A few days after the barn retreat, Priscilla discovered a large, rough bump on her arm. We weren’t sure what it was. We didn’t know whether it had any connection with her other symptoms. But there was certainly something ominous about it. Similar bumps would come and go on her arms and legs in the months ahead.
In retrospect it’s clear that this was a “lateral sclerosis,” a hardening of the skin on the sides of the body. This was one of the two symptoms that ALS, or amyotrophic lateral sclerosis, was initially named for, before its cause was known. (The other symptom was muscle wasting, described in the adjective “amyotrophic.”)
A few nights later I had a dream in which Priscilla and I went out to a restaurant. We were heading for a table when the maitre d’ told us not to sit there because the flooring was damaged below it. But Priscilla said it was still all right. A married couple was sitting at the table with another man who had a 187-ml wine bottle.
At the time I didn’t understand the dream, but it was so vivid that I recorded it in my journal. Once again in retrospect, its meaning is clear. The significance of the quantity 187 ml was that this made the wine a “single-serving” bottle. I was seeing my present and my future, marriage and singleness, at the same table. But the flooring was still safe. The ground wasn’t about to fall out from under me just yet. Subconsciously I was realizing that the rough bump signaled a fatal disease, but one that would take time to develop.
At the end of September I performed the wedding of the Grad IV alumni couple we’d gone to Nashville to counsel the month before. This was in Kentucky, where the bride had grown up. The wedding was a joyous celebration that bought us back together with a number of students we’d grown close to during their years at Michigan State, who were now scattered around the country and world. I’ll say more about what happened on this occasion at a couple of other points later in the story. This wedding was our seventh in nine months! Another Grad IV wedding would follow in December. Priscilla just loved these events and I was grateful that she could attend so many of them while we were still able to travel.
Getting gait training and using a cane were really helping Priscilla walk on level ground, but she was having increasing difficulty getting up stairs. This was especially true of the two steps that led from our garage into the kitchen, because while the first was of regular height, the second was extra high. She figured that if she could attach some handles to either side of the door frame, she could grab them and pull herself up and in. So she began to think about just what kind of handles these should be. Then it dawned on her: We already had two handles that would be perfect, and they were waiting for her only a few feet away from the door!
Five years before, she’d helped a friend with a decorating project that had involved painting vertical stripes on the walls of one room. The friend’s husband had created a brilliant tool for this task. He’d fastened a level to a thin board that was the width of the stripes and the height of the wall, and attached two smooth wooden handles to it. As Priscilla’s assistant, I would hold the board by these handles firmly against the wall next to the stripe she’d just painted with a roller the same width as the board; check the level to ensure that it was vertical; and signal her to paint the next stripe along the leading edge of the board. The project was finished in no time this way, and the creator of this ingenious device encouraged us to take it with us, in case we ever needed to paint stripes anywhere else. It had been leaning against a wall inside our garage ever since.
Now Priscilla got out her cordless drill and, using it as both a drill and a screwdriver, she removed the handles from the board and attached them to the sides of the door. They were just the right shape and size for her to grab securely and pull herself into the house. This was a triumphal moment and the joy from it lingered for many days.
A few weeks later, however, early one morning before it was light, I woke up from the realization that Priscilla was awake herself. “What are you thinking about?” I asked. She replied, “I’ve been wondering whether someday I’ll go in that door up a ramp, in a wheelchair.”