My friend asks, “So, my question to you is about fear. If you are afraid, what you are afraid of? What comforts you? Do you stay comforted? I have known a few people – one, actually – whose religious faith allayed pretty much all his fear. I imagine that such a depth of faith would be a huge blessing, but is not something that I have. And, as I age and stuff happens in my body, I am experiencing fear that is not connected to something that can be fixed; it just is. This is why I ask you about fear. I would have liked to have asked my sister the same question, but didn’t.”
Jerry Seinfeld suggests, “According to most studies, people’s Number One fear is public speaking. Number Two is death. Death is Number Two. Does that sound right? This means to the average person, if you go to a funeral, you’re better off in the casket than doing the eulogy.” Do you relate?
Questions about my fears around death are the most popular topic I get, and I feel the heaviness and sadness in your words. But one of the biggest gifts for me in receiving a terminal diagnosis right out of the gate is having a name for my death. Sure, any of us could die at any time. Many people rationalize the seeming randomness of death – “I could get hit by a bus at any time” – dismissive of my experience in planning for my passing (and which I now grieve having said myself over the years). Before my friend, Karen Walsh Marhold, died of breast cancer, she would reply, “Sure, but my bus is running up and down my driveway.”
My Stage IV breast cancer diagnosis is a terminal disease. I will die of this, once it colonizes enough in my brain (brainssssssss…), lung or liver. Or even just a simple infection. But it is happening. I am actually dying, for real. And many of my friends who may not have a serious illness themselves seem to be grappling with similar fears around their elderly loved ones. When my friend tries talking about end-of-life wishes for her aging mother, her mother refuses to answer and will not discuss it. My friend doesn’t want to create a fight during an already-challenging time with her mom’s health, and the conversation uncomfortably, and abruptly, ends. Understandably, no one really wants to pursue it again.
Here’s the thing: We are all going to die. But dying didn’t feel real to me until my diagnosis. I’m not sure how real it feels to me even now. But here are three ways I dance with it that have strengthened and energized me, while eclipsing my fears:
- I purchased my burial plot. (Did you know that you can actually resell your plot if you want?) As I visited various local cemeteries, I learned about local Green Natural Burial options in Rosendale and Rhinebeck. I had no idea how much of a burden this fear was for me until I signed my check. I immediately felt lighter. And now, whenever I think about my eventual passing and picture those beautiful woods, I feel like I’m being welcomed back “home” to the Earth. There’s no fear looming over me about that now. And besides, why should someone else have to do this for me? I’m leaving behind a husband and two children. Why should he have to shoulder the burden of choosing my burial plot while managing grieving kids and his own sadness after I die? I was quite moved as we walked back to the car, and he thanked me for doing it.
- I met with my local funeral director to learn about logistics and details, whether I die at home or in the hospital. Planning and prepaying for my choices now, while I’m still upright, means another burden lifted from my family. The whole thing took around one to two hours, and it wasn’t a sad experience at all (except perhaps for the person we worked with, because we were quite thrifty with our choices).
- I completed a MOLST form, which turns out to have nothing to do with moles or mold. MOLST stands for Medical Orders for Life-Sustaining Treatment; and, unlike all of the living wills and other paperwork I’ve done, once my doctor signed it, the MOLST is legally and medically binding in New York State. It’s a series of questions about pursuing, or not: CPR, intubation, feeding tubes et cetera.
There is no way anyone could get me to care about another boring form (although the bright neon-pink does jazz it up a little). And then I met Brenda Relyea, RN, along with Elise Lark, PhD, LCSW, at the special sauce that is the Reuner Cancer Support House in Kingston, at an end-of-life paperwork presentation. My indignant question was, “What? If I had a heart attack right here, right now, of course I would want CPR! What, are you trying to kill me even sooner?” Brenda, who has been-there-done-that and seen it all unfold at her nursing station for decades, patiently walked me through an honest scenario about my recovery. Sure, I might live through an emergency rescue. But then what? And it was the “then what” that got me. I am medically compromised. I’m not even the same “Erica” now as I was a few years ago. Full recovery is not going to happen. Yes, a healthy person could recover, but that is not my story anymore.
The MOLST empowers me to make real choices; and believe me, this all took a while to sort through. And then I did it again with my doctor, who helped me to adjust some responses that I thought I had intended, and we signed off on the form. Yes, it can always be updated.
Brenda helped me see the truth in my dying, all without influencing my personal choices. She gave me information I had no idea I didn’t know that I didn’t know, and that I very much needed. Each check box is more like a Pandora’s box, with each choice on the page playing out in ways that inexperienced lay people like myself can’t possibly predict. Sure, a feeding or breathing tube might keep me alive; but at what cost, if my body doesn’t support a full recovery?
For me, exploring and reflecting on these choices is about really owning my body and my disease. Without the MOLST, I am forcing my family’s hand to make, and live with, impossible decisions that no one else should have to take on. Why would I put that on someone else? It’s my body. Examining end-of-life questions is simply about knowledge and planning. It’s not about “giving up” or “inviting death in.” From what I’m told, faith leaders tend to be supportive of exploring these questions, too. I am learning solid information about a reality I have never encountered before.
I am so grateful for this knowledge now, but I’ll be honest, it took a while for it to really sink in, because the MOLST is about my body, while I’m still alive, with choices that I alone decide. The MOLST protects my decisions, and my family can rest more easily, knowing, “This Is What Erica Wanted.” I very, very highly recommend Brenda’s and Elise’s workshops, whether for yourself or a loved one: Herbert H. and Sofia P. Reuner Cancer Support House, 80 Mary’s Avenue, Kingston; (845) 339-2071, www.hahv.org/hahv/cancer-support-house.aspx.
How have these words landed for you? I consider these three points profound acts of love for myself and my family. I will continue to write about fear around death, and in the meantime, please keep your questions coming.