My to-do list is a mile long, so obviously I’m updating my blog. In my absence, I’ve been publishing creatively—check out my pieces in r.kv.r.y and DIAGRAM if you haven’t already followed all my buzz about it on Facebook or Twitter—reworking my novel for the final time, and teaching three courses, while attempting to read a book or two for that dissertation proposal I have to write, probably sooner than I’d like to. Besides all that, I’ll break down my life like this: Fuck you, American healthcare system; and fuck you, American system of education that accepts the semi-hazing process of working yourself to the bone to simultaneously finance a higher degree and survive; and fuck you, government standards of disability that indicate that if you are at all functional, you’re not in enough pain to qualify for anything.
Very few people I currently know are aware of this, and I always downplay it, but the cold hard truth is that, years before my Ph.D. program, at my worst, I lay on my couch for two weeks, missing class and work, relegating my affairs to a colleague who kindly substituted for me. Moving at all was agonizing. Lying on the couch itself, the pressure of its support, was agonizing. Everything was visually cloudy, which I assumed was from pain, until I couldn’t turn my head and my vision began sporadically leaving me, and which turned out to be pinched nerves through my neck, face, scalp, and head. I analogize this to my experience of the seasons: during winter I’m so aware of the experience of cold and arthritic pain that I can hear my mortality screaming through the walls, but during summer, the experience is unreachable, so far removed that when winter rolls around again it takes me by surprise, like it’s something I shouldn’t have been expecting, when I should always, always, know better.
But I never really do learn anything, and I always push myself a step further than maybe I’m equipped to go, so when the crash comes I don’t just lose the attic or the front door; the entire house of cards collapses, and I’m left with the inability to do much more than make public admissions and confessions while knowing that transparency regarding personal disclosures can be a deal-breaker for most institutions. (If it weren’t for Melanie Yergeau and her wonderful advice about handling personal disclosures when on the job market, I think transparency would scare me a lot more.) Anyway, I’m still working out how to handle the fact that my personal life is already locatable in my creative work should anyone choose to Google stalk me, or even click the helpful links on this blog.
So it comes down to this. Rutgers cuts my funding as a TA. I’m willing to take out loans and work, so at first, this isn’t as much of a threat to my personal existence. I interview around quals time. I’m asked on campus visits. Each time I lose out to the candidate who, unlike me, has a degree in hand and has a more traditional background in rhetoric, despite receiving personalized feedback on my applications stating how wonderful it was to meet me, how much they want to see more from me once I’m done with my doctorate, how they are confident that I’ll find employment.
I’ll check my personal commentary. The objective analysis is this. I lose my employee benefits on 8/31. Mind you, they weren’t great to begin with, but they allowed me to establish a good network of in-network care for 3 years. I was able to find the medications that worked for me and get to a dose that worked for me.
I have employment as an adjunct for the fall, and a part-time administrative job that I believe will run the whole year. I’m grateful for that. I’m grateful to the various professors and peers who have sent jobs my way; without them, I probably wouldn’t even have a salary. I’m indebted to the care providers who see me for on a sliding scale or for free, despite my insurance refusing to reimburse them. In order to attend school and survive, I have to take out loans for tuition, work as though I’m applying the same standard of care to myself that I have been for three years, and, the kicker, pay a higher health insurance premium for student insurance that is not going to allow that standard of care.
When my insurance changes and I’m on multiple adjunct salaries, if I calculate for tax and rent and commuter fare within NYC and between NYC and NJ, there’s really no way I’m going to be able to afford all the higher co-pays. Lyrica, the needlessly controlled substance I’m always worrying about, will become part of a mail-in program, sent direct from a pharmacy controlled by the insurance company. I’ve read the horror stories about mail-ins not arriving on time or at all. At some point in my life I advocated more of a straight-and-narrow when it came to medication. Ever since I had to start dealing with insurance companies, I save all my extras of everything because you just never know. I don’t think it’s noticeable but ever since last July, when I was unable to receive a refill due to insurance and Lyrica being a Schedule V drug (which makes no sense also, see earlier blog posts), I stopped cold turkey for two days and since then I have an occasional stutter which I think are brought on by momentary lapses into aphasia. I may not have proof, but the timeline of the symptom works out that way. The system is pretty much commanding me to hoard Lyrica if I want to protect myself, prepare to pay ER fees so I can get the medication at the hospital for free, or try to convince a pharmacist, doctor, or other health provider I’m close with to commit fraud. On top of this, I’m supposed to start a medication for inflammatory arthritis, which will apparently control for the heart-attack chest pains I’ve taught myself to ignore. This medication can cause liver failure, so monthly liver function tests are essential. My office co-pays are going to leap up, and so are my lab work co-pays, and that’s not a cheap panel. I can already see myself taking the medication and playing chicken with my liver until Something Bad Happens and I have to take measures that are less preventative than Well, Vy, You’ve Gone and Done It Now.
I waver, constantly, between feeling as though I’m in the process of dying, or wondering if I’ve taught myself to ignore the pain that is warning me that death is impending.
I’ll end with a list of potential sacrifices, because list-making feels creative to me and writing creatively is the next item on my agenda for today, before I commit to grading nonstop until Monday morning.
1. Food. It’s almost expected that Ph.D. students starve. Artists starve. I’m both. When I starve, I get flare-ups. I experimented with fasting for two days to make sure this was still true. It is. I feel nauseous all the time and eating is a struggle, but at least right now I have the option of eating enough and eating well. I don’t have to carry my groceries because I can afford FreshDirect more than once a month. To put a point on it, when I carry my groceries, I lose an entire day to lying in bed waiting for the aches to pass.
2. Medication. My mind on Lyrica, not even at the therapeutic dose, is not a steel trap but it is functional. I have thoughts. I can write them down, talk them out, think my way through complicated texts and discussions, albeit slowly and not consistently. The fibro-fog is lessened. I’m still stiff and cloudy for about 2-3 hours after waking up, but that’s better than all day, every day. What happens if I don’t get a refill on time? Do I have to go off it for financial reasons? If the arthritis drug is my new miracle drug, then great, but I don’t know that yet, and what I do know is if I lower my Lyrica dose I feel it the next day. The withdrawal is epic. I’ll be a different person for months. How am I supposed to work, let alone work well, like that?
I have this dream that I can orchestrate a spectacular protest around crowdsourcing drugs. I ask every artist and activist I know with decent insurance to study neuropathy until they can fake it, to bring a tape recorder in their pocket to a doctor’s office and ask for Lyrica, to fill the prescription and sell it to me at the price they paid. Then I either live happily on a permanent supply of it, or I pull a Guy Debord, only my spectacular suicide would probably involve sitting in front of an insurance company with boxes of my hoarded pills and setting myself on fire, since that usually does the trick.
3. Health care. I see a psychotherapist for pain counseling. It’s on a sliding scale but even that’s going to be expensive, and going less than once a week isn’t worth it to either of us. It would probably be stupid to stop seeing him when I know the pain will probably be worse, but if I stop seeing him that’s 1-2 more FreshDirect orders a month. I pay little to nothing for doctor visits right now, and everyone I see is a specialist and I sometimes go in multiple times a month. I have to make appointments to get my refills because they can’t call the damn thing in. I can already see myself cutting back to one specialist, once a month, and keep my problems to myself so they don’t tell me to come back for more frequent follow-ups. It’s not like the doctors don’t ignore problems as well, or pick and choose what they attack. I actually forgot until last night that a normal resting pulse is not supposed to be 95 and up.
I am truly blessed that I get physical therapy for free. If I didn’t, I’d consider myself done.
4. School and writing. With all of this, how am I expected to write a dissertation, let alone a proposal? Maybe this whole post is my way of publicly expressing my inability to express this to anyone on my committee, to make it easier when I finally have to tell them. I’ll be experimenting with a new standard of care from now until December, plus working fairly full-time to pay for that standard of care, so academic work won’t be happening. Creative work probably will, because pain fuels my ability to write the fiction I tend to write lately (think Dennis Cooper, or Crossed). Also, in case I really am dying, I have always vowed that I’d finish all the creative work on my plate first. I’ll push through teaching, too, because I love to do it and maybe it’ll remind me or fool me into thinking that there’s hope for the world, but the idea of working on a proposal about rhetoric + a model for social change, when my own situation is awful stasis….
There are consolation prizes, and I’m glad to have them. I’m so happy to be teaching at Columbia again I can’t even put it into words. I’m thrilled to be writing my fiction again, and enjoying it, even though it’s always grueling. I’m lucky to have the support network that I do, a sister who doubles as my best friend, a physical therapist who is unbelievably good at what she does and touchingly empathetic with the bodies on which she works, a literary agent who continually hauls from the gutter my self-esteem as a writer, the writerly and scholarly contacts I have, romantic prospects waiting in the wings, some kind of emotional support from my parents, a home that’s really affordable by Manhattan standards, the jobs I do have in the fall, professors who look out for me, the publications and presentations I’ve done or been invited to do, the strangers on rush hour trains who recognize and accommodate those who are visibly suffering.
In the final analysis, I’m strangely happy with my weird scholarly trajectory and the life I’ve led up to now, even though I keep being forced to come back to the fact that the systems in which we live and work are monstrously unfair. I’m not sure if I’m making peace with an inevitability, resigning myself to two years that will go like this, or preparing for radical action. At the end of this post, I’m back to my anger about rejection letters expressing confidence in my ability to find employment and do great things. It’s an empty consolation and I don’t need it. Without adequate self-care, it’s an impossibility. But I’ll conclude with the notion of making peace. I’ve had guns in my face before, and seen the blood from the stabbing of a teenager, and like winter, felt my own mortality like a skin I keep desperately clutching at while it keeps sagging, threatening to slip away. This feeling now, it’s that same numbness, under this happiness like rebar. That is, practically speaking, I have to decide what to keep and what to cut away, and it’s a terrible time to be at this crossroads, and a terrible crossroads to be at.
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