It is ironic how imperfectly – as judged by my former self – things turned out.
One of the only independent things I do currently is use my computer. Specifically, my mom's computer. Although someone needs to put the computer in a proper place and attach the headphones to my head, once the Dragon Dictation is open and running I am able to independently access the outside world without anyone's help. Which – given the fact that I have literally no autonomy over any aspect of my life – is a miracle. Never mind the fact that after struggling with the Dragon's inconsistencies on my beloved MacBook Pro for four years, I had to appropriate my mother's PC and acquire a different version of Dragon, or the fact that writing one paragraph using the dictation takes me about 10 times as long as it ever would have when using my fingers, or the fact that rather than use the mouse pad to click on something I need to use the infinitely annoying "mouse grid" command, the Dragon – and all of the frustrations that come with it – simply has to be "good enough. "
I currently drive my motorized wheelchair with a head array which has, to date, led to two different 15 inch gashes in two different walls in my parents house, has led to the near mangling of my left leg underneath my bathroom sink, multiple near disasters on the way into and out of my van, an array of publicly embarrassing mishaps in clothing stores, grocery stores and restaurants and which, on a good day, catalyzes a cacophony of swearwords from my mouth that cause mothers to cover their children's ears in my presence. All of that said, the head array, in its current state is functioning as well as it ever will. So despite the fact that every time my chair runs over a crack in the pavement or a doorjamb and my head jostles just enough to randomly turn up the speed or cause the chair to veer violently to the left or right, I suppose it has to be "good enough."
Due to the need for my aforementioned motorized wheelchair, I need a converted van to leave my house. After dealing with the chronically malfunctioning power ramp equipped in my previous Honda Odyssey, I downgraded to a Dodge Caravan with a manual pull out ramp. The pros of the van: the ramp works even when it is cold out (the Honda' s ramp would freeze and refuse to function) and does not automatically refuse to work if it senses a curb (also a chronic problem in the Honda). The cons: literally everything else. It is loud, it drives like a school bus, the seats are uncomfortable for the driver/passengers, the ramp – on one occasion – actually fell out of the car, every visible (and presumably invisible) part of the van (including the interior floor) is already rusting after not even two years, it gets crappy gas mileage and – this is the kicker – it still cost more than my parent's first house. Still though, I need an accessible van, I distrust the reliability of the ramp in the Honda, and I don't have an extra $75,000 to spend on a new (questionably better) van. So I am stuck. Stuck with the Dodge that will have to be "good enough".
This will be the last of my rant and it is, admittedly, of minimal importance in the grand scheme of things, but I so miss having control over my hair and makeup. Thinking it would make things easier, I let my hairdresser (also an old caregiver and good friend) cut my hair off a few years ago. My long hair was constantly in my face and without working arms and hands, pushing it out of my eyes/nose/mouth was an impossibility. I mistakenly thought short hair would simplify my life, and with certain caregivers it actually did. But for my poor Ithaca College students who worked on the weekends, my short hair was a bit of a nightmare. A nightmare in part because all of my gorgeous long-haired college students were woefully inadequate and inexperienced at dealing with short hair, and also in part because I was a woefully inadequate teacher:
Me: okay, first you need to towel it dry and part it on the right side.
(Student follows directions verbatim)
Me: um, not quite that far to the right and it's a little bit crooked.
(Student attempts to fix problem)
Me: better (even if it is secretly not), now just try to smooth down the right side a little bit and shake your fingers through the left side so it looks a little bit more textured.
Student: not exactly sure what you mean by textured, like this?
Me: not exactly, hold your fingers like you are playing the piano and just shake them back and forth through my hair…
Student: like this? Is this good?
Me: (trying to sound genuine even though I want to throw a temper tantrum) absolutely. It is absolutely "good enough".
Makeup, though thankfully more self-explanatory, frequently yields a similar level of frustration. Not just with the college students however, but with everyone. Nobody does it the way I want to do it – it's not blended perfectly, the mascara is clumpy, the blush is too dark, etc. At this point I wear makeup on very rare occasions, and when I do, you can rest assured, it is most definitely just "good enough".
There are thousands of things I wish I could do in a day, and there are thousands of things I imagine I would do "perfectly" were I able. I also know however, that I would never be as patient or as kind to myself as my caregivers are. Even when I am staring in the mirror complaining about my hair and my mom peeks her head in to the bathroom and says, "your hair looks exactly the same as it did yesterday", my caregivers will painstakingly part and re-part my hair over and over again until my "good enough" sounds convincing.
So while my Dragon, my wheelchair and my Dodge minivan are not – as it turns out – as "good enough" as I wish they were, I want to acknowledge how lucky I am to live in a place and time where these things exist. All three of those things allow me to interact with the outside world and there is no way to overstate their importance. Additionally, it is entirely possible that, had I not spent the first 19 years of my life able-bodied, I would not even know that things could be better than "good enough". I would not have driven my own cars, or used my own fingers to type and navigate the computer, or seen how seamlessly I could walk through hallways and open doors without damaging walls or yielding personal mortification. I know that I am incredibly lucky – given my unique set of unlucky circumstances – to be sitting in this wheelchair, slowly dictating this blog, after taking my dog to the creek in my rusty minivan. But sometimes, memories of an easier time in my life creep up on me like a masked man with a gun at my back and I cannot help but think, things sure could be just a little bit better.