This Is What Happens…
…When lesions are found on your brain: The resident calls you. You’ve given him permission to tell you on the phone. You step out of class. The resident, who’s more nervous each time he talks to you, lets you know the lesions could be evidence of a stroke, a brain infection or an autoimmune disease so there will be more tests. You’ve already done a series of blood tests including an AIDS test even though you told the attending that you’d had one already earlier that year. He orders it anyway, you don’t like him because he never looks you in the eye when you speak and refers to you like some horse on an auction block when talking to his residents. You don’t yet know that you could’ve requested no students in your examinations.
Later you will know a lot more than you ever wanted to know about patients’ rights. You go back to the hospital for more tests. These include a lumbar puncture.
“A spinal tap?!” you ask the resident.
“It’s called ‘lumbar puncture,” he says.
You curl into a ball and the friend you brought with you tells jokes and you laugh.
“Please don’t laugh” the jittery resident says.
You never see how long the needle is but your friend does and for three seconds he looks pale.
You’re back in class preparing to give a presentation on the Tuskeegee Syphilis Study that killed black men in the name of science. You know it’s him calling because you just have a hunch. Again you step out of class. Again you give the resident permission. He does not sound nervous. He sounds tired, resigned.
“It’s MS” he exhales. You don’t think you feel much of a reaction. He tells you a nurse will train you on needle injections and a part of you is a bit excited by the idea of injecting yourself. Is this based on some movie you saw as a kid? You’re not sure. This is because you have no idea what injections are like, but you soon do.
You go back to class, you give your presentation. It goes well. This is your first semester of graduate school. You will write the rest of your final papers in the hospital. You will get all As. You will publish one of these papers. You start the injections, Avonex, and you think they suck and injections are no longer cool. As time passes, years, this will become the only semester you did well academically. You try to find that reaction. You realize, too, that you never cried.
You also keep going..sort of.
You will not fully comprehend what is happening to you for another two years. But this is what you do, anyway or, in the meantime: you stay in school, choosing not to take a leave of absence, because you simply don’t know what that would look like and, more practically, you’d lose your health insurance. Your treatment costs tens of thousands of dollars. You stay in school, you keep your insurance. Your family calls you a lot in the immediate aftermath. No one comes to visit except your father. You’re in the hospital when he comes and you smile when you first see him and then you’re dismayed because his wife follows him as do your siblings. You’re glad to see your siblings but you wish you just had your dad.
Two years later, they divorce after eighteen years and your stepmother never speaks to you again. You keep going. You ace that first semester because you’ve decided this is bullshit. You and your friend enjoy what you call a “man summer” which means you study a lot and screw a lot more and it is fun. You do more admirable things, like go to Italy to teach, Ireland for a writers workshop and to Portugal to present a paper. You teach undergrads for the first time with no prior experience and receive awards for your evaluations. You keep going. You’ve switched from weekly shots to daily shots and you and your boyfriend have contests over who can inject the fastest (note: he can). Your left hand gets weaker so you get that speak-to-text software. The school pays for it and you will misplace it after a year. You drink and smoke more and think nothing of it. Drinking has become a new art form, you have a martini set in your dorm room. You teach four classes per semester and lose 30 pounds and have an awesome boyfriend. This keeps you going.
You now have access to as many drugs as you want because you are chronically ill. You are on anti-depressants, stimulants and drugs to sleep. You look amazing and everyone tells you so, except one friend who voices concern but you will dismiss it. Because you are constantly someplace else. You are in pain all of the time. You keep going. You will soon fall apart.
You find out that…
You are not where you expected to be. The boyfriend is gone. Things were great between you two until they weren’t. He’s now in graduate school getting his MBA, you wrote the essays. You don’t regret that because no one can deny that when you love someone you love deeply and hard without any sense. It’s been almost a year since you last saw each other and you don’t cry anymore over him or the end of the relationship but you still cry over his son, whom you did not expect to still love this hard.
You get drunk and drunker again and again but you seem to be having a blast until you aren’t and you find yourself shuddering on your boyfriend’s kitchen floor. There are two occasions where you will never be sure if what you had was consensual sex. You remind yourself you graduated magna cum laude and wrote more than one A paper completely lit off your ass so there can’t be a problem now. Your mother reminds you of what she told you in high school: “Alcohol will not be a friend to you.” You smoke a ton and take pride in the fact that no one pegs you as a smoker, you don’t even have an odor. You are proud about a lot of things that you can still do. A professor calls your paper “worse than an undergrad’s” and you will hold that above every accomplishment you ever make, to this day. Because he told you that not long after you learned all about MS and cognitive impairment, so now your secret’s out: you’re retarded and everyone will know. And that is how you will live your life: afraid and self-conscious. Slowly but surely, over time, you find yourself opting for flats more than your trademark high heels. Eventually, you stop wearing heels altogether. Accordingly, you stop taking as much time to get dressed when going out — because what is the point?
Neither you nor your boyfriend are willing to admit it’s over, not even after you down a bottle of Klonopin with a glass of wine and Windex. You told him you were going to kill yourself and you meant it, sort of. They give you charcoal at the hospital and you stay there a week. Your father is there again and demands the hospital refer to him as “Doctor” because he’s an attorney. Your uncle calls and says you can’t die because he’d be left to deal with your father. Your mother has lived 3000 miles away for almost ten years because of things that happened that you rarely discuss. Despite being far away she will be your saving grace and keep you from completely drowning. You do not accept this yet. You leave the hospital and go right back to school because you had the common sense to try and off yourself during winter break so no work was missed. You tell your department that you had an MS exacerbation and you’re a bit amused at the irony of using your chronic illness to hide your mental illness.
You leave Boston for NYC telling yourself that without a car in Boston it’s harder to get around when you’re limping after a half-mile of walking. Within months you learn that NYC is just as terrible when seeking accommodation for the disabled. But you don’t look disabled. This means constantly proving your illness to people. You remain surprised at who does and doesn’t get it, this only furthers your belief that you cannot know anyone truly, ever, and they definitely cannot know you. You admit to yourself and no one else that you really left Boston to get away from your ex.
You get an apartment and a part-time job while completing your dissertation. You do not write. You begin to unravel. In a year you will have alienated the only friend who stands by you, you will have stopped drinking, you will be hauled off from your apartment by the cops and you will be in a mental ward for the second time in two years. This time, it was three bottles and a razor. This time, you can’t keep going, you will have to stop.
This is Now
This is your last chance. This is not your first time in a psych ward but this is the first time you pay attention. You try to sleep a lot. They won’t let you. You try to stay alone. They won’t let you. Your doctors call you a “high-level” patient: highly functioning, capable, intelligent. This is not news to you (you’ve never struggled to figure out your problems, just couldn’t get past them) but this is the first doctor who tells you he won’t be disarmed by your smile (“it’s notably disarming,” he says. This warms you, an older man once said this to you when you were a girl. You don’t tell him this.) nor will he buy your “ ‘I’m fine’ bullshit.” Like a kid, you’re still wide-eyed when an authority figure curses. The friend who you were a complete fuck to visits you more than once. Later, over dinner you both cry over what happened. There will be a handful of things you will never completely resolve and this heartbreak is one of them.
It’ll be six years in the winter since you were first diagnosed with MS. You don’t take shots anymore, the disease has progressed and now you’re on immunotherapy. It has one major side effect: a lethal brain cancer. You have a permanent limp that you hide well. You have problems swallowing and you slur your words. Your hands shake and the fatigue can be unbearable at times. As a recovering alcoholic you have to laugh that you walk funny and slur your words completely sober. You are deathly afraid you’re no longer competent to achieve anything. Sometimes you wonder if it will be depression or MS that kills you but you take comfort in knowing it will most likely be neither. It has not yet been a year since learning you’re bipolar. You thought bipolar people had highs and lows but you only have lows and they tell you this is normal. You learn that it’s normal to never feel joy and to love everyone else but yourself.
You stop saying that you’re fine but the automatic smiling will probably never go away. You wonder if your propensity to smile — and to do so in such a way — comes from growing up with divorced parents who didn’t stop fighting until your twenties. You despise this kind of boo-hoo thinking and remind yourself that everybody’s divorced. You don’t yet allow for the recognition of your story in its own right. Your self-righteousness borders on appalling. Indeed, you realize, it’s fucking killing you. They suggest Lithium and you cringe. You see your mother back when, 100 pounds overweight and miserable. You think your body’s already falling apart and you can’t afford getting fat. But you want to live and when they ask if you mean it and you say yes you surprise yourself because, yes, you want to live, you don’t want to do this, to succumb to the racing thoughts. So you try the lithium. Within days you wish you’d taken it the first time it was suggested years ago. Because this is the first time you can remember where you are calm and you don’t freak out. You’ve never been calm, that’s why you love booze. It bothered you that you’d been three months sober and still attempted suicide. You eventually understand that the removal of alcohol was the removal of your security blanket and it unleashed everything you’d kept at bay. You learn there was a ton of shit you’d been drinking, fucking, smoking, intellectualizing, and super-achieving away.
So you manage this ton of shit. Your dissertation remains unfinished. You will be one year sober this month. You haven’t been to a meeting in months and you think of a drink every other day. You have no job prospects. You are not unraveling. Sometimes your calm freaks you out. When MS allows, you sleep like a fucking baby. You still get angry and you cry now but not as much as others would like. You’ve gained ten pounds and have acne from Lithium and you occasionally hope that the drugs you take for MS will counter any more weight gain. You talk to yourself and make yourself chuckle. Not everyone likes you but you do. You have not lived as a saint but somehow you know that this is a better life. You have a sex life and you find this odd and amusing. You accept that you will not have a family of your own, you’re too selfish. You heard that depression is the inability to envision a future for oneself. So you draw. You learn to treat your emotions as temporary feelings and not demons to avoid. Sometimes you chalk up your deep-seated fear of emotions to some defense mechanism from when an older relative molested you. But you’ve always been the kind of person who shrugs off why shit happens and just keeps going. This is not your last chance but it’s the one that counts.
Linda Chavers, a DC native, lives in Philadelphia where she teaches literature at Temple University. She recently received her Ph.D. in African and African American Studies from Harvard University. When she’s not figuring out how to get her students as excited over Faulkner as she is, she enjoys contemporary fiction and reality television….the trashier, the better.