January 3, 2018: Projects and Goals

One year ago today, after another morning of nothing but running errands, after another morning of watching Matt trail me through grocery stores and drug stores and big box stores, I decided that what Matt needed to feel more like himself was a project. If he had a project, with a goal that he could accomplish, maybe he’d get back to himself a little. I hoped he’d get back to himself.

In the days before, Matt had run a company. He’d run a company and played commissioner to all (or at least many) of his fantasy sports leagues and surfed the Internet, looking for new ideas and plans and opportunities. But now, due to the cognitive decline, the warped reality, the exhaustion, he couldn’t do any of that. He never complained, but I decided that he must be bored. I decided that his spirits might be low because he had no goals of his own outside the medical ones.

I was determined to find him some projects. I drew up a list of things he could do: finish the around the house projects he always wanted to do, but never had time for; draft questions for a scheduled call with the insurance company; complete the cognition homework left over from his days in cognition therapy. I even considered re-starting his therapies at Kessler. When we’d left therapy, we’d left with the idea that we’d be back in the new year after whole brain radiation was completed. But I couldn’t see putting Matt back into therapy. Not until we were sure the whole brain radiation had worked—or was working—to diminish the tumor, or at least to stabilize it.

Matt accepted the list. He tried to draft questions. I found the piece of paper he tried to write on. A few scribbled, indecipherable words. In retrospect, I can recognize that I was pushing him, trying to force him to be a person he could no longer be. And now, one year later, I’m left hoping that the attempt didn’t discourage him, didn’t frustrate him. I’m left hoping he knew that the attempt made my heart nearly burst with love—because I knew he tried for me.

In the world of grief and widowhood, I am a cancer widow, a woman widowed due to her partner’s extended illness. And yet, often I’ve felt like a sudden widow, a woman widowed without warning. Most likely, that’s due to my denial, my naiveté, my obstinate refusal to engage with the truth. I just…couldn’t believe the nightmare was real. I couldn’t stop waiting for the moment when I’d wake up and see that the road to happily ever after wasn’t as dark, forlorn, and obstructed as it seemed. But also, that without warning feeling is because we (maybe just I?) were (was) still fighting, still finding ways to push Matt to be himself, still scheduling tests and surgeries and badgering doctors for results. Through most of January, we were still in fighting mode, still reaching for an ever elusive miracle.

One year ago today, we had exactly one month left, and I can’t help but marvel at how much story is left to tell in these next weeks. How much hope remains.

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