four years later / after / in

[four years sounds really long to me]

I feel like I don’t want to claim to know what I’m talking about anymore. Like for a long time I’ve been doing some kind of weird chin-up-soldier act where I pretended all of this was fine and I knew enough to understand it all. That doesn’t feel true anymore / maybe it’s because everything is changing all the time.

Like every medication on the market can kill you, they just have to figure out how so they can put it on the label.

Like we’re just starting to understand how to conceptualize MS and I don’t fully see what’s different now from how we thought of it before.

Like I can switch from one medication that inexplicably maybe works to another that inexplicably maybe works and my doctor and I can just shrug our shoulders at each other.

Like real science feels like folk science.

I finally made a friend (or two) with MS in the past year. I think that’s been good. Though in talking to friend(s) I want to be able to give advice / to know things / to act like I know things / to lend some stability and I just can’t. It would be a lie, you know? Talking to T (one of said friend(s)) about MS is like

T: my brain’s already killing itself
C: mine too
T: my dean told me to think of it as a life companion and it’s like
C: [laughs]
T: I would hope I don’t end up with a life companion that is slowly killing me?

T: we can, as the children say, “turn up”
C: literally almost posted a status this morning that was just “turn down for MS,” but nobody likes my MS joke statuses
T: MS joke statuses are my fave. Did I ever tell you the joke I told to the psychiatrist they assigned to me post-diagnosis?
C: no, tell me!
T: he was all, how are you dealing with this news blahblah. And I was like, I’m kind of still in shock…I knew I had self-destructive tendencies but MS is a bit much

C: people are always like “why didn’t you take years off between college and grad school” and I don’t wanna be like “because my brain is dissolving and this shit is degenerative and I want to finish school with as much brain as possible.” People act like even bringing it up is a buzzkill or like suddenly the conversation has to be intense or awkward. Also, omg, “I’m so sorry.”
T: Exactly!
C: Like oh, are you sorry about my life?
T: Don’t even get me started. Yes!!
C: and “if that happened to me I would kill myself”
T: they think it’s a compliment about our strength as people. But like. WTF.
C: Instead it’s like “btw you should kill yourself.”
T: Exactly. Like it’s hard to keep going every day knowing how my body could one day end up. I don’t need to hear that shit now.

I think what I’m trying to say is that 1 year after diagnosis and 4 years after diagnosis don’t feel very far apart. I think what I mean is that I just get more confused and lost.

Which isn’t to say that I need anyone to explain anything to me. I read. I research. I take disability studies classes, I’m in a very depressing (and very active) MS facebook group, I am aware of news and new research and new problems (always new problems, never new solutions). It’s just that all the reading and the researching and the thinking don’t get me any closer to solid ground, any more confident in what the future of me or my disease might look like.

I feel really tired.

I still think “my screen is blurry” before I think “my eyes are blurry.”

In the past year I’ve done some things my first doctor said I wouldn’t or shouldn’t: graduated college, pulled some all-nighters, taken some hot showers, been to the beach.

Today I almost passed out at the gym. And that was with doing everything I’m supposed to be doing already to not pass out at the gym. Please don’t tell me not to do things that make me feel better. It’s just that some problems are unsolvable, I guess.

Should this be a happy blog post / should I come to some neat and meaningful conclusion / should I say a lot of thank-yous (there are always a lot to say) / or maybe a lot of fuck-yous (equally many) / should I quote someone else with MS who inspires me / should I post a joke or a picture of me looking happy / should I distract you with something cheerful so you can forget about all the other stuff I just said / where’s the pretty bow to put on everything / how do I leave you thinking of me as wise or inspiring or brave or strong / maybe I don’t / I feel really tired.

3 Replies to “four years later / after / in”

  1. After 36 years with that diagnosis and what my doc says is an atrophied brain, all I can say is, it didn’t kill me today. With age comes a little perspective. The other thing I am NOT going to say is #Iknowhowyoufeel. Four years after my diagnosis all I felt was shame and fear. Keep writing.

  2. 25 years after diagnosis and it feels both like yesterday and a long long time ago. So many positive things have happened during that time (new pharmaceuticals) and funny/negative things (bee sting, no). Keep on doing all the stuff that makes you feel good. Sometimes it will be amazing and sometimes you’ll end up on the floor. Just. like. everyone. else.

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