Right. So. Here we go.
For those unfamiliar with my wheelchair (i.e. complete strangers) or how I got it (i.e. most people I met after high school and complete strangers), I sustained a spinal cord injury in January 2008 (making this kind of my eight-year injuriversary if you want to get technical and somewhat Hallmark-y about it). It was a C7 level injury where the seventh vertebra of my spinal column became 70% compressed. Bone fragments hit my spinal cord and had to be taken out, and other parts of vertebra had to be removed in a surgery that lasted I’m not sure how many hours (4? 6? seriously, I forgot). I have a barely-noticeable scar on the front of my neck (“nice cut” as a family friend who is also a surgeon put it) and some titanium in my neck. The injury, caused by a motor vehicle accident where I was wearing my seatbelt and was not the driver, initially left me paralyzed from the chest down with limited movement in my right hand (so, TECHNICALLY a quadriplegic, although I can wheel myself around in a manual chair). Since my injury, I graduated high school, went to college, and just finished a master’s in medieval history (awesome subject, by the way). I’m applying for a PhD in Education so that I can study, among other things, college access for students with disabilities.
Now that I’ve covered that super brief summary, I’m going to explain why it took me eight years to start a blog. Well, actually, I have two blogs (three if you count my middle school xanga, but that was my super emo phase and I highly doubt you want to subject yourself to my 13-year-old ridiculousness): the first was a short-lived sports blog, and the other is a dessert blog featuring recipes and reviews of accessible bakeries/coffeeshops. But this is my first spinal cord injury (SCI) related blog. Three reasons for why this is happening mad late:
1. Denna Laing’s SCI: For those who don’t follow the NWHL, it is a professional women’s hockey league in its first season. Denna Laing played for the Boston Pride, and sustained an SCI during the NWHL Winter Classic on December 31, 2015. As I read what little I could about her injury (her family’s been keeping most of the details private), all I could think about was how long her recovery is going to take. I have no doubt that she will make some recovery (hockey players are remarkably tough), but it will take a long time. Which leads me to the second reason.
2. As Denna Laing begins her own recovery journey, I thought back on the past eight years, and everything is a blur. I don’t remember how I was two, four, or six years ago compared to now. My parents will mention struggles I had when I started my freshman year of college, and I will have forgotten about it. For instance, on move-in day, I sat in my room and heard the voices of people in my freshman dorm chatting, laughing, and probably becoming best friends just outside my door. I was so nervous about leaving my room, and I was positive that no one would want to talk to me. After all, when I became injured, my high school friends kicked me off the track team that I had spent the previous three years on, and told me that the sight of me made them uncomfortable (they were in the van with me that crashed, and I brought back bad memories). My parents reminded me that I asked them to let me leave college on the first day because I didn’t want to relive high school. And while I kind of remember this happening, I’ve largely forgotten it. Still, it’s worth remembering because this was part of my SCI-related reality, and I can’t ignore the fact that my disability makes socializing more difficult. And as far as my reality goes:
3. I tried so very hard not to tell anyone at college or at my master’s program about my physical therapy regiment in any great detail, with the exception of close friends. Perhaps I felt embarrassed to overshare, or I feared that if I said too much, my friends would leave me for less problematic individuals. I also never wanted my professors to factor my disability into my ability to work. When my undergrad thesis advisor suggested that I use an eleven-volume Old French-German dictionary for one of my chapters, I wanted to say, “I’m not sure how doable that is,” but I wanted to downplay any potential problems, so I just nodded and said, “Sure! No problem.”
Truth is, while I was at college, I spent at least an hour a day in my standing frame, four times a week on my Functional Electrical Stimulation (FES) cycle (imagine your leg muscles getting shocked into pedaling a bike uphill for an hour), and I would occasionally use the one ADA-approved weight machine at the nearby Law School gym. In an attempt to have a seemingly normal college life, I did most of my physical therapy (PT) in the morning, so that it wouldn’t interfere with socializing later in the day. As you can imagine, I woke up early, went to bed late, and functioned on an unhealthy amount of sleep. Thank goodness I pride myself on being a masochistic workaholic, otherwise college would’ve been rough. I’m out of school for now, though, and as my friends have posted about the things they’re doing on social media, I felt inclined to do the same. Sure, I’m spending the majority of my time trying to regain a skill I learned previously when I was a toddler, but it’s worth doing for health and other practical reasons.
But here’s the thing – even when I was doing the bare minimum of PT (yes, standing frame and FES cycling are the bare minimum), I was regaining sensation in parts of my body I was told I’d never feel again, fighting muscle atrophy, and seeing my disability as part of my identity. Do I know when any of this happened? Not specifically, just “during college.” It’s hard to keep these blogs because usually people with disabilities in the media are either seen as inspirational and fighting for a cure, or depressed and hoping for a cure. I don’t want to fall into either category, and quite frankly it’s damaging to have just two categories when disability itself is so nuanced and complicated. There are days when my wheelchair is my friend and I can move around and get more done in a day than I could’ve when I was able-bodied, and there are other days when my disability makes me feel isolated and unmotivated. Sometimes I feel like I haven’t made enough progress, sometimes I feel like I’ve made a good amount, and sometimes I feel like a medical marvel. My disability is what it is, and it presents its own character-building challenges on a daily basis.
And this year is the best year to start it (well, eight years ago would’ve been the best year to start, but whatever). I’m on something of a gap year, and doing my standing frame, FES cycle, and going to a gym for people with spinal cord injuries and other neurological issues called Push to Walk for the year. It’s in New Jersey and it’s awesome. A few months ago, I could actually feel my lower back kick in during an exercise, and now it works better than it did last year. Do I remember when exactly this happened? Ha, no. My trainer might, though, he actually takes notes.
So here’s to actually recording when things happen, and writing things that I didn’t feel totally comfortable saying years ago. Some entries will be short (e.g., “Holy crap, I can feel my ankles, and they’re freezing, why is it so cold outside?”), and others will be long, like my frustration at using paratransit and my quest to find a dress that actually looks good sitting down (no joke, it’s hard). There will also likely be embarrassing stories, because those are unavoidable when you have an SCI. It’s a good way of keeping a record for me, and it’s a way to let people know that my time isn’t spent solely on going to bakeries and evaluating their hot chocolate and whether or not they have a ramp. And if there’s someone out there with a disability reading along, odds are some of this will sound familiar to you (in which case, yay, we’re not alone).
TLDR: Having an SCI is difficult, and it’s not something you hear or read about too often (unless someone famous gets injured, and even then it’s sugar-coated and labeled “inspiring”). So here’s my attempt at describing my SCI journey.