Jane Joritz-Nakagawa

Note: An earlier version of this essay appeared in Persimmon Tree. The work is reprinted with permission.

Disability, Tragedy, and Inspiration

“Being born a woman is my awful tragedy” wrote Sylvia Plath in her diary (1982, p. 30). Plath was referring to social norms for women in the 1950s. I used to feel this way too but mainly because I had horrific menstrual periods, the kind that made me lie on the floor and wail, unable to do anything but cry.  I faced other problems as a woman as well such as violent assault, power harassment, and fibromyalgia which mainly affects women. In 2015 and 2018 I was diagnosed with vulvar and vaginal cancer, respectively. About a dozen of my body parts were removed, including my entire vulva, rectum, anus, bladder, fallopian tubes, uterus, vagina, ovaries, in 2018.

Yet I do not view disability as a tragedy. I do not view my own life as tragic. I do not view the lives of other people with disabilities as tragic. In my case, however, there were adjustment periods and (temporary but prolonged) sadness was part of the adjustment. At the end I found acceptance, self-acceptance, and greater acceptance of life. I am happy now.

When I first got my fibromyalgia diagnosis I was both relieved (finally a name for all that I had been going through) but also sad (oh no this was a permanent illness with no cure).  But this too would end in acceptance.

So, do I feel being a woman is my awful tragedy? No, not really. When I was a young woman I reveled in my female sexuality. Sex became painful over the years however and for now that part of my life is pretty much over with. I like having a woman’s body, even the one I have now. Being female gives you an outsider’s perspective since the world is male-dominated just as disability gives you an outsider’s perspective because the world is mainly suited to able-bodied heterosexual men of the dominant racial group. In Japan I am an outsider and sometimes even an outcast. When I moved here I went through the stages of culture shock: the honeymoon period where everything is wonderful and interesting, then irritation, then depression then acceptance. The depression was quite deep but fortunately short lived.

People with disabilities experience the full range of emotions that other people have. We may be sad sometimes but that does not make disability itself sad. Able-bodied people are sad sometimes too.  Going through big life changes is stressful for everybody including when you lose something like a friend relative or body part. But you can come out of these stressful periods feeling like you have learned something about life that was previously inaccessible.

Since my total pelvic exenteration I have been told by many people that I am an “inspiration.” It irritates me because I am not. I say to them I am not. You are only seeing the good side of me. You weren’t there when I was starting at walls or crying on the floor. I am fine now, yes, I am fine now. People want to look up to others. When I struggle I often look up to others as role models myself. Of course, I don’t really want to be inspiration porn for other people however. I just want to be one more voice in the wilderness, a tiny speck in the universe, or to quote the title of a review of two of my books: “existence is but a brief shimmering of light.”  Maybe I am just one more shimmer of light in a large sea. I’ll turn to dust in a few days years or decades.

People want to be inspired and look up to others for all kinds of reasons. Idealizing another person however means not seeing them in their totality; for some when they finally do they feel disappointed.  None of us are perfect. The sooner one learns that lesson the better. But there is nothing wrong of course with appreciating  what is truly good about a person, about their real self, not a fictitious self. Or having role models.

When working out after my operation I thought of athletes with disabilities and I was inspired to go on.  But I don’t think that was inspiration porn. I think I always need role models when times are tough. I know that athletes are as human as the rest of us, with and without disabilities.

I think of inspiration porn as related to one of two prevailing stereotypes of people with disabilities, the hero stereotype as opposed to its opposite (the useless person who is able to do nothing, the tragic stereotype). We are neither superhuman nor tragic. One day I hope a majority of people will be able to see us as we truly are.

There is a journal that publishes the work of women who are sixty years old or older called Persimmon Tree. They published the following essay in verse in their Short Takes section which I titled “my non-heroic, non-inspirational tale”:

my right leg
is much larger
than the left

in its white bandage
my body bent
forward and to the right

no more catcalls
only blank stares
stares that burn a hole in you

but not in me
i was diagnosed
with fibromyalgia

in middle age
although the symptoms
were apparent since childhood

during cancer
in 2015 and 2018
i prayed

first to live
then not to cut my genitals
then not to cut too much

then not to take everything
few wishes are granted
in this life

you say i am a hero an inspiration
the bravest person you know
i am none of these

just an ordinary person
who poops and pees
like everybody else

who has a colostomy
and a urostomy
into plastic bags that stink itch and leak

sometimes gas fills my
colostomy bag so that it looks
like a large balloon under

my clothes that
even my gargantuan tunics
and flare skirts can’t hide

i am tired
of hiding the facts
i have no bladder

no anus no rectum
no ovaries no uterus nor fallopian tubes
no vagina no vulva at all

the doctor
stretched my skin
and sewed me shut

i named my colostomy stoma
“my meat” (i am a vegan) and my other
stoma “plumdrop”

i thought of naming my scars
but thought better of it
too busy maybe

am i now the plus in LGBTQAIplus
if not also the B
yet I was an A student

i can’t scratch
my itchy peristomal skin
i can’t put back my clitoris

but i’m here to tell you
i just turned sixty and i’m
alive alive alive

I was in touch with several American women who had had a total pelvic exenteration. I asked one of them if she loved her body. She said no, but that she had made peace with her body, and that she was alive, and that was the important thing. I thought about her words and the words of the others, all of whom told me it would take three years to feel psychologically well after this operation, despite counseling, Chinese medicine, or anti-depressant drugs (all of which I too tried).

It will be three years since my operation in October 2021. While mostly distressed, I produced a transgenre panstylistic collection of poetry under the title Plan B Audio (Isobar, 2020, reviewed by Diane Wiener in Wordgathering). I wanted to document my feelings and thoughts as they occurred while fighting cancer and then battling against the treatments for cancer or the institutions and their inhabitants themselves. In Japan once you get cancer you are given strong pain medicine if you want it.  I am lucky I still have access to such medicine, as I experience extreme pain since my operation. I had to really fight for the medicine, because there is no evidence of cancer in my body currently. I told the palliative care physician that it was unfair, many things cause pain other than cancer (in my case, one problem is probably the adhesions from surgery). How would my life been different had my pre-cancer pain been properly treated? The medical establishment holds a great deal of power over me. I feel the quality of my life may depend on luck and the ability to persuade those in power that I truly need what I ask for. Currently, whether I can work rather than stay in bed crying or see my friends frequently depends on my access to medicine as does sleep. (Unfortunately I can no longer sleep without medicine.)

I tried to find information about others who had had the same operation. I found one article that followed up the patients 10 years later. The patients were happy with their hobbies and friendships and life in general but when it came to their intimate lives they gave depression scale answers. However many indicated they wanted an intimate life but simply did not have a willing partner. (One of my best friends advised me to have an affair. Of course it has crossed my mind. I have purchased sexy lingerie and bag covers in the hopes I can use them some day. I am comfortable with my clear plastic bags, but others may not be.)  As far as physical complaints, pain and insomnia were the two things that came out in the study.

A woman with fibromyalgia who I found on internet complained the body positivity movement made her feel like a failure. She said at times she hated her body, when her body was ill. I used to feel that way.  But I don’t blame my body anymore. If I blame anybody it would be the medical establishment or people who are prejudiced against disability, although I do understand their fears. My body is fine. It’s me, my body is me. I am more than it at times, maybe!

It has taken years to make me a stronger confident person. I was “crippled” by my upbringing which tried to make a quiet, passive woman out of me. I had low self esteem, no confidence, as a young woman. I couldn’t stand up for myself or others, although I wanted to. But I met strong women in Japan and tried to emulate them, women in the activist community. I became one of them. And now one thing I wish to do is fight for disabled women everywhere.

My husband taught me how to deal with my male colleagues at the university. I would describe it as learning how to bark and growl at your colleagues like a wild animal. I am glad I am no longer working at a job where I have to bark like a dog, the only woman in my section. I work part time which allows me time to look after my health and see my friends and avoid office politics. Sure, my salary is not so great anymore. But I have a good life, and am doing fine.

Half of Japanese get cancer. In the USA cancer and heart disease beat COVID as a cause of death in 2020. I hope there will be more interest in the cancer epidemic. I have lost many relatives including my eldest brother and now my sister is in a serious state. I lost a friend last year to cancer. Cancer is everywhere and is a leading cause of disability. For me, it made me more disabled than I already was. I accept that fact as neither good nor bad but simply a description of how I identify myself. Disability is also a virtue, a way of seeing life. Like my elderly friends I feel closer to death, more of a realist perhaps than I used to be.

Author’s note: I was told my doctors that although the cause of my two cancers will never be known, almost certainly they were caused by HPV (the human papilloma virus). Now there is a vaccine available that protects people from HPV and cervical cancer (as well as the two cancers I got which are never mentioned in news reports in Japan). In Japan doctors stopped recommending the vaccine (stupidly!) because some women became ill from it. It is now under review. Cancer can be deadly and having a chronic illness because of a vaccine is still preferably to dying from cancer is it not? I live with a chronic illness plus disability due to cancer treatment but I lead an active and happy life. I would get the vaccination if I were a young person, ideally before becoming sexually active. Better safe than sorry!  Cancer is not merely potentially disabling, obviously it can kill you.

Works Cited

Joritz-Nakagawa, J. (2020). Plan B Audio. Tokyo/London: Isobar Press.

Joritz-Nakagawa, J. (2021). My non-heroic, non-inspirational tale. Persimmon Tree, Summer, 2021.

Plath, S. (1982). The journals of Sylvia Plath. New York: Anchor.

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About the Author

Jane Joritz-Nakagawa is the author of ten full length collections of poetry, most recently Plan B Audio (mentioned above). Born in the USA, she has lived in Japan half of her life. She is also the editor of an anthology titled women : poetry : migration [an anthology] (theenk Books, USA). Email is welcome at jane joritznakagawa [at] gmail [dot] com.