Multiple sclerosis is bullshit, you guys. No pity party, but rather a shout- out to the percentage of my readers who are dealing with chronic pain diseases and/ or syndromes: this crap is for the birds. I am officially, 100% over this. This stuff is just plain tricky, in so many ways that I’d never seen coming when I received my diagnosis. When I walked out of Hopkins on the day I received my diagnosis, stunned, quiet, scared, I think that expected this to be a mostly medical adventure, all prescriptions and tasks, physical therapy, perhaps; some light exercise, maybe assistive tech. It is all that, but more than anything, it’s re- learning how to live.
It’s been a long, long road, and there’s so much I’ve learned along the way. Seriously. I mean you just do: there’s a really steep learning curve, so you have to catch up, fast, but if you pay attention, there are some important lessons to be gathered along the way. Some are great, some are pretty shitty.
Pain is a teacher too, although I could live without it.
There’s this awful, bizarre belief on our society in the nobility of pain, that it can somehow makes us wiser, better people. There’s a nugget of truth hidden in there— some people do experience personal growth after facing adversity, but there’s no real way of knowing who they’d be or what they might have done if they hadn’t faced those difficulties, and in fetishizing their pain we reduce them to nothing more than their struggle. We also have this desire to quantify and qualify our pain: if one person is hurting, and their pain appears greater than ours, and another person is also hurting- but not as badly- then frequently the person with the lesser injury feels they have no right to speak their pain. This happens a lot around me, and it bugs the everloving shit out of me. Let’s talk about it, okay?
An example: I have these muscular twitches, called fasciculations, which are almost constantly going on somewhere in my body, generally in my quads, hamstrings, or back. They’re supposed to be painless, but when they continue on as long as they do they cause muscle fatigue and knotting, which gets to be painful and can cause some joints to lock up if I’m not careful. I’m really not very enthusiastic about it. It’s also just part of my life. So when Sam feels sore, or his back hurts (he has arthritis in his low spine- I know, we’re a mess), he’ll frequently keep it to himself. When he mentions it, he often says things like, “I feel like such an ass saying this when I know about your back,” which just… I mean, I get it. I DO. I really, really, do.
It’s just— here’s the thing: you really can’t quantify pain. It can’t be done, folks. Sure, you can do the emergency room 0- 10 scale, that’s a real thing, but when it comes to your pain vs. your neighbor’s pain, that’s just bullshit and it shouldn’t be attempted. My life, my body, my experience is mine, and I’m in it, living it, going through my day. When I experience pain it’s real and sucks and I hate it and hey, thank you for acknowledging it and how much it affects me and how shitty it is.
The reality is, though, that everybody’s pain is absolutely relative to their lives and their bodies and their experiences: while they may not have MS, the very fact that they have never experienced that level of pain most likely means that their bodies are interpreting the pain they experience now as quite distressing, and that bears acknowledging. This doesn’t mean I’m racing to my husband’s bedside playing Florence Nightingale every time he has the sniffles, but it does mean that when he has the flu, I take it every bit as seriously as he takes one of my remissions. (When that man gets sick, he gets whoa- nelly levels of sick. His immune system plays hardball.) And whatever he’s experiencing? ALSO VERY REAL, and bears acknowledging and sympathizing. People are people and we all need compassion. There is no hierarchy of pain or suffering: it is all awful.
It works across all levels. It’s hard. The phrase “first world problems” grates on me, especially as someone who’s seen the third world. I get it: when I came back from Afghanistan, it drove me directly up a wall to see someone genuinely distressed over an improperly prepared latte. It still upsets me, actually. This is not a real problem, unless you count one of perspective. Then again, my perspective was a little screwed, too: I had no idea what that person’s morning was like, or the night that came before. It’s a challenge, and it’s challenging to hold onto that mindset, but it’s worthwhile to try, lest the world get too aggravating altogether.
I hold that pain, when genuinely expressed, is relative: we don’t know someone else’s struggle, and when they talk about it, please, listen with respect and kindness. I know where I’ve been, what it’s felt like, when it has cost me and when it has given me joy. I should hope that my ridiculous body, and its random, ridiculous, DNA- induced decision to turn on me won’t deter others from talking about their pain of any kind. Pain is a language I speak, you guys. Disabled folk, we get pain. (We also have all the best pain relief tricks.)
(This message brought to you by giggling over the phrase, “multiple sclerosis is bullshit” this morning while I was getting ready to head in to the studio, by the way. Inspiration comes in the weirdest places, I swear.)