My fibropoetics is unique to myself. Other poets may have different experiences of fibromyalgia and different experiences in poetic practice than I do. Below I focus on my own fibropoetics characterized by (both the disease and the poetics) a lack of closure, unpredictability, non-conformance, emotionality and fluidity, ambiguity, asymmetry, uncertainty, fragmentation, pain as well as pleasure and a sense of humor. Both required learning and patience and both are frequently misunderstood, are stigmatized, are non-normative and are feminine.
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals…. Women are more likely to develop fibromyalgia than are men.
There is no cure and its cause is unknown.
POETICS: Poetry is marked as feminine in many ways in both Japan and the USA even though men may dominate poetry in some or many ways. In an article in Poets & Writers magazine about writing in log cabins in the mountains one male writer said to be a more manly poet it was a good idea to actually build the cabin yourself versus just go to one. UK poet Tony Harrison's poem "Self Justification" states that his being a poet made him seem a "cissy to the lads." Japanese poet Kora Rumiko stated in an interview that the language of poetry in Japan is essentially feminine.
FIBRO: For most of my life my problem had no name. I was eventually to diagnose myself with fibromyalgia and much later to receive a diagnosis from a rheumatologist.
"You're too sensitive"[with disdain]
I tried to hide my chronic illness for a long time, especially from employers after one employer threatened to fire me saying he needed somebody who was healthy all the time not just sometimes – even though I had been doing the job without complaint for over a year already at that time. I also found that at times when I could not hide the fact that something was wrong with my health, for example, if I wore a splint on my arm or walked with great difficulty, the reactions of others were not always positive, at the very least annoying and at worst hurtful or discriminatory. I am unable, due to pain, to maintain any one physical posture for very long, making some activities difficult or impossible.
In Japanese fibromyalgia is "seninkintsusho." Most people have not heard of it; many doctors only recently have heard of it, but for most it's outside their specialty and they usually seem to know little about it. My "low tolerance for pain" is actually allodynia, a common symptom of fibro. After leaving home I found a podiatrist who gave me prescription orthotics to help me walk. I cannot walk or stand without these today. I read that many people living with fibro use foot orthotics or should use them to help. One podiatrist commented ironically that the ideal foot orthotic for a fibromyalgia patient is one that does not actually touch the body, thus, compromise is necessary.
Does a sensitive body come with a sensitive mind? I am indeed sensitive as are many of my writer friends, but I need my friends very much, am not a loner although I probably spend much more time alone than many of my non-writer friends due to my need to read and write.
Feminist researcher and British psychotherapist Sue Gerhardt explores in detail parenting and societal practices, warning that babies and children not loved or properly nurtured could later be "disabled by hidden [emotional] sensitivities"(p. 218). I have this very vivid memory from my elementary school days. I was in a room by myself after school, crying. My mother entered the room and asked, somewhat sharply, "What are you crying about?" I started to explain that I had seen something at school that was very disturbing to me, and rather than attempt to console me, my mother shouted "Harden your heart!" and left the room. Apparently an elementary school teacher or administrator came to our house to talk to my parents about her concern that I was not getting enough attention at home. In any case, I felt from this point on that there was something very wrong with me. Later I would learn that my emotional sensitivity was a big advantage in many ways, would even be an asset in some circumstances.
I realized in my teens that my mother, herself very emotionally sensitive, seemed to disparage me when I appeared to possess a trait that reflected her own weaknesses; at other times it seemed she was disappointed for not having a child more like herself in terms of interests. She often tried to mold me in ways that did not take. It's true that I grew up without a lot of self-esteem or parental encouragement.
Another vivid memory I have is being four years old and lying down on the staircase leading from the living room to the upstairs bedrooms, feeling very tired. I think I have had fibro since childhood but that hormonal fluctuations fanned its flames at various stages in my life. I recall how physically painful long family car trips were for me as a child, how much my feet ached when there were no seats available so I had to stand through Sunday Mass, how uncomfortable wearing certain fabrics were, how I would become fatigued easily, how it hurt my feet to be barefoot at the local pool, wanting to remove shoes that were uncomfortable in babyhood, how much it hurt when my father pierced my hand with a fork to get me to not put my fingers in my food plate and so on. I was probably "over-reacting" to many things somebody without fibro would take more in stride.
POETICS: I struggled a long time to become a poet, and to be able to tell myself I am a poet as well as to be able to tell others that. This process took years and I am still uncomfortable in some cases with the label "poet" particularly when speaking Japanese. Often I tell Japanese people I am a "bungakusha" (literary type) and when pressed for more info say that I especially like writing poems, am a poet predominately, but I also write essays. I think one of my American relatives hoped I would eventually become a novelist and make money writing because something like poetry done for no salary was a bit pitiful to this relative. Things that don't make money have no value? When answering a questionnaire at Shizuoka Cancer Center, Japan's 2nd largest treatment hospital for cancer, I wrote "sakka" (writer) as my occupation as I had quit my teaching jobs and "poet" would not be, I thought, a profession in the mind of Japanese, even though I wish this were otherwise.
I do not like the word "experimental" because it suggests to me something not done seriously or left intentionally unfinished. I only slightly more like the term "avant garde." Unconventional, non-mainstream? These words describe most of my own work.
In 2017 my publisher (theenk Books) and I solicited comments about the anthology I edited titled women : poetry : migration [an anthology] (on sale as of February 2018). British poet Frances Presley (one of my favorite poets) responded that if the female avant-garde poet is doubly marginalized the women in our book including myself might be triply so due to being expats/immigrants. Although I know this is true I still feel strong as a person and a poet and of course some disadvantages become advantages in different circumstances.
a stationary wind
Electric shocks, wowee! In my leg, the feeling of.
Pins and needles in my back.
Why do all the cars have their brights on? (They don't in fact. It just looks that way to me.)
A knife between my legs (the feeling of).
I wake up feeling like someone has been hitting my body all over with a bat during my sleep.
I am driving when I feel a bug inside my shoe. I stop the car and remove the shoe. There is no bug inside. I put the shoe back on. I feel the bug again. I check another time: no bug in there. I put my shoe back on. I feel the bug again. I continue driving with the feeling of a bug in my shoe lasting about an hour.
After she shook my hand at the conference it felt like my bones were crushed. For hours afterward all I could think about was my hand hurts, it really hurts…
I can not endure anything touching my back, including the back of a chair, a cushion, another body, or a mattress.
I can't endure walking without my shoes and orthotics, so in Japan I have to carry around a clean pair of shoes that accommodate my orthotics to wear indoors (it is customary to remove shoes here when entering people's homes and even some public buildings). At least I don't have to worry too much about handshakes as we bow in this country versus shake hands! I also carry around writing implements because I can't bear to use a pencil, ball point pen, or chalk if offered to me.
My friend offers to lend me her computer, but I don't have my pen and tablet with me, and a computer mouse is too painful.
I wake up feeling as if I haven't slept more than a couple of hours, though it's been about 12 hours.
As soon as I buy clothes, I remove all the labels (these irritate my skin). I wash everything with no additive soap. When I travel (though I tend not to anymore because of the difficulties it presents for me) I have to bring all kinds of products with me like soap, shampoo, face cream, super ultra soft toothbrush etc. because I am allergic to or can't tolerate many things, including make up, and it is very difficult to find the products I need if I don't have them with me.
When my friend grabbed my arm I winced. It felt like her fingers were deep inside my arm pushing and pulling painfully on my tendons.
The unbearable sound of Japanese children screaming in public . . . or of electric fans whirring.
I often have trouble with my hands wrists knees spine and feet among other places. I wrote the line in a poem: "I cannot walk / among the poplars." Do readers feel relief when they get to the next line beginning "among"?
I came to Japan having only studied French, intending to begin to learn Japanese upon arrival, while working full time and just out of graduate school in the U.S. One of the first words of Japanese I learned was "antibiotic." I was never afraid of going to the doctor in Japan without being a native Japanese speaker even from the beginning when I knew few words because I usually knew what was wrong and what the conversation would be like. At first I simply checked in advance a dictionary for the words that were likely to come up. Most Japanese doctors are too busy for small talk so I wasn't worried about that.
I have always gone to doctors a lot.
"But you look OK!" [in disbelief]
I am tired of hiding however but also tired of explaining fibro.
Plath wrote: The tulips are too red … they hurt me! in her poem "Tulips." Did she have fibro or was she just super-sensitive? Sexton, who according to SUNY professor Joann K. Deiudicibus (2014) was bipolar, wrote a similar line in one of her poems.
It was the strangled cold of November;
In “The Black Art” Sexton also wrote: "A woman who writes feels too much."
In my long poem "wildblacklake," published as a chapbook under the same name in 2014:
figures leaning out windows
Even though I manage to lose 4 kg, a lot for a thin person, I fall in love with my body. I develop great respect for my body, more than ever, after it is permanently altered surgically and via radiation. It becomes less normative than before!
"My missing pieces make me whole" (a line from another part of "Plan B audio" in the December 2017 issue of Wordgathering).
About this poem my friend, neighbor, and sometimes collaborator Marcus Grandon writes in an email: "… charged with emotions of despair of facing one's mortality. It's full of sad, dark turns with nothing but hope to cling on to.… No self-pity, rather an acceptance of circumstance. There's something very real in the surreal imagery. It touches upon raw emotion."
When writing the poem, I let out the anger about being treated for cancer I had been hiding from my friends and even perhaps from myself.
During my last MRI, I felt as if the noise towards the end where it gets more intense was piercing my chest.
I am taking so many drugs my speech is slurred and I sleepwalk at night. I can't look at my scars.
My walking style is now more peculiar than ever because I have permanent lymphedema in my right leg after being treated surgically. I wear a stocking on only my right leg, a compression stocking, or otherwise a bandage that wraps around my leg.
beyond the garden
I get many gifts from people; some people travel a long way to visit me during my hospitalizations or when I'm recuperating at my home. I feel blessed. Unlike fibro, cancer is very familiar to just about everybody. If it is true that sensitive people are more prone to the arts and more emphatic, my experience in the hospital matches this. Mmost of the expats who visit me are from the writing community.
Each morning I wash by hand my spare stocking and hang it outside to dry. Then I "unwind" my leg of its four strips of elastic bandage, three strips of cotton padding, gauze layer and toe sock. After this a hot bath, followed by applying heavy cream and doing a leg massage. Subsequently with some effort I strain to get the spare elastic stocking on. Once the stocking is on I do a series of rehabilitative exercises. After this a walk outside. In the evening, I struggle to remove the stocking and the bandages get slowly wound into spools and then around my leg again.
Due to the radiation therapy I start wetting my bed at night. My skin is badly burnt and my bones are broken. I am given instruction in how to use a walker, and later how to use a cane. in terms of height and diameter, it's the biggest cane I have ever seen, with an attachment at the elbow. When asked to buy my own cane from the hospital supplier, I choose the brightest color available, fuchsia. I figure as long as it is going to be conspicuous in size why not in color, too. A nurse suggests I buy rhinestones at the 100 yen (dollar) shop to decorate it with. After using it for some time, I notice I don't like people touching or using my cane for very long or at all. It's like feeling I have about my eyeglasses or foot orthotics.
the beginning of weather crumbling into wealth
POETICS: To the best of my recollection, the first poets I learned of were Frost, Plath and cummings. I fell in love with the latter two, especially cummings' wordplay and Plath's intense theatrically rendered emotion, and the musicality of Langston Hughes. –I would learn to appreciate Frost more much later. My tastes in poetry and my critical eye were to develop slowly over time.
Illness sometimes comes up as a subject in my work but sometimes I am not even aware of the degree to which it comes up. In her review of my 2016 chapbook diurnal (Grey Book Press) Keri Glastonbury writes "there are recurring, fragmentary images of hospitalization, illness, anatomy and death"; about one poem she asks "is the gown a hospital gown or a frock?" She later comments: "The break-down of distinctions between the inside and the outside of the body gives the collection a sense of flickering transparency, like an x-ray or avant-garde biopic."
In other works however I was very conscious of the theme of illness, disability, and the body as in some sections of "Plan B audio," that reference clearly for me what I saw or imagined in the hospital while being treated for cancer and feelings about my own changing body. I believe the fact that I write about the body even without thinking about it as in diurnal shows me how important the body is to me, how thoroughly my body affects the rest of my life, how this is part of my different way of being in the world that my poetry expresses.
I think of my work as non-authoritative, as tied to feminism, as somewhat egalitarian in that anybody's impression is fine, I hope to stimulate something in the reader but not necessarily one thing in particular; I feel like or hope I am inviting them into a dialogue, not shaping their thoughts. Australian poet Pam Brown suggested in a review of my book FLUX (BlazeVOX 2013) and chapbook wildblacklake that I leave interpretation open to the reader.
I don't particularly like authoritarianism elsewhere in life either I guess. One of the hardest things about living in Japan for me was the top-down aspect of culture that permeates many environments here.
FIBRO/CANCER: I dislike when I have to deal with authoritarianism in the treatment of my illness, when I feel subject to a doctor's whims about what I need or don't need. Sometimes I get involved in a tug of war especially when the doctor knows little about fibromyalgia. My fibromyalgia interacts with everything else in my life, including other illnesses and conditions like arthritis, scoliosis and cancer.
My physical therapist was concerned that when pressing on my right leg with her hand I felt pain. I encouraged her to do the same with my left leg to show her that both legs would hurt, that the pain was fibro rather than the lymphedema though I do have pain due to the latter in many parts of my right leg. Due to my fibro, I need to be handled with a certain degree of care. I need stronger drugs than I have usually been given.
I enjoy soft fabrics like velvet and fleece, scents that are not overpowering, being touched lightly, kisses…possibly more than the average person does. I delight in many thing, many simple things. Part of the reason for this could be because I moved to a country where simple things are more revered. But I feel alive, fully alive….
* * *
I don't believe in "closure."
each beginning an ending
My body has always seemed to shift in and out somewhat of able-bodiedness toward disability although at my current age it's much more toward disability than the reverse. This is in part why I initially did not know if I could claim I had a disability. Also, it was a gradual process of realizing how unlike others I actually am. I'd say Susan Wendell's book The Rejected Body and the anthology Beauty is a verb: the new poetry of disability helped me come out of the closet. Wendelll has ME, a disease with symptoms very similar to fibro, and one contributor to the poetry anthology had fibro although I also felt I identified closely with many of the other offerings by contributors with other disabilities.
I can say that overall I feel like a lucky person. I am glad to have found poetry and I have found ways to try to feel thankful for my fibro, such as the disease encourages me to take good care of myself because if I don't I feel really awful. It's also perhaps helped me become more empathic (at the very least about chronic illnesses, fatigue, disability and pain) and perhaps less concerned about aging. I've learned to accept my body more over time just as I've come to grips with certain things about poetry, such as what some people call the best work can be the most ignored and the worst work the most praised. It's ok if the audience is small, the important thing is to do work that represents one's best efforts and reflects what one has learned and what one likes and so on. My critical eye has sharpened over time as regards poetry and I think as regards other things as well.
Before moving to Japan a good friend had a car accident which led to quadriplegia. I was shocked that many of his friends abandoned him at this juncture. Only myself and another female friend who was part of the larger group continued to stay in touch, visiting him in the hospital and then at home once he was released. I couldn't understand it; he was the same interesting, cerebral guy before and after the accident. His company was thoroughly enjoyable and I learn many things from him. Of course he went through a very horrible rough spot as he was trying to cope with his new body. But he got through it. Throughout everything I thought of him as the same intelligent person with a great sense of humor, even during the darker times. When I asked one friend why he no longer kept in contact he said if I were a man I would understand!!!
My Japanese husband's classmate in university had a sporting accident that led to quadriplegia. But his friends did not abandon him; they helped him with tasks so that he could complete his education and later set up a fund that everybody contributed to, to help with his costs of living, which he depended on for a time. Of course, we also know people who were abandoned by friends and relatives.
Here in Japan we have a very large elderly population and there is a lot of emphasis on health, illness and aging as a result. Fully half of Japanese get cancer, most in old age here. Of course compared to my native U.S. there is far less ethnic diversity with only a very small non-Japanese population; we are joined not only by relative uniformity in culture but also in frailty of the body. We do have diversity of other kinds of course such as personality, sexual orientation, economic class and so on. Once we learn self-acceptance, of our own limitations bodily and otherwise, it might possibly help open the door to acceptance of others. What I've learned from living in Japan with fibro, as a cancer patient and from being a poet associated with the avant-garde is that there are many ways of being and acting and one can view them as different but equally valid. As a long time resident of Japan I've been able to transcend my ethnocentrism and become more relativistic. I'm living in the moment more, and valuing my health friends body relationship to poetry and my time on this earth more deeply than ever. I hope that our bodily connections with each other are the foundation for bridge-building rather than segregation or prejudice. Because if not in other ways such as a love for art and literature our physical vulnerability to disease, disability and death links us all.
*Acknowledgment: Unless otherwise noted, all poetry cited in this essay is from my current work in progress "Plan B Audio". I'd like to thank the poetry journals A Glimpse Of, Marsh Hawk Review and Wordgathering for publishing poetry from "Plan B Audio" appearing in this article.