Reflections

I laid charging in bed. Body still, eyes closed. Saving my energy for the flight. 

The home nurse was hanging IV lines when she heard my prof ask her question. “What does healthcare mean to you?” 

My eyes peeked open and met hers. Her eyebrows rose in irony.

(Was it irony? Alanis has forever ruined my confidence.)

A burst of air escaped my lips. If I had more energy, it would have been a chortle. 

“Really?” She chuckled. “You are being asked that while a home care nurse is hanging meds?”

We’ve formed an easy banter over the last six months. Hired on some ring of the healthcare chain, she comes to my house on Tuesdays and drips hundreds of thousands of dollars of medication into my veins.

A magic potion I am privileged to receive.

A drug new to Canada, new to the disease. Even though it has become a regular part of my life (on my dramatic days I compare it to dialysis), I still have a long way to go, and I don’t know if I will get there.

On bad days, the disease - Myasthenia Gravis - locks me in my body. My mind is working, but the messages between the nerves and the muscles are not getting through. Or seeping through slowly. Too slowly for conventional life. 

On good days, I notice how soft my sheets are. I notice how the sun is beaming or the clouds are clouding. I wonder at my children, all arms and legs and stories and feelings, at 12, 12 and 14, such wonderful humans. I stretch out wings for stories and laughter and cuddles; they gather around me like chicks.

How lucky, I notice, to have a schedule free from life’s hectic cultural norms… time to be present.

The last two and a half years have been a lesson in being present. 

Present while living underwater

Having cement in my blood

Walking through molasses 

((and blinking and breathing and swallowing and talking and everything else, too))

Two years of trying new meds, new doctors, new infusions, dealing with new side effects. Watching treatment after “silver bullet treatment”, get heaped onto the pile of “this isn’t working anymore.”

But in the last weeks, months even, the trend shifted. The fresh antidote - with a new mechanism of action - moved me from lying in my bed, to sitting, to booking a plane ticket to New Brunswick; leaving in hours. 

The nurse pulled the needle from my arm. “Sorry, dear - this one is gonna bruise.”

…

I bolstered my energy and booked the Uber to the airport. Tamping down nerves, I considered all the unknowns that lay between me and my best friend (one of my very, very best friends)

This is recent - having energy reserves to get out of the house.

Anxiety bloomed. My body was tired. I wasn’t bringing my wheelchair. Could I hold my body up in the cab, in the airplane, and then still have the energy to walk to baggage?

I reminded myself—just baby steps. Contrary to what my mind was suggesting to the rest of my body, no bear was chasing me. It’s just a trip to the airport. A saunter here, a brief interaction there… I could stop. I could lean. I could roll if I needed to. My boarding pass said so.

Baby steps and rest. Baby steps and rest.

…

Dirty looks from a man in line broke the atmosphere.

I had looked so capable, weaving to the front of the boarding line. I worked hard to keep my invisible illness invisible. I can’t get upset when people don’t see it. 

My low volume betraying a rare moment of shyness, I asked the young man working the desk, “Did I miss priority boarding? I just need a little extra time.”

His expression melted quickly, confusion to kindness, as he scanned my pass.

I heard the huff behind me. I knew where it came from. He did it again, louder, so I could be sure. So accommodating.

I spotted the small plane I’d be boarding. The staircase pushed against the door, looming at me like Everest. The crowd was close behind.  

I breathed. 

Baby steps and rest. 

…

Settled against the aisle, my invisible illness tucked inside it’s invisibility cloak, I people-watched as the plane filled.

This… is how people move… I felt like an alien from another planet.

Or like an amnesiac immersing themselves in memories to spark old synapses. 

My extroverted self gets buoyed from quick moments of meaningful interaction… eye contact… a smile… gestures of kindness… these little connections to remind each other we are human. So novel.

I flew off the plane and into her arms. Elevated by adrenaline and a rare dose of dopamine, the warmth of a 30-year friendship squeezed tightly between us and pushed its way into our cells while we embraced.

Safety. Home. Warmth. 

…

We drank strong coffee and cried hot tears of vulnerability. 

Our days were punctuated by moments on the couch and in my guest bed. Little dots and dashes of meaningful encounters. Friendship and love and tears and rest and understanding. 

Even though the group chats linked our weeks and months together…there was a reality she couldn’t have grasped. 

Not until she saw it day after day, hour after hour. My arm stopped working while I was scooping porridge… my hand struggled to bring a glass to my mouth…

Her face froze. “What the hell, Erica…” 

I soaked it in. 

Seen. 

I’d been seen. Like vitamin D on a warm winter day. 

These brief moments of light that make the dark seasons bearable.

Not everyone gets to be seen. 

…

She told me about a friend who has been on gynaecological mystery ride. She laid out the facts and studied my face for answers. As if I were about to drop insight on the inner workings of her body. 

My friends anointed me the ‘Expert in All Things Medical’ once I finished my nursing diploma. 

I spent years on the patient side of the curtain, and when the clouds broke and my illness became manageable, I chipped away at nursing school, graduated and worked for ten months, before the clouds covered again. 

Their trust in me stayed buoyed even when my energy levels dropped and took me off the nursing floor.

So, I use my powers for good. And field questions about kid’s fevers, and translate medical jargon from biopsy results, and celebrate with them when someone has jumped the right hoops to be seen by the right medical professionals, particularly within the current state of our Canadian healthcare system.  

She wondered about the treatment her friend had been receiving. She didn’t feel the medical professionals believed her.

She wondered if a male counterpart would encounter the same barriers.

I wondered too. 

On the rare occasions that my then-husband would join me for medical, doctor, specialists’ appointments, I could see it. I could feel it. The air changed. 

(But how do I explain how doctors listened differently when he spoke? How could I qualify their posture shift when he was in the room? That their heads would tilt differently. Questions weren’t pandering - if they did question him at all… They believed his answers. Just… believed… and not questioned…)

((What is… that… like???))

I was in nursing school in 2019 when our textbooks (rife with images of lean, white, non-disabled men) confirmed my lived experience (and further cemented the belief that white men are the ‘default’ human). It broke down the numbers of how many more times doctors interrupted female patients than their male counterparts. 

(It is a hesitant celebration to find validation in statistics. When numbers speak louder than women.)

So many numbers.

I swallowed thoughts of my dear friend in Ottawa, round like the gibbous moon. My recent conversation with her had wandered from her nursery decor and birth preferences to her fears of the horrifying stats of the maternal-fetal death rate for women of colour in the States. She is a woman of colour. This is the accepted standard. This is real-time.

I thought of her friend, still seeking a diagnosis. 

It is a privilege that my disease has a name. It comes with a test. Something quantifiable.

Not everyone has antibodies that prove an invisible illness. 

Not everyone gets the validity that comes from something being named.

…

Before I knew it, we were celebrating her baby’s third birthday in the park, and I would soon get back on a plane.

Small clusters of the next generation, red-faced from fun, played hard on a ‘rare’, warm November day.

“Surely you have an idea where these university courses are taking you, Erica?” one dad asked. 

I weighed my options and bounced my eyes between him and his partner while he bounced the baby he wore on his chest.

“I don’t know…” my eyes caught clouds in the sky. Grateful for something to look at while I awkwardly wondered how much of myself to unfold at a child’s birthday party. My eyes landed on warm faces.

“To be honest,” I said, “I’ve had a health setback in the last few years. But I started a new medication in the spring that is slowly getting me back on my feet.”

I looked at my sneakers in the grass. Standing. Still a novelty. 

Tears sprang before I could pull them back. “It’s kind of a miracle that I am outside here, with you guys, actually.”

I didn’t tell them I wasn’t sure how long this medication would remain available to me. Or how it brushes against my immortality when I wonder if it might one day get heaped with the others onto the discard pile. 

I explained that there were many people still back there, people who also dropped through the cracks in all the systems- but without the same privileges I have had. (Like the privilege of age-old friendships to help keep their soul alive through the darkest nights)

We talked about how the systems are broken - and that things need to change.

“So, health policy?” He wondered, “Something like that, you think?”

I thought of the people too weak in bed to advocate for themselves. Too busy keeping their eyes open and their bodies afloat… Each movement such a careful energy exchange… to spend any of it on advocating for justice.

“…maybe—” I hesitated. I don’t know if I can wait that long. I don’t know that I can wait until I pay enough money and spend enough energy in the current academic system (with all the layers of bureaucracy and politics), to get letters behind my name that brand me as valid and hireable.

Maybe I park my wheelchair on Parliament Hill, and get real creative with sign making… Maybe I'll become a thorn in the side of all the systems (which one? All of them) and use my voice to fight for justice…Maybe fight for Universal Basic Income in Canada…

Movement towards the gazebo interrupted my thoughts. “Oh—” I pointed. “Cake time!”

A small berm separated us from the gazebo. Parents snagged children in giggles, still chasing bubbles. They thought nothing of the short incline. 

I sauntered to the path. Its ground was a little smoother, a little easier for me. It was the long way around, but I would get there, eventually. 

Baby steps and rest.