The Two Suitcases Project involves teenagers with chronic illness working with professional filmmakers to create short movies. Storytelling methods include live action, animation, and puppetry.
If a person lives with chronic illness, is there “a person” that can be separated from the illness? I suppose many people would say, “Of course there is.” There must be some essence there, some self untainted by disease, some true soul within the sick body. Perhaps the true self, however, is not a form of essence, but rather a whole that is greater than the sum of its parts.
Homi Bhabha tells us that at the national level, pure identities can only be achieved through death: the efforts of certain populations to cleanse themselves of impure or creole elements.1 But if cultures, national or otherwise, are hybrid products, taking from here and there—then the individual is a hybrid too. We all encompass multiples: father/son, mother/daughter, Irish-American, a different self when sick and well. We are all in some sense between singular identities. In this model, illness is a facet like any other.
My friend Eamon Grennan, a poet who lives several months of the year in the west of Ireland and the rest in upstate New York, often writes about coming and going, being both here and there, his own hybrid identities. There is a continuity between Bhabha’s exposition of the experience of exile, the shifting boundaries of identity, and Grennan’s literary focus on the emigrant/immigrant. Grennan’s poem “Homelight,” about returning, contains the lines:
I lived again on
the razor’s edge between rain and shine . . . 2
The sense of threshold, of being caught “on the razor’s edge,” is also pointedly pertinent to the experience of life-threatening illness. The ill are neither within the well norm nor among the departed, who seem to beckon when one looks at the statistics or life-expectancy for those with serious conditions. Grennan’s poem is not “about” illness, but as a person living with disease, I can read my own experiences into its lines. It is profoundly banal to say that some form of flexible interpretability is one of the qualities of good writing, but it is. When I write something that a reader feels speaks to him or her, that’s a success.
Neither this nor that
I used to think I would have to stop being a patient before I could become a writer. In 1993, at the age of nine, I was diagnosed with Fanconi anemia (FA), a genetic disorder present in some one in 350,000 births.3 FA causes bone marrow failure, along with a number of possible physical abnormalities. The risk of developing various forms of cancer is greatly increased. I spent several years after my diagnosis with a Hickman catheter in my chest, on anabolic steroids, in and out of hospital, in and out of school. Throughout these years, writing was something I always did—and hoped to do more seriously in the future. At age twelve, I started my own magazine. I wrote often about myself and my illness, about hospital, about living with disease. To be a serious writer, however, I knew I would have to grow out of my childhood illness and write about bigger things.
The problem with thoughts of “growing out” of Fanconi anemia is that the disease doesn’t go away. I had a bone marrow transplant in 2001 and have been quite well since then, but I still live with a chronic condition. I am still at greater risk of contracting multiple maladies than members of the general population. The median life expectancy for a person with FA is twenty-nine.4 “Living with” FA is something that will always have to be done, and, for me, living with something means writing about it. I had a memoir of my experiences with FA published in 2008; this was followed by a poetry collection, which again drew in part on my illness, the acute moments and the long in-betweens.5
Illness, like writing—especially writing poetry—requires patience. Disease is often thought of as an extreme: akin to poverty, or a negative view of old age. It is a nadir of sorts—we ill are closer to death than the ordinary living. We are exiles from whatever constitutes the mainstream experience of grounded, healthy Western subjectivity, like Bhabha’s postcolonial subjects or Grennan’s wanderer. But chronic illness is often simply something that takes up time—time away from other things through doctors’ appointments and the days you get sick when someone else wouldn’t. Chronic illness is long periods of anticipation followed by acute moments. It has vaguely poetic rhythms.
Illness is a part of the self; it is a form of identity. But it is not an index for the self, any more than a piece of writing by a person is the person. Beckett’s plays may represent some essential part of Beckett, but they are not Beckett. A picture of a lesion on my tongue in a dental hospital reference book is a picture of a part of me, but it is not me. There are fragments of us in the world, some larger than others, but the whole is unknowable, usually even to our own minds. Identities are hybrid.
My own identity is now fused. I have become a writer, while still being a patient. Writing has always been a way of accounting for my illness to myself—an attempt at carefully analyzing my own path through life, as a person, and as a person with Fanconi anemia. It is an exercise in working through identities, as a writer, as a patient, as a patient who is a writer, as a writer who is a patient.
Other people as support
Grennan’s “Homelight” suggests that we can only find the meaning of our lives, our hybrid selves, in other people. At the end of the poem, a “you” waves at “me,” the speaker, and the speaker waves back,
at you framed there, there where we live
in this brief-lit, but lit, ring of winter.6
Illness does often seem like a long winter. If it is lit, it is lit by the experience of not having to go through it alone: the comfort of others to support and take care of us in the moments of torment. For the writer, the other that gives meaning to the self is surely the reader. Written words can have no meaning unless they are read. I have also found meaning in writing through the making of friendships with people like Eamon Grennan. Being a writer is so often solitary; it is a joy when writing is something that can be shared.
Recently, I have become involved in a project that is about the shared experience of creativity as much as it is about shared experiences of illness. The Two Suitcases Project, developed by artist Emma Eager and an Irish arts and health organization, Helium, gets its name from something a nurse once said to me. I was told that when you go into hospital, you take two suitcases with you—one to carry your clothes and another to pack away your dignity. The initiative involves teenagers living with chronic illness making short films, aided by professional artists and moviemakers. The basis of the first short film was my memoir.7
Art and culture are about the production of meaning from individual and collective experiences. Bhabha writes that culture has been a “strategy of survival” for the marginalised.8 Throughout Irish history, identity was certainly passed on through culture while we did not govern ourselves. In a similar way, the person with illness may preserve his sense of self by being creative while under the care of doctors and nurses. In my case, writing kept the mind alive while the medicine attended to the body.
Culture is beginning to be recognized as a strategy of survival in healthcare for patients who may feel at the margins of typical human life. Two Suitcases is a fine example of “arts and health” practice, a hybrid field of work which the Arts Council of Ireland defines as involving “clear artistic vision, goals and outcomes,” while at the same time promoting “health and well-being by improving quality of life and cultural access in healthcare settings.”9 I could write on my own, and that has helped me to survive my illness. The distinction of a project like Two Suitcases is that film gives people the opportunity to express their creativity in myriad ways. It takes more than an individual. It takes people with common interests and encounters to produce a shared meaning. If what is produced is of benefit to the wider medical community, in illuminating patients’ lives and in turn how they interact with healthcare, so much the better.
In my own life, Two Suitcases is another step on the patient–writer continuum. Working with teenagers as a mentor allows me to share any tips I may have gleaned on effective writing; at the same time, though the work done is not necessarily always about “illness,” conversations happen in a community of people with similar experiences. The meaning, for me at least, is made through sharing with other people my experience as a patient, as well as my experience as a writer. In my life now and my work, the one can’t be split from the other.
- Artsandhealth.ie. “The Arts Council: Arts and Health Policy and Strategy.” Accessed February 22, 2013. http://www.artsandhealth.ie/wp-content/uploads/2011/08/Arts-Council-Arts_and_health_policy_strategy-2010_2014.pdf.
- Bhabha, Homi K. “Freedom’s Basis in the Indeterminate.” October 61 (1992): 46–57. http://jstor.org/stable/778784.
- Bhabha, Homi K. The Location of Culture. London: Routledge, 1994.
- Fanconi Anemia Research Fund. “What Is Fanconi Anemia?” Accessed February 10, 2013. http://www.fanconi.org/index.php/learn_more.
- Grennan, Eamon. What Light There Is. Oldcastle: Gallery Press, 1987.
- Shukla, Pallavi, Kanjaksha Ghosh, and Babu R. Vundinti. “Current and Emerging Therapeutic Strategies for Fanconi Anemia.” HUGO Journal 6, no. 1 (2012). http://www.thehugojournal.com/content/6/1/1.
- Homi K. Bhabha, The Location of Culture (London: Routledge, 1994), 5.
- Eamon Grennan, “Homelight,” What Light There Is (Oldcastle: Gallery Press, 1987), 53.
- Pallavi Shukla, Kanjaksha Ghosh, and Babu R. Vundinti, “Current and Emerging Therapeutic Strategies for Fanconi Anemia,” HUGO Journal 6, no. 1 (2012), http://www.thehugojournal.com/content/6/1/1.
- “What Is Fanconi Anemia?” Fanconi Anemia Research Fund, accessed February 10, 2013, http://www.fanconi.org/index.php/learn_more.
- Two in a Million: A True Story about Illness and Love (Dublin: A. & A. Farmar, 2008), and Feather Silence (Dublin: A. & A. Farmar, 2010).
- Grennan, What Light There Is, 55.
- The film, simply entitled Two Suitcases, was written and directed by Emma Eager and myself, and can be viewed on YouTube at the following URL: http://www.youtube.com/watch?v=oy1C3cODM20&feature=youtu.be.
- Homi K. Bhabha, “Freedom’s Basis in the Indeterminate,” October 61 (1992): 47, http://jstor.org/stable/778784.
- “The Arts Council: Arts and Health Policy and Strategy,” Artsandhealth.ie, accessed February 22, 2013, http://www.artsandhealth.ie/wp-content/uploads/2011/08/Arts-Council-Arts_and_health_policy_strategy-2010_2014.pdf.
BEN MURNANE, MPhil is the author of three books, including a memoir, Two in a Million (A. & A. Farmar, 2008), and a collection of poetry, Feather Silence (A. & A. Farmar, 2010). He has written for several newspapers, including the Irish Times and Irish Independent, and for Irish national radio. He is also writer-director, with Emma Eager, of an award-winning short film, Two Suitcases. Ben holds a BA in Theatre Studies and an MPhil in popular literature from Trinity College Dublin and is currently a PhD candidate in the School of English at Trinity.