My Kryptonite

Oh, yeah. Now I remember. Maybe it’s a feature of my MS brain (what’s left of it), or simply a human-evolution survival mechanism, or maybe it’s just me, but when the weather turned beastly hot the other day, it took me a bit to figure out why I was suddenly feeling so weak. Oh, yeah, it’s hot, it’s my kryptonite again. I remember years ago, when MS was just starting to rear it’s head, or maybe this was just before, on the first hot day of the spring, walking from the back door of my office building to my car in the parking lot and being mystified, and a little frightened, at how difficult it was to go across those few dozen yards of tarmac. I was still in the “What the fuck is this MS shit all about,” and the “what the hell is wrong with me,” phase. (I still ask myself, and the cosmos, those, and other, questions.) I had no idea what MS meant (topic for a future post), and was learning stuff as it happened.

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When I first experienced the power of heat, I really didn’t know what was going on. I knew about the foot drop, and the optic neuritis, and I had read about fatigue and lassitude (still believing that this was stuff I could understand and grok by reading about it), but, wham, that first wave of heat-induced weakness caught me by surprise. Oh, so this is heat intolerance, eh? Lovely. I gotta deal with that, too? (How innocent I was. Sigh.) Fortunately, I live in Maine, where we don’t have sweltering hot days very often. And after all these years, I still get caught by surprise, and get reminded all over again.

So, yeah, heat is my kryptonite. I wish I felt like Superman the rest of the time. But, hey (as we say in Maine), at least it’s not snowing.

560Click here to buy my t-shirt! Show the world you’ve got spoons. 100% cotton t-shirt is perfect for summer. Wear it everywhere! Original artwork by Val Sivilli. 50% of profits go directly to the National MS Society.

Field Trip: The pot store, pt. 2

la-confidentialThis ain’t your dad’s marijuana. At least it certainly ain’t my dad’s marijuana. This stuff I got is far more potent than anything I’ve ever had before. It doesn’t smell like it, it doesn’t taste like it, it doesn’t even look like it. When I opened the packet, I was met with a heady aroma, floral and sweet and spicy. Inside the packets were tight buds of pale olive green with strands of bright red woven through them. Definitely not the baggie of stems and seeds and shake that I grew up with.

I’ve written and rewritten this part of the story several times. After about two weeks of investigation and testing, I’m still not sure if it’s doing what I want it to. I was hoping for a slam-dunk, a “Wow, this stuff is amazing!” moment. I was hopeful that at the very least, it would ease the painful and random Charlie-horse leg cramps that keep me awake most nights, and maybe even help me get off the drugs I take for insomnia. I was hoping to be amazed.

What I’ve found is that in the two weeks that I’ve been smoking it before bed (and often again during the night), I’m having much less cramping. Not no cramping, but fewer episodes, and less intense. Nothing amazing, but it’s better. Nothing else I tried made a dent – not stretching, not medications, not “eat a banana before bed.” Cannabis has not eradicated this problem, but it is much better. I will need to go back to The Store to talk with the pot-istas and the experts, and see if we can fine-tune the product, but for now, I’m happy with the results. I’ve enjoyed doing the research and field testing – no hardship there.

In the meantime, I’ll just be holed up in my laboratory continuing my scientific investigations. Let’s hope The Man doesn’t get all up in our business.
560Click here to buy my t-shirt! Show the world you’ve got spoons. 100% cotton t-shirt is perfect for summer. Wear it everywhere! Original artwork by Val Sivilli. 50% of profits go directly to the National MS Society.

 

Stop waiting to be ill enough

You’ll never feel ill enough. There will always be a little voice in the back of your head whispering that you’re fine, really, you’d be okay if you only tried harder.

That little voice isn’t the voice of reason – it’s the voice of internalised ableism, and you owe it nothing.

Find someone who can help you. Apply for the benefits you need. Use the mobility aids that make your life easier. Give yourself a break.

You deserve it. You are ill enough. You aren’t faking it, you aren’t mooching. You’re surviving, and you deserve a round of applause.

Found on the blogKipple Kipple Everywhere.

One morning in Maine

How nice to wake up in the morning (my favorite way to start the day) to find that my mind wasn’t racing off in anxiety driven confusion, my legs weren’t cramping, my arms weren’t numb, my back, or neck, or shoulders weren’t aching, and I didn’t have to get up RIGHT NOW to pee. I was actually able to lie back and close my eyes and breathe for an hour. A rare treat.

This sings me to sleep, and often plays on repeat all night. It is a comfort, somehow, to wake in the middle of the night and hear is softly playing in my ear. And to wake up with it repeating in my mind.

This is what I’ve been talking about.

I’ve been away from this blog for quite some time, dealing with some complicated shit. More about that later. But for now:

This is what I’ve been talking about. Ordinary people, doing ordinary things. Ordinary people who happen to be in wheelchairs, featured in commercials. Better they should be in mainstream TV shows and movies, but I’ll take what I can get.

  • The wheelchairs are not the focus of the story, they’re not even important to the story. This little screenplay could have been acted out equally as powerfully were the actors not in wheelchairs.
  • I love the fact that this drama shows people in wheelchairs being physical, active athletes, able to give and take on the court. I love the fact that this is not about people in wheelchairs. This is not about disability.
  • I love the fact that it proves that wheelchair users are not “bound” to their chairs. Just as we are moving towards more inclusive “person first” language we have to move away from the image of people in wheelchairs being dependent and stuck or trapped. For these men, like for everybody else who uses a wheelchair, the chair is a vehicle for liberation.
  • I love that the story empowers the men in the wheelchairs.
  • I love the fact that the kids are fully included in the father’s life and accepting of his disability, perhaps not even seeing it anymore.
  • I love the fact that Toyota stands aside, and can promote their message and their product (I still don’t know what model vehicle is being promoted, but, like the wheelchairs, it doesn’t matter.) without having to shout.
  • I love seeing myself, or someone who looks like me, portrayed this way in a mainstream commercial. Perhaps only marginalized people will understand this. (A topic for a further and lengthy, discussion.)

In the end, what makes this a really great commercial is that the product (some sort of car, I think…) is only a vehicle (pardon the pun) for the drama of a group of men playing a very physical game of basketball, ending the day without holding grudges.

I hope this film can lead the way toward more fully inclusive roles for people with disabilities.

Did I mention that I love this little film? What do you think?

Cruisin’, part 2

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I ‘ve been out and about with my bad motor scooter – taking the short bus to Freeport (home to Maine’s #2 tourist destination, L.L. Bean, and a very accessible little downtown), and to Falmouth, and yesterday into Portland for a spin around the Museum of Fine Arts (to be dazzled by Georgia O’Keeffe, Marguerite Thompson Zorach, Florine Stettheimer, and Helen Torr) – and I was immensely pleased with the SmartDrive‘s performance at every location – brick concourse, concrete sidewalk, museum floor. The only hesitations were from my inexperience and lack of trust. Even when it popped off the chair, it was doing what it was supposed to do. It was easy to reattach, and each time I learned a little something new. Brilliantly simple.

There is always a “but…”. I wonder why there isn’t some sort of geared wheel hub that would offer a transmission brake to slow the chair when going down hill. Relying on my grip on the handrims is both difficult (was that smoke rising from the palms of my gloves?) and dangerous if my hand strength should give out – look out below! Bike mechanics, engineers, makers and tinkerers – can this be done?

Allow me one more ranty rave – the SmartDrive is a life changer. My solo outings I would never have even attempted under my own power, knowing how limited my strength can be. One of the things I used to love to do, and one of the dearest things I lost to disability, was wandering the streets with my camera. Thanks to the SmartDrive, I have that back again. Now I look at the bus map and realize that, theoretically at least, I can go from Yarmouth to destinations on my local route, including the Downeaster train in Portland, which offers me essentially…everywhere. That might not seem like much to most people, but as someone for whom those horizons previously came with enormous obstacles, being able to look at the map and see such possibilities is, pardon the expression, huge. A simple hunk of technology like the SmartDrive is empowering and liberating.

Discuss: “It’s exciting that a woman who is transgender can go to the bathroom that she identifies with, bizarre that the disabled community can’t.” (I cannot find the attribution for this.)