The One I Didn’t Reach

I’ll be honest and tell you that I didn’t like this patient in the beginning. No one did really. Francisco, the social worker, seemed to do alright by him. He liked Margaret, his first nurse. But at the start of our service, we all knew that most of us were seen by him as merely intrusive, another interruption in his already unhappy life.

         I'm not proud of it; but for at least three months I would tiptoe past his room in the skilled nursing facility and peek in, hoping he was asleep or gone and the visit would be missed. But sometimes, especially in the last six or eight months of his life, he was there. And he was mad. And after he ousted his second social worker and claimed the entire hospice team was useless, I almost got him to decline me, but then he asked me for help and I obliged and that was it. Weekly visits became expected.

         Since he was no longer able to talk, he managed conversations with a laptop and a software program that spoke his typed rants in a strange sophisticated British accent. It was difficult to communicate with him and he'd become so flustered with me, banging out his requests on the keyboard. I went to see him every week but these visits were still some of my hardest. And yet, after awhile, I was hooked, and I actually cared about the guy.

         I brought him flowers from the office, honored his military service on Veterans’ Day, made sure he got ice cream at lunch, learned about his work history, got my husband to fix his wheelchair; and before I knew it, I actually began to look forward to our visits and even as I write these words, I can hardly believe it.

         And then he got very sick and he kept getting sicker and then he wept and I held him as much as I could and wept with him. Mostly too weak to type, too lost to his ALS to speak, his tears were accompanied by primal sounds of pain and suffering and despair that still haunt me. Two days later he was taken to the hospital where I visited once but was unable to see him, only watch through a crack in the door as he screamed unintelligently at the nurse and the aides, still angry, still bitter, still in despair.

         When he was released from the hospital back to the nursing home, he didn’t try to speak again. The tablet with the fancy British accent was put away. The wheelchair, repaired and charged, was pushed to the corner of the room, empty.

         I stood by his bedside to tell him who I was, to tell him thank you for letting me visit and how proud I was to be his friend and only once did he open his eyes and look, his lips moving just a bit to whisper something I will never know.

         His case manager said he did not die peacefully but rather in pain and discomfort until the very end; and as much as I wish it could have been different for him, more like it was for another ALS patient I served, a Zen master who knew so much about surrender and trust in the universe, it was not different. This patient was no Zen Master. He was an angry, bitter man who railed against his disease and everyone associated with it.

         Still, I will never forget how it felt to have my arms around his shoulders while he wept, his tears washing my blouse, his response that he was getting snot all over me, (these words typed out and spoken so eloquently from his computer), the struggles he could never quite let go of and the harsh way in which he fought.

         I wish I could have given him a better journey, wish I could have helped him temper the anger, find a way to acceptance and peace; but I know it doesn’t always work that way. Sometimes the words we long to say or write, the ones we wish we could articulate clearly and well-defined, the intention of mercy, the right measure of kindness, the connection we hope to find, sometimes they come too late, and sometimes they don’t come at all.

         There are no guarantees in this life. No guarantees about how we will face our own suffering, manage our own despair. No guarantees that peace will come to everyone at the end. And yet, as I think about this patient and all the others in hospice I had the privilege to serve, I recognize that I am the lucky one. I have received so much for them all. They have all been my teachers: the Zen Masters, the heroes, and the ones whom I never quite reached. We are all children of God and all worthy of kindness.

And perhaps on the other side, in the end, we find what we could never quite get to here.

You are the light of the world.

Yours,

Lynne