I live with chronic pain and illness. I have done so for most of my life. Pain has stalked me like a silent, inexorable adversary, and now at this juncture of my life I am starting to ask myself questions about how the next 20 or so years might look like for my husband, my children, and my grandchildren. I am a palliative care nurse, and well trained to recognize and respond to intractable symptoms such as the overwhelming fatigue, nausea, shortness of breath, and pain that accompany many (but not all) diseases with a terminal trajectory. Most people do not fear death as much as they fear the journey that leads to that finality. My greatest fear has always been that I would be a burden to those I love. That somehow, once my usefulness as a human being has been exhausted that I would be left forgotten like some tossed off dish towel. That the essence that is me will be overridden by the custodial requirements I might require should I be unable to completely function independently. That I will be reduced to an invoice for services rendered at the end of each month; of prescriptions filled, doctors consulted, and the wistful hope that I might receive some crumbs off of the table of family relationships. I fear the loss of control, of independence, of losing the things that make waking up in the morning worthwhile.
So now I find myself reading pamphlets that encourage the setting down of ‘pre-arrangements’, ‘living wills’, ‘advance directives’. How do I tell my children that if the day should come when I cannot articulate my own wishes, that they are to do nothing to artificially prolong my life?
I came into this world presenting as an unwanted and decidedly unwelcome financial catastrophe for a father with no health insurance to cover the lengthy hospitalization and surgeries I required. I grew up under that shadow, always conscious of wishing that I could have been less of a problem.
Now I have an older son who seems so preoccupied with his own problems that I would never dare to venture initiating this sort of conversation with him. Nor would I want to lay this at the feet of my younger son and his dear wife. I feel very alone and isolated in the prison that is my pain. But all is not as bleak as it might sound. As long as I can move around and work the occasional shift I will do so. But I know that the sand in the hour glass is slowly trickling out. How much longer can I keep going? God only knows, and I hope that He cares enough for me to grant me a merciful parting from this life. May I be graced with the kindness that I have tried to bestow on others.