One year ago today, Matt returned to therapy—his first time in a week. While Matt went to physical therapy, the cognitive therapist pulled me aside. He said he’d completed an assessment on Matt and noted that Matt had not made any progress, that, in fact, he’d taken a step backward. The therapist didn’t know all that we’d learned in Matt’s most recent MRI and I didn’t share it. Not yet. I listened as the therapist told me that Matt would be ineligible for treatment if they didn’t see forward progress by the next assessment. If they couldn’t help him, they wanted to give the time slot to another patient who could be helped.
It made sense, but that didn’t make it any easier to hear.
Two years earlier, on November 20, 2016, Matt and I flew to North Carolina—our first trip to Duke. We arrived in the late afternoon, checked into the hotel that would become too familiar, took a shuttle downtown, and went to a tapas restaurant. I don’t have the text messages from this night, but I remember it as one of our most fun nights. We didn’t feel like we were in North Carolina because we had an early morning appointment to meet with doctors to discuss a dangerous, lethal cancer. We felt like we were any other couple, out to dinner without the kids. (Actually, I remember being surrounded by college kids and telling myself we were indistinguishable from them, just a couple of college kids out to dinner. Ever hopeful. Ever delusional.)
Two years ago today, over a pitcher of sangria, we were giddy with hope. One year ago today, we were staggering down a road toward a distant glimmering hope.
On November 20, 2017, we had seventy-five days left. My memory of these next seventy-five days is unreliable at best, completely non-existent at worst. When I sat to write today’s post, I read the text messages I exchanged with a friend, and then continued reading through November and December—I couldn’t yet face January. As I read, I felt as if I was reading someone else’s story. Or, more accurately, someone else’s nightmare.
There were so many defining moments, so many life-changing-world-tilting-off-its-axis minutes, and I don’t have a clear memory. And I can’t help but wonder how it’s possible to remember the exact color of the sky the night Duke first returned our call in June 2016, but struggle to cobble together memories of our last Thanksgiving together.
Another question, along with all these questions posed yesterday, that may never have an answer.
Specific day-to-day events are gone from my memory, but I remember the feel of these last seventy-five days. Those first few moments every morning before reality crashed back in. The way the effort of trying to keep a family of four from falling apart sometimes felt too heavy, too lonely. That feeling of wanting to just go home, knowing that the home to which I wanted to return had vanished, because sometimes home is a person, not a place.
The next seventy-five days are difficult to read, tragic and unforgiving. The next seventy-five days tested us and broke us. But the next seventy-five days also define our story more than any of our other days. We fought against that not-so-invisible monster even when it was too hard, we pressed forward even when we fell further from our miracle, we found a reason to hope even when it seemed hopeless. We wrote a story worth telling in those seventy-five days. Tragic and unforgiving, and bursting with hope.