“There's not much to say, so I'll keep it brief. In the last 24 hours things have changed wildly. Myself, and my brother are here with my father, and in consultation with him and his phenomenal medical team, the treatments are no longer working or viable. We are moving forward making him comfortable and talking with him as much as we can as our remaining time is short, and utterly precious. He's an incredible man, and he (and my family) thank you all so much for your love, support, thoughts, and prayers. He rallied for so long, and fought so hard, and now it's time to rest. At this point, all I ask is your continued love and support, and respect for his privacy through this hard time. I will update as I can if there is any updated information. We love you all, thank you so much, really, I can't thank you enough.”
One year ago today I wrote those fateful words on the Caringbridge account for my father. February 3rd, the anniversary of his death, will always be a hard day for me, but I think January 29th is potentially harder. January 29th was the day I watched my father lose hope, and I began to discover a new language.
On January 28th, 2016, I sat down with Dad to ask him a very tough question. I told him that tomorrow we were going to have a talk with his team of doctors, because he was in no mental state to make his own medical decisions between the cancer, the pneumonia, and the amount of drugs they were pumping into his system. I told him that a big part of which was to answer the question “do we want to keep fighting this thing?”
He didn't understand.
He looked at me, eyes confused, and full of abject horror, as he struggled to process through the drugs that made him sleepy and killed his brain functions. He said, “I don't understand. Are you saying that... I don't understand.” It was like talking to a child. Through the haze of medication and illness he wanted to know if this was it, if they had told me he was going to die. He looked at me to explain it. Scared, confused, and desperately wanting control in a situation that he no longer had access to. I explained that he was very sick, and that there is no shame in wanting the pain to stop, and the doctors' wanted to know how we wanted to proceed. “Ok. Ok. I think...if there's a fight to be had, then I would like to fight.”
The next day my brother arrived, and we had that meeting. It was very quick. The doctor's explained that even if they cured the pneumonia without the drugs failing his organs (which was a long shot), he was going to need a full bone marrow transplant soon, and in order to receive that transplant he needed to be in good health (which was a long shot), and that even if they successfully accomplished the transplant his body needed to accept that transplant (which was a long shot). They told us that we were looking at odds of 1 in a million that all of the things work, and that was generous. In every other option, Dad died in an excruciating amount of pain.
The decision wasn't hard, we decided to stop treatment.
We returned to his hospital room, the doctor having told him the decision. There was no light in Dad anymore. He had been pushed onwards by hope, hope that he would get better, hope that he would get to see his beloved land in New Hampshire again, hope that he would get to hike another mountain, take another road trip, see a new place, teach another class. He was driven by a will and a hope to live, that was now impossible, and he was told he had probably a max of 72 hours to live in a hospital bed, many of which he probably wouldn't be awake for.
He was staring at the ceiling, off in his own world, probably on top of Mount Washington, looking at the White Mountains. He had this look of longing, and a pain that I don't think many people can understand. I think about that moment a lot. I think about standing next to that bed, my hand on his shoulder, his eyes off somewhere that I'll never know exactly. I remember talking to him, and getting no response, nothing brought him out of that dream world except for “I love you”. He would fight his way through the fog, turn, look straight into my eyes, and repeat the phrase twice, like the first time wasn't how he meant it, and he wanted to make sure it was perfect.
I think back on that moment a lot, and I think how apropos the song I chose to record for Dad last year is. The final verse, just after the key change, reads “turn your eyes from the sky now, turn around and look at me. There's a light in my eyes now, and a word for what you see. We call it love”. I do not know what it means to be a father, but I know what it means to want to express love in a new way, a way that feels unique, and whole, and encapsulates the feeling in a way the word never could. Today, I have to find ways to express it that he might understand now, when words are no longer possible.
For me that's music, for me that's fighting for what's right and standing up for the little guy, that's living in ways he loved, and loving the ways he lived. It's finding a new language to express one singular, overwhelming emotion that simmers at the surface of everything I do, with everyone I meet.
“New words today, we learn to say, learn moon, learn stars, learn love.”
P.S. - I legitimately wouldn't have made it through the year without the help of so many people. I often go back to January 29th, 2016, on that caringbridge, and read the incredible comments of love and support left for my father on the post from that day. If you'd care to read it, you can find it here.
I find myself hilarious, and I use this blog to stroke my own ego. Thanks for indulging me.