Snow day!

The view out my window this afternoon

It’s all shiny and white out my window this afternoon. We had our first significant snow of the season, falling overnight and through the morning. The local stations were predicting 5 to 8 inches, plus high wind, so a lot of the town shut down for the day, and the traffic report showed that the roads were pretty miserable for a while. The actual snow totals were a little lower, and Omaha is well equipped for snow storms, so already almost everything is back open and getting close to normal. But it’s still shiny and white out my window, and I’m enjoying sitting here and appreciating it.

In a different life, if I had a snow day and no need to travel or work, I would’ve loved a day like today. Maybe I’d do some baking, watch a movie, sit under a heavy blanket and have hot chocolate. Or maybe I’d put on my boots and traipse out, checking to see if my local bakery was open or maybe finding myself a park where I could appreciate the quiet that comes with the first snow.

Of course, that would be a different life. In this one, I’ve learned three new things in the last 24 hours – things I had already known in my head, but now the rest of my body gets the experience as well.

First is that this is yet another set of environmental conditions for my spinal cord-impaired body to experience anew. It’s another example of how a spinal cord injury is so much more than just paralysis. I now have poor circulation, especially in my extremities, because I lack the muscle control to help my heart out with some of its circulatory tasks. A day like today – with a wet cold in the air – means I have a little more trouble staying warm or just regulating my temperature in general (the difference between too warm and too cold feels like just a puff of air). And because pain is also such a weird thing, I’m still getting to “enjoy” the ache in my knees that comes with a cold day, even though I’m not feeling much else in my legs. I’ll go sit by my fireplace once I’m done writing here, but there I will need to be careful not to get too close, or too warm, because my body lacks the warning signals to give me if my legs get too close to the heater, and my wheelchair could heat up and transfer that heat to my body without me even noticing. Lots of fine lines, even just around temperature.

A second discovery has been a bit of grief around the change in seasons. Has winter sets in, I won’t be able to go out exploring as freely as I had been the last few weeks. Snow itself isn’t a huge problem– an advantage of a power wheelchair like mine is that it has enough weight and a strong enough motor to get me out even before the snowblower finds its way to my apartment. But again, it’s the cold. Even if I want to dash around the corner, I’ll need to bundle up head to toe, which means I’ll need someone with me to unbundle me when I arrive, so that limits my solo explorations. And even with that, my wheelchair will absorb the cold and continue to radiate it onto me, and my body will be tender even if we get the balance just right between keeping me warm enough but not too warm and not too cold. Just like all of the other “first seasons” that I’ve had since my spinal cord injury, I’m sure this one will get easier to navigate as I move through it – finding good strategies, collecting warm gear, testing and understanding my limits, and so on. But, of course, those learnings will take time.

Third, and the one that has weighed most heavily on me these last 24 hours, is recognizing how reliant I am on my caregivers making it into work no matter the conditions. There’s a lot that I can do independently at home, and I’m not desperate for care the same way that other folks might be (I’m not on a ventilator, for example). But I can’t go to bed without someone here to help me, and I can’t get up in the morning without someone here to help me. I can’t even roll over at night without someone here to help me. I’m fortunate that I am with a good agency who has stayed on top of whether folks are making it in for their shifts, and my caregivers are committed to me and won’t leave me uncared for. And I’m fortunate that I’ve had great occupational therapy and strength training so that I can, for example, fix myself a meal if no one is here to help me. But last night, when the National Weather Service issued a winter storm warning and advised people not to travel, I swallowed extra hard.

I’m not alone in feeling these challenges, as this cartoon that I spotted in my Facebook feed yesterday shows:

Of course, now that I’ve typed all that out, those aren’t really new learnings, are they? There are plenty of times when I worried about travel not being advised, either for me or for participants in activities I was designing/leading, whether that’s students or volunteers or people who have paid for a program. And there are so many workers and others who don’t have the luxury of choosing whether or not to travel, for example, on a snowy day. We all feel the changing seasons differently, with grief and/or possibility each time. And bodies feel it too, even if many folks don’t have the chance to sit and mullet over like I do.

(Ha – I’ve been using voice to text and trying to correct it as I go along, but I think I’m gonna let the mullet stay!)

And finally, I’m interested in exploring a little more of the ways that I normalize some of what I’m experiencing (I worry about the “do not travel” statements, but so do lots of folks) while also holding the radical fissure of my current experiences ( I can’t even roll over in bed without help!). It’s an interesting sort of relationship that I want to come back to you later.

Anyhow, snowy weather outside means more time to write inside, plus my desk is in front of this window so I can appreciate the weather from here without being out in it. So look for more writings from me soon.