➔ Right now: look up. Someday you will feel anger or sadness or envy or something but right now just look up, and think about how big this building is. And how it is a maze of little rooms filled with people like you and their unfortunate families and they are all getting life-altering news and reacting and questioning and then wandering back down here to the lobby to get their parking validated. Think about that for as long as you can, while your mother says it’s not fair and your father walks ahead and you get in the car and head back toward your tiny town, away from this fancy city hospital. Think about all the tiny towns those other people are going back to, think about all the medication bottles clinking together in their purses and tote bags and dresser drawers. Unhear as many words as you can, delete multiple and sclerosis from your vocabulary, imagine that for one more day those words can be far from you, separate from you. Fall asleep in the car on the drive home and think about nothing, dream about nothing, wake up in the driveway of your parents’ house like you have so many times before and remember that everything is repetition and nothing is unique and you are a good learner, you always have been, you will learn how to be sick.
➔ Pay attention, okay, because this is going to go faster than it should. The home nurse brandishes the syringe and a stress ball, injects the saline into the blue foam, and now it is your turn. Pinch the skin of the ball like it’s your skin and pierce it with the tip of the sharp sharp needle like it’s your skin and push the plunger in and try not to think about how this is not like anything else you have ever done to your skin. And then the home nurse will leave, somehow satisfied she has taught you enough, and you will be alone with your stack of brand-new syringes filled with something clear that is not just saline. Put them in your dorm room mini-fridge. You will need to get over that pesky urge toward self-preservation, you will need to think in a new way: to heal yourself, you need to hurt yourself. And when your hands are too shaky or your eyes are too tired or your arms can’t reach, you will need to put the syringe in the hand of a friend or boyfriend or one night stand and let them do it instead, and you will need to not hate them for it after. For the first week you will cry and the medication will burn and then fade to a throbbing ache deep in your subcutaneous tissue which is just another word for fat and you will dread and dread the next time. After the first week the tears will stop because crying every day just isn’t sustainable, you know this, you are a smart girl, and so no more tears, good, just like that.
➔ This is not the right body for bad habits, so those will need to go. This is no longer a body you can starve and sculpt into something you think might be a little beautiful, this is a body you have to feed so it will not faint, these are legs that will give out if you don’t satisfy some calorie needs. This is a body which two years ago could do tequila shots like clockwork, could drink itself into a stupor if it wanted to, but that can’t continue. Or, it can, if you insist, but it will be unpleasant. You will need to be a little bit nicer to this body because it has now revealed its fragility, and yes this is a little earlier than you might have expected, and yes it is not fair, you are right, it is not okay that you don’t get to do the things you wanted to, or maybe you’re wrong. Maybe you were dumb to have those expectations at all. Maybe you should think about why you thought your health was guaranteed to you, maybe that’s a little too much to ask right now, maybe you should put down that drink and go to bed but take some pills before you do, the right ones, some perfect combination so you can wake up functional in the morning and not have to go to the hospital again, and yes you are no doctor and yes this feels like folk science or black magic, utter nonsense, but just introduce a handful of pills to your ready throat and then please, go to sleep.
➔ Answer every single question about your disease that any potential romantic partner should care to ask. Yes, it will feel very invasive and vulnerable and unnecessary, you will want to say you are not dating my MS or you don’t get to ask that or how about you just fuck me instead but those are apparently not the right answers and so you will need to look back into those steady blinking wavering hazel blue green brown eyes and tell the truth. Or come really close. Or close your eyes and let some tears out and maybe he’ll stop asking those questions, maybe you don’t need to check in weekly about your MS, maybe he should just understand that if you feel like shit you’ll tell him, maybe he should know he doesn’t get to ask, and yet the fact that this is a series of boy-men-people who are always asking the same goddamn questions will suggest to you that in fact he is entitled to know about this body before he gets involved with it. Or maybe he should just shut up and fuck me already, and he’ll be so drawn in by your bluntness, honesty, desire, he won’t ask any more questions, at least not for a little while.
➔ But when he does ask, or when he gets some look in his eye like this is love instead of whatever else we do with bodies, you will need to say something. And you can tell lies if you want to, you can say I can take care of myself and it won’t affect you at all and it’s really not a big deal until he believes you.
➔ Get drunk, drunker than you should be, what is this should they talk about anyway, and spew nonsense into some summer night air. Tell a boy holding your hand that you’re not sick, they’re wrong about you, you’re actually just fine, say it over and over as he becomes more and more uncomfortable and you both know you’re wrong but you’ve started this and you don’t really want to stop now so just keep going, just keep saying I am healthy and believe me and they are wrong and later he will say he couldn’t just give in to drunk girl logic as if this was the most important conversation the two of you would ever have, that one time when you were drunk enough to say fantasy things out loud and he was stubborn enough to tell you you were wrong. Little does he know this is the conversation happening in your head every time the phlebotomist is taking more and more blood from your pretty blue veins and you think I didn’t even know the word phlebotomist in that past life. And you think what if all of this is wrong, what if I don’t need to be here, what if I don’t need to take all those pills, what if they don’t need to take all my blood, what if there are no holes in my brain and I am just fine and the other side of you, the stubborn side reminiscent of that boy says you are sick, okay, now shut the fuck up and don’t pass out. You shut the fuck up and you get through blood draw number million without passing out and don’t you know there are people out there who have it much worse, much much worse, this is nothing, close your eyes and lay back because this is nothing.
➔ Have yet another dream where you need to run away from something and your feet won’t run. They just won’t move fast enough. Have this dream so many times you start to think it is real, you start to think your legs don’t know how to run anymore, and you don’t even test out this hypothesis on a treadmill or a track or some sidewalk because it just feels so true, everything in you is on a downward spiral and it just makes sense that your legs have forgotten how to run. Someone will come put you out of your misery soon, don’t worry, just struggle along with those heavy concrete legs until they get here.
➔ Learn how to live alone. Graduate college and move to a new city for grad school. Learn how to keep your pills in a little mountain next to your bed so you can play chemistry set in the morning to get your body all propped up enough to go to class. Learn how to go to bed alone and wake up alone and walk everywhere alone and go to doctor’s appointments alone and medical tests alone. You don’t need any parents, you are no child, you need a man like a fish needs a technicolor tricycle which is to say, desperately, desperately you do, but you don’t have one right here right now so you’re going to need to learn to do all these things alone. You will make new friends. You will not ask them to do the things your old friends used to do, you’re off those injectables now because there’s finally a pill out and you cried when the FDA approved it and you will never again need to ask your most sober friend if at the end of the night they might be willing to plunge a needle into your flesh and count very slowly to ten to make sure they have filled you up with all that toxic stuff, all that life-saving stuff. Your new friends can be kept at a distance, in fact everything can be kept at a distance, you can build a lot of walls around yourself and pretend they’re called a house. This is a lie. They are just walls keeping nice people out. But it is important that you know how to be alone, because if you have learned anything at all over these past four years it is that disease is isolating and you will feel alone in a room full of people lifting their glasses up to you to say happy diagnosis day to you, happy four years of knowing exactly what is wrong with your body. You invited them here and they came and you should feel warmth and love and security but instead go home by yourself and cry and don’t tell anyone about it after. Text out thank yous instead because you are grateful. And yeah, happy diagnosis day to you, congratulations, or something.