progress

Classes officially started yesterday. Emboldened since I got the brace, I thought that I wouldn’t have nearly as much trouble making it through lectures as I did before. After all, I have been able to go to other functions that require sitting for an hour or more, so class should be no problem, right?

Wrong. During my one class yesterday, cramped in a chair-desk contraption that isn’t comfortable for healthy college students, never mind disabled old women like me, I was summarily reminded of why the last two semesters have been so fraught with pain.

Before class, I felt like a bit of a slacker, chatting with a professor about only being able to handle two courses. However, after sitting through the subsequent immunology lecture for an hour and fifteen minutes, I can confidently say that trying to add more time sitting at a desk would be a mistake.

My casual outings over the summer were nothing like class. I did not have to pay attention to every single word someone (like, say, a lecturer) was saying. I did not have to keep turning my head from the professor to the powerpoint to my notes and back. I did not have to prop my bad arm up on a desk and write said notes, more or less constantly, the entire time. I could choose whatever chair I wanted and even get up and walk around and stretch, if I needed to.

If I could take courses from home while standing at my own desk, viewing lectures online and completing work on my own time, I probably could manage at least one more class, if not two. But courses at traditional universities are still presented in a traditional manner. Or at least, all of the ones that pertain to my major and proposed career track are still traditional.

It’s another reminder of how at odds my outside is from my inside. I’ve put some weight on since finals in May, and I have a subtle figure-8 brace that looks like the straps from a backpack when viewed from the front, but I other than that I look exactly the same as I always have. More to the point, I don’t appear disabled in any way. This does not jive with my true status as someone who is physically weakened and constantly in some level of pain, not to mention often nauseated due to pain and/or medication.

But I’m reconciled to the fact that this is how it’s going to be, so when I talk about my condition, “partially disabled” comes to my lips relatively naturally. The phrase still sounds jarring to my ears once I release it into the air, but I’ve learned I have to say it aloud in order to get what I need.

I also have to be frank about my chronic pain. I wouldn’t have wanted to divulge its effects my functioning before. I would have thought such an admission to be a sign of weakness. But I’m coming around to thinking about it as simply an unadorned fact, about which people will think whatever they like, and upon which their thinking will have no effect whatsoever. I still feel like I will be judged and found wanting, maybe because I myself would have been a bit judgmental before this all happened, but it’s a risk I have to take.  I do need special dispensation.  That, too, is a simple and unadorned fact.

To me, the phrase “chronic pain” sounds deceptively mild. I used to think of a chronic condition as something more annoying than debilitating, occasionally severe but generally not a big deal. But however true (or untrue) that may be for other chronic ailments, that’s definitely not how chronic pain works.

For one thing, mild pain is still pain. One gets better at steering around it in order to think, speak, feel, or act, but it still takes more energy than it otherwise would. It’s like having to detour around a closed street; once it’s been closed long enough, the detour becomes automatic, but it still means driving a longer distance and using more gas. If you imagine that in order to go anywhere at all you have to take that detour, you can see how one’s tank would deplete more quickly than it did before.

More important, chronic pain is not “generally” anything. It is mercurial and callous. It can start early on and increase, or decrease, or stay the same, or it can come and go all day. It can lay you out at some point in the middle of the day without warning. It can keep you awake at night, or push you out of bed in the morning. Or both. Or neither. It can be burning, throbbing, stabbing, prickling, sharp, dull, focused, or diffuse, or some cruel elixir of any of these. It doesn’t care what you have planned for the day, or what you might want or need to do. It doesn’t care about your personal crises or celebrations. It doesn’t care what your kids, parents, friends, professors, or bosses are demanding of you. It doesn’t care if it’s a holiday or your birthday or a snow day or a deadline day.

The hardest thing to learn – the thing that I am still learning – is how not to let it distract me despite all of that. Less than halfway through lecture yesterday afternoon, my pain spiked, pushing up my neck into my right ear and down my back to my lumbar spine. It felt as though someone was microwaving the entire upper right side of my torso; hot, swollen, insistent. Apprehension started ramping up in my stomach. It’s only twenty after! How will I be able to keep writing and craning my neck for another hour? Then I realized I’d missed what the professor had discussed on the previous slide, only adding to my distress. This is a senior-level class – I can’t be missing chunks of these lectures!

I squirmed and stretched, fiddled with my brace, took some deep breaths, and refocused my mind on what the professor was saying. I wrote fewer notes and concentrated on listening more carefully. It took several more slides, but my anxiety slowly subsided (unfortunately, the pain did not), and I got through the rest of the class more or less fine. It was OK. I was OK. I didn’t fall apart, or lose track of the rest of the lecture, or have to get up and leave.

If I’m going to go about my business with the pain along for the ride, I have to become more adept at keeping my agitation in check. I need all my energy for the pain detour; I can’t be wasting fuel having to make a wide circle around the crazy-making, too. So, in a way, my experience in class today was necessary, because it showed me that I was going to have rethink how and where I sit in class and take notes. Fortunately, this experiment was conducted in a low-penalty environment; missing out on a few lecture slides about the syllabus and course overview is not going to affect my grade.

But I have to change the way I do this student thing. When I first went back to college as an adult student nearly two decades removed from her last college course with, I had no idea how to manage the work load and be successful. But I gradually built up a whole slate of little routines that enabled me to perform at an “acceptable” level, taking pride in becoming the ideal student, ruthlessly prepared, projects and assignments only turned in after hours spent perfecting them down to the last detail, always aiming to be the highest-achieving and smartest person in the class.

But these routines, and truthfully, this whole Type-A student self-concept, are no longer compatible with my pain and physical limitations. I can’t afford to remain wedded to such vanities. They’re too costly, and I’m on a fixed energy income. I’m grateful that I’ve had these summer months to practice staying under budget, with its sacrifices and small humiliations.

And besides, it’s not like the old routines were working out so well for me, now that I look back on them. I ran myself ragged trying to break the curve on every quiz, assignment, test, and project. And as a result, every year, I became ill or injured partway through fall semester and would spend the next couple of months recovering from that, all while hiding it from everyone except my closest friends and Momma Ape. Despite advice to the contrary, I stubbornly refused to inform professors and lab managers of my health problems. Some of those problems have been quite severe – I nearly had to be hospitalized at one point – but I didn’t want any special treatment, which I considered a weakness, and beneath me.

I took exams in December of last year in searing agony, and said not a word about it to anyone. Last spring, I allowed myself to ask to take exams in the morning, but only referenced a nerve entrapment resulting in poor physical functionality later in the day, framing it as a temporary injury, and making no mention whatsoever of the excruciating pain.

This fall, I have not only provided my professors with the relevant details of my condition, including the pain, but I have obtained and submitted paperwork to be designated as a disabled student, which will not only allow me to reschedule exams, but will also ensure a bit more leeway with regards to attendance policies. I’m not completely comfortable doing these things. It still feels like I’m asking for something I don’t really need or deserve. But the fact that I’m doing them anyway, comfortably or not, indicates progress. Going back to school is progress, too; this time last month, I was still unsure as to whether or not it would be possible for me to start taking classes again.

It’s nice to be making progress, both in dealing with my injury, and in my life in general. The demoralizing sense of being stuck in the middle of nowhere without guidance or direction has dissipated, and I’m tentatively following a trail of bread crumbs that has recently been revealed to me. Not because I know where it’s going, (that used to be of maximal importance, too, back in another life, it seems), but because it’s going somewhere, and I’m grateful just to be going anywhere at all. And that’s progress, too.

About SeeMorrigan

I'm a woman in her early forties who was beset in October of 2013 with a nerve entrapment due to an abnormal conformation of my shoulder blades. I was in constant, unrelieved pain for fifteen months, until, after countless misdiagnoses and mistreatments, a surgeon correctly diagnosed the issue and performed two surgeries to remove pieces of my shoulder blades. Along the way, I also discovered I am high-functioning autistic. I started this blog in March of 2014 as a way to try to process what was happening to me. It is my hope that by sharing it with you, we can both gain something, or at least learn something, from my experience.
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