on living with a hurricane

I cut my hair, folks.

 I went back to this wonderful place in the woods in CT that I used to hang out in, The Village Of The Little People, recently. There were rumors it was going to be destroyed so developers could build condos. I was so relieved. Also, I cut my hair.

I’ve been working on this thing lately, a push to regain my body. It’s exhausting. Regaining your health really takes it out of you, as it turns out. Funny, right? Maybe I just needed to hit a really low point first, though, in order to gain the momentum. It gets jumbled. Either way, here I am, scuttling from one appointment to the next; I feel as though life is what happens in between my specialists lately, and while that isn’t the worst thing that’s ever happened- because there is progress being made- it’s overwhelming, too. 

It’s all physical therapy and pain clinics and tests and new neurologists and the Hopkins MS Center and new diagnoses and neuro therapy and new medications and mostly just the word “and”. I asked for this and I’m getting it, firehose- style. Things got ugly this spring, as they usually do; it didn’t feel like a relapse, though, and it wasn’t. Yes, on so many levels! I’m glad I can read my body that well now. I asked for an MRI and it came back clean as a whistle; no changes since 2012. Beautiful, but that’s MS, too; sometimes you just don’t have any info to work with. But hooray for Gilenya working, and hey, three cheers for some body awareness, right? That’s tricky stuff within chronic illness.

Muscle spasms are now a big part of my disease: dystonia, specifically. My initial reaction upon receiving that diagnosis was that the word “dystonia” sounded like the name of achingly terrible high school thrash metal band. It would look perfect shakily pencil- carved into a desk in arched faux- Metallica lettering. I’m so into that image, even if I’m not into the thing itself. 

I thought, when I started all of this, that part of what I was doing was looking for answers: some sort of why to all of this. Even before I’d gotten my results back from my MRI, though—- as I was leaving radiology—- I knew I didn’t really care about any of that. I wanted, very badly, for the MRI to be clear of “black holes”, the T1 brain lesions, truly dead tissue, but other than any of that, the why of what was happening no longer mattered to me. What I cared about was what we could do to fix it. That was what had always mattered: getting back to life. I’m working on it. In actuality, I think I’ll be getting back to life, but life will likely end up looking different in the end, which is scary. I can only look at that in glimpses, in pieces. I need to break that up into parts and take it in doses, which is appropriate. 

I had the strangest thought the other night, curled up on the couch, listening to the thrum of my muscles as they cycled through my body. Squeeze, hold, hold, hold, partial release: as my body works through this I listen, I distract, I coax, I try so many approaches, learning how this new thing is done. We’re working together, my body and me, I suppose. Meds transitions are always a strange time: there’s usually a period in which I need to taper off one drug before I can begin another, and that can give a small glimpse into the true condition of my body, of what lies underneath. 

I have no idea what my body is really like anymore, I thought. Underneath all the medications, I could be in any condition at all. It’s very disconcerting, this realization that I am really that disconnected from the genuine state of things. Later that night, talking with Sam, I told him that while I’d never discontinue taking my medications for any period of time, there’s a part of me that wonders what it would be like to spend a week drug- free, just being in this skin. It’d be trickier than just not taking my pills for a few days- most of my medications build up in the system over weeks, and the Gilenya takes about three months- but the idea is a fascinating, terrifying mental exercise. I wouldn’t want to be in this body, unmedicated; that’s a truth, too. It would be horrible. My idea of normal is when my meds are working. That’s complicated.

Taking a break from my medications is never something I’d do, obviously—- there’s the losing ground by being off my disease- modifying med, and the pain, god, that’s a deterrent, too—- but there’s something so strange and surreal in re- entering this knowledge. I’m always aware of it on some small, secret level; denial is useful in small doses, and it can be a genuine coping strategy in daily life when carefully applied. I’m happy not to dive to deep into the mess of pretending my world is different than it actually is, but in order to move from day to day, I think I need to minimize just how frightening this separation from my body- or is it my disease?- is.

(I’m trying to parse that lately, too: what am I fighting, exactly? Am I angry at this disease, or at my body, or both? What I still haven’t been able to figure out is my current relationship with my body in all of this: are we team members working on taking this disease down a notch, or is our relationship something more adversarial? There doesn’t seem much point in directing anger at this body, despite the inevitable and perhaps ridiculous feelings of betrayal that come with long- term illness, injury & disease.)

I’m feeling over- medicalized, despite having initiated all this; it’s just part and parcel of it all. The professionalism and compassion exhibited by the staff really helps mitigate the way the medical system can make a patient feel a bit bruised after a time. It’s inevitable; you get looked over by five or six specialists and can start feeling a bit like a piece of meat or a puzzle to be solved. A good bedside manner helps a lot. I am very grateful for good bedside manners these days. I find myself increasingly grateful for manners of all sorts lately. 

I’m feeling hopeful, too. This is all overwhelming and weird and a lot to manage, but I’m hoping it’s the beginning of something good. Seeking balance, attempt… eleventy billion? I know it’s a process, not a thing you acquire and then cling to, or find and then just effortlessly have, and yet. And yet, and yet, and yet. We all want things to just happen without much work on our parts, right? We most especially want this when we’re feeling tired and a little run down, of course. It’s a bit like coming home after a super- long day at work and there’s nothing in the fridge except ingredients- no leftovers to be found. You know if you just do the thing and make yourself dinner you’ll be wicked glad you did, but you’ve got to dig down a little bit more to find the self that gives a damn enough to make a proper dinner instead of just some scrambled eggs with hot sauce and grated cheese. 

And while I know that this body and I will always be somewhat uneasy with each other- that this relationship will always resemble two roommates who are surviving a hurricane together- I’ve also been to some pretty awful places with some folks. I’ve seen the way that trauma can bind, bond, and even heal. I think about the way I talk with other folks who’ve dealt with trauma, whether they’re veterans, disabled, or come from dysfunctional families, and the way we understand each other, the way we heal and hold each other. It isn’t always pretty- it’s frequently not- but we speak our languages and instinctively know where to press to help with the pain. Maybe I can find that with this body, too. We’re surviving this monster together, I think. 

  One thought on “on living with a hurricane

  1. July 15, 2014 at 2:22 pm

    This encapsulates exactly a feeling I have frequently about my epilepsy medication. I feel like I don’t know how wrong everything would be. What is really there, without the potions. And I try to convince myself that what is here WITH the medication is what is real. It is so strange.

    “I have no idea what my body is really like anymore, I thought. Underneath all the medications, I could be in any condition at all.”

  2. Doreen Morris
    April 14, 2015 at 8:10 pm

    U took words out my head n wrote them down darlin, I suffer from this as well as many other conditions n life is hard. N me n my body just doesn’t fit anymore.
    Well done on this, amazin writin n expression xx Doreen Morris.
    Please feel free to add me on Facebook , or message,chat etc x take care x

  3. Elise
    August 15, 2015 at 11:11 pm

    You should have done more research before taking that picture in the village of the little people because it is haunted by demons and that picture you toke was on the throne of the little people and you will die within 7 years I am so sorry to tell you this I really really wish I could help

    • August 17, 2015 at 11:14 am

      LOLS, I’ve heard that before. Sorry, but I grew up right by the Little People Village and have been sitting on that throne on & off since I was a teenager. I should be dead a couple times over by now if that were true. Thanks for bringing out an old urban legend, though!

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