a.m., she started howling, an unfortunate alarm clock.
So we went house hunting.
In the dirty grey middle of winter, and in an inflated market, we visited open houses. I had a hospital bracelet on my wrist, tape on the back of my hand where an IV had been inserted. I was weak from the biopsy and the unchecked inflammation. It felt like oxygen wasn’t getting to my brain.
I wanted to be as far away as possible from noise-making humans so we went south, along the Rideau River to look at an over-priced country estate. I weighed whether noise or a 45-minute commute bothered me more. They both seemed unpleasant.
Back in the city, we walked into an open house for a three-story modern infill. I faltered and fell against the foyer wall. The jagged visual dance began again while I slumped in a dining room chair. House hunters in wet winter boots filed passed me. We decided I should go back to the hospital immediately to await the MRI.
Zig then zag
I’d already had a CT Scan of my head. No hemorrhage was found. The MRI might reveal something else. In the meantime, to protect my kidneys from runaway inflammation, I’d been given IV corticosteroids for three days and then 60 mg daily of prednisone to follow. I was also prescribed the immune-suppressant and former cancer drug, Imuran (azathioprine), which could cause lymphoma.
If all went according to plan, these drugs would knock me into remission and save my kidneys. I was also prescribed Elavil (amitriptyline) for chronic pain and insomnia. It was also an anti-depressant. I wasn’t depressed but in shock. Soon, however, I’d be manic from the high-dose prednisone.
Over coming months, I’d learn the consequences, good and bad, of each drug.
Meanwhile, the visitors kept coming. It was impossible to explain to friends all my nagging worries, especially when I’d so rarely spoken about my illness. So I tried to enjoy their company.
Three girlfriends from work were in my room when the orderly finally arrived to take me for the MRI. He lifted me onto a rolling hospital cot to take me down to the bowels of the hospital.
My illness must have seemed nonsensical, maybe impossible. A photo from that day shows me looking clear-eyed, healthy, happy. The biopsy results, while horrible, were proof of my hidden illness.
The MRI was exactly as I’d been advised — claustrophobic, panic-inducing, over quickly. When the orderly still hadn’t come to retrieve me an hour after the test was done, I decided to find my way back to my room. I still thought I could find dignity in being feisty.
Reluctantly, the technician let me go. I was surprised how off balance I was as I stumbled into the labyrinth, where all the hallways looked the same and I couldn’t find an elevator.
Weaving, I clung to the railing along the wall, and then a hole, like a new galaxy, once again opened up in my field of vision. I didn’t topple over but slid down the wall while holding to the railing. I’d eventually learn that being spunky is overrated.