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.