I bury my fear and anger in physical activities, alpine touring and cycling. Continually refining the tools required for these activities creates a sense of improvement and preparedness for this small aspect of life, training, researching gear, fills the larger void of knowledge and preparedness with regard to Kate. Planning a glacier crossing in British Columbia or training for CX Nationals in Austin Texas provides a set of challenges with clear options, solutions and measurable goals with relatively inconsequential liabilities. Complete failure at CX Nationals has little or no down side, finish last and still have a great experience, dust off and get ready for next year.
Along with the pattern Barb and I see with Kates well being, a pattern in my behavior has emerged. When Kate shows the first signs of a down turn I make a concerted effort to get as much sleep as possible until her symptoms degrade to include sleeplessness. Then I shift gears, to deal with the sporadic sleep Barb and i get during this phase, I research some made up “need” that provides a glint of promise to improve my Alpine Touring experience or ability to go fast on a bike. I look for improved skis, boots, bikes, clothes, beacon etc… study more avalanche reports. Fabricating new goals provides two things:
- a distraction from my inability to help Kate when she feels awful and has headaches that last for days.
- provides a focus for the hours spent awake each night in an attempt to comfort her in the absence of a real solution. I sit awake with an iPad in my lap and incessantly read through tech specs and gear reviews in the pursuit of “better”.
We brought Kate home for the first time in March 2010, Barb and I took turns staying up with her at night, I spent the awake time researching seizures, medications, medical facilities, doctors etc. After three years filled with incremental improvements in our understanding and ability to “manage” Kate’s needs, I find myself hiding from my inability to “fix” Kate. Stuffing my frustration into the bottom of a backpack and hauling it to the top of Big Mountain like Sisyphus.