Medical science has reduced the burden of Lynne’s Huntington’s Disease expressions when she’s awake and active. One medication lets her sit still, stand with balance, walk freely, etc. This is more than cosmetic, as muscle spasms in throat and heart are major killers in the HD collection. Other meds manage the anxiety and depression which still sends so many folks suffering with HD into isolation or suicide. And a return of capabilities further lessens these negative tendencies. All of this gives joy to those who love a person with HD, and hope to the families who know it inhabits their genetic profile.
But a heavy medication life means lots of extra sleep. When she’s up and doing, her body is a war zone between the disease on the one hand, and her intentions and her medication allies on the other. For the first year, she chose the “one quality event a day” pattern, but lately, she’s been pushing herself to stay awake all day on days which have scheduled quality time. That means on other days she sleeps around the clock.
It’s easier for me to do other things on days of getting up and taking naps. These days when she sleeps all day scare the hell out of me. My intellect observes that this is high quality sleep, with lots of deep stillness. What a joyful experience for her body, to be free of the chorea. She is putting weight back on after last year’s crisis, and one reason insurance buys the incredibly expensive anti-chorea medication is precisely this, to let the body absorb more calories than it burns. Spiraling weight-loss is another way HD kills, and it turns out to be a side-effect of the chorea, rather than part of the digestive tract anomalies, what a boon.
But as good as this deep sleep is for her, it scares the hell out of my loving heart. All day long I hover nearby, searching compulsively for the expansion and contraction of life in and out of her beautiful torso. At the depths of her stillness, I sneek little pulse-checks on her outstretched wrist, as lightly as my anxious fingers can manage.
This anxiety completely saps my ability to focus on reflective writing and ministry when she’s sleeping. There, I’ve said it. Am I sharing the joy of her body’s good day of healing? Yes. Am I unable to delegate my hopes to the bottles rattling through that drawer of her dresser and head comfortably for my computer? Yes again.
These are contradictory impulses that totally rule whole days of my life, week after week. And I can’t even figure out what kind of goal I should have for resolving the tension.