The Power of Presence
April 12, 2019 / Reid M. Jacobs, APHSW-C, MSW
Presence, or simply the act of being with someone, is a powerful tool when caring for someone with a life-limiting illness. It seems overly simplistic, but it can have a profound, lasting effect. I had been told that the first year I started working in hospice care. I wasn’t sure I believed it though. How can just being with someone, not doing anything, have any meaningful effect beyond feeling awkward. Because just being feels incredibly awkward.
Still, I had been told to do this because there are times when there is nothing more to be done. That’s what happens with life-limiting illness and near the end of life, making presence the best course of action. So, when I’d go see Mr. Smith, a widowed man with end-stage dementia who lived in a secure memory care unit, I would just sit with him. I felt so uncomfortable. Thoughts raced through my mind, trying to come up with something, anything to engage with him. Perhaps someone else could have come up with something brilliant. I could not. And I continued to sit.
Around that time, I was diagnosed with Non-Hodgkin’s Lymphoma. It was stage IV and had spread to lymph nodes throughout my body and had begun to invade my bone marrow. During treatment, I developed severe pain. The worst pain I’ve ever experienced. A friend, Joe, came by to check on me after work one day. He found me in bed, curled into a ball, clutching my ribs where the pain was most severe. I’d taken the opioid pain medications as prescribed, but after an hour, there was still no relief.
Joe called the doctor, but it was afterhours. All he could do was leave a message and wait for a call back. In the meantime, he pulled up a chair and sat next to the bed. He tried talking with me. I don’t remember the topic because I was in too much pain to hear much of anything he said, much less engage in conversation. He eventually just leaned back into the chair and sat as we both waited for the meds to work or the doctor to call back. There was nothing more to be said or done.
This could have been a horrible evening of suffering. The memory of severe pain could haunt me. But I happen to recall this as one of the most precious memories of my life. I don’t remember the pain. I remember that I was in pain. I remember the sensation of my ribs cracking, but I don’t actually remember the pain itself. I don’t recall a sense of suffering. Instead, I remember an immeasurable sense of compassion and comfort. I was no longer a cancer patient in a pain crisis. I was a person being honored, and I was not alone. Joe met with me and stayed with me in the midst of my horrible experience when there was nothing more to be done. He stayed with me through the storm and held the pain with me.
I don’t recall how the evening ended. Perhaps the doctor called back and gave new orders for the medication. Perhaps the pain went away on its own. Perhaps something else entirely happened. I truly don’t recall. All I remember is a compassionate presence and the fact that I was not alone.
Years later, after the chemo, after achieving remission, I asked Joe about that night. He told me how helpless, useless and awkward he felt. He had no meds to give and he couldn’t do anything to make the doctor call back any quicker. He couldn’t come up with anything to say that would make the situation any better. All he could do was sit and wait. As it turns out, that’s all he had to do. I explained how his presence relieved the pain in a way that no drug ever could, how his powerlessness had transformed into one of the most profound and meaningful moments of my life. Joe found this hard to believe, though he was glad to hear that his presence was not in vain.
Thinking back to Mr. Smith, my discomfort may have had a similar meaning for him, as Joe’s had for me, though Mr. Smith was never able to convey this to me. However, after several “unproductive” visits with Mr. Smith, he looked over to me and said, “you’re kinda nice.” It’s the most I ever heard him talk. It seemed like a nothing response at the time, but maybe, just maybe, my presence meant more than I knew.