I bounce from high to low so quickly I can almost feel the pull of gravity like a bungee chord keeping me tethered to the ground and not quite able to reach the clouds. High-witnessing a friend's career-capping appointment; Low- the Oregon summer heat arrived and my body is protesting. I am sitting here wondering at the 'price' MS will charge my body for the afternoon trip to see my friend sworn in. Four hours sitting in a car, a reception in the 90+ degree heat--will the cost be two days in bed, increased weakness, or a full MS meltdown? And yet, when a friend of 20+ years achieves such an honor I am willing, no, more like unwilling to allow MS to dictate my life and choices.
The decision to do a thing, no matter the toll on my body, is relatively easy for the biggies; births, deaths, celebrations, and milestones. I can shine it on and be my funny, charming self while disregarding the 'she looks so good,' rhetoric that follows me like a trail of rapidly popping bubbles. If these same well-meaning folks could watch a trailer of what my next hours or days will probably be like--they would know that MS is a relentless task master and a few hours of shiny, happy Janine is just a cover for the reality of this damnable illness.
It's funny, but I think my hubbie pays the highest price for my forays. He is the one who will clean up the mess when my weak hand drops the bottle of salad dressing on the floor. He is the one who brushes my teeth and applies deodorant. He is the one who is awakened during the night when my legs cramp and twitch. And, he knows, better than anyone, the impact that 'real life' takes on my body.
All of this bounces around in my head; the pull between wanting, for a few hours, to be like everyone else and without a care, attend this happy, momentous event, weighted against the reality of life in a secondary, progressive MS body. I feel fierce anger that I can't control or flip a switch and make this all go away-just be a woman in a pretty dress attending a party. No amount of rest or strategic planning will satiate the MonSter.
Who knows, maybe today will be different, or at least better, than history clearly indicates. Maybe I will come up with the right formula of rest stops, air conditioning, and naps so that by this evening I am not in full melt down. I understand why virgins were sacrificed to volcanoes--I would do almost anything to stop the flow and save the village.