I spent a day this past weekend co-leading a workshop on death with my friend and teacher, Chris Price. Usually, we hold a four-day, in-person workshop that spends time on the practical and emotional aspects of death, such as having proxies, an Advance Directive, and the personal experience of facing death with awareness. Of course, this year, we won’t gather in person. We won’t be sitting in a circle, able to support one another as we grapple with how we want to die. We are now experimenting with how to do this on Zoom.
We know we lose the benefit of being in proximity to each other in the online format. We are not able to physically hold one another as we imagine our death or the death of our loved ones. We also are acutely aware of the difference in doing this planning in the age of a pandemic.
I have taken and co-led Choices in Living and Dying: No One is Getting Out of Here Alive, several times. I really love being in touch with death in this way. I have chosen my proxies and completed my advance directives. And now, as I revise these again, my breath catches. COVID-19 adds to the panoply of possible death scenarios, and it does so with virulence and a lack of respect for my planning and control.
COVID-19 introduces speed and distance. I might die much faster than I expected. Yes, I know I could be hit by a bus, but then that window between “I know I will die” and “I died” is tiny. COVID-19 shrinks that window but doesn’t make it a split second. It also makes it more possible – my odds of being hit by a bus are 500,000/1 (and today likely zero since there are no buses in my house). By contrast, my odds of dying of COVID-19 are 68/1, by the most conservative estimates. Startlingly higher. I would play the lottery with those odds.
I have many responses. We all have many keys on the human keyboard, which ones do I want to play? Some I play out of habit and familiarity. One: “AAAAAAHHHAAAAHHHH – get me out of here!!” That's not happening short of a booking on the international space station. Another: “I got this. I can organize us all into a solution! And then scale the solution!” [Insert wry smiley face emoji]
I pause and pause again. Not running away and not springing into action. Just as global communities are being asked (forced) to take a break. This time I ask: are there unplayed keys on my keyboard? I’ve played the run-away and the go-into-overdrive keys a lot. Are there other keys I want to try -either for myself or others? For me, a question that focuses me: “How do I want to show up before I die?”
In my first blog entry, I suggested we all pause and take a breath. Can I make those simple steps part of what I do to respond more fully? More intentionally? And, what happens to me and those around me when I do? I look into the eyes of the two women I am sheltering with (thank the Great Mystery), my daughter and her wife, and say: “I love you. You showed up for me in this life just right for me. I am missing nothing from you. This is, and has been, just right.” Lots of crying.
There are really BIG differences for me from the last time I did my advance directives. I may die alone with no advocate by my side (my daughter says: “F’ that, I will be there no matter what...”). I may not die at home. Wow. Can I stay at home if I am an infection risk? Can I stay at home if no hospice will come and give me morphine? (I want a lot of morphine...).
And, this ventilator thing? With my “death friends”, I recently read What You Should Know Before You Need a Ventilator. Whew, this stirred a lot of questions. 1) Do I take a ventilator from a younger person with more life to live? and 2) Do I want the disability and potential life-long compromises that sometimes come with being on a vent? Now I wonder how to give my proxies a clearer picture of my preferences, so they know that I do not want to take this precious resource if my chances are slim, if I will not recover to the level of health I value, or if someone else needs a vent more than I do. Not easy decision points.
My other proxy, my son, will not be here if I am dying. He lives in California with his wife and 2-year old, the love of my life. No, he should stay there. And so, what does that mean for my one proxy here? Well, she can move mountains with a puff of her breath, so we will be fine. AND, I am naming two other people to support her in both spirit and logistics.
I again invite you to pause. I invite you to breathe. I invite you to take a look at your Advance Directive (AD) if you have one, and if you don’t go here and get the right form for your state. If you would like support as you think about who you want for proxies, and what you value and how to express that, go to these resources from the American Bar Association, they will guide you step by step. Some of the states' AD forms require two witnesses to sign, and they might be hard to find in a time of isolation. Find people with a digital signature you can insert. I am happy to help.
And, you younger people, telling us you do not want to make hypothetical value judgments before they are remotely real. OK. You still need an AD to name your proxies! That’s all. Have a conversation with them about what matters to you, what you value.
Most of all, let’s consider: “What do I need to say to my loved one before I am whisked off to the hospital, and they cannot come with me?” (Most hospitals now). “What do you need to know from me now about when I am infectious and dying?” “What do you need or want to hear from me from me before you are suddenly off to the hospital?” “What do I want to tell you before you go?” Tell those you love what arises for you when you look in each other’s eyes. Go ahead and directly ask: “Tell me what you want me to know?” Giving it time and space, ask it over and over, and thank your partner for responding.
Bottom line: We might leave this life before we show up fully for ourselves and the people we love. Why wait? What do you need today to show up the way you want to in your loved ones’ lives and to tell them what you feel? And what do you need and want from this life to be here now? I’d love to hear your thoughts! And, share your health information whether you have COVID-19 or not!