NO HEROICS, PLEASE (RESPONSE TO GAIA THOMAS)
In Issue #50 of Wordgathering, Gaia Thomas writes that her disability is frequently invisible and also that she had to struggle to accept her new self after an accident. In Issue #48 in her interview she said that before her accident: "I kind of saw myself as this heroic character in my own life story." But subsequently her disabling accident "called into question my view of the world, and my relation to it."
I identify very strongly and closely with Gaia Thomas' words in issue 50 and 48.
I became very interested in disability activism in the 1980s after a friend of mine had a car accident leading to quadriplegia. I witnessed various struggles: financial, emotional, existential and practical, that he went through and began to see the world differently through him. I realized the world had been created mainly to suit the so-called able-bodied. To be very blunt I would say societies everywhere seem to favor able-bodied heterosexual cis men of the dominant racial group of that region. But while I learned a lot through my friend even today I am still learning much about disability because it is such a widespread and varied phenomenon of course. Journals like Wordgathering are an important source of information for me.
From the age of 16 I suffered from excruciating, debilitating menstrual periods and then in my 30s had unmistakable signs of what would later be diagnosed as fibromyalgia a chronic disease I believe I have always had but which hormone treatments and later a natural menopause fanned the flames of. However I did not think of myself as disabled until menopause made my symptoms extremely fierce (even though I now realize I have always lived with disability). I was later to receive medicines to treat my fibromyalgia which helped keep things in check (improved my ability to sleep and lessened but did not eliminate chronic pain). However, several years ago I was diagnosed with stage 3c cancer; there was no stage 3d for this cancer so I was very close to a stage 4 diagnosis. The cancer had spread to some of my lymph nodes. The cancer affected an intimate part of my body so it was hard to talk about with people, both the cancer itself and the treatments for it. I had a major surgery and radiation therapy and a very brief course of chemo. However another rare gynecological cancer was found after this and then my primary oncologist recommended a "radical" surgery which would cause me to lose about twelve or so pieces of my body. The surgery was curative or so far I am now cancer free a year after the operation. However I live with a colostomy, urostomy and am missing parts of my body that I cannot freely talk about. To put it this way, imagine a man who lost his penis, balls, rectum and anus, bladder, etc. He would probably not be bragging about it on Facebook. I have several close male friends who are cancer survivors but they can talk about their throat or colon cancer without embarrassment. Even though I am not ashamed of my cancer it feels too personal to share the details of it with others publicly. Also in the hospital and for months after the equipment I wear because of my urostomy and colostomy were malfunctioning frequently so I was often soiling myself, sometimes even when away from home. This was very distressing for me and also something I did not feel I could tell people about. So while I was struggling with a new body and self-esteem issues and new daily life procedures I also felt I could not share my painful feelings with others. It is still very hard for me though I have made much progress, in large part due to reading the stories of others with disability especially disabled poets and disabled women.
Currently I accept my situation. I have fortunately been not experiencing recently equipment malfunctions on a regular basis. I have learned about how my equipment works by reading message boards where ostomates have posted. I have helped improve my self-esteem and body image by reading what others with disability have written on those issues. But it is an ongoing struggle. I have chronic abdominal pain since the last surgery one year ago which I am trying to treat with herbs and moxibustion to rely less on strong painkillers which make me feel groggy and depressed.
My husband and I went on a boat cruise this year, something we had thought about doing for years. However when I boarded the ship I was feeling depressed about my new body/new life. On the ship was a German doctor who told me I was going through the stages of grief and to read a book titled On Grief and Grieving. I bought a Kindle edition of the book and realized she was correct. There was also a Traditional Chinese Medicine (TCM) doctor on board. I asked her to treat me for depression and stomach pain. Her treatments were expensive but they helped me.
I definitely used to see myself as a "heroic character in my own life story" as Gaia Thomas wrote. But after surviving cancer I see myself and others as fragile and alive merely by a stroke of luck. I do not regret anything but also see that on the positive side there is an exciting disability poetics community out there (although I have not found such a community in Japan, where I live). I learned via Wordgathering of the Zoeglossia anthology which I have just ordered and look forward to reading and have told many people about the Beauty is a Verb anthology which I look up to and some other anthologies I have found such as With Wings.
Throughout my cancer struggle I wrote when I felt up to it; I have kept all the poetry during this period in a file under the book title Plan B Audio; I have published most of the book in journals thus far. But just before our boat cruise I felt like I was barely functioning. I felt stuck in an emotional rut. I was writing sad poems about my body and seeing friends as often as I could. However when I saw my friends I felt unable to tell them what I was feeling and about how my life was going. I listened to them without speaking much myself. I felt relieved to forget about my own problems while listening to them. But after the encounters were over I felt depressed again. I am grateful that I no longer feel that way. It seems perhaps I am done or almost done with the grieving process that the German doctor told me is part of the cancer survivor experience.
For the time being I want to keep learning about disability poetics. While still learning myself, I have given about half a dozen presentations on (mostly American) disability poetics in Japan and these presentations have been extremely well-received (I even won a best presentation award for one of them!). I am grateful to Gaia Thomas for sharing her story and to Wordgathering for providing an outlet for poets like myself who live with disability and to the other poets out there sharing their stories.
Plan B Audio is quite varied including prose poetry, haiku, avant-garde works, etc. For me it is a document of my feelings and experiences during a rather challenging chapter of my life in which I learned quite a lot. Here are some short poems from the book written earlier this year (in 2019):
In a crowd
I no longer feel forlorn. I feel excited about the possibilities of the future, hope to find a new job, and want to learn many things from the disability community.