I grew up in a hospital. 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. But my history is difficult to navigate, because 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.
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In fourth grade, I was in the hospital having kidney surgery. I was only nine years old but had already had neurosurgeries, orthopedic surgeries, other urology surgeries, and now had hit a rough patch with my kidneys. This was the third surgery I had to try to fix the same problem and I was only supposed to be in the hospital for a couple weeks. 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.
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Time unfolded and I tried to forget those whispers. But, as one might imagine, the spirits from the iron lung would not be silenced.
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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.
But it wasn’t until my 30’s, when I found my hopes and dreams scattering in ever more far flung directions, that a lifetime of surgeries, infections and life with a disability ultimately caught up with me.
I was 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.
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Sitting on the ground in a small cemetery next to a white rock road, my walker kept watch nearby, the metal glinting in the sun. It had been a long time since I had been nine years old and captivated in the medical museum, but I desperately didn’t want to die without hearing the voices of my ancestors one more time. I closed my eyes and let the sunshine sink into my red-flecked and purple-speckled skin. I refused to go before I hear what they were trying to tell me when I first met them at the iron lung. At first, there was only the rustling of the breeze in the trees. But then my heart gave three even beats and they tell me:
We lived before we died.
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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.
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On top of the vasculitis diagnosis, between 2020 and 2025 I ended up needing seven surgeries. I continued to work full time and also got my masters degree online, graduating in 2023. I am now nearing 40 and just getting around to start sharing the research I have been working on for several years.
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.
This is also an ongoing project. Some of the stories I am saving for other formats, including an in-person speaking presentation and a film documentary. 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, over and over again, even through the most hopeless of years. 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
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