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The most important aspect of life is to keep breathing. That may be glaringly obvious, but I hadn’t really thought about it until I couldn’t breathe.
When your breathing capacity starts to decline, each breath gets incrementally more shallow. You begin to panic. Yet, panic makes it worse. You’re told to stay calm, so you can keep breathing. But you can’t breathe, so is it possible to stay calm?
Last fall, at the age of 29, I spent the better part of four weeks as an inpatient at Toronto General Hospital with this task – trying to keep breathing on my own.
“How long will this last?" I anxiously asked my neurology resident when I had been transferred to the ICU. I had been transferred because my breathing capacity had diminished such that I needed frequent monitoring, in case I needed to be intubated – when a tube is inserted through the mouth into the airway to help you breathe.
I had lost the ability to swallow or talk, and communicated through text message with the doctors and my family. A feeding tube had to be inserted so I could take the medications I needed. I felt like I was choking on my own throat secretions; it was excruciating and I could not quell my anxiety, despite my family’s best efforts to calm me. The doctors said we had to wait for the new medications to kick in. Thus far, they had not.
I see myself as an independent, competent woman. But in this moment, I felt as if I had lost everything. I was in a constant state of panic, the adrenaline pumping through my veins. I couldn’t concentrate on anything other than the fear and confusion. I couldn’t sleep and I dreaded being alone, even momentarily.
I had been admitted to the hospital because I had a rare neuromuscular disorder called myasthenia gravis. You have probably never heard of it – neither had I, prior to diagnosis. I was diagnosed a few years ago, at 28, when I was having difficulty moving my face to chew or smile. I felt like I had run a marathon every day, despite just doing regular tasks around the house. By the time of my hospital admission one year later, I had descended into a myasthenic crisis. I slowly lost the ability to chew and swallow, and my breathing capacity steadily declined.
Before my myasthenia symptoms began, I was carefree and able-bodied. The extent of my interaction with our health-care system prior to my diagnosis was restricted to one incident when I managed to lodge a fishbone in my throat in my early 20s. A trip to urgent care and a really long pair of tweezers swiftly solved this problem.
Myasthenia gravis is an autoimmune disease. Women are significantly more likely than men to be diagnosed with autoimmune diseases and women are likely to be diagnosed in their child-rearing years. So I was incredibly typical, with my rare disease.
The disease, being highly treatable and not degenerative, felt manageable for my type-A self, when I was first diagnosed. I’d start taking some medications, regularly receive a blood product (IVIG) and continue on with my everyday life. But I didn’t know how bad it could get, having never had a crisis at that point. I didn’t know that losing the ability to swallow, a reduced breathing capacity and feeling as though you are choking on yourself, could put you on the brink of hysteria, let alone death, if untreated.
Thankfully, a few days into my stay in the ICU last year, the medications began to work. On my final day in the ICU, I was strong enough to get out of bed and I took a short walk around the hall. I read a poster in the hallway outside my room that said the goal of this particular ICU was to provide excellent health care to the sickest patients in Canada. This was equally distressing and motivating to me. I spent 28 years in near-perfect health. It seemed impossible to consider myself one of the sickest patients in Canada. I was suddenly adamant that I needed to get better, and fast. A week later I was discharged. A month later I was back at work, albeit on a part-time basis.
I now regularly have flashbacks to the crisis, knowing that it could happen again at any time by a spike in my immune system caused by the flu, or another respiratory infection.
Health is precarious, yet we don’t think about it that way when we are healthy, especially when we are young and healthy. Young people often see themselves as immune from the ailments that plague the elderly. My 27-year-old self would have told you that rare disorders and diseases only affect a select few. Now I know this is naïve. Good health can be ephemeral and just beyond reach.
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Knowing that being in good health is precarious sometimes manifests itself as gratitude. I am incredibly lucky for my quick diagnosis, our public health-care system and the care I received (and continue to receive).
Other times, it manifests itself as utter fear. Will today be the day I have a crisis? A mysasthenic crisis can occur over weeks, days or hours. I could be fine today and in an ICU tomorrow. This is a reality that I will live with for the rest of my life. Myasthenia gravis is a highly treatable but not (currently) curable illness.
I’m working on limiting the fear and anxiety that goes along with this truth, but it’s a journey. Some days the gratitude prevails over the fear, and other days the fear triumphs the gratitude.
My main goals now are to stay calm and keep breathing. It may seem simple, but if you can’t do that, what else matters?
Liz Witiuk Lives in Toronto.