Just as I knew it would, ALS has become my warden. Can’t go out, it’s too cold. Can’t call a friend, they don’t understand my speech. Hell, no one does. I can’t even complain out loud.
I sit in my wheelchair watching the disarray around me. There are Christmas decorations to be put away. Coats to be hung. Laundry to fold. None of these are on my bucket list. In fact, there’s no point to a bucket list because I can’t write it or accomplish it from here.
Every aspect of my life is dictated to me by the ALS that holds me prisoner. I used to feel sorry for a cousin whose Dad would constantly ask her to fetch him things while he sat in his easy chair. Now I’m that uncle. Even though I can get around most of the house, I usually cannot reach the items I need. One misplaced piece of furniture can ruin my best laid plans. And if an item is moved from its usual spot, I can spend the good part of a hour searching for it before I give up.
Visiting hours too will soon be on a well-orchestrated ALS lockdown. The need for a nighttime aide to get me ready and into bed will see to that. But in truth, visitors are rare.
ALS takes control of caregivers too. It is a hard disease to manage because it constantly changes its modus operandi. Tuesday’s clinic visit was exceptionally hard on both my husband and myself. My forced vital capacity fell another 10 points. We met with the pulmonologist who ordered a Trilogy machine to help fully inflate my lungs at night and a Cough Assist machine to help clear out built up mucus. The worst was yet to come.
Listening while the doctor explained a tracheotomy and ventilator was a real depressant. Although I asked for the information, my PBA kicked in so she had to stop several times. Now armed with the information it is clear that it is something I will not do. Even though it could extend my life by two years, what kind of life would it be? It requires 24-hour care which few people can afford. So when my time comes to an end, I will go peacefully to sleep. I will die in the general population rather than live a life of solitary confinement.