Thank you for having this meeting. As you know, I tried to get unplugged last week, and my family pressured me to change my mind. They even brought the minister, supposedly to pray with me and comfort me, but really to pressure me to “keep trying, trust in God, and wait a bit longer,” but for what? I’ve been in the nursing home and now the hospital for almost a year now. What I am waiting for? And why do I have to stay plugged in? I want you – the hospital staff – to let me go, and not tell my family this time.
God didn’t put me on this breathing tube. You did. If we are going to say that every single thing that happens is God’s will, then that makes the civil war in my country, the death of my firstborn, the incarceration of my brother who was innocent – I don’t have the breath left for philosophy. In a word – I don’t believe in absolutes. Things are more complicated than that.
I am respectfully requesting that you tell me what my rights as a patient are. Do I have to stay on the breathing tube because my family wants me to? Do I have to let them visit, if I don’t want them to? Can you tell them what I am doing, or where I am if I change rooms, if I don’t want you to? Can I sign a Do Not Resuscitate Order, of the Physician’s what you call it, the POLST form again? Can you carry it through this time? Thank you.
I tried to explain to my grown kids. My disease is not going to get better. It is a progressive muscle wasting disease that will leave me drooling and maybe seizing in a bed or wheelchair. I am dying. I am losing function. I can no longer walk. I can no longer bathe myself. I can no longer breathe on my own. I can no longer process my own food, so I have to have a feeding tube, just to drag things out. They just talk about God – God – God. How is this God’s will? Why would God in His infinite mercy care if I take 10 years or 10 minutes to die from this disease? That’s insane.
And every word I say, on this breathing tube, feels like sandpaper in my throat, makes me feel like I am running out of oxygen, even if you turned it up. If it weren’t for the pain pills, I couldn’t even voice. One of the respiratory techs, about 13 years old, just said I’ll get used to it. I’d love to pop a hole in his throat and see what he says then. Because I won’t get used to it. It’s not going to get more comfortable. It’s going to get worse. I am dying. This physical therapy, “try to get your legs stronger!” – what’s it for? Get strong enough to have more muscle wasting? Slow it down – for what? I am not going to run a marathon and raise money to cure my disease. It’s just dragging out the inevitable.
The kids, they rush over here once a week, and they’re like, oh hi Dad – we love you Dad – keep trying! Keep fighting! God wants you to try! I guess they and their minister just got appointed God’s Special Helpers and nobody told me. Then they pull out their phones and play a game, or God knows what, looking up to make small talk, and then their hour is up, and it’s bye Dad, love you! You keep trying! You keep fighting! Fighting what? God’s will? Because according to them, it is God’s will that I have this cross to bear. And I should be humble and just take it. So who I am supposed to be fighting?
They want to just claim they follow the bible word for word, and they are so close to God they can actually tell me – the one in the patient bed – what God’s special plan is for me! Their own father! They know God’s plan! Which apparently is to lose all my abilities while using more and more technology. To lie in bed begging for a shower and being offered some powdered chemical in an aluminum cap that a patient tech will comb out, and then call that a hair wash? I cannot even brush my own teeth, for god’s sake! I cannot even clean my own bed sores, from needing diapers now, and when I ask the nurse she acted like I’m asking for a massage with a happy ending. I’m not! I want to be clean. My body is failing. I’m in pain. I’m trapped. I want out.
The kids tell me that what I want is a sin, thanks to their fanatic mother taking them to that church – that it is suicide. But “God’s will be done” applies equally to having a natural death. How is it suicide to stop using artificial measures to artificially extend my life? Is it suicide to not take a heart transplant? Is it suicide to quit chemotherapy if it’s not working and maybe killing you faster? Do we have some inherent duty to “keep fighting” our fate and to die with less dignity, less comfort, more pain, and more agony, drawing it out for weeks, months and years so our families can tell their friends we were good Christians?
It is comforting to think in absolutes. I understand them. It is comforting to say everything is black and white. I should know. I was a journalist, and people wanted set truths that they could repeat with confidence, even if these generalities and slogans by definition are bound to be wrong in many cases. They want certainty! They want “the” truth! And when I wrote what was difficult, and I questioned things, I was threatened with death. Because I scared the people who wanted absolutes. But life doesn’t deal in absolutes. Life is messy and complicated and painful and doubtful. I should know.
This is the last time in my life that I will speak. So I thank you for the care you have provided, and I make this last request, that you make sure you have what you need in writing. My wishes are that you move me to another room. Take me off the patient list, and don’t tell my family anything. Take all the tubes out of me and off of me. The feeding tube, the drainage tube, the breathing tube, everything. You can keep the IV for pain medications if you like. I don’t expect to last for long, but no matter how long it takes, at least I will be on my way out.
Die alone? Yes, I will die alone. Without a single loved one by my side. And I understand what you are saying, that it may take even a couple weeks, although I feel certain that it will be a matter of minutes. Would you want someone screaming and wailing at your bedside, saying you will rot in hell, demanding that you not go, when that is all you want to do? I am not killing myself. This disease is killing me. All I ask now is to die in peace. Of course I would love to have a loved one, anyone, who would sit by my bedside and comfort me at the end, but I don’t have anyone who loves me more than their love of being righteous in the eyes of their petty little God who would punish me eternally for choosing to let my disease run its course. So may I please sign whatever I need to sign, while I still can?