Remember me? 'Course you do...

Hello dearie. I've written a few of these emails before, back in August. Sent them out to the Future Mes, all very prolific and profound and...running out of p-words. It's just too tempting to write another. I don't get much mail anyway. At all. Got to keep myself company. Wouldn't it be neat, instead of sending multiple emails from one day, to send emails TO one day, as it gets closer? That would be something. But you'd have to remember which day. I think it'd be more fun to forget which day. As I no doubt will. Unless I'm counting on myself. Wait--I am, of course. I'm counting on you. Today is December 31, 2015, actually--this website says it's next year already, but that's probably a time zone error. It's only 11:32. Still got twenty-eight minutes. I'm sitting at my desk, listening to some YouTube mix of alternate music while everyone else is happily asleep. Mom and I stayed up for a while watching House MD, but only a couple episodes. (I got the box set for Christmas. Watched all eight seasons yet? If not, indulge. You don't watch TV otherwise.) Things are different now. Back in August, you had just been diagnosed. Three days after your sixteenth birthday. But you already know all this. You'd been sick for a while, just didn't know what the heck it was, till they tested for it. Electromyography, fun. (Needles...electric shocks...Don't let them do THAT again, if at all possible.) And then he told you. Myasthenia gravis. Incurable. (He didn't actually use that word, but it's true.) But hey, generally treatable! You thought things were pretty bad, then, didn't you? Feeling sick. Exhausted all the time, stuck with a hand tremor, sick from all the steroids...well darlin', that was just the tip of the iceberg. I don't mean other things went south. Not really. You did some amazing things this fall. Started junior year in high school...managed to hold on to your 4.0. Auditioned for all-state band and got in...for the first time since you got sick. Ran in two cross county races...all five kilometers. Then things went south. That's my one beef with your neurologist--back in August, he didn't say anything approaching, "Oh yes, and, myasthenia gravis can PROGRESS QUITE RAPIDLY so be prepared." I suppose you could say he's an expert in not scaring his patients with statistics or warnings or anything else remotely interesting. Nice guy and all. But he really didn't tell us much. All he said was these first few years would be important, with the disease. Had I not looked it up myself, I wouldn't have known that in August I barely presented any of the symptoms characteristic of MG. Who would have known that within six months you'd be seeing double, slurring your speech, walking with a cane, struggling to smile, struggling to breathe? And you thought that hand tremor was annoying, well--try needing two hands to lift your water glass. And then choking on the water while it dribbles down your chin. And spending the next fifteen minutes catching your breath. Then shuffling off to your afternoon classes. Who would have thought your favorite early Christmas present would be a shower stool? I can't stand up long enough to shower. In November we went back to the neurologist. Earliest available appointment, sadly. I had a very long list of new symptoms, and a lot of questions, understandably. (Reading between the lines--"What the fuck happened to my life??") And all he said was, "I can't answer that." Can't, well. He at least admitted my treatment had failed, and that my symptoms were no longer "mild," as he said in July. (Funny, back then I thought it was worse than mild. What in the world was I thinking?) So now, you're still on prednisone (half a year now, ouch--dropped that fifteen pounds yet? No pressure), and mestinon, and loratadine and calcium and vitamin D and omega-3s and a handful of supplements and...drumroll, IVIG. Yes, I didn't think he would start me on that, honestly, since I read that it's only used in severe cases, or to prep for surgery. But also in rapidly progressive cases, or ones not responsive to immunosuppression. Which would be me. So, every Tuesday you skip school to go sit in Oncology all day for the IV. And then you have a miserable headache for the next several days. Though last week you went to the ER for that, a light-sensitive migraine from IVIG, at they gave you some hydrocodone. Yummy. It's funny, but...back in August, I don't think you really realized what "incurable" means. You were very mature about it and all. Did some grieving. But it didn't quite register. It was like some grim game--hehe, I've got a disease no one's ever heard of. And I don't even look sick. But hey just get up every morning and go to school and have fun and live your life and take your pills, you'll manage. And when you run out of pills for the day, "ride it out." His exact words. But what about when the pills stop working? The worst part of having an invisible disease no has heard of is the loneliness. Because no one understands what it feels like to live with every second of every day. And to know that you will live with it for every future second of every future day. To live with it. On an average day, your own family just kind of ignores it till pressed...Like if they can choose when to talk about it, they can choose when it exists. I don't think I've heard one of them say the phrase "myasthenia gravis" in months. But I think about it all the time, unfortunately. I have a dream. To one day not think about it. At all. Not to not dwell on it, since I should try to do that anyway, but to just...never have it cross my mind. To speak without fear of slurring, or shower without a stool, or play piano without a tremor... You know what the last thing you did before you got sick was? You climbed the Grand Teton. That's right. The fucking Grand. (And the next weekend you went to running camp, sore feet and all.) Just remember that, though, because you're still that girl. You hear me? You're still YOU. Just because you think of that disease every day, just because you feel it every day, doesn't mean that's all you are. You know better than that. It's been a rough year. 2015. According to just about everyone, actually. Which you find to be hilarious, being as self-centered as you are. (Like really, Facebook friends, you have problems? Lay it on me! --Oh wait, I already have that in my news feed from last week, so don't bother. No I don't want to hear about your latest cold. You'll get over it, really. In days. So shut up. Before I cry. Or strangle you.) Who better to vent to that Future Me, who understands me best? I feel like the guy in "The Time Traveler's Wife," going back in time to his childhood self to explain what the heck is about to happen to him, starting to time travel and all. Only in reverse. And instead of seeing you face to face, I've written you a depressing novella. You can thank me later. Or I'll thank me later. Happy new year! It's 12:38 now. Man, it's gonna hurt when you have to get up at 7:00 tomorrow to take your prednisone. 'Course the only reason you're still awake now is you slept in today and took it late...Tsk, tsk. But isn't insomnia so useful on a night like this? You have to pick your battles. Especially when someone else signed you up for the war. --Laugh a little, dearie. It's still funny if you don't think too hard.