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Shoes that light up: women's memoirs of illness and disability.

Following a protracted illness and the diagnosis of an autoimmune condition, I became interested in the question of what kind of meanings are made of illness in Western countries where, supposedly, world standard medical care is available and patient choices are emphasized. What sort of ideas are circulating and what might women's memoirs have to offer on the subject? What follows is close readings of several memoirs (1) in order to critique some alarmingly prevalent notions about illness, its 'causes' and 'cures' and the ways in which women are dis-empowered by a number of contradictory discourses within medicine and the wider community. I offer, as well, a brief description of my own illness in order to situate the paper and, following Nancy K. Miller's lead, to engage in an 'explicitly autobiographical act within the act of criticism.' (2)

To set some parameters: the discussion will centre thematically on the notion of listening and bearing witness and on a critique of some of the damaging beliefs still circulating in the hope that women can avoid participating in such received knowledges. The works can be read as well for issues of representation. The dominance of capitalist visions of young, beautiful, white people, healthy and affluent, will be juxtaposed with the realities of isolation, poverty, and a deep sense of invisibility often experienced by women with major illness or disability. The term illness is used tactically here in preference to the term 'disease' which has become replete with meanings. (3)

Susan Sontag's Illness as Metaphor (4) was first published in 1977. Almost thirty years later, Sontag's critique of cultural attitudes toward illness still has relevance.
   Illness is the night-side of life, a more onerous citizenship.
   Everyone who is born holds dual citizenship, in the kingdom of the
   well and in the kingdom of the sick. Although we all prefer to use
   only the good passport, sooner or later each of us is obliged, at
   least for a spell, to identify ourselves as citizens of that other
   place. (5)


One might think of women memoirists in this case, as emissaries from the kingdom of the sick, reminding us of the tenuous status of our passport to being well and entreating us to consider the material and social conditions of the land we are sooner or later going to inhabit.

Sontag goes on to discuss the 'lurid metaphors' with which the 'kingdom of the ill' has been 'landscaped.' Her argument is that it has become much harder in advanced industrial societies to come to terms with death to the point where 'death is an offensively meaningless event so that disease (she refers here especially to cancer) widely considered a synonym for death is experienced as something to hide.' (6)

Sontag's view is that some diseases are seen as worse, metaphorically, than others. In particular she describes the contrasting views, historically and in literature, of cancer and of tuberculosis as, respectively, being the target of 'punitive or sentimental fantasies'. She compares TB to cancer, the former a romanticized disease, the latter not, (7) and then goes on to chart and challenge the metaphors for the two kinds of illness, examining the sources for the 'current fancy that associates cancer with repression of passion.' (8)

I digress now to disability, and how often well-meaning people have opined, having never met my grand-daughter who has Down Syndrome, that such children anyhow are 'happy' and 'loving' which must be some comfort--the larger assumption being that the birth of a child with a disability is a great misfortune. Another stereotype that has come to my attention in the past two years regarding illness includes the supposed connection between arthritic conditions and rigidity of personality.

To return to Sontag before moving on to the memoirs, an important part of her argument centres on blame and the habit of psychologising around illness. She traces an early instance of this thought in Karl Menninger's proposition that: 'Illness is in part what the world has done to a victim, but in larger part it is what the victim has done with his world, and with himself.' (9) It is easy to extrapolate here to find echoes of Menninger's belief in attitudes towards marginalized groups the world over: from rape and incest survivors to the unemployed and members of vilified racial and religious groups.

Sontag takes issue with Menninger:
   Such preposterous and dangerous views manage to put the onus of
   the disease on the patient and not only weaken the patient's ability
   to understand the range of plausible medical treatment but also,
   implicitly, direct the patient away from such treatment. Cure is
   thought to depend principally on the patient's already sorely tested
   or enfeebled capacity, for self-love.' (10)


Listening

In early December of 2003 three seemingly unrelated events occurred in my life. I had my first permanent hair colour professionally applied, I began to paint the hallway of our house and I radically changed my diet, having been diagnosed with coeliac disease. Around this time I did a favour for my daughter's friend, a young woman with a toddler and expecting a baby. She'd woken with a severe rash. Her partner had left for work early, dismissing her fears. I helped organize her toddler and drove them to the doctor's surgery. A day or so later I developed a light rash, a fever. By Christmas I was depressed and exhausted. A few days later, I tried to finish painting the hallway but have never finished it. Midmorning of the 28 December I began to have stiffness and severe joint pain. My GP was sympathetic, suspected post-viral arthritis caused by parvo-virus, the simple childhood illness my daughter's friend turned out to have. He knew my hectic schedule and insisted that I needed time off. From early January I converted my recreation leave to sick leave. I had one month's sick leave, then two. The first rheumatologist said 'joint tenderness,' looked askance at my sick leave and threatened prednisone if I took any more time off. I mention this because I was already taking the now banned Viox at the maximum dose and when he asked how bad the pain was, I'd replied: 'At this moment I feel as if I've been shot through both heels.' I couldn't walk more than a few metres at a time, I was often bent over with stiffness in my spine and there were occasions when I could not get out of bed without taking pain relief first.

Needless to say, I couldn't concentrate on much. I couldn't read. Every joint in my body hurt day and night. My quality of life was very poor. I couldn't imagine returning to work and I was in no state to make decisions of any kind.

Journal entry, Jan 03

Hello Monday. I'll ring the doctor and see if I can see him today. We had our juices this morning. They make us both feel virtuous. We have a lot to do but what I'd really like is to stay in bed. I have severe nausea. Could it be the juices? I have an ear infection in my left ear, a fever and rash, dry, sore eyes, cold feet and hands.

Tuesday: Some things are better, some worse. I'm doubled over with stiffness and pain. The ear and fever are better. Rash the same--especially on my face. I fear it is the butterfly rash of Lupus. Despite everything, I have some sort of deep faith in my body. My appetite has improved. I'm making juices every day, staying off dairy and actually feeling better. I mean, in between the pain and suffering I feel less weak and ill. I feel I'm giving my body its best chance. I've taken my second panadeine for today and begin to consider a third.

What is striking in this entry and in many others like it, is my self-blame and attempts to make sense of and control my illness via diet, medication etc. Evident in some entries is a tendency to blame the medication--variously painkillers, anti-inflammatory drugs, alternative remedies--for my symptoms rather than the illness itself. I lost almost ten kilos in weight. My hair started to fall out.

Sleeping was impossible. Twice, I weaned myself off all medications but reverted, each time, to a desperately ill, bedridden state.

I kept looking for causes, believing at times that the hair dye or paint fumes might have been factors. There is evidence that environmental factors may play a part in illness but in my case these concerns masked an inability to believe that I could just get sick: that I had an illness which was beyond my control. I began also, under the pressure of the 'new age' zeitgeist to succumb to other kinds of arguments: that my physical state might signal some psychological unease, that some dreadful karmic event was taking place. Was it that angry message I'd left for the sick young woman's husband? Was it a punishment for all the new fads in diet and treatment I'd mentioned to my close friend with Rheumatoid Arthritis? She, at least, knew I was motivated by love and concern. I notice, too, how adept the unwell become at accepting or deflecting blame. Often, my partner or children would ask: 'What have you been doing?' [i.e. to deserve this] 'You shouldn't have carried that shopping bag. Did you walk too far today?'

The gift that came in the acute stage of my illness was a rheumatologist who listened and set me straight. She smiled warmly and asked me to tell her everything that happened leading up to the illness. I described my long list of woes and mumbled something about family stresses by way of apology. When I mentioned sick leave her response was: 'Of course you needed time off.' After a careful and thorough examination she said, 'You have an illness. It has nothing to do with stress or anything you have done. The illness is causing the symptoms you describe but I very much hope it will be temporary.'

Whew. I repeated some variation of what she'd said to anyone who asked: 'Do you think it's all the stress you've been under?' carrying, as it does, an undertone of, 'Perhaps you could have taken better care of yourself'. My response now would be to point out that many people undergo enormous stresses but not all of them happen to contract an illness. Ditto to the natural therapist who suggested that too much thinking and academic work was causing poor circulation and therefore cold feet. I've been thinking for more than four decades and it hasn't affected my feet until now.

Why do otherwise reasonable people blame themselves for illnesses? In her memoir, (11) edited posthumously, Julie Lewis describes the onset of Parkinson's disease. She traces the beginning of her tiredness to a trip to India when she was sixty-two. Rereading her life in terms of the illness, she writes, 'A story can start anywhere and for my purpose this story begins in the mountains of India fifteen years ago. At least that's what I believe now.' (12) Lewis is climbing a steep slope and cannot reach the summit. As she rests and tries to recover from the climb, she is beset by the idea that 'either I have reduced my life expectancy by several years or that some other penalty is in store. It's a powerful feeling, that I will recall seven years later.' (13)

Lewis seems to feel that avoiding the climbing might have forestalled the illness whereas, of course, her sudden fatigue was likely an early symptom of the illness and not the result of overextending herself. Although she has completed this climb in the past, she feels that the trek up the mountain is difficult enough for the young people present, and 'at sixty-two I should know better.' She quickly moves into self-deprecation; so strong is the cultural view of physical impairment as a kind of character flaw.

Is this the way we make sense of our experience of infirmity? Do we think in terms of possible explanations, causes, anything that will increase our sense of control? The logic is clear; if we find the causal factor, we might be able to modify or eliminate it.

Lewis describes her relief at eventually finding a health care professional who would really listen and respect the need for the modicum of control afforded by being active in decision making about one's treatment and care. When seeking a second opinion on her initial diagnosis, Lewis found she was 'patronised, stripped of my identity and not listened to.' (14) She decided to 'shop around' for a compatible specialist and found the process worthwhile. 'Not only did I find a doctor who listened, monitored my progress and was up to date with every new piece of research, but through him I was able to access a team of experts.' (15)

Susan Griffin, in What Her Body Thought, (16) describes the exquisite moment of someone listening:
   Did the German doctor help me? Yes, she did.... She prescribed
   organic food and massage, gave me injections, drops, ointments....
   And there was something else she did, less for my body than my
   mind ... through a medical lens, she saw what was happening in my
   body and let me know that she did.... With a delicately subtle
   intelligence, her face registered an understanding of what I was
   feeling. The questions and her comments were like probes into my
   own bodily knowledge. It was as if a prisoner long held in solitude
   were suddenly invited to enter a brilliantly revealing conversation.
   Though I was grateful that she was able to get me well enough to fly
   home, more than anything else she did, I found the sharp dexterity
   of her mind healing. She had borne witness to my experience. (17)


Griffin asserts, too, that although there are medical practitioners today who listen and are more compassionate, the medical system itself 'diminishes the significance of the patient's testimony.' She writes, 'Even with the most sensitive practitioners, you will seldom be asked to give full witness to the life of the body.' (18) In dealing with the politics and economics of illness; with questions of the ways in which 'money operates in the world much like physical energy does in the body.' (19) Griffin enumerates, without flinching, the ways in which her illness undermined every structure of her life--including her ability to support herself and her child by her writing: the possibility of needing to sell her house: her fear of becoming too burdensome or dependent on the care of friends, and her awareness of 'how being sick can impoverish, how poverty increases the misery of sickness, and how the implicit violence of this process wounds the soul as well as the body'. (20)

Nancy Mairs, who lives with Multiple Sclerosis, was initially diagnosed with a brain tumour. In Remembering the Bone House: An Erotics of Place & Space, (21) Mairs, in her characteristically blunt and irreverent style, describes her way of coping:
   I need a lot of information. That's my way of countering the
   helpless panic that the thought of having a brain tumour triggers.
   Some people don't want to know anything.... For years my
   father-in-law will swallow the blood-pressure medication his doctor
   prescribes without once asking what his blood pressure is. I can't
   achieve that blissful ignorance. I once trusted an obstetrician and
   a paediatrician too much, and the damage to my soul has never
   healed. This time I want to participate, and if necessary to balk,
   at every step of the way. (22)


Mairs' memoir is of particular interest for its status as what might be called a meta-memoir, insofar as she comments on the form as she uses it and makes problematic the notion of the reliability of memory. Mairs writes: 'I'm ever aware of my self as a cultural, not merely a personal, construct.' (23) Mairs' work is particularly transgressive for its insistence on her own--and other women's--'erotic development', and on challenging the notion that women with disabilities are neither sexual nor sexually desirable.

Turning back to my original question of what women's memoirs have to offer on the subject of illness and disability, I want to suggest that the reading of such memoirs is another kind of 'listening'; one which offers many benefits but perhaps, also, requires a different kind of reading practice. Janet Mason Ellerby argues that, 'rather than suppress our emotions, memoirs invite us to respond with a concomitant heartfelt resonance.' Ellerby, like Mairs and others, believes that memoirists write 'not just for self-awareness but to confront the moral dilemmas of a dissonant culture'. (24)

Reading about difficult topics can be confronting but the skill of the writers, in this case Mairs, Griffin and Lewis, ameliorates the difficulty through the use of humour, an often self-deprecating irony, and a writerly sense of balancing the dark with the light. (25) In the work of Mairs, Griffin and Lewis, there is, too, a self-reflexivity, an acknowledgement that the work of memoir and of re-envisaging the past is not straightforward. Lewis wrote: 'Nostalgia for all its appeal can also be subversive. You can't go back except by creating a kind of fiction. A truth more compelling than the reality.' (26)

In the writing, such memoirs have the power to offer the writer a way of representing their experiences, of being heard by others, of passing on information which might forestall a certain amount of suffering in other women. They also offer a channel for the important political and cultural work of challenging stereotypes and breaking silences. Of great importance in this regard, too, is the increasingly widespread phenomenon of the anthology of women's stories or shorter memoirs dealing with specific categories of illness. (27)

In the reading, I was delighted to find Julie Lewis still alive in the pages, affirming her joy in life, finding some positive aspects of dealing with illness in increased compassion and a deeply felt appreciation for the people, places and pastimes she loved best. In short, her memoir is a testament to living fully and being open to experience until the very last moment:
   Soon I'll be going home again, to that house on the hill that looks
   out over the ocean through a leafy screen of trees. At dawn the
   birds start. Their chorus fills the air, rising, swelling until the
   whole world seems filled with sound ... then suddenly there is
   silence. Everything is still. The early morning haze clears and
   already there is warmth in the sun ... (28)


Griffin's memoir includes a section titled 'The Body Electric' a creative evocation of the body's sensations. I'd like to finish with Griffin's short piece titled 'New' which I believe indicates the transformative potential of women's memoirs via witnessing the life of the body and exploring mind-body connections newly forged by the process of writing illness:
   That sense of descent, you hear yourself saying and then stop, the
   words singing from and then echoing back to your body, a kind of
   music now, in the making, hurtling downward, and before you
   begin the next phrase you are dancing, possessed by perfect
   timing. (29)


Notes

(1) The memoirs have been chosen for the range of illnesses represented, familiarity with the writer's work and experimentation with aspects of the memoir form.

(2) Nancy K. Miller, Getting Personal: Feminist Occasions and Other Autobiographical Acts, New York : Routledge, 1991, 1.

(3) A cancer survivor and educator advertises his workshops in Victoria using the term 'dis-ease'. The South Australian Cancer Council now publishes a list of 'cautions' relating to this particular approach, concluding: 'If a person does not get well using this therapy then it is seen as a defect in the person rather than the therapy itself. This is an enormous burden to place on someone with cancer.'

(4) Susan Sontag, Illness As Metaphor, New York: Farrar, Strauss and Gironx, 1978.

(5) Sontag: 3. Sontag died of cancer in New York on 28 December 2004.

(6) Sontag: 8.

(7) Whilst it's outside the scope of this paper, one might argue that HIV status and AIDS have to some extent displaced cancer since the 1970s in having the dubious status of the most abject disease.

(8) Sontag: 8.

(9) Sontag: 46.

(10) Sontag: 46,47.

(11) Julie Lewis, 'A Stationary Traveller', Ed., Joan London Westerly, vol 48, 2003, p12-23.

(12) Lewis: 12.

(13) Lewis: 13.

(14) Lewis: 17.

(15) Lewis: 17.

(16) Susan Griffin, What Her Body Thought: A Journey into the Shadows, San Francisco : Harper San Francisco, c1999.

(17) Griffin: 33.

(18) Griffin: 282.

(19) Griffin: 115.

(20) Griffin: 119.

(21) Nancy Mairs, Remembering the Bone House, Boston: Beacon Press, 1989.

(22) Mairs: 233.

(23) Mairs: 7.

(24) Janet Mason Ellerby, Intimate Reading: The Contemporary Women's Memoir, Syracuse: Syracuse University Press, 2001. Introduction.

(25) Tristine Rainer, Your Life As Story: Discovering the 'New Autobiography' and Writing Memoir As Literature. New York: Jeremy P. Tarcher/Putnam, 1997. Rainer advises memoirists to balance the 'light' and 'dark' aspects of the narrative.

(26) Julie Lewis, 'Natural Histories', Westerly 34.4 (1990), 75 in 'Julie Lewis (1925-2003): The Life and the Work', Pat Jacobs, Westerly v48, 2003, 7-11.

(27) Beating Our Breasts: Twenty New Zealand Women Tell their Breast Cancer Stories, Cape Catley Limited, Auckland, 2000, compiled and edited by Margaret Clark, was distributed to women at the time of their diagnosis by the Cancer Society in 2000.

(28) Lewis: 23.

(29) Griffin: 327.
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Author:Smith, Sari
Publication:Hecate
Geographic Code:8AUST
Date:May 1, 2005
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