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Model Patient

on switching meds & getting married

Three days before the August wedding, my August wedding, we travel six hours southeast to Baltimore to see a guru. The guru is actually my doctor, who I’ll call Gerald. He’s been my doctor since I was eighteen, and I definitely don’t call him by his first name to his face. He’s the type of doctor who is often surrounded by other doctors who hope to one day become him. Gerald’s trailing group of doctors will probably love being like Gerald, seeing patients only once per week in fancy city clinics. Dispensing advice with utter confidence, answering questions from patients graciously and carefully, remembering our medical histories, shaking our hands.

Now, though, three days before the wedding, this group of doctors is just too many humans filling up a small room in a multiple sclerosis clinic in Baltimore. They peer at me and my soon-to-be husband Tyler curiously, like we are specimens. In fact, this is exactly what I am. A few years ago, I was the type of patient who was brave enough to switch to a brand-new pill for MS. The first MS pill had proved to be dangerous in a few ways (it could stop your heart, or cause a fatal brain infection), and the pill I tried was the second pill. The second pill was safe but not as effective as Gerald hoped. And the truth was that when I tried the second pill, I wasn’t really brave, I was just tired of the once-daily injections I’d been on since I was eighteen. I was tired of packaged syringes clogging up my mini-fridge and injection welts on my legs and arms, tired of the red plastic needle disposal box in my dorm room. So I switched to the pill, which I’ve been on for the past three years. And now, perhaps because I had seemed brave a few years ago, Gerald asks if I will switch to something new.

Gerald explains that the new treatment wasn’t as dangerous as he’d made it sound before. He apologizes for making it sound dangerous and frightening the last time we’d discussed it. When we’d discussed it before, he made this new treatment sound silly. It was like one of those ideas I had in freshman biology class. Example freshman idea: if MS is indeed caused by three factors (genetics, history of highly infectious mononucleosis, and vitamin D deficiency) then why not test everyone who has highly infectious mononucleosis for MS genes and then if they have those, give them a bunch of vitamin D? MS prevention solved, except for the millions or billions of dollars spent on unnecessary genetic testing, and the people who slip through the cracks because they don’t go to a hospital for mononucleosis.

When we talked about it before, the new treatment sounded that way too. Like: the mechanism of MS is that the immune system attacks the nervous system. So what if: you throw some chemo at it. The chemo kills off the immune system, and then the immune system rebuilds itself without the pesky MS problems it had before. This was marketed as a cure, as something patients would do for two years and then be totally fine. Imagine it: chemo for two years and then no more MS. It was tempting, which is why Gerald and I talked about it at all. But also, the high stakes were obvious, and the risks seemed to outweigh the benefits. MS isn’t fatal, and chemo has serious side effects, so why risk the side effects if MS won’t kill you? Why kill off your immune system when its glitches are less frightening?

Three days before the wedding, Gerald’s pitch has changed. The new treatment isn’t actually just chemo, it is gentler and more targeted. I wouldn’t lose my hair, the side effects would be frustrating but livable. He says it would only knock out the B-cells, which I pretend to understand. And it is no longer marketed as any kind of cure. Instead of two years and then no MS, the promise was that this treatment would only need to be administered every six months. Most MS medications are daily or monthly treatments, so twice a year sounds okay if I tune out everything else I know about it. I ask a lot of questions, because with Gerald I try to be a model patient when I can. A crowd of doctors looks at us and nods along to my questions and Gerald’s answers. I fold and refold the print-out about the treatment that my mother handed me the day before. This is the first appointment I have gone to without either of my parents, it is symbolic or it is just another day in the office for a crowd of doctors.

Sometimes, things are simple. In January, Tyler and I took a walk to a park by my house. I turned around and he was kneeling in the mud by the creek, holding out the little ring box with the diamond ring we’d picked out a few weeks before. For that type of thing, for private and glowing reasons, the answer is an easy yes. Yes absolutely, yes of course. Yes to mud on the knee of his jeans in January and a little diamond on my left hand, catching light and threads from embroidered dresses.

Other things are complicated. Like how Gerald doesn’t like it when I call myself disabled. He thinks of disability as a potential consequence of MS, an endgame he wants to help his patients avoid at all costs. I think of it more as who I am, the group of ruthless and tender women poets I’ve found on the internet who also are this way, a word and a community where I feel at home. It is also the legal term for my condition, my claim to meager government dollars or to a disability parking space if decide I want or need those things. It’s complicated to explain that to a doctor who sees a girl-woman he’s watched grow up, a person who is still mobile and not visibly disabled. It’s complicated to be the patient who’s willing to take chances and to thus be surrounded by a crowd of doctors. It feels like being the subject of a bet. Hey Gerald, bet you can’t talk an otherwise healthy and fine-seeming twenty-five-year-old bride into taking chemo.

The question I ask (that I know he doesn’t want me to ask) is this: if I lose my health insurance, will it be easier to get ahold of this chemo-ish drug once every six months, or to get a bottle of fancy pills once every single month? And the answer he gives is: it will be easier, if I don’t have insurance, to acquire the chemo. This isn’t a card he would have played, Gerald likes to instead talk about percentages of efficacy and the big picture, the how-will-your-life-look-in-ten-years stuff. I tend to be more concerned with everyday reality, side effects and symptoms and cost-per-dose.

When the people in power in politics can’t seem to let a subject drop and the subject happens to be whether they’d like to provide insurance for people with pre-existing conditions, this is the space where those of us with pre-existing conditions arrive. Like: I am twenty-five and getting married in three days and I will open my mouth and say yes to this chemo-ish drug that will hopefully be mostly safe and not kill me. I will pretend to understand B-cells, and I will acknowledge that the new treatment has a higher rate of efficacy than the pill, though in a different situation that would just be one of many factors to consider. Now it’s about politics and their consequences, one factor suddenly unbalancing the equation and negating everything else. Like: it’s not about pity, it’s not about disability as consequence to avoid, it’s not about what you can do to make disabled people more productive at work and thus more valuable to a capitalist system. It’s about creating a life or death situation where there wasn’t one previously, it’s about saying yes to something that sounded like a bad science project one year prior.

It is still August, heat makes MS symptoms worse, and so I am tired and nervous and more aware than usual of the fragility of my systems. It is August and yet another plan to repeal the Affordable Care Act was foiled a week ago (on my birthday), but I don’t doubt that a new plan will crest the political horizon soon. It is August and in three days I will be married to a man who is meeting my doctor for the first time today, after a long drive to a city where I don’t live, a city I visit almost exclusively for appointments. These appointments are crucial moments in my life as a sick person, they mark decisions and indecisions. An appointment can be successful or it can feel like a waste of a trip, like I wasn’t brave enough or reckless enough to try the drugs offered on that particular day, and so I will have to wait many more months before such an offer can be presented again. Other times I am the reckless one, the one who has stopped taking her crucial medications despite their supposed importance, the one who has yet again become too fed up with side effects to be the model patient.

Imagine that a chemo-ish drug is the same as a little diamond ring in a frozen park, that an incurable disease is like a companion and thus the relationship might mature and evolve. (I think of the friend whose therapist told her to consider her MS as a life partner, which we found hilarious and excruciating, the type of thing only a healthy person could think up.) Except they’re not the same, this is not easy. The group of doctors is intent, Tyler is taking careful notes, I try to smile. Perhaps I should be excited or brave but I feel neither, I start to shred the print-out with my fingers and then stop. Gerald looks beyond me, like he is looking out the window, except the blinds are down and there’s nothing out there anyway, just an air shaft. The treatment is like falling except not into love. The treatment is complicated, it is both smart and reckless, it is confinement and fear and security all at once. It is the current best answer. And so I say yes.