Julie was a 50 year old woman who had worked briefly in healthcare as a young woman before she was involved in a car accident which left her paralyzed from the waist down. She was tiny, severely malnourished, with enormous decubitus ulcers on both hip bones as well as her sacrum. She had done well for many years after the accident, living independently, and taking a new job working in ministry. Then her fortunes changed again with a severe illness that left her on life support followed by a difficult prolonged “recovery.” Her pressure ulcers and chronic infection of her sacral bone were some of those complications and they were difficult to look at. There was no position she could lay in to keep the pressure off all of them. Our palliative care team was consulted to “discuss hospice” with Julie but Julie had different ideas. She was bright, expansive, appreciative, and determined to get better. She told us how grateful she was for our visit, how happy she was to have the opportunity to meet us. I was impressed with her spirit, her joy for life, and her determination to appreciate everyone who cared for her. She went on to tell us how much she loved her job, that she wanted to get back to “ministering to others”, especially “those with sexual immorality- the homosexuals.” My entire body tensed, and I felt something in me shift. A wall went up. I didn’t really want to talk to her anymore and, luckily, her goals were clear, giving me the perfect out. I signed off.
Only a few days later we were asked to re-engage to help manage Julie’s pain. I somewhat reluctantly stopped by that morning. Julie told me that the changes that had been made over the weekend by the physician on call were helping and declined any further adjustments. I was relieved that I could again justify disconnecting. But only a few hours later I received a call that Julie wanted me to come back. She had more questions. “What questions?” I asked. No one knew. “She just wants to talk to you again.” Great, I thought. She’s going to try and tell me more about how she’s saving the homosexuals from their sexual immorality. I felt a sense of irritation and then anger. It was inconvenient to have to go back. Julie was a talker. I worried I would be in there for quite some time. When I stopped by, she was in the middle of getting her dressings changed. I offered to come back later but she insisted I come in the room. She was lying on her side, tearful and in emotional distress due to the pain of the dressing changes. I had only seen pictures of her wounds before but seeing her uncovered with her rectal tube, urinary catheter, and horrific ulcers wide open was nearly overwhelming. I stayed for a while, admiring how calm and compassionate her nurse was with her, and failing to find the same in myself. I noticed how full of appreciation Julie was for everything the nurse was doing for her despite her tremendous pain. I noticed how her face lit up when anyone came into her room. I wanted to stay there with her, to kneel down and take her hand and just breathe with her through the pain. I’d like to tell you that’s what I did, but it wasn’t. The smells in the room – the smell of rotting flesh, infection, death- overwhelmed me. In that moment I struggled to feel anything but an intense urge to get out. I told her I would adjust her morphine and her hydrocodone. I knew this was inadequate. Not only would it likely do little to help with the intense pain of dressing changes it wouldn’t address her emotional suffering at all. I ensured she had received her IV pain medication, and then I fled the room.
Linda Kohanov defines emotional heroism as the ability to stay present when under attack, holding space without fighting back or fleeing. This applies to the ability to stay present during intense suffering without getting swallowed up in it. The need to fix runs deep for many of us in healthcare, and when we can’t fix suffering, we feel threatened. Our fight, flight, freeze response kicks in. I think I experienced all three during that encounter; anger/irritation at being asked to re-engage (fight), dissociation from her pain/suffering (freeze), and an intense urge to get out of the room (flight).
That weekend, I couldn’t stop thinking about Julie and my response to her deep suffering. I was embarrassed and disappointed in myself. I wondered if my judgments of her had contributed to my inability to be present during her suffering. I recognized an internal tension. My desire to disconnect, separate, and see her one dimensionally was at odds with the truth- she was actually incredibly likeable and embodied many qualities that I deeply admired. Her gratitude despite all she had been through and all she would continue to endure was inspiring. I suddenly realized the irony of my behavior- I was judging her for judging others.
With that realization came another- that my intense disagreement with her point of view did not make her less worthy of my compassion. In that moment I was able to create enough space to notice that, as with all of us including me, her beliefs were based on the experiences and influences of others in her life. Her beliefs were what they were in this moment, nothing more. They did not define her. She was so much more.
I returned to Julie’s room early in the morning on Monday, relieved to find she hadn’t discharged over the weekend. I sat down beside her and told her how much I admired her ability to live her life full of gratitude despite the tremendous suffering she endured on a daily basis. I told her what a difference it made to us as healthcare workers to know that we were appreciated. I told her how much I appreciated her and the opportunity to be part of her care.
My experience with Julie was one of my gratitudes for that day. Caring for her made me aware of demons that previously lay beneath my awareness, helping me grow just a little bit further in my ability to judge less, and love more.