Saturday, August 15, 2009

Mastocytosis and Heat

There is an instant sort of weakness that I feel when I encounter hay. Well, more specifically hay dust. I've described it in the past as, "the sort of feeling I imagine Superman feels upon being close to Kryptonite"...instant weakness.

It turns out that heat produces the same effect in me.

I find this most disconcerting.

The past two days, I've taken my daughters to our local favoured swimming hole. It's a gorgeous little piece of heaven that our dear dear friends Jay and Erin share with us. (A Landscaper and a's THAT for an amazing combination!!?!?!? One tells me that they haul dirt; the other how they haul animal shit. But whatever paths or vocations it is that brought us together, these past two days we have enjoyed the warm waters of our nearby lake sitting on land that belongs to our dear friends, who are warm and wonderful enough to share it with us. It's a blessing.) The trees are a deep deep green; the water is sort of bluey brown and completely clear (and you can see to the bottom of the lake where it's not too deep.) We share the waters with fish and snapping turtles; we share the land with numerous birds, squirrels, chipmunks, and blue-tailed skinks. We share the blue, white-puffy-cloud-dotted, sky with our neighbours. It's incredible. Except for the heat.

Instead of penetrating my skin, diving under the epidermis and warming my Being, I find the sun exhausts me. I feel myself drained, exhausted beyond comprehension; dizzy; heavy; itchy; & pained while trying to smile for my gorgeous children who are frolicking gleefully in the waters. I make myself share and inhabit this time with them; I push myself to the brink of finality in trying to be something that I'm not...I'm not ok in this summer weather. Frak. In truth, I can manage maybe 10 minutes of this weather before I begin to literally, feel ill. I have to use Epispray and Benadryl, and Prednisone and a slew of other meds I'm supposed to...

This is just wrong.

I manage about 2 hours, but I am ill for it. But I haven't died. That sounds melodramatic, doesn't it? We barely get home on our bicycles, thankful that it's downhill the entire way home to our driveway. Our house is on top of a fairly steep hill. Of course.

It's a blessed thing, this old farmhouse. It remains cool inside its walls...comfortable without any air conditioning unit buzzing away beneath the house or in the window. It's sooooooooooooo comfortable in here. At home.

My oldest daughter, 11 and half, puts the kettle on for tea. She wants to make tea these days. Tea, in our family, is a right of passage. Signaling the onset of womandom, we are permitted to first fill the kettle; then, permitted to plug it in once we'd mastered filling the kettle to the point where it's enough water for the teapot but not too much that it will bubble and spill over the lip of the shrieking kettle, spilling hot clear runny lava over the kitchen countertops and diving off the counter and onto the green painted kitchen wood floor. She has learned to make tea in a cup; and in a tea pot. Soon, we will learn how to make a tea party for friends; we will learn to serve tea. Tea is comfortable in a cooled farmhouse, on a hot summer's day. My daughter's offer acknowledges my physical discomfort, weakness and inability to make my own tea. This guts me on a deeper level. I've never wanted my children to parent me. I've said this to her before. Her response is this, "Mom, it's just a cup of tea. It's ok for me to make you a tea. Please sit down, rest and let me get you a cuppa, k?"

I refuse to flop on the couch, despite wanting to. I don't want my children to see that I am a 'flopper' or a 'flop'. I sit down. My bones hurt like I have the world's worst flu, or someone has taken a mallet to my bones. I'm too young to hurt this much. My youngest daughter runs to get a story book while my oldest daughter puts the kettle on. Tea and a story in a cool farm house, on a hot summer's day. Doesn't get much better than that. And, despite wanting to close my eyes to fall heavily into a full REM sleep dream, I stay alert for tea and a story with the girls.

Tea is served now. Just in the past two weeks, she has been steady enough to carry tea from kitchen to living room. She's doing great. The girls snuggle up under each arm, so that my shoulders are in that weird position that gives me a ready-made headache if I sit like it for more than five minutes. My shoulders are almost at my ears and my daughter begins reading. I'll take the headache (I hurt already) because this way I can hold them each to close under my armpits, like a Momma bird encapsulating her babies under her wings.

We each take turn on a page and try to read with feeling; with passion; without, all three of us are fearless readers. "Little Missy Bossy" or "Mr. Bump", "The Giving Tree" or "The Boy Next Door"'s so fun reading stuff with my children that I loved reading when I was their age. They have other tastes too, and I enjoy reading that stuff with them too, but there's something poetic in shared books of enjoyment.

We can thank the heat for bringing us here.

Were I feeling 'better' I might be inclined to clean the house all day long until it was, well, past perfection. Ironically, no-one ever comes to visit on the days when the house is this clean. Instead, I'm settling for being aware of my own good fight these past couple of days. My fight to maintain as much joy and normalcy as I can muster, and not give in completely to the weakness that washes over me. I fight instead of settling for paralysis. I have to rest at some point; a certain point...and I'm learning where that is. But I know where it isn't, and that's at giving up. I haven't given up. I hold out hope that we will find a cure. I hold out hope that one of my vital organs won't fail me before these gorgeous girls hit High School, or travel the world, or go to University/College/whatever they want, or find life partners or make babies. So for one afternoon, I withstand as much heat as I can to make sure that they enjoy one of the many reasons that we moved up here in the first place...the lakes, the sun, nature and the water. I won't give up.

So, instead of being pissed off at the heat for bringing me down; and for my failing body that can't fight the strength of the heat, I'll thank it for the tea and story time. It's worth every moment of presence with these great children.

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