There is something that is weighing on my heart and I needed to get it out. I need to see the words form, flying across the page in a flash, and spilling out like water. I need to talk about death and I need to talk about grief. I generally try to focus on the positive things, the things that make others feel lighter and unburdened, but my thoughts are gloomy today. The wind is howling outside and rain is coming down from the sky in a torrent. I wish I were curled up near a fireplace listening to the crackling of logs as tendrils of smoke escape up the flue. Instead, my brain is carrying on a philosophical discussion of things that tend to make others uncomfortable. I only partially blame it on my recent readings of Being Mortal: Medicine and What Matters in the End by Atul Gawande and “Never Too Late To Operate? Surgery Near End Of Life Is Common, Costly”
For some time now, I have been thinking about how we deal with the end of life in the chronic illness community. For the most part, we skirt around the subject. It is there, but not there at all. The truth of the matter is that we are all keenly aware of our own mortality, the waning days are expected to come sooner for us than the general population. We will build friendships and deep bonds over our experiences and then watch helplessly as these people slip away or just vanish suddenly. It is hard to live in this place of love and loss that threatens to endlessly repeat. I feel. I fear. I fight. I …forget? I hope not.
Many of the people I have developed friendships with over the last several years are heavily invested in the advancement of medical technology, the delivery of healthcare, and developing partnerships with healthcare providers. There is an increasing call for empathy along the entire span of the healthcare spectrum and improved quality of life. This does not mesh well with Western views of healthcare, which increasingly focus on eking out a few extra days or months of life through valiant measures, with nary a care for the inevitable process of a body on the decline. Each grey hair, gentle hobble, or wrinkled patch of skin reminds us of our own mortality and is rejected by a society that values youth and vigor.
Even as patients, we can buy into this approach where extra time means everything. It is no surprise then that our culture of medical heroics pushes onward to defy even death itself. This mindset leads to unnecessary interventions which do little to improve patient outcomes or quality of life. While life itself has incredible value, an extension of time is almost irrelevant if we are not able to be present in the moment. It is simply an acceptance that we shall not go on forever in mind or body.
I often have my doubts that this opinion is shared widely, even within the chronic illness community. We all continue to weigh within ourselves the best choices for our individual life circumstances. We are not all warriors, intent on waging a daily battle against the pain that consumes every waking moment. Neither are we all at a place of stoic acceptance. Rather, we undergo a range of slight and even seismic shifts, landing somewhere on the spectrum of understanding. The continuous whispers of impending grief lurks around the edges, and in this state, some of us reach out to others who would lift our burden.
Friendships in the chronic illness community form quickly and can be intense, as we bond over procedures, diagnoses, and life stories. Many of these form online, as it is often the only consistent outlet to the wider world that exists for us. These friendships are no less real or valid than ones you would make under other circumstances. Niche groups form and offer reciprocal support, ensuring that no one is left with the entire burden of providing emotional labor. Many of us develop personal and working relationships within these tight-knit groups, as we work towards a common goal. Yet, there is the unspoken always present and lurking. Though we express an endless positivity and support for our friends, the trickle of fear and the questions of “what if,” dare not be spoken aloud. It is as though uttering a word about the possibility of death brings it a step closer to fruition. Perhaps it will even force that realization of our own end will be sooner than we desire.
I would like to say that I have some level of insight into processing these feelings that remain unspoken, so I will end this with a quote to think on.
Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits…[but] I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. – Atul Gawande