I like to tell myself that everyone has those “yeah right, medical professionals, quit the hyperbole and lemme do what I’m gonna do” moments. Aren’t I, after all, the expert on my own body? (History would suggest otherwise, in my case, but I’ll conveniently brush over that part.) Don’t hold me back! I’m regrowing a metaphorical pair of wings, and I’m ready to flyyyyy!
Don’t get me wrong: generally speaking, self-confidence is a good thing. I truly think that my stubbornness and refusal to believe that the statistics apply to me have brought me from where I was at this point last year—more on that in some future post—to where I am now. If you suggest that there’s little chance I’ll live, goodness knows that I’ll take that as a dare. Just watch me, people. This very morning, in fact, my palliative-care doctor told me that I’m exceeding all of her expectations (that’s a compliment, right?). Things are by no means perfect, but I’ve made, and continue to make, way more progress than it was thought I could even when I was discharged from the inpatient rehabilitation hospital in March. Lots of little milestones and a couple of big ones. More on those in a future post, too.
Needless to say, just as anxiety can be healthy and motivating when it serves as a needed push, self-confidence is great when it doesn’t cause you to flip backward in your wheelchair while enjoying a morning coffee on your balcony, hitting the back of your neck on the way down.
Yep. That happened. I was incredibly lucky, escaping with a few bruises and nothing more serious, but still, it was terrifying.
What’s frustrating is that I wasn’t popping a wheelie or anything; believe it or not, I’m smarter than that. I was simply maneuvering myself to make it easier for my husband to pull me back into our apartment. Now that I’m so much more functionally capable than I once was, setbacks such as this one tend to feel more devastating than they did during my lie-around-unable-to-breathe-without-the-assistance-of-a-ventilator phase, when I would’ve given nearly anything to be well enough to do a casual backward flip in a wheelchair on a sunny balcony.
There’s some perspective, I suppose.
In any case, my community OT is going to swing by to evaluate the safety concern, and my new wheelchair, which will be more stable than the one I currently have, will be dropped off tomorrow. In other words, there are solutions. Though this was an unfortunate bump, it doesn’t mean that the momentum I’ve been building won’t continue to be in the right direction. Two wheelchair rotations forward, one flip back.
De Morbo Sacro: Life and/with Epilepsy 