As April trudges steadily onward, bringing with it the promise of, um, May, warmer days are becoming increasingly frequent (even in Ontario, where eighteen-degree highs continue to alternate with seven-degree ones¹). I usually welcome spring and all that it represents with open arms, eager to be able to more comfortably spend time outdoors racking up steps on my pedometer while listening to educational podcasts—a win-win if there ever was one.
This year, however, I instead find myself resentfully staring out the window on the sunnier days at the passersby, those lucky bastards who’re able to make independent decisions and can thus roam the streets as they please since they aren’t stuck in their jail cell/home until someone agrees to break them out for a bit. Yes, I’m projecting a little. I ignore, of course, the fact that most—if not all—of these aspirationally dressed strangers (Canadians, I’ve noticed, like to closet their jackets and break out their short sleeves and chinos as soon as the temperature hits the low double digits) likely have troubles of their own. Wallowing in self-pity is much more easily accomplished when it’s accompanied by a good dose of delusion about how great everyone else has it, comparatively speaking.
If I’m fair to myself, I’d say that I’m dealing with my current situation—brain injury/epilepsy prison, as I think of it—pretty well. I’m used to being super independent, to spending a good chunk of each day out doing stuff that makes me feel productive, so being almost fully reliant on others continues to necessitate a huge adjustment, both to how I conduct my day-to-day life and to how I see myself. However, though I complain about it and am frustrated and am, yes, endlessly bitter about the extent to which I’m cooped up in our apartment, I also understand that my care team isn’t arbitrarily punishing me. I understand, in other words, that there are safety concerns requiring my confinement. I know that the trauma of my surgeries and brain injury is still fresh, and I try to be sympathetic to my husband’s worries. (I don’t remember much of January and February, when I was in the hospital quite sick, and as a result, the aftereffects of that period are very different for me as opposed to for my husband, who witnessed the nitty gritty and stored the details away using his intact neurological faculties.) I know that I still get confused, seemingly at random. I know that I still wander. I know that I still have seizures. I know that I need to be monitored and that it makes sense to follow the most recent guidelines we’ve received until they can be updated by professionals at the Acquired Brain Injury (ABI)–rehab program that I’ll officially start in a few weeks.
But simply knowing that I should be OK with something and actually being OK with it are, of course, completely distinct potential realities, and since the ABI didn’t wipe out the emotions part of my brain (though I sometimes, very misguidedly, wish it had—who needs feelings???), I often find it difficult to accept that my “job” right now is to do gentle activities at home while I wait for things to get better.
And so it’s happened, once or thrice, that I’ve, erm, pushed the limits regarding leaving the apartment on my own.² This has led to “discussions” and solution-seeking of varying levels of success.
We already have a pretty good system in place whereby I spend time with friends in a local coffee shop several times a week. I try to make a tentative schedule on Sundays so that I know what I have to look forward to, and also because I’m a control freak who loves structure and can’t stand having an open calendar with nothing but blank squares stretching through to the next weekend. I’m so thankful to have great pals who’re able and willing to come to my neighbourhood and give me the opportunity to get out of my ABI jail for a precious few hours at a time. I’m almost positive that they don’t fully understand what those not-at-home intervals mean to my quality of life.
If you’re reading this, dudes: THANK YOU. Bold, italicized, all-capital text for emphasis. You’re pretty much the best. Keep being awesome.
Alas: although very, very helpful, this hasn’t been quite enough, especially since what I’m able to do while at home is restricted, too (material for another blog post, so I won’t expand on it now). My surging frustration this past week or so made it clear that concrete change is needed. We decided that among other modifications to our routine meant to hold us (me) over until the start of my ABI-rehab program, where I can get specialized, professional advice, it’s important to make an effort to get out of the neighbourhood more, even if that means using taxis instead of public transportation and taking precautions that I normally wouldn’t.
And so a few days ago, we planned to go to a late-afternoon matinee at a movie theatre downtown, near the University of Toronto. We picked a film almost at random (well, based in part on its Rotten Tomatoes rating) and took an Uber there.
Our cinema of choice is in a centre with many businesses, including a large bookstore, a drugstore, and a grocery store. Once we arrived, I realized that sitting through a two-hour movie would be too taxing for my easily overwhelmed brain. As it turns out, it was enough to run some errands, to get a mediocre Americano at an outlet of a worldwide coffee chain, and to navigate two busy subway stations and the train itself with my cane and come out alive. Mostly, to enjoy being in different environments for a bit and to have a taste of independence, albeit the supervised, carefully limited kind.
I got home from that outing determined to make more of its type happen. In my head, and maybe on a piece of paper that I discarded and forgot about and will find later—with my memory issues, that scenario is likely—I planned a series of adventures, some solo and some accompanied: gotta keep things realistic. After a few hours of contemplation, which included several conversations with my husband, I began to instinctively appreciate the need to reign in my desire to be a thirty-one-year-old without a brain injury and without refractory epilepsy. Maybe it was the extreme exhaustion that resulted from a jaunt that for “Normal Me” would have been part of a larger action-packed day. Maybe it was the seizures that I had that evening, which may or may not have been tied to the extreme exhaustion mentioned in the previous sentence. Maybe it was nothing more than my common sense finally overcoming my misguided, emotions-fuelled drive to make my brain heal more quickly than it’s possible for it to. Whatever it was that gave me the final push to do so, I decided that combined with short walks in our area and visitors who come to me/us (we appreciate you!), one or two trips out of the neighbourhood a week would be more than enough at this particular moment in my personal history to make me feel less isolated.
I’m hopeful that this plan’ll improve my morale, which I’ll admit is flagging a bit. With the door alarm and the baby gate installed, I’m more of an ABI prisoner than ever—though yes, one who receives loving care and enjoys a certain freedom of movement. What our journey showed me is that while I wait to start my neuro-rehab program and work on getting better at home, relatively little things, like taking an Uber or, better yet, the TTC to a shopping centre in a different part of the city, can assume an enormous importance in making a difficult situation more tolerable. Next time, I might even brush my quickly growing hair before hitting the town.
1. Please note that I don’t have the patience to convert these Celsius temps to Fahrenheit ones. I still hold out hope that the Americans will switch over to the logical temperature scale someday. #RIPAndersCelsius #metric4life
2. Unluckily for me, but more so for my husband, I’ve also been feeling angrier and more aggressive than I did pre–brain injury. Maybe I’ll write more about that the next time I’m especially angry, for full effect. I’m usually able to keep it under control, but on occasion, something sets me off and my inner Hulk is activated.