I am three years old, in a wheelchair, padded by pillows and rolled up blankets to ensure my tiny body and all the affixed tubes don’t jostle around too much as my grandfather takes me for a ride around the outdoor hospital patio. Everything looks and feels golden. Sunshine beneath yellow patio umbrellas as the ruffles flutter in the breeze and my grandpa hums Buddy Holly tunes.
This is my first memory.
/&
I often say I grew up in a hospital. But in between surgeries I went to school. At least, I think I did. When I look back on my childhood I can picture, feel, and smell the waiting rooms of all the specialists at the University of Iowa Hospitals and Clinics that I visited multiple times a year better than any classrooms or playgrounds. When I became an adult in charge of my own accounting I burned all my diaries and photo albums and yearbooks and any other evidence that I had ever been a child at all. But one memory from my elementary days wouldn’t burn. I like to keep it around, even if it’s hazy at the edges.
/&
In fourth grade, I ended up in the hospital, again, this time having kidney surgery. (I’ve also has numerous neurosurgeries and orthopedic surgeries, but my kidneys have always been the most troublesome.) I was only supposed to be in the hospital for a couple weeks, but the stay turned unexpectedly long because my left kidney hadn’t responded to the surgery like my right. Unfortunately, in order to keep my kidneys going until the problem resolved itself, part of the process had to be externalized. I had tubes stitched into my abdomen accompanied by a bag for each kidney. Wherever I went I had to either carry the bags or be pushed in a wheelchair with the bags strapped to the armrests. Since such an arrangement got in the way of things like math class, I stayed in the hospital instead of returning to school.
It was during this stay that I first visited the hospital’s medical museum on the eighth floor.
/&
As an isolated kid obsessed with reading historical fiction (I read every 1990’s youth lit offshoot of Little House on the Prairie I could get my hands on), the museum was everything I had wanted it to be. So many black and white photographs, grotesque things in jars, and prosthetics made of wood and metal and thick leather straps propped up in glass boxes. Surgical instruments, sharp and delicate. A big wicker wheelchair and crutches that stood like ghosts under mood lighting.
And around a corner, in stunning slumber: the iron lung.
My young mind didn’t know what polio was, but I knew this was far more than an artifact of history. This piece of someone’s life had been central and consuming. Yet now, here it was, silent and still.
I wheeled up as close as I could get to peer into one of the darkened, clouded windows on the side.
This is the moment I heard the first whispers of my ancestors.
/&
Time unfolded and I tried to forget those whispers. As I grew up, I distanced myself from disability in as many ways as I could. By fifth grade I knew what clothes I had to wear to conceal as many of the visible aspects of my disability, like my leg and back braces. By middle school I didn’t want to associate with other disabled people and stopped attending disability related events that I used to go to as a kid. By the time I was in high school I had endeared myself to the idea of becoming a writer. Along with this, I latched on to the hope that my writing could be the one aspect of my life not tainted by nerve damage or dysfunctional kidneys. I did everything I could to keep my experiences with disability, like those whispers from the past, off my pages.
But, as one might imagine, the spirits from the iron lung would not be silenced.
/&
When I was in college, I started having severe panic attacks and out of body experiences. I had cut away so many parts of myself in order to fit in that I didn’t know who I was, and the somatic response was fierce. I had to face the fact that my disability (and how people in the world viewed me because of it) would always be a part of who I was–where I had been, and where I would go.
/&
Flash forward to my 30’s. Aside from being in a loving and healthy marriage, nothing else in my life had turned out the way I had thought it would. This is, perhaps, a lesson we all must endure in our 30’s. As my favorite Willa Cather quote tells us: “There are only two or three human stories, and they go on repeating themselves as fiercely as if they had never happened before.”
As I found my hopes and dreams scattering in ever more far flung directions, I also became sick. I became fatigued to the point I needed to use a walker daily. Open wounds wouldn’t heal. My hair started falling out. Excruciating abdominal pain I had never felt before made it impossible to sleep. And a dark purple rash that looked like bruising broke out all over my body.
This, is, admittedly, a bit more hardcore than your average not-quite-midlife crises. I cannot guess how other people might have responded to the same situation. But me? I and headed to the cemetery.
/&
The weeks turned to months, to over a year, visiting a mounting number of specialists in search of a diagnosis. After hospital visits, my husband began, at my request, a ritual of finding a rural, secluded cemetery nearby. When we arrived I would wander around the stones then find a place to meditate, or cry, or commune with the ancestors, or whatever I needed to do. This was how I discovered how important it is to me to research and find stories of disabled people in the past.
/&
I am sitting on the ground in a small cemetery next to a white rock road. My walker keeps watch nearby, the metal glinting in the sun.
It’s been a long time since the iron lung, but I desperately don’t want to die without hearing the voices of my ancestors one more time.
I close my eyes and let the sunshine sink into my red-flecked and purple-speckled skin.
I refuse to go before I hear what they were trying to tell me when I first met them at the iron lung. At first, there is only the rustling of the breeze in the trees.
But then my heart gives three even beats and they tell me:
We lived before we died.
/&
In April of 2020 I was finally diagnosed with chronic IGA vasculitis, an immune disorder that causes several problems, most notably the inflammation and rupturing of small blood vessels in certain tissues including the dermis. In other words, the terrible rash I thought I had was actually exploding blood tubes caused by a haywire immune response. (Really not the news I wanted to receive at the onset of a global pandemic.)
Because IGA vasculitis does not just affect the skin, but also tissue in the intestines and kidneys, I now I have to keep an even closer watch on my kidney functioning, with regular blood labs and ultrasounds, since sometimes the vasculitis damages kidney tissue so much they stop working. Fortunately in my case, a daily medication at a low dose has effectively kept the condition under control.
/&
On top of the vasculitis diagnosis, between 2020 and 2023 I ended up needing multiple surgeries that required almost two years of collective recovery time, all while I continued to work full time and do classes for my Master’s degree. Those things did, quite obviously, slow my research and get in the way of communing with my disabled ancestors.
The research I’ve done so far was completed in stolen, desperate, and unexpected moments. There were many times when I didn’t know if either I or this project would survive to see it even begin. Now (in 2024) that I have graduated and my health is stable, I’m putting together what I have found so far. This is an ongoing project, and some of the stories I am saving for a documentary that I hope to produce soon. But I want to share as much as I can now that I am finally able to do so.
/&
Perhaps one day I will become a ghost and get to hear these stories firsthand, around a dinner table or a campfire. Certainly my words will never be as intriguing as the whispers of ghosts. But after these voices helped me face death and return to life, the least I can do is my best to ensure that at least some of their stories do not remain silent.
Chapter links:
University of Iowa Hospitals and Clinics Medical Museum
/&
Continue to Chapter 02. Lizzie
P.S.
In case anyone is interested, I have written out my parameters and scope for this project below:
- I am limiting the place and time of my research to Nebraska between about 1890-1920. After a while I may branch out into surrounding states or venture further into history, but for now this is the place and time I’m most connected with.
- Though there are important and deep histories surrounding deaf and blind people in Nebraska, those groups of people also have their own culture of which I am not a part of. In the future I hope to investigate these stories as well, ideally working with someone from those respective cultures with those lived experiences.
- So… what disabilities am I looking for? Well, it’s complicated. I’m primarily looking for people with similar types of disabilities as mine, those with nerve damage and types of paralysis as well as those with immune disorders. But I’ve found connections with people who had other types of birth defects, sideshow performers, and those who have lived at poor farms. A history of mental illness runs in my family so I have also connected to stories that have come out of asylums. So I’ll be writing about a lot of different people and disabilities.
- There is not a definite end to the project. This is a healing journey for me, an art as much as it is a research project.
- I’m using sources that are easily and publicly accessed. I know I could find out a lot more if I could travel to visit more archives in person or pay for access to more newspaper or genealogy sites. But alas, I have a full time day job and exploding blood tubes and my research has to fit in to the boundaries of my life.
- Even though I consider myself mostly an artist who cares about history, I do have professional and academic experience in research and I do take the ethics of telling marginalized histories seriously. I will do my best to present truth and facts, and cite everything I can. But there are always unanswerable questions and gaps in some stories. I am also the one putting these stories together, so my experiences and creative viewpoint will inevitably be present.
