Image designed by Kraven Cache. All rights belong to artist Kraven Cache. Permission to use this illustration is granted January 8, 2020.
From the beginning of Paul’s dance with doctors, I have sat next to him and squeezed his hand through the pronouncement of hemochromatosis. The first doctor said his high iron level, if left untreated, would make him sicker than he already felt, possibly kill him. The laundry list of complications started with cirrhosis and diabetes, moved to cancer, and ended with heart failure.
Heart failure like his mother at age fifty-four? Bingo.
Until recently, she explained, the test for serum ferritin, the protein that stores iron, was not routinely done. Worse, the complaints of fatigue and joint pain were often misdiagnosed.
Listening became a struggle under the florescent office lights. I thought about how life can change in a blink. It was our turn.
“Is there any medication to get rid of the excess iron?” Paul asked.
“No, only weekly bloodletting for the next six to nine months—”
“Wait,” I interrupted, “bloodletting as in removing blood?” She nodded and explained the phlebotomy procedure. Visions of a medieval barber with a sharp knife and collecting bowl were close to her description: take one 16-gauge needle, pierce into crook of arm, and withdraw 500-mls of crimson. Every week, a Sweeney Todd donation.
When you give blood, you are advised to wait a couple of months between donations. Paul would undergo two phlebotomies in six days.
Because his iron levels were dangerously high, the doctor ordered another round of tests. We returned to the hospital where I sat in the lab’s waiting room. The murmur of Paul’s voice was replaced with a woman’s call for help. I jumped up and followed a second nurse through the lab door. Paul was propped on a chair, motionless, his eyelids shut and head tilted to the side. My only question: “Did he fall and hit his head?”
“No,” the nurse said as she draped a wet cloth across his forehead and pressed another with ice cubes on the back of his neck. His usual ruddy skin was translucent.
She pointed to perspiration that beaded his knuckles. I wiped them dry with my sleeve. After several decades together, I had never seen him so vulnerable.
When I guide myself onto the rink, hand-over-hand along the boards, I balance on razor blades, not ice skates. Paul sits behind Plexiglas and videos my inaugural skate.
Skate to center ice, I see his mouth move as I totter past, my head fighting the urge to tip backwards. He waves his free hand, wanting me to give him something video-worthy.
No way, I mouth back. Instead, I reach for a nearby skate aid that resembles a walker, a gizmo used by many of the children. Quickly, I soar between pockets of people, even if my “training wheels” are responsible for this renewed confidence. I am careful to avoid small bodies that race past, practiced and fearless during Family Skate afternoon at our local arena.
A toddler who grips his own skate aid slides near and extends his arm. Braden is stenciled in black across the front of his white helmet. He’s trying to help me. Then I sigh and accept his mitten-covered hand. With locked hands, Braden and I make a slow loop around the rink, his father following behind.
I rue the iron that overloads his system, the “Celtic Curse” genes bequeathed by ancestors on distant battlefields of lavender darkened by bloodshed, bodies hoarding iron to live through another crusade. Today Paul rides into battle with a Honda Civic, not a trusty steed. His arsenal consists of leathers and a welding stinger, not a shield and sword.
He had to sign forms that allow our health care providers to release test results and instructions to me. Otherwise, in this movement of perceived privacy, people on the other end of the phone would not even let me set up his appointments.
He could take care of these details himself, but I want to be supportive. The seeds of my advocacy were planted through more bouts of unconsciousness and a weekly series of painful needles, needles that poke and mine for iron-rich treasure. Needles that cannot always withdraw enough blood but leave muddy bruises, sore for days.
I have become a researcher, studying labels to avoid buying iron-enriched products. This is no easy task as every staple I reach for is heavily fortified, from cereal to bread and pasta. Sayonara to the red meat he loves, and ciao to shellfish. I read bulletin boards written by our new community of iron-overload victims.
“How do you feel?” I ask after each hospital session.
“My chest feels caved in and my back has a weird ache. It’s hard to explain.” He no longer works on phlebotomy days. After the hospital, he eyes our couch like a welcoming pair of arms.
In the dark of night I weep into my pillow, careful not to wake Paul. I worry about him, his future health and freedoms uncertain. Other nights I feel sorry for myself, forced to shelve our plans for a cross-border desert getaway. In place of travel, we brace ourselves for a grey-white winter of Alberta cold and snow. “Until we get this sorted out,” I say aloud, my new mantra. After lowering his serum ferritin level, Paul should need less frequent “maintenance” sessions and lab work.
More selfish thoughts circle, buzzards: no more leisurely evenings dreaming together over a bottle of red wine, since the disorder makes him susceptible to cirrhosis.
Paul is more stoic. “Whadya gonna do,” he shrugs. “At least I won’t die like my mom.”
I am still making slow loops around the ice rink. Paul waves me over; we have to leave for the hospital before the lab closes. He needs blood work done again, something about a significant drop in his hemoglobin.
“Dammit, I’m just starting to get the hang of this.”
“So stay, have fun. I’ll pick you up later.”
I face him through the glass. “Are you sure?” He nods. This will be the first time he will go on his own, whether for blood work, bloodletting, specialists’ appointments, or ultrasounds and FibroScans.
I have imagined him going solo, in the event of scheduling conflicts. Cool compresses and warm blankets will envelop his fears—of needles, blood, hospitals—and a familiar face will greet him, call out, “I’m ready for you, my blood brother.” Tall and strong, he will walk toward that voice, that needle presented in open palms, an offering.
He leaves me on the ice, waving, and I feel unexpectedly happy, not only that I am skating, sort of, but that he is confident to go without me. I watch him walk through the arena door, sloughing off his own training wheels.
SHANNON KERNAGHAN’s work appears in books, magazines, and journals. For years she was writer/researcher at a communications firm in Alberta. As well, she wrote a weekly newspaper column and continues to tell her stories. Her appreciation for the medical system has increased since her partner was diagnosed with a blood condition—together, they’ve met dedicated health specialists and countless kind hearts who make this journey less daunting.