On free coffee, free time, and the past, present and future

Dear world,

I’m sitting in a McDonald’s just a few metres from home, watching rain pelt the pavement of a sorry excuse for a patio and sodden construction workers pace back and forth. Just beyond the commotion, the sea is the same cloudy shade of grey as the sky.

I’m waiting for my small cup of free coffee to cool and patting myself on the back for getting dressed before noon.

From the outside, it might sound like I’m living the life. Lazy mornings and hours to spend curled up reading, surfing Netflix, catching up on the Oscar nominees or scrolling through Facebook and reading whichever quirky headline catches my eye (Did you know Emma Watson is refusing to take selfies with some of her fans? Or that the a sizeable chunk of Billboard-topping hits are written by bald Norwegian men?) Plus, I’m living rent-free and get to go to Tokyo in a few weeks. Why would I ever want to go back to work?

But, to be honest, staying home “sick” every day is really difficult. Even though this process is called “recovery,” it’s both mentally and emotionally draining. It takes effort, even if that isn’t always apparent on the surface.

To start with, there’s the practical part. There are the basic adult tasks of having to do laundry, figure out what to eat for breakfast, lunch and dinner, remembering to pay my Visa bill each month and trying to decode my T4’s (even though my wonderful father is the family tax-whiz and willing to help out).

Being sick also involves extra paperwork. There are letters from the government and forms from my insurance company. There are applications to fill out and phone calls to make. There are endless loops of the same forgettable song while you wait on hold as they transfer you from one department to another. Sometimes, as was the case this Monday, there are curt employees who make you burst out in tears as soon as you hang up the phone.

There are appointments. There are treks to see doctors, rain or shine, with my headphones and iPhone my only sources of company (my father often gives me rides and I’m thankful for that). There are invasive questions, picking and prodding my mind and body. There are tests to schedule and keep track of, and rules for each procedure (fast for 12 hours, no jewellery, have clean, dry hair). There are prescriptions to drop off and pick up and adjust.

(A note: As confusing or tedious as all the paperwork, phone calls and appointments can be, I’m grateful for our healthcare system and for my insurance, which have funded my treatment and recovery. I’m also super grateful to the healthcare professionals who have taken care of me, and to my amazing work place, which has been more than supportive this whole time.)

It is stressful, keeping everything in check. In some ways, however, these medical necessities are also a welcome source of busyness. They seems to justify my long absence from work, all those lost hours of productivity or socializing.

Because the other hard part of this whole experience are the hours of solitude, the long stretches when it feels like I’m not really doing anything at all. The times when I feel like I should be running or writing or saving the world. The times when I search for an answer when family or friends or doctors ask me what I’m up to, how I’ve spent my day, when I’m planning to be back at work full time, or if I’ve been outside yet.

I think I’m getting better at being alone and filling the empty spaces in my days, but I often still feel heavy with guilt. One of my yoga teachers says all of our problems stem from thinking about the past and thinking about the future, and too often I have time to dwell on both.

As much as I know I’m not at fault (nobody chooses to have their own body attack their brain), I can’t help but run over scenarios in my head.

When I think about this past summer, I’m often filled with regret. If only I’d had the strength to hold my tongue in that one moment. If only I’d had the restraint to wait until I was alone to let my emotions spill over. If only I hadn’t attacked this person in that way, then maybe it would be easier now to pretend as if the whole thing hadn’t happened, or that it wasn’t so serious.

For months, I was possessed. I look back on photos of that time and I can see how vacant my eyes look, how weak my imitation of a smile is. It’s as if my mind wandered out of my skull and decided to take an extended vacation in who-knows-where. And without my better judgment, what was left of me rebelled.

With nobody at the steering wheel, I resorted to basic animal instinct, cowering in a corner and lashing out in self defense. I fought or flew, hurled insults or crawled inside myself and went mute. And, even though doctors and loved ones and even I know that my mind was absent at the time, I can’t help but want to apologize for what my feet and hands and mouth did while my consciousness was away.  Somewhere, deep down, I still feel like it was my fault.

Meanwhile, when I think about my present state and the near future, I feel a pressure to be doing so much more so much quicker, to make amends and move on. My mind is home again and I feel like it should be working more smoothly, like my thoughts should be more seamless, my synapses less sluggish.

In the age of social media, this feeling is especially acute. I know that much of what I see is a facade, but I can’t help but want to keep up with my fast-paced friends. I want to eat that Instagram-worthy meal and attend that exciting Facebook event and Tweet that witty line and send that adorable snap with a hanging dog tongue. I’m proud I got out of the house this morning, but my free McDonald’s coffee seems a little sad in comparison.

And it’s not only other people. Every morning Facebook sends me a little notification, a red flag reminding me that On This Day “I have memories with so-and-so and so-and-so  and this many others.” Two years ago I was hosting three Rwandans in frigid Ottawa. Three years ago I was eating dim sum at my favourite Chinatown joint, the one where we once spotted John Baird. Seven years ago I was swarmed by jubilant crowds after Sydney Crosby scored a gold-winning goal.

I am haunted by these past successes, compelled to pour over them and reminisce, then filled with a longing for my old self. As well as I get, I can’t help but feel a stone-like knowing deep in my belly: that type of innocence is impossible to recapture.

That said, I’m doing my best to treat this as a learning experience. Yes, recovering is really difficult, but I must be learning something in all these hours of self-reflection. Working or travelling or going to school for a year are all rewarding and enriching experiences, but maybe learning to live with and work on yourself, free of the usual distractions, can also present lessons worth learning.

And, as always, I’m forever-grateful to the amazing support network that surrounds me. I’m partway through organizing a fundraiser with one of my former nurses, and the response so far has been both humbling and inspiring. I feel the embrace of so many generous souls, letting me know that as isolated as I may feel soldiering through this rare disease, I’m never truly alone.




2 thoughts on “On free coffee, free time, and the past, present and future

  1. Emily – If you’re still in the mood for giving yourself pats on the back, forget about ‘getting up before noon’ and congratulate yourself for blogging and getting back to your writing. You are a master of the ‘vivid description’ and I can see that in your writing today.

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