I had one of those weird moments this week in which I was so completely misunderstood, I thought maybe my brain might be misfiring. It happens every so often; there will be break somewhere between my mind and my mouth and I’ll intend to say one thing but something completely different will be what actually comes out. So, for example, the other night I meant to ask Sam to give the dogs dinner, and instead I asked him to give them some soap. (They would have been so, so disappointed.) Basic aphasia stuff. Usually, I notice when it happens, but not always: hopefully, comedy then ensues.
I was giving a receptionist my partner’s phone number for some medical intake form, and she carefully repeated it back to me, getting it completely wrong. It was incredibly strange, the precise, measured way she read the number back to me, missing each individual digit; she sounded so clear and confident that for one second, I questioned what I’d said to her in the first place. I mean, I know for a fact that sometimes weird things happen when I open my mouth.
This is one of the funny perspectives that MS has given me; I realize that I’m traipsing about in the world, surprising people with my atypicalities, and I assume that other people must be doing the same. It leads me to be gentler, in general, when dealing with the public at large. I’m grateful for things like this, all these perspectives. I’m never going to tell you I’m happy to have had this disease- I’m not, to be clear- but there’s so much stuff that has come along with it that has been interesting, enriching, and has shaped who I’ve become since my diagnosis (and, really, before).
In my last appointment at the MS clinic, my new(er) neurologist and I discussed stem cell treatments, as well as some of the newer, monoclodal antibody treatments that are being discussed lately. He recently received one of those, actually, with strong results. These treatments, in particular, have been shown to not only help, but potentially treat MS, which is new— there’s been no medication or treatment out yet that actually fixes the damage the disease leaves behind after an exacerbation/ relapse. Thus far, the approach- and the available medications- have always been limited to stopping disease progression.
I have no idea what my body feels like without all of these medications inside of it, but the idea of potentially knowing again is exciting. Clearing my mind again sounds heavenly. And I haven’t allowed myself to think about healing or actually getting “better” in any real way since 2010 or so; I bounce back from relapses, I do everything I can to keep this body in terrifically healthy form, but this is a progressive disease: I haven’t believed I could get “better”. I put that idea in a box on a shelf and let it be.
Talking with my neuro, we were both careful to avoid sounding too optimistic, never using words like “hope” or “wish”. I wondered about timelines and insurance companies. We talked about how strange life would be without side effects. I joked that I’d probably just tell people I was still on muscle relaxers to avoid peer pressure re: alcohol. He told me that he’d always wondered who he could have been if he didn’t have MS, which I find rather stunning. I wonder the same at times, but then again, I’m not a neurologist; mostly, I’d just like to reclaim some of my language centers back, maybe kick this fatigue. I’m a little intimidated to imagine what his life- plan might be, should these treatments work out.
I’m not committed to this, but obviously it’s something I’m giving thought. Having options is a good thing. I’ve been discussing it with the people close to me, and I’ll keep doing that for a little while. The idea of being a person with MS who doesn’t take anything for it regularly- potentially, ever- is hypothetically appealing. (Could I use language that is any more tentative or cautious? Behold, the ever- hopeful girl in her natural, don’t get your hopes up habitat. Thanks, Ma.)
So there’s that: a color inspiration post and sort of a Good Things post, all in one, because I can’t think of a better thing than that this week, really. That actually happened late last week, but it’s kind of eclipsed everything good that happened since: over the weekend, this week, you get it. I’ve been letting it marinate since last Friday, trying to decide how I felt about it. There was a lakeside get- together which was lovely, some brunching, a meditation with friends, the tying up of some projects, and I have crafts I really need to blog, but mostly I’ve just been sort of wandering around in a haze and trying to puzzle out what this means to me. I still really don’t know, but that’s okay. That’s what tomorrow is for, right? And the day after that.