I did an ALS symposium where I sat on a panel to answer questions. I was the Hospice and Palliative Medicine representative, and the remaining panelists were ALS researchers and treatment specialists. Patients with ALS and the caregivers of these incredible patients sat in the audience and asked questions. The questions were excellent questions but also remarkable in that they had one thing in common. Despite the current dire state of the outcome of ALS, every question was about cure. Not one question addressed the most common scenario at this point in time, dying from the disease.
I fully understand this lack of desire to ask. I, too, have a pressing primal desire to favor life over death. Indeed, who in his right mind would want to detail out the gruesome details of his decline? Why would anyone have such a penchant for negativity and morbidity? And, what does it really matter to discuss the details of one's breakdown? We already know what dying is, you're living and then you suddenly pass away. Everything you loved in life is taken away. Dying is a bad thing, and it feels better to procrastinate in thinking about it, it feels better to focus on the false promise of a miracle of immortality, than to choose to contend with its unmitigated humiliation and pain.
Indeed, I fully understand the argument against discussing death. Yet, at the same time I know that we are wrong. This is for two main reasons. The first is that talking about death allows one to plan better for the dying process. In all cases, and especially in tough cases like ALS, this is absolutely crucial. Time and again in my hospice practice I've seen how continued conversation and careful planning around the dynamic decline of dying helped elevate palliation towards mental, emotional, spiritual, and physical peace. The second is that talking about death normalizes it, allows us to begin to face it, recognize it better in order to begin comprehending it. In this day and age, we don't recognize death well because we refuse to engage with it. But since death is inevitable, if we recognized and understood it better, we could manage it more and more optimally. We could even attempt asking ourselves the deepest questions, truly why, how, when does it occur?
Again, I understand why the questions are not forthcoming. Anything that is frightening and foreign to us we tend to shun. What is problematic is that in shunning death we disrespect it, and death in its inevitability should not be disrespected. It is foolish of us to ignore something so powerful that will happen to each and every one of us. No other entity in life has a claim on us like death. I truly hope that we can wake up globally and begin to see the great spirituality of the necessity of dying, begin to ask the real questions. Death as the great unknown has everything to teach us, about us.