MY DEATH DOULA

By John Thomas Tuft

Most days it is okay, it all at least feels bearable. Until she passes a mirror. She doesn’t want to look, but she must. It is what people do with mirrors, stop and take a look. Her doctor had recently exclaimed, “The team talks about you a lot, and about how you are dying with grace.” Grace is welcome, of course, but it’s the dying part…that is the part that makes looking in the mirror such a challenge. You live inside of your body. You grow up with it. You learn what it needs. What it wants. What you will let it do. Let it have. All the places it can take you. All the wonders of senses. Sight, sound, smell, taste. And touch. Beautiful, wonderful touch. A young girl grows up and matures into a woman, with a woman’s body. All of the magical mystery of thought. Housed inside your body but seeming to come from somewhere else. A look in the mirror and you wonder now, who is looking back…what is happening to me?

Her name is Carly. Effervescent personality that lights up a room, someone who has always enjoyed working with people. She spent last summer working on a ranch out west, doing health-building chores, eating healthy food. She loves to be with people, loves to dance and laugh, and talk. She is a talker. Which makes our conversation feel like it is drawing us into a sacred space because of the pauses, the moment of quiet, moments with no words. She came back east and went for routine physical checkups. And shortly thereafter, she is hearing the doctors tell her that even the double mastectomy could not reach all of her cancer. Stage four metastatic, she is in the unfortunate 2%…it is a death sentence. The same disease that killed her mother after months of pain and agony years ago. She looks in the mirror and sees pain that haunts her still from that time. She has already made up her mind. She will walk this path toward her own death with peace, love, and grace. No treatments chasing sick cells around her body while filling her with misery and pain. Her path, her choice.

There is a third person present in the conversation. Carly tells me, “This is Finna. She is my death doula.” Actually, she introduces her as The Reverend Doctor, but it turns out we are both from the same area of western Pennsylvania, so we don’t hold much truck in titles. Doula is Greek for a woman’s servant. More commonly known in the world of pregnancy and postpartum, Finna walks the path at the other end; she is a death doula. “I offer companionship and I am Carly’s advocate,” she says. “I go out ahead as a scout, removing obstacles in her path. I travel with her, keeping track of her energy. I accompany her to doctor visits, keep track of meds, keep track of what helps her have a good day and what to watch out for on a bad day.” They make plans together for the details of dying: medication management, arrangements for her body, family, cemetery, paperwork. There is always paperwork. Finna lends strength, experience, humanity that does not look away. And touch. Hand holding, tear drying, gentle reassurance, complete hugs that reach to the core of a wounded soul. Through bad times and remarkably good times, doing things they both did not expect to enjoy. They enjoy them together. Living…

Other people wonder and bring their fears to the space around Carly and Finna. “I can tell,” Carly says, “when someone is half listening, waiting to tell me about their family member who went through this. Or how bad the doctors were, or how they got a miracle.” She is quiet for a time. “Just be with me. That’s all. I know it is hard. Believe me, I know it’s hard.” Finna tells me, “I keep lists on my phone. The pain drugs can affect her memory at times. She might lose a thought mid-sentence. She wants to be Miss Congeniality, full of pep, when she goes into Dr. Cutie-pie’s office. Fortunately, we were friends before this so I can tell it takes a toll. It all takes a toll on her. I tell her she doesn’t have to be up for everyone all the time.” Being a death doula takes a special kind of person.

“What do you fear?” I ask them both. Finna thinks for a long moment. “That I won’t be a good scout. That I won’t have something ready for her when she needs to have it.” Carly demurs on that assessment. “She is great. When she walks into chaos, calm and peace arrive. It’s her gift. And she helps me remember that I do have control. Yes, I have cancer, but I have control over what I do about it. And this is what I choose.” My body, my choice…

“And you?” I press as gently as I can. Carly first changes the subject. “I wish I could make young girls understand that their bodies are fine as they are. It’s okay to be the way you are.” She wants to fight that battle, but the afternoon’s conversation is tiring. Then, somewhere in her soul, she spots her reflection in a mirror. “It’s in my bones. My mother suffered so with the pain. I’m afraid of the pain that is coming. What that will do to me.” Then in almost a whisper, “I’m afraid of getting to the point of not knowing myself.” I leave them there. Carly, with her death doula, to be with her, to touch her, whenever the mirror threatens to break apart…    Grace and peace and mercy, Amen

Words are magic and writers are wizards.  

For more information about Death Doula training and certification, there are numerous sites online such as inelda.org, (International End of Life Doula Association) and many more.