I signed up for the sled hockey team last weekend. It was exhilarating to fall over and at the suggestion of my pain management specialist who decided we were going to wrap me in bubble wrap and put me in a padded room after I fell and hit my head again, sled hockey felt safe. Helmet, elbow pads, thick gloves—forget the huge spikes on the bottom of the sticks. But I digress. Just notice the life.
I work for an amazing company who lovingly embraces the fact I work so hard in spite of numerous rare diseases and recognize that my contribution as a consumer of very expensive healthcare is valued and needed.
Working in healthcare has been hard. I was hired to help people with life changing diagnoses live well. I call it remembering “the space in between” when you are being a patient. I know I have forgotten how to live when all my calendar was filled with was medical stuff.
I have found some supportive healthcare professionals who are also consumers of high cost healthcare. I asked one yesterday, “do you ever start to enjoy working in healthcare when you see the ugly side?” She assured me I would and that once I’m truly doing my job of helping patients live well, I’ll be a lot more fulfilled.
I have the potential to work with patients that have months to maybe a year to live. A huge foundation of the program I’m creating is equity. It means that no matter what the diagnosis, prognosis, length, or severity of disease, I am committed to helping them.
There are bad people, good people, and middle people in any field. Healthcare is no different. It was advised to me by someone very motivated by profit that I shouldn’t help a particular very severe disease state as it’s not hopeful or profitable. I negated the idea in my head thinking “equity, equity, equity”, but the message I heard is “there’s no profit in dead people”. I guess it’s technically true. I’m more humanitarian about it and have been reminded it’s why I was hired.
As I surpass the 3 week mark of how long I was given to live two years ago, I think about if I had given up and accepted that as my fate. I would have deteriorated and be gone. I’m certainly more profitable to healthcare alive and without a doubt to those that know me.
As I say to many, all of us are going to face our mortality at some point. Some of us are blessed to live as though we know it.
Leaving with a lovely photo I took out the window of my pulmonologist’s exam room today. We actually both spoke of seeing the mountain tops so clearly today. He seemed a bit weary himself as a pulmonologist and critical care doctor who makes rounds in the ICU. He stared out the window for a much longer pause and wouldn’t look at me when I asked how he was. He simply gazed and said, “I’m mostly ok”. Nature is a great connection and I’m sure he’s not thinking about the lack of profitability of dead people. I’m sure he’s probably feeling a bit like I do.