“No matter how sick I feel, I’m still afire with a need to do something for my living,” wrote Audre Lorde in her diaries about living with the cancer that would ultimately killer her, “A Burst of Light”. She frankly, intimately, describes the increasing care she requires from her lover, her children, her friends, and her frustration with her body’s refusal to let her be wholly independent, and let her complete her creative work. She goes on: “I want to live the rest of my life, however long or short, with as much sweetness as I can decently manage, loving all the people I love, and doing as much as I can of the work I still have to do. I am going to write fire until it comes out my ears, my eyes, my noseholes — everywhere. Until it’s every breath I breathe. I’m going to go out like a fucking meteor!” This I think is the great pain of illness, chronic or terminal. Inside a society where the individual is enshrined and the rugged fight to be “self-made” is the maxim, those whose very life depends on drugs, physical care, love, medical attention, and generosity, feel like a failure. “I need to do something for my living,” we think. I need to prove that I am worthy of life and worthy of love.
Such thoughts have often plagued me as, over the past fourteen years I have oscillated between remarkable self-reliance and extreme disability. Suffering from a genetic disease with a host of complications I’m intimate with that moment when you realize you can’t walk to the car, you can’t drive yourself to the hospital, you can’t even wash your own body. I’ll never forget the months, a picc line threaded into my heart, too weak to walk, letting my mother sponge bathe me in the bathtub while my peers went to Prom. I felt ashamed of my need. Ashamed that I needed help bathing.
Gazing at the pearlescent pendant stalk of Monotropa uniflora, otherwise known as Ghost Pipe, I recognize myself. Ghost pipe, those spectral white flowers that surface through shadow and leaf rot, can grow in the dark because they do not need to photosynthesize. The “parasitic” flowers of the blueberry family are “mycoheterotrophs”, meaning they are totally dependent on carbon from an underground mycorrhizal fungus. Ghost pipes typically pair with Russula or Lactarius species. These fungi receive sucrose from their symbiotic associations with trees while providing this sugar to the parasitic flower that by quantitative analysis gives nothing in return. Articles and essays about mycoheterophic plants and Ghost Pipe usually say the plants “fools” the fungus or “steal” the sugar.
Mycoheterophs like Ghost Pipe confuse our ideas about partnership. We immediately characterize the Ghost Pipe as lazy or as a villain. This same language is used to describe the elderly, the disabled, and, worst of all, children. The abstraction of the term “codependency” from the psychology of addiction has led to a flawed and simplistic argument that we all “attach” incorrectly and that we need to define ourselves by our own worth, our own ability to provide for our needs and wants.
But what if you can’t walk? What if you can’t bathe yourself or feed yourself? This isn’t a hypothetical to me. This is a lived experience. What does it feel like to know you are alive only because other people have nourished and cared for your body? And that you’ve been too ill to give back in ways that show up on a diagram. That can be illustrated and quantified.
Lying in bed, almost a vegetable, for a year, it is easy to feel like you will never be a lovable romantic partner, never be seen as a functional member of society. What do you have to show for yourself? But what if, from a material reductionist standpoint, we don’t really understand mycoheterotrophy or parasitism? I sit with Ghost Pipe these days and I wonder about a qualitative study of its relationship with the Russula that is fruiting up nearby. Does the fungi enjoy the interaction? Although it can’t be “weighed”, it feels good to help those that we love. It feels good to feel needed. Could the fungi, in some strange way, enjoy this relationship? Is there interstitial play between these two beings? Even if it doesn’t immediately show up as being mutual? How do mycoheterotrophs queer our ideas about how intimate relationships work and should look?
My totally unsubstantiated feeling is that we are looking at mycoheterotrophs on a human scale. Evolution, although seemingly fixed from our perspective, is an ongoing process. We can’t possibly see the full narrative of Ghost Pipe and her mycorrhizal fungi. Maybe millions of years from now the parasitism will become symbiotically mutual, or switch directions. Perhaps there is a tide of need too grand for our come-streak lives. My deep intuition is that there is something invisible, and as of yet undocumented, happening between these two beings.
What does it feel like to be needed? What does it feel like to be needy? How can we tenderly hold the constellation of relations that constitute a sick person’s body and their survival? I’m beginning to soften into all those moments when I had to surrender in order to survive. I send a deep, earthy thanks to my mother who washed my body, and braided my hair in the hospital so it wouldn’t turn into mats. I send pulse of sucrose and carbon back through the mycorrhizal systems to my friend Hannah who spooned me in her bed, freshman year, after I almost died from an anaphylactic reaction to peanuts. She held me until I fell asleep. I say thank you to the friend who made a makeshift tourniquet for my wound and carried me out of a gorge on his back after I slit open an artery in my foot. I send an unquantifiable gust of love-plush gratitude to the animals that appeared to me, strikingly, symbolically, when I had nothing in hand to give them, no food to offer in response. I say thank you to the friends that brought me flowers for my altar when I was bedbound.
I am constituted by love. I survive because I am related to other beings. I am totally and completely dependent. On this soil. This land. My family. My friends. My collaborators. My readers. Although I cannot always tangibly, materially give back. I give my words, my breath to you. I am constituted by Ghost Pipe, right now, looking at her in the wild woodland behind my friend’s home. I am here, radically attached to everyone and everything. Although I eat differently, live differently, look differently, love differently than other people, I am still a member of the forest. She teaches me that I do not need to prove that I am worthy of love.
This piece was written in summer 2021 and is dedicated to Mary Evelyn Pritchard and the land she stewards. It is an outtake of my upcoming book on disability and ecology – The Body is a Doorway: A Journey Beyond Healing, Hope, and the Human.
Originally posted on Sophie Strand’s Substack.
