In the days following my husband TC’s assault, two vivid images began to occupy my mind. There was us, our young family, living penniless and in squalor, our son, Jack, once a lively toddler, now a sullen, withdrawn, and depressed teenager. It was my imagination’s best attempt at the worst-case scenario following TC’s devastating brain injury. My competing vision was much more preferable. In this scenario, TC was fully recovered, possibly an author or motivational speaker, certainly an inspiring advocate for brain injury. Jack and I stood by his side, proudly admiring his miraculous evolution.
In my mind, it could only be black and white. We were either going to make it or we weren’t. Quickly, I got to work, utilizing every available resource in an attempt to “fix” the situation. I began scouring the Internet for answers to the slew of questions I was rapidly developing. How long does a coma typically last? How much speech can a person recover? Do people with TBI return to work? If so, in what capacity? The list was, and continues to be, endless. At the time I thought I was looking for answers. The truth is, I was looking for reassurance.
I needed proof from people such as Gabby Giffords, Bob Woodruff, and other well-known people who had sustained severe TBIs that a nearly complete recovery was possible. I needed to know that marriages could not only survive, but even thrive in such difficult circumstances. I needed to know that things could turn out alright, because if it was possible, I was damn well going to ensure it happened. I imagine this response is fairly typical in people whose lives have just been impacted by TBI. For people like me (Type A, consummate planners), traumatic brain injury often represents the terrifying loss of our sense of self-control.
You see, prior to TC’s injury, I lived in a world where I could exercise a lot of self-control. I could take 1,000 photos until I found one that perfectly captured our charming little family for this year’s holiday card. I could estimate our future income with almost near precision and debate the merits of various throw pillows. It wasn’t that my life was perfect. It was that I could make it look perfect.
Brain injury pretty much decimates the illusion of perfection. Where we were once round pegs in a round world, we were now inarguably square. For months after TC’s injury, I would hold my breath when we went out to eat, praying he would order correctly and not confuse the waiter. TC would look at me with justifiable annoyance before reminding me, “I have to practice! What’s the worst that can happen?”
He was right. I was the one for whom people should have been holding their breath. If TC — the person with the actual brain injury — was unstressed about whether his latte order was delivered accurately, who was I to get so anxious about it? I didn’t realize that I had been devoting the bulk of my efforts trying to preserve an image — an image I had developed years ago, at around the time I stopped believing the world could handle any amount of diversity.
If I take my earlier worst and best case scenarios and place them on a spectrum, it’s clear our family has climbed far closer to best case over the past 17 months. But we’re still a bit oddball. We don’t move at lightning speed, a fact I needed to remind an AirTran representative last week when she scolded us because TC wasn’t running quickly enough to the gate. We often engage in frequent “correctional conversations” in public. Those of you who know aphasia may be well familiar with these. The script goes something like this:
TC: We’d like one large pizza. One with cheese. One with… pepp.. peppers.
Pizza Guy: So you want two pizzas? One with cheese? One with peppers?
Me: No! One pizza! You need to say half with cheese. Half with peppers.
TC: (Confused at trying to hold two conversations at once) Huh?
Perhaps our eccentricity is at its most prominent when ordering food, but I have a feeling the Maslins do quite a few odd things that perplex strangers. Whereas I spent the first year of brain injury meticulously trying to avoid these errors, in year two, I’m letting it all hang out.
Much of this mind shift is owed to the time we spent last summer in Halifax, Nova Scotia, where TC participated in intensive speech therapy. This was the first time we both truly recognized we were not alone in our challenges. We found it strangely relaxing to interact with other folks who were rehabilitating speech and physical limitations. In Halifax, we didn’t have to pretend we were something we’re not. Spouses were not expected to speak for their aphasia-affected partners. Participants were encouraged to take infinite time to express their thoughts. Awkwardness roamed free, to the extent that nothing really felt awkward anymore. In a world without judgment, we found it easy to be the best version of ourselves.
From what I can remember from my old life, no one really does feel like they fit in all of the time. The majority of us tax ourselves with consuming self-preservation efforts, simply to put forth the illusion of “belonging.” While I don’t expect to overcome all of that social pressure during my time on this planet, I’m grateful to brain injury for taking away my option of becoming a slave to it.
As we dive deep into 2014, I’m happy to cast aside my days of black and white thinking. The world can handle a little diversity. It can accommodate families that don’t quite fit the mold — whatever that means. None of us have the luxury of waiting around for a world of unanimous tolerance. Instead, tolerance has to come from within.
So, are we going to make it? You bet we are. It’s just not going to be picture perfect.