April 21, 2017: Is This Normal?

Around April 21, 2017, I was getting a taste of the life Matt had previously shielded me from. Because starting around then, I became the one who called and emailed the clinical trial nurse at Duke, usually with an edge of panic to my voice I hoped they wouldn’t notice because I didn’t want to seem irrational—no crazy wife here. The assumption being, of course, that if I sounded too frantic or too emotional they’d dismiss my concerns.

The message from Duke hadn’t changed: we had nothing to be worried about. Of course there’d be some symptoms—the tumor hadn’t been removed—and swelling is normal after the polio procedure. Okay, true, and we’d been warned about the tumor’s proximity to the language center, but—is this normal?

One year ago today, only one question burned through our nights and we pinned all our faith on the answer: Is this normal? If the average timeframe for swelling related symptoms is six months, why are we seeing symptoms crop up at only three weeks out?

The official answer was: sure, everyone reacts differently. Which is an insanely infuriating answer. At least I think so. It felt and feels dismissive and the subtext, in my mind, was: it’s an experimental trial and sixty-something people have gone through this procedure, there isn’t enough of a sample size to define normal, so sure, anything is normal.

Wait for the MRI in less than two weeks and don’t worry, they said.

But, it’s easy to say don’t worry from thousands of miles away. It’s less easy to say it’s all normal when your daughter wakes up in the morning and proudly tells you she finished reading the bedtime book last night because her daddy couldn’t. It’s not so easy to wait two weeks when everyday brings a new nightmare and you feel as if you’re walking a tightrope without a safety net below.

Worried was out the window. We were terrified. And I do mean we. Because as awful as it was for me to watch Matt deteriorate, it was unimaginably more horrifying for Matt to see himself deteriorating, to realize his brain was betraying him at every turn and an act as simple as reading was now a challenge.

And yet, it didn’t slow him or us down. Thanks to modern technology, I can re-trace all our steps from April 21, 2017 and see that the frame of our normal life was there. I know which exercise class I went to, what Matt was working on at the office, and where we went to eat for dinner. If I wrote a story from that, it would seem as if we really did have nothing to worry about, everything was moving along as it should and what were we freaking out about. But nothing was normal, not our life, and not Matt’s reaction to the polio, and all we wanted was a straight answer to the seemingly simple question: is this normal?

My text message to a friend about my latest phone call with Duke.

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