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.

lovely day

finally – it’s not raining (in maine), sunny and a lovely summer day. perfect for my daughter’s 18th birthday celebration/graduation from high school/college send off party. it is especialy sweet because 10 years ago, when she had her heart transplant, the best we were told we could hope for was that she would live long enough to graduate high school. at least, that’s as far ahead as we dared look back then. so here she is, almost ten years out, not only going off to college, but she’s perhaps the healthiest person in the family. brings a tear to me eye.

but (and there’s always a but) with it being 75 degrees, i am pretty much quaranteened to my bedroom, where the ac is. heat is my kryptonite – it immediately sucks all my energry away. i was unloading the dishwasher this morning, and my wife made me stop, told me i should “save my spoons” for the party. (anyone who doesn’t know about the spoon theory, go here.) the creator of the spoon theory has her own web site, butyoudon’tlook sick, which i highly reccomend.

anyway, she sent me up to my room to chill (literally) and gave me the idea for a t-shirt design, “Save The Spoon,” which i will hopefully be able to follow up on soon. (please don’t steal my idea!) she said she understood how hard it was for me to feel that i couldn’t help or be an active part of the preparations. and it’s true, i have a very hard time not feeling useless, thinking that the word “invalid” breaks down to in-valid. i hate feeling in valid.

i see my son, home for the weekend from his new hampshire mountain job out in the yard setting up a croquet course, knowing i won’t be able to play. i know, i need to invest in a cooling vest so i can brave the kryptonite, but for today anyway, i’m stuck here in the fridge.

there’s more, but i’ll save it for later.

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heat is my kryptonite

superman51.mp3i was out this morning, hoping to do some photography, but i was too early for any people to be out and about, so i just came home. my daughter had some friends over the other night to sleep out in the tent, and i started to dismantle it, but found that, even at 9 in the am, it was too hot for me. i forget, and am amazed by, how quickly heat sucks the energy from my body. really changes how i approach summer. i guess i gotta get one of them cooling vest thingies.

superman51.mp3