One year ago today, Matt started his first day of outpatient physical therapy. Due to the therapist’s schedule and Matt’s appointments at Columbia, he wouldn’t start the cognition/speech therapy for another week.
So often our schedule was out of our control. Follow up appointments, MRIs, and infusions were assigned to us—a single time was offered with a take it or leave it mentality attached—and we had to scramble to fit our lives around that schedule. Kessler was no different.
When we called to coordinate Matt’s outpatient therapies, the coordinators at Kessler told us that they could not guarantee a time. We could make a request, but the coordinators let us know that timing was based on need and the availability of the therapists best suited to work with Matt. That meant, he could have therapy at 8 a.m., which would make school drop off difficult, if not impossible, or 3 p.m., which would make school pick-up difficult, if not impossible.
We got lucky, which is not something I say often in this story. Matt was assigned therapy on Monday, Wednesday, and Friday from 10:30-12:30. This meant I had time to get the kids on the bus, get in a run or a trip to the grocery store, drive Matt to therapy, and be home in time for G and H and the whirlwind of activities and playdates that followed the end of the school day.
I remember Matt’s first meeting with the physical therapist. The therapist greeted Matt and told us that the day would only be an evaluation. Every few weeks, he would re-evaluate to ensure that Matt was making progress. I do believe he made progress at therapy, but by the time the next evaluation came along, Matt was in another down cycle and the evaluation didn’t show that progress.
While Matt worked with the therapist behind closed doors, I sat in the crowded waiting room and looked around at the strangers who, like me, were waiting for someone to emerge from behind closed doors. I wasn’t surprised to find that I was the youngest in the waiting room—Matt and I were always the youngest patients in the room—but I was surprised to see how many friendships had developed among the caregivers, who plopped down next to each other after delivering their loved one to the therapist and fell into a conversation like old friends.
Many of the patients were stroke victims, but their road to recovery didn’t look too different from Matt’s. The challenges the caregivers faced didn’t look too different from my own. And yet I remember feeling separated by more than years. I remember sticking headphones into my ears and immersing myself in plotting, outlining, and writing. Because I’m an introvert (and antisocial, apparently). Because I had precious few hours to escape reality and I wasn’t going to forfeit the time. And also, honestly, because I didn’t want to become a part of this world of outpatient caregivers.
I didn’t want to believe this might be our life for however long. I wanted to believe we (Matt and I) were just passing through outpatient Kessler. And Matt agreed. While the 10:30 start time worked for him at the moment—a slow morning and time to nap before G and H returned—he was already wondering how he could return to work.
When I think about October 23rd, this first day of physical therapy, I think only of how ready Matt and I were to move onto the next step. How sure we were that this was only a short phase. When I think of October 23rd, I see this persistent truth: after every down cycle, no matter how low we’d fallen during that down cycle, we somehow always found a way to believe the worst was now over, normal was within reach.
Possibly because we were naive. But mostly, I think, because we didn’t know any other way.