Will I ever stop freaking out about MS progression?
I haven’t written much lately because I wasn’t sure I had anything nice to say and we all know the internet is no place for negativity. The thing is, I’m going through a bit of a thing. A crisis maybe, and a graduation of sorts, to a new level of disability. After 15 years it’s time for me to start using a walker on the regular. I guess this is MS progression. And somehow there’s still part of me that is utterly stunned by this. 15 with MS and though it feels like forever, this has been a relatively quick trip to Walkerton (even as I realize there are sadly, many who’ve reached this town even faster).
I’ve only just gotten used to using a cane and it’s time for a walker. Well, a rollator is what we’re supposed to call them now. And if the cane has taught me anything, it’s that there’s no going back. At least with MS, progression tends to be permanent. Mobility aids stick around until a new level of suck is reached and a more advanced assistive device is required. It’s that whole graduation thing but with less pomp and more circumstance. For there will be no keg party, no drunken make-outs and no prom dress at this grad. My only diploma is a bump in my EDSS score. Nobody wants to stay up all night celebrating this milestone. Although drinking until I barf does seem rather tempting right about now.
For several weeks as I waited for Rolly’s arrival (thanks ridiculously slow health care system for giving me ample time to emotionally process all this), I was able to see the bright side. I told myself a Rollator will afford me more freedom. Greater endurance. A cool basket to put stuff in.
No big deal.
But then a week ago, in the middle of all this healthy acceptance and well adjusted adjusting, something switched. I found myself assigning all kinds of meaning to this situation, leading me to freak out over a cheese plate and a pitcher of sangria on the balcony. The sudden change in my perception was so unexpected, I knew it had to be poisonous. But like the boozy fruit juice in front of me, I couldn’t stop myself from picking it up and taking a big sip of hysteria. Call it a walker or a rollator or whatever you want. Turns out needing this level of assistance just to get around is totally a BFD.
Like always, The Banker did his best to calm me down but I was having none of it. He countered each of my anxieties with hopeful reassurances and hunks of baguette smeared with brie. He told me for the thousandth time we are in this together and insisted his life is at least a million billion times better with any version of me in it. At least. He urged me to try the pâté. I remained unconvinced. He poured more sangria and that helped, but I can be very convincing, and finally I managed to make both of us cry. Somehow we finished our drinks and all the charcuterie and by morning I could breathe again. I’d purged all the grief from my system. I was ready to accept this breakup with independent walking and move on.
Or so I’d thought. We all know the first breakup never takes, and the next night I found myself staring at the ceiling at 3am thinking about what comes next. Trying to hold it together. Imagining the worst and not comprehending how I will possibly cope. Because the very, very worst part of all this is What comes next?
It’s always what comes next.
The next night I lay awake doing some random made-up math on how much time I think I have left. This was tiring because I’m not good at math, but not tiring enough to put me to sleep, so I got up to hang with the dog. Not surprisingly, she didn’t have any sage advice. She slept next to me, not judging, but occasionally waking to engage in some questionable self grooming. Ugh. I mean, clearly, she has her own problems.
Then after three sleepless nights I decided not to take any chances and chased a zopiclone with a generous glass of red wine. Trippers, this is not a substitute for medical advice, okay? This is a blog.
I slept better (sort of), but was still one more teary meltdown away from turning the corner. The one where I ugly cry and insist I’m not strong enough to deal with this. The one where I panic that I’m running out of time, and sob about the unfairness of it all, convinced my best days are behind me. The one where I conclude I am not okay. Because NONE OF THIS IS OKAY.
So. Much. Drama. Barf me to death. So I’m freaking out. Again. Sorry, everyone that loves me or has to be around me. I know this gets boring. But does anyone take this in stride? (No pun intended) It’s not spilled milk. The reality of MS is that not everything gets lost at diagnosis and grieved over all at once. It’s like getting a new disease over and over again.
I thought I was cool about this and then it arrived and I started to hyperventilate. The dog is in the picture to distract me from how fucked all of this is.
Though I’m still not really sleeping, I am starting to see my way out. Not because my body is stronger or my disease is slowing down. But because I can’t stay in this darkness for too long. And something I read last night seemed to click.
LOVE WHAT YOU HAVE
(thanks Andy, sorry for all the swearing)
We’ve all heard this before. Don’t hate what you don’t have. Love what you have. Somehow this is different from Be Grateful For What You Have, which sounds more like a bossy threat. Like, you’d better appreciate what you have before it gets snatched away – and isn’t that just the epitome of MS? Where any ability you have can be taken in a heartbeat? It can be challenging to be grateful for what seems like it’s only on loan when you know there’s a creepy repo man lurking around the corner just waiting to make his move.
Love what you have feels different. If you love something you don’t just acknowledge it with a polite thank you. You have to take care of it. You have to be kind to it. You have to do something – it’s not passive. Love is a verb. Could I give my MS a hug instead of a side eye loaded with vitriol? Love is patient, love is kind…that’s from the Bible, bitches, so you know it’s good. If I can find love for what my legs can do for me today, can I be patient and kind to them?
As I struggled to get to sleep last night I started making a mental Love What I Have list. I tried really hard to not take anything for granted, to not make this a ‘love what I have left’ list. I thought about The Banker and the dog and the tremendous comfort their love for me creates; the big obvious haves that go to the top of my list. Someday I will certainly lose my pup. She’s 11 years old. Suddenly I realize that knowing this doesn’t make me love her less. I don’t spend the time I have with her consumed with anxiety about what life will be like without her. I will deal with that later. That is a pain and a loss for Future Me to deal with.
Encouraged, I kept going with this list. I wanted to identify more than the things outside of me. I wanted to find love for the things that are maybe not the same as they once were. I wanted to find love for the things MS is trying to steal from me.
I decide to love that I got dressed and into bed by myself. I decide I love that I am independent. I resist the urge to frame this as ‘still’ independent because it implies impermanence, it implies ‘for now’. I love that I am independent. Period. That used to mean Girl Power but now it means I can walk to the bathroom by myself. Make coffee. Put my socks on. It’s an effort but I somehow manage to feel this without bitterness. I am truly thankful I can walk at all. And as tempted as I am to dwell on how desperately I want to walk forever – thinking about it takes me away from what I have today and puts me in an unknown, scary, future place that seems dark and impossible. It’s so nauseatingly throw up in my mouth cliché but I don’t have the future, I only have today. Sometimes I think I’m selling myself a bunch of Pollyanna bullshit but the only thing more exhausting than convincing myself of some Pollyanna bullshit is spiralling into despair. It’s better to decide I in fact have enough green grass right now. It’s time to pick myself up off the floor.
I don’t want to fight with my legs. I don’t want to resent them or feel frustrated. I want to love them. I want to slather them in lavender scented l’Occitane and whisper Thank you. I know you’re trying. It’s not your fault. You deserve beautiful shoes and regular pedicures.
Remember what I said about the very, very worst part of this? That is Future Me’s problem.
Maybe this graduation does deserve a party. After all, we mark transitions with traditions. So. Who wants to have a glass of Pommery?