What is a time of joy for many women was my darkest hour.
When I was diagnosed with multiple sclerosis, I was still ableist as hell. I was full of self- pity, so I focused on all the things I “wouldn’t” be able to do. It was all very quietly, drama-queen-esque. I didn’t go swooning around, weeping about my fate, but I was definitely freaked out, internally convinced that this was The End Of My Life As I Know It, OH MY GAWD.
Yeah. That’s really, really embarrassing to reflect on. What an idiot. I mean it, seriously: I was an asshole.
I’m not exactly the same person I was before I had MS -- it doesn’t work that way; it isn’t that tidy. You can’t separate me from my disability: I’ve been symptomatic since my teens, so really, a great deal of who I am has been formed by my disability. I wouldn’t want to try separating me from my disability; I like who I’ve become since my diagnosis.
That isn’t to say that if a doctor found a cure for MS, I wouldn’t take it -- depending on the risks involved, I might, because being in pain sucks. But I don’t feel that my life is diminished since I got my diagnosis. In a lot of ways, it’s gotten a lot better. I have a name for what’s going on with my body, and treatment, and community.
I also have all these tiny strange bits of joy. There are all these unexpected lovely things that are awesome about being me, Sarah-Who-Has-MS. They are (well, now, were) secret, and they only come with this specific life -- my life as a disabled person. They are mine, and they are wonderful, and I can’t imagine not having them. Remember when Fem Korsten wrote about how wheelchair users have the best shoes? Exactly that.
Look, I’m not going to talk about parking. Yes, I have a parking placard, and it isn’t awesome, exactly; it’s more just something I need to use.
What is awesome, though -- although it might not sound that way at first -- is having a lesion on my brain stem that makes me hear music that isn’t there. Once my neurologist confirmed that auditory hallucinations were “normal” for my condition and that I wasn’t actually losing my grip on reality, I started to really enjoy them. The music itself is haunting and distant, like listening to a song being played in the house next door, maybe; something familiar that I can almost make out, but can’t quite hear clearly. I can spend an hour just lying on my bed, listening: it’s beautiful. It isn’t always there, but when it is there it’s as though I have my own personal soundtrack, and I love it.
Also awesome: euphoria. For as long as I can remember, I’ve had these sudden surges of random joy, moments when everything seemed a hundred times more beautiful than it had five minutes before, moments when I am quietly but fully in love with the world. This isn’t mania: I don’t do anything in these moments, or make any life- changing decisions. The actual, scientific term for it is euphoria, and it’s pretty great.
I’ve tried describing this to doctors, friends, and other patients and the best I can come up with are the words “exquisite joy.” I imagine this must be how the deeply, truly religious must feel when they talk to God: I’m full of joy and love and happiness. Everything is perfect and wonderful and it stays that way for about half an hour or so. I usually just happily, quietly sit somewhere until it’s over.
After, all the endorphins leaving my system leave me blissed-out and a little sleepy for the rest of the day. That’s it. I’d always thought this happened to everyone, but that it was the sort of thing people just didn’t talk about. (What can I say? I grew up in New England, where there are lots of things people don’t talk about.) I was so surprised to learn it was part of my disease. Bonus!
Another thing to add to the list of silver linings: adaptive equipment. Yes, I need it, but ends up being awesome for a couple of reasons.
First: new accessories! It sounds shallow and flip, but I’m not going to lie, it’s fun for me. I look damned dashing with my cane. I love my canes, and I have a bit of a collection. There are two adorable wooden canes from GreenMarketGirl, a daily one for flats and a taller one for my Danskos and heels. I have a folding utility cane, a hiking stick for uneven terrain, and I’ve just ordered a flask cane. A flask cane! Concealable booze on the go! No one searches for your stash in your cane, EVER.
My sister keeps trying to sell me on a sword cane, but I don’t think that’s a good idea. I’d be too tempted to swashbuckle my way through the streets of Baltimore, which seems a sure-fire way to get arrested. I am considering a mandolin cane, though. I’m also looking for the perfect set of tassels for my wheelchair handles, because oh my god, TASSELS. I’ll probably have to make those myself.
See? DASHING. Definitely not: this is a photo of a woman with a cane who is deeply nervous around cameras.
The other thing about my adaptive gear is that it serves as my own personal Jerk- O- Meter. I don’t use a cane or a wheelchair every day, so I’ve gotten to see the difference between days when I am using a cane or a chair versus days when I’m not, and the difference is huge.
I can cut through the chaff pretty quickly with gear: there are some people that were chatty and friendly yesterday who will pretend they don’t see me when I’m am using a cane or a chair. Awesome! Now I know I can save my spoons -- I don’t need to spend tons of energy on that person. That’s really useful information! I have a limited amount of strength and energy, so it’s a genuine gift to be able to marshall those resources and save my attention for all of the wonderful, amazing people who are supportive, funny and kind and who see me, the whole me: disabled Sarah, who some days comes with a cane or a chair or just shoes.
I’m not going to pretend that the silver linings and small perks of this life make up for my disability itself -- MS is a tenacious, mean bitch, and sharing my body with this disease isn’t simple. It isn’t easy, but this isn’t an awful life, either. What I mean to say is that there are compensations, and that while this isn’t a cakewalk, I don’t feel one ounce of sorry for myself.
There’s this perception that the lives of the disabled are somehow diminished, or that we carry some weight or sadness inside, and I want to dispel that. My life is less convenient than it was; more frustrating, certainly, but also full and happy and there are all these tiny, sweet little things I would never have thought about before, like being pre- boarded on flights and rollercoasters, or the way we speak to each other -- our jargon, literature and culture, which is a subject larger than I could begin to fit here.
These things don’t fix everything, but they can fix a day, and sometimes that’s enough.