in which I tell you about the truck

My neurologist carries an old- fashioned doctor's bag. It makes me love him even more. He's kind of the best. Please excuse the cell- phone shot; I had to catch this in the wild, on the fly.

My neurologist carries an old- fashioned doctor’s bag. It makes me love him even more. He’s kind of the best. Please excuse the cell- phone shot; I had to catch this in the wild, on the fly.

I saw my neurologist this week, the charming Dr. D, for a follow- up after my most recent MS flare.

In truth, I go to him most often looking for confirmation of things I already know. I ask him things looking for a head- nod, and I usually get it. When I asked him if I could expect to regain full strength in my left arm through physical therapy, or if this might be my new reality, I wasn’t surprised to hear him gently remind me that sometimes, a patient will come through a flare “dinged up”, and that there were no guarantees.

There are never any guarantees. All the standard MS disclaimers apply. I knew that coming in to the appointment. I knew that as the question left my lips. I don’t know why I ask him these things, except that I feel compelled.

We went through the checks, did the work, discussed impairment, change. I’m making the move from a daily injectable to an oral disease modifying medication, which is big and exciting and more than a little nerve- wracking, too, but hooray, no more shots! I’m looking forward to that. We’ve submitted the paperwork, and I’ll hopefully begin the screening process soon. It’s a bit of a thing, switching meds, but I’m looking forward to a little less pain in my life on a daily basis.

It’s a tiny comfort in the pretty epic sea of shit I’m swimming through right now.

My body is different than it was before- it works differently than it did. My left arm- my smart arm- it gives out on me. It’s weak, but pretends to be strong for just long enough that I will routinely rely on it. It pretends just long enough to be dangerous, that’s what I mean to say. My left leg is mostly back, but strangely not- quite- right, too—- it can go off- track in ways I can’t really explain but somehow makes sense to my neuro. The foot will start dropping when I am tired, which makes me sad; drop foot is such a risk factor in falling.

I’ve never had this happen before, this loss. While I’ve always known it could happen, there’s this fundamental difference between knowing a thing and actually experiencing it, of course. This is real. This happens. And it can happen again. Flares, MS relapses, they will happen again, they’re an integral part of this disease, and this thing, this loss of ability, it can happen again too, and I have absolutely no idea what I could lose. It could be as simple as a tiny parcel of sensation in my right forearm, or it could be my ability to walk. My sight. My ability to speak. I can’t predict any of it. I can’t begin to plan. I can’t do anything to prepare myself, my family, or my life. There is no way to plan. Nothing.

Oh god. Some times. Some times I just can’t, folks. Some times it creeps up behind me, this horrible thing, and I can feel it standing there, breathing.

I don’t really know where my margins of ability are anymore, and that’s so scary. Terrifying. I don’t know what I can and can’t do any more, which makes doing normal, everyday things so much riskier than they should be. I don’t understand, essentially, the entire left side of my body. My smart side. I feel as though don’t know this body anymore. I just- I don’t know.

I don’t know.

And I don’t know what’s coming next, either. I don’t know anything.

I don’t know, today, if I’m strong enough for this. I don’t know if I’m brave enough for this. I don’t know if I have this in me. I don’t know. And I don’t have any choice, either. I will wake up every day in this body and I need to get okay with that again. I need to get better than okay with that.

Anyone can lose their ability at any time, of course. They can fall down the stairs. They can be hit by a truck. That’s life; that’s reality. Things happen all the time, to folks everywhere. It isn’t fair, and it isn’t right, but it’s the way things are. The difference for me is that my body is the truck. Unlike most people, I know the truck exists, and I know I will see the truck, repeatedly, throughout my lifetime. I take it with me everywhere. The truck absolutely, positively will hit me, more than once. I just don’t know if it will graze me or smash the ever-loving hell out of me, that’s all. With MS, I’m lucky in that I know it won’t kill me outright, and that’s one hell of a blessing. (I’m not going to think about the fact that there are other trucks out there. That’s too depressing for words.) Right now, I’m still reeling from having been actually hit by the truck- as opposed to just grazed, like I’m used to- and I’m surprised, too. I’d been so careful. I am so, so tired of living in fear of this, and even more so, now. I hate that goddamned truck.

I know that this world will gobble you up if you let it; that there are things that are so big and scary and awful that if you don’t stop and sit and do something good for yourself you can fall down and stay there. I know that because I’ve seen it, seen it happen to people I’ve loved. I can see how easy that might be. I don’t know what to do with all this fear and anger and everything except just talk about it. Tell people about it. I don’t know- maybe there’s someone else out there who needs to know that this is one way that this thing happens. That at least makes this entire thing useful, somehow. I like being useful. And tonight, I’ll settle in and paint more tiny canvases, little abstract paintings; if all else fails, make art. It doesn’t fix everything, except it kind of does: I’ll still have MS when I put my paints away, and MS will still suck, but I’ll also have tiny paintings, and I’ll be just a little happier than I was before.

That’s something.

  One thought on “in which I tell you about the truck

  1. June 19, 2013 at 5:53 pm

    You are one of the people in my life I look up to the most. ♥

  2. June 19, 2013 at 6:25 pm

    Oh, honey. ❤

  3. June 19, 2013 at 6:35 pm

    When I’m working on a painting I’m in my ‘happy’ place and everything else fades away for awhile. Hope this is how it works for you, too. I’m sorry about your MS and all the perplexing problems. Hang in and keep painting!

  4. June 19, 2013 at 6:36 pm

    as always, you amaze me. you are afraid, yes, but also still, amazingly strong and brave. and truthful and real. it’s hard to read someone’s account of their life with pain and fear and not want to fix it or help. i hope we help by listening and acknowledging your truth. keep putting beautiful yarn and photos and yourself into the world.

  5. June 19, 2013 at 7:20 pm

    My fiance's aunt has MS and recently switched to the oral meds and similarly celebrated. I hope they help make the condition just a tiny bit more bearable. And please, please be careful with the drop foot. Both she and my mom (not MS-related, it just happened) have struggled with it and there have been more tumbles down the stairs than I care to remember. Please be extra careful and take your time on the stairs, always.

  6. June 19, 2013 at 10:15 pm

    You articulate these things so eloquently. I’ve had a similar experience of not being able to be the boss of my own neurological illness, but I’ve found it very difficult to articulate to others. Your posts often leave me gasping for breath a little, with tears in my eyes (or rolling down my cheeks). They are so true, and so alive.

    Love to you, and good luck with the medication switch.

  7. June 20, 2013 at 11:22 am

    It sounds like we are experiencing similar things right now. I’ve had the same thought and emotions – I’m currently off work dealing with a flare of right side weakness, balance problems, etc. The high dose of steroids that they gave me for 3 days is finally doing the trick with my weakness and balance, but I still can’t feel my feet or hands, much. This might be my new normal. It makes typing and driving irritating and a little scary, but I suppose not impossible. I remind myself that Im far from dying, but it doesn’t always help, does it?

    I just started the oral med this week (Tecfidera?) My insurance co is till considering the coverage, but in the meantime the drug co provides it for free. I’ve never taken the Copaxone, having always said no (Im a bit of a needle-phobe and had never heard great reports about the drug anyway. I hope this one helps, though so far I’m having a few side effects that I hope will lessen with time.

    Best wishes to you. Hopefully both our symptoms ease off.

  8. MikeW
    June 20, 2013 at 1:11 pm

    You are a warrior on (and in) a different kind of battle and battlefield than most of us experience. A being of beauty and glory whose body hosts part of a larger war in which the old wise saying rings out to every generation passing through, “Be kind, everyone is fighting a great battle.” Your intelligence, your articulate intelligence reports here, your courage, your spirit, and your being will prevail even if your body relents on a different timetable and in different ways from the rest of us. You can bet an entire compounding federal debt that your posts are useful. Your reports are not only useful to those suffering what you suffer, but the rest, the rest in their own battles. Language is a gift and you are gifted with it. Do continue using it. The character of your struggle, your battle technique, your recoveries, and your handling of this seriously wrong, fallen aspect of this world I believe will be honored, not just in feeble words like these, but in spirit more real than the nascent functioning of our bodies incapable of holding spirits like yours. One day, the war will end forever, and peace and your courageous spirit fully alive shall prevail. I hope we all face our battles with the courage that stands fast despite internal and external buffetings and temptations of fear and frustration. Your witnessing to your daily campaigns, professionally written and delivered, yet undaunted in spirit are priceless in value to others. To me.

  9. July 2, 2013 at 1:00 pm

    I ♥ you even more. xx

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