Hey folks - long time no post! I'm going to post a short series of stories and reflections about my health journey, and I thought I'd start with an essay I wrote from last spring. I was taking a class on teaching writing and learned some things that helped me jump start the telling of my own story. I changed it a bit to tamp down some of the academics. Thanks for reading!
A Story of Sickness and Personhood
I share stories
with my students. Often the stories are personal. I share them for a number of
reasons; to pass time, to further endear the students to me, to give everyone a
break from our academic work, and to assert an argument – generally in favor of
living life a bit more recklessly than they are encouraged to live. I also tell
stories about myself because by telling the stories I’m able to take hold of a
human element within myself that becomes obscured in the slog of high school. I’ve
told stories about my travels, about particularly eventful times with my
friends, about touching or edifying moments in my romantic relationships. However,
what might be my most powerful, most human and edifying story of all rarely
makes it into my classroom. In fact, it has barely entered my writing of any
kind. Even describing it here requires language I don’t feel is available to
me. How do I begin? – the events do not occur to me chronologically, or
any-logically. How do I bring to the page something that feels both unitary and
dispersed across the last 12 years of my life? How to I translate to language
something so inherent to who I am that it feels like family? What am I
confronting when I attempt to share this story? Even here I struggle to deploy
definite language.
It has been my
belief that I have struggled with the story of my body in part because the
story is enormous and unwieldy, meaning that it would take more skill than I
seemed to possess to fashion and fix it into words. Studying different
philosophies of writing instruction (and writing itself by extension), I have
come to understand my struggle not as a want of ability, but as a positioning
within discourses that discourage or forbid I tell my story as I felt and feel
it. I have struggled to find the right language, the right narrative position,
and the confidence with which to tell my story. I will attempt to bring these
discourses, and my discovery of them, to light here.
While the
dominant narratives around chronic illness are changing with help from advocacy
groups and policies like the ADA, they remain narratives I want nothing to do
with. Disability and illness continue to be tinged with the fear of contagion
and subsequent stigmatization, or an association of the sick person with
weakness or emasculation. I have struggled to talk about my illness in any part
for fear of that part overwhelming any other impression of me – to become a
chronically ill person, rather than a person with a chronic illness. The first
hurdle I have faced is to locate the language that assembles a narrative with
which I am comfortable, one that feels genuine to my experience.
This social
struggle of how to choose language appropriate to my experience has lead to
many winding and long-winded answers to cursory questions, and ultimately to
cursory answers. Much of the language available to me is cliché, culled from
soap operas (or worse, parodies of soap operas!), language that was easily
recognizable to my listener, but felt disingenuous and clunky on my tongue. There
were no words I could call upon to being to cover what it was like for me. I
should say that when I attempted to delve into these experiences with my whole
heart, into crying, empathic descriptions of procedures, even in more private
conversation, my listeners, with a few exceptions, became uncomfortable, and I
followed suit.
Over years of
telling my story, I was rewarded time and again when I positioned myself as
unaffected, above the chaotic and unpredictable events of my life. When I would
talk about how I continued to bicycle, or teach, or be cheerfully resilient,
people would tell me I was strong, that I was handling all of this so well, or that if they were in my shoes
they would be such a mess! People would cringe obligingly when I showed scars,
but they (or mostly I) were quick to move past how scary surgery can be. My
nurses and health care providers were all so impressed with me – when I was a
charming, smiling person they would visit with me, chat with me about their
days. While I loved the attention and enjoyed the time, this new relationship
made it difficult for me to ask for help, to return to my role as patient. Within
these narratives, I struggled to maintain my concept of self (masculine, self-possessed)
while having a chronic illness and being a patient (emasculated, weak). Dominant
narratives of masculinity and heroics positioned me as invulnerable and
disaffected.
In addition to
finding words that feel right, I have struggled to position myself in relation
to a story so integral to me. This initially took the form of ‘not knowing
where to start,’ but has evolved into ‘not knowing what to say.’ I find myself
wondering how much or what parts of my story a person would need to hear to
make sense of the story of my kidney failure (even the words ‘kidney failure’
feel totalizing, and are problematic for me).
Tracing the
discourses in which I am positioned, I have found that I am quick to name the
concrete facts of my experiences and omit what those experiences were like for
me. My stories are bursts of ‘when they removed my tunneled hemodialysis
catheter, which had been in place for twice as long as initially planned, the
tech put a knee on my shoulder to gain leverage while he tried to pull the
catheter from the scar tissue that had secured it to my jugular vein. On the
fourth try, the last one before surgery he said, I felt the tug like gravity from
my stomach to the top of my head before it broke free from my vein and pulled
out of my shoulder. The process, which lasted no more than five minutes, has
been one of my most persistent memories.’ This, and others like it, is a series
of what happened, rather than what it was like, and at best tells an incomplete
version of what happened, missing entirely what it meant. Where am I in this
story? I have no authoritative presence here.
The final
struggle I face when attempting to position myself in relation to the story of
my body over the past 12 years (at least the last one I will deal with here),
is how to write about a story that is ongoing, and will continue to be ongoing
for me. Stories have for me (including the stories I share with my students)
followed a conventional narrative arc, delivering a relatable message from a
contained set of events with a beginning, middle and end. There have been
segments of my story that played well. I can share the arc of an incident, or a
rough period that seems to resolve in the end, but the reality is that there is
no ‘end’ to this story, no cure, until MY story is over and buried. Though even
THAT is a misnomer, to consider my story complete and fixed at any point. We are
continually becoming, evolving. My narrative may then shed the burden of
authority over who I am or what my life means. It shifts from an authoritative
statement to a representation, a world played out over time, but a world fixed
and placed some distance from whoever or whatever me and my sickness are.
In addition to
my struggle to appropriate the right language and my struggle to find the best
position from which to tell my story, I have struggled with how my story will
be received by those who hear or read it. This is not a unique anxiety, as any
personal story can seem bound to the person telling it. When I become
vulnerable in front of my students, or in an essay, or pretty much anytime, I
retreat into my turtle shell. I shy from challenging all of the narratives I’ve
mentioned here, in addition to the dread I feel of boring my audience. The more
I assume narrative authority over my experience, the further I withdraw from
the safety of the conventions that dominate my genre. What has been helpful is
the potential of writing as some classmates experienced it. Their responses,
indicating that they gained control over the narratives dominating their
genres, were exciting and empowering. The story as fired pottery, strong enough
to withstand embellishment, and my recognition that my anxieties about my
stories are shared by others.
The second tool
I have to address my anxiety of reception is the concept of autoethnography,
where a person considers themselves as a place to be studied. With this study
of the self I treat my story as a place. From this place I am able to employ my
telling of my story as a disruption to the narratives that would impede or
limit me. The chronically ill young person need not be limited to tragedy or
hero. Perhaps obviously, my position as multi-faceted human being with a
chronic illness challenges that totalizing narrative. By telling my story as
autoethnography, I also gain a new sense of what it means to be me, a critical
sense of the discourses that shape the lives of those with chronic illness. By
recognizing and distancing myself from the dominant narratives of chronic
illness, I can both tell my story less encumbered by those narratives, and I
can begin to create a more empowered sense of what it means to be me.
Here’s a story
I’ve not yet shared with my students. About once a month I make a trip to my
kidney clinic. I go to get my blood levels checked, and sometimes to get a shot
that helps me make red blood cells. I enjoy the trips – the nurse I see is
practically an old friend of mine. We joke with each other and talk about our
lives. She knows what I mean when I tell her things. Last week, when I visited
the clinic, a middle-aged woman was having her blood drawn the same time I was,
and the four of us – two nurses and two patients – all bantered away in this
small room. The woman talked slowly and laughed easily, and for a moment I
wondered about her mental state. When she laughed she would leap out of her
chair cackling, and slap her knee or bang on the wall. Her nurse was clearly
having a hard time getting her to sit still and have her blood drawn. When she
finally had the needle ready, the woman waved her off, her breath caught and
she started crying. She hated needles, hated having her blood drawn, hated it.
Her nurse asked questions about her life, her kids, helped her calm down.
Meanwhile, I bared my arm and calmly watched my nurse slide the needle in and
draw two vials of blood. ‘See!’ she said, ‘See how good he is?’ She was half
kidding. No way, I thought. I told the woman seated next to me that I understood
not wanting blood drawn, not wanting the needle stick. That as much as I love
these nurses, they do not understand. That sometimes the greatest struggle of
organ failure is not surgery, strict diets or a future riddled with
complications, but braving the same small needle stick month after month after
month after month. I know this. This has become a home for me.
