My Catholic upbringing has me feeling guilty. To paraphrase, “forgive me readers, for I have sinned. It’s been 10 months since my last post.” But you’re all friends who I’m sure will forgive me. Thank you.
In those 10 months I dealt with recurring caregiver issues, a new food allergy to dairy, and physical and emotional symptoms of stress. This has been an odd year, almost like starting over because I have been rethinking nearly every aspect of my care – nutrition and feeding system, all my equipment, and caregiver schedules/duties. A lot of second-guessing myself. With ALS there has been, for me, 2 years of fighting, 3 years of determination (which got me past the infamous 3-5 year average survival), 4 years of relief and applying myself to be useful, and now I’m in the midst of a few years of adjusting to what has changed from a death sentence into a long-term disability. Somehow, in my determination to beat the odds, I never mentally prepared for what that would be like! As I look at years stretching before me of being essentially paralyzed, dependent on others and having to ‘put up with’ things not done my way (or even, not done at all), and at the same time feeling the strain that puts on those kind-hearted people who are trying to help, it’s a lot to take in and find a balanced outlook on the situation.
But still, I am alive and well (other than this niggling little ALS thing), and wanting to get back to writing. No more waiting for everything else to be resolved!