Chasing The Dragon

Chronic illness and the reality of continuous change

Photo by 360floralflaves on Unsplash

As a child, I was frequently sick, and always able to get in to see my family doctor within the same day. My mom carted me downtown and had our matronly practitioner look me over and give us tips on how to manage my health holistically. She also gave us a great recipe for perogies, but most importantly: she was thorough. Referrals were fast; tests happened across town the same day they were ordered. Diagnoses were doled out (migraines, IBS) along with plenty of practical advice on how to manage these issues (dark rooms, dietary changes). Best of all, though, was the fact that the door was always open. Our family could count on the doctor’s office, with its forward-thinking “scent-free,” “inclusive space” and “no outdoor shoes” policies, as a safe haven in the shitstorm of an impoverished life.

Your head was pounding, you couldn’t breathe, or you were delirious as fuck. All you knew is that you felt like you were going to die. This thing was trying to take you down, and it was scary.

Guess what? That’s what every day can feel like when you’re chronically ill.

There’s a good reason that I haven’t sought much help in my quest to cure my chronic illness(es) as an adult. Experiencing illness daily is harrowing enough; navigating the health care system is a quantifiable nightmare.

Things have only gotten more intense, system-wise, in the last decade. I left a province that had a still fairly decent workflow in place: securing your own doctor or nurse practitioner only took a few years. Referrals and requisitions, weeks to months. We signed up with a rural local practice without any wait at all, in fact, and had a group of nurses we could turn to in the event that we needed testing (biopsy, MRI) or a routine checkup for our young child.

I moved to a province with an arguably even more over-loaded system, in which it’s looking like it might be standard to wait 7+ years for a family practitioner. It is a place in which, if you are a parent, your only option in the event that your child falls ill - or even needs routine care - is to take them to the local ER. It is a province in which “walk-in” clinics, either require driving for hours, lining up for hours, or making appointments. You read that correctly. The only way to get seen by a doctor in a walk-in clinic is to make an appointment. In order to acquire these “walk-in” appointments, you must phone into what is basically a lottery system akin to a call-in radio contest, hoping to be one of the dozens of people that makes it through to a receptionist and gets an appointment THAT WEEK. Yes, you have to call on a Monday to obtain an appointment for the week ahead, and if you don’t get through, you are shit out of luck until next week! To the ER with ye, where you are free to “walk in” if you have an urgent matter or the stamina to sit there for 12 hours to be seen for a routine health thing.

It’s truly enough to drive even the calmest person mad.

I thought things were rough a couple of decades ago, when it was mildly challenging to find a family doctor or wait an hour to be seen by a discourteous urgent care doctor. My response was to opt out of the mainstream medical system entirely; I just stopped going, or even considering it a possibility unless I got into a grave accident or worse. I just gave up on it, and started the never-ending process of healing myself, by myself.

That process has seen its ups and downs, but with my level of commitment to learning and persistence about finding out the whys and hows of various ailments, is going well.

Most of the time, it’s really rewarding to witness my own shifts and changes working. Sometimes, I crave some sort of outside counsel. Occasionally I want to chip away at the iceberg-like process of building a community of carers to get to know me in the hopes that some of them (one of them?) will be able to offer me small bits of insight, reassurance, and treatment as I get older.

I mean, who doesn’t want life to feel manageable?

I briefly paid for a licensed Nurse Practitioner to learn my health history and send me for some routine test, only to realize that, without health benefits, the cost of seeing a subscription-based primary care professional for routine visits encroached on $150/month. Surprise! My family cannot afford such a luxury. Privatized health care feels all-too corporate American for this witchy, North-of-the-40th parallel gal, anyway.

After you’ve suffered daily illness for decades, it’s surprisingly easy to change your entire diet and lifestyle to one that better supports your ability to have a symptom-free day. (Easier than it would be for somebody who feels like they’re healthy, but has been counseled to make those changes, I mean.) After decades of excruciating endometriosis, and more recently, a seven-year bout with something resembling POTS or a seizure disorder, it’s less agonizing to study Eastern medicine for thousands of hours than to clamour for years searching for mainstream medical diagnoses.

It’s a hell of a lot less painful to quit drinking, fast at night and go to bed earlier than to seek government-sanctioned healthcare. What I do with my body is within my control, and making hopeful changes worth a shot.

Of course, one can do both and chase the evasive healthcare dragon whilst simultaneously managing one’s own health. I simply have never had the energy to do both. It’s been an either-or decision for the most part.

Recently, fingers crossed, it’s begun to pay off. Thankfully, the severity of symptoms I’ve been experiencing has decreased dramatically over the last year.

Truthfully, I have no idea what’s wrong with me in a textbook medical sense. I’ve never gotten in deeply enough with any health practitioner to find out. I do realize that I’m in for some surprises when I finally do; I’m sure that whatever is actually going on inside me won’t be entirely what I expected.

That’s ok. The only thing that we can truly count on in life that it is impermanent. Everything is always changing, and our bodies will always give up eventually. We’re all dying: it’s just a matter of when.

The concept of impermanence can be deeply unsettling - even terrifying. Particularly when you are in the throes of a serious illness or bodily event, death can feel downright imminent. We’ve all experienced something like this; maybe for you it was the flu, or Covid, or an accident. Your head was pounding, you couldn’t breathe, or you were delirious as fuck. All you knew was that you felt like you were going to die. This thing was trying to take you down, and it was scary.

Guess what? That’s what every day can feel like when you’re chronically ill. Every day for years and years, you basically have a terrible, confounding case of the eternal flu.

Once you’ve stared down the barrel of un-wellness long enough, you can either succumb to its overbearing power or refuse to submit. To be realistic - to accept that life is fleeting and ever-changing; that you might die tomorrow or miraculously find yourself healed - is liberating. That’s been my comfort zone for the last couple of years. It’s always daunting, especially as a parent to a young child. I’m so grateful to be feeling better than I have in a decade, but also trying to stay ready for the other shoe to drop.

Tomorrow might be the best day of my life!

Today might be my last.

What’s more important to me: to be close to my loved ones and to make art? To be at peace? Or to chase down professionals in the hopes that they might be able to elongate my lifespan with their gate-kept diagnoses, medicines and machinery?

I ask myself these questions every day, and frankly, it helps. Every day offers a new direction, the opportunity to make different decisions, and a new chance for hope.

Tomorrow might be the best day of your life.

You’d better believe it.