One of my first memories involves ulcerative colitis (UC), the disease that, as a teenager, I came to think of as ‘the dreaded bowel disease.’
At a very young age I learned to scout out the nearest ladies’ room and carry plenty of tissue. My first recollection about the consequences of not making it to the bathroom on time involves a pink snowsuit with suspender pants and my Mom’s face red with fury. I was four years old, playing in the back yard on a winter day, all bundled up to keep out the cold. Under the direction of my older sister, I bent over a huge snowball, trying to help push it toward the ‘snow fort’ he was building. I got a pain in my belly and ran for the house. As I fumbled to take my mittens off and turn the knob to get inside, I yelled, “Mommy, I gotta go.”
Mom, busy changing my baby sister’s diaper, told me to “hold it a minute.” Experience told Mom it was not unreasonable to ask a four year-old to control her urges for sixty seconds. But this four year-old could not and did not comply.
Once Mom got me cleaned up, she spanked me. I had never been spanked before. I have no visceral memory of the slaps hurting. I remember Mom’s eyes wide with anger, the frustration in her voice, the sagging disappointment in her shoulders when it was over. I am not down-playing the all – too – real physical pain of UC. But for me, fifty-five years after that first (and last, bless her, Mom was a very good mother who made a mistake, my goal is to be as good a mom and grandmother as she is) spanking, the worst memories of the disease remain the shame, embarrassment, isolation and self esteem problems that the need to conceal the awkward ‘urgency’ created.
I can still feel her shame and mine as I write about it, this very moment. I can feel her fear: that I was out of control; that she was out of control.
This was the beginning of my education about the power of fear of loss of control as it relates to disease. Obviously, this thought didn’t come to me as a four year old. But even at four, the message was clear: if I didn’t want to get walloped it was best to keep my lack of bowel control concealed. With age I learned that the symptoms of the dreaded bowel disease could not only make Mommy spank, but could induce boys on the playground to taunt, and teenage girls to titter.
People need to feel safe. I sure do. Who wants to be reminded that we are soft- skinned vulnerable creatures? For security sake we need to feel in control of our environment and our selves. All kinds of conditions threaten that control. What could be more basic than the need to feel safe in our bodies? That we are born dependent can’t be denied, but a few years after birth, control of bodily function is a given for most people. Disease, disability, any condition that takes away that baseline of corporal control is a kind of body betrayal to the person affected and an unsolicited reminder to the well and the unwell that humans are vulnerable and that (forgive the very bad pun) ‘shit happens.’ Things do go wrong. All bodies refuse to work as desired at some time or other. As humans, we don’t want to be confronted with the fact that no amount of research, medical break-through, or new technology is going to keep our bodies from eventually breaking down.
We are at risk, some more than others, but not just four year-olds getting spanked for situations beyond their control, or old folks with a confirmed diagnosis, all of us, at one time or another. Most people are not happy to be reminded of their own frailty. I think most chronic illness (especially conditions like UC which exposes the messiness of life) scares people because they are forced to consider their own tenuous bodies. People who are well want to believe that disease happens to other people, other people who have somehow lost control, older people or people with less access to care, people unlike themselves.
Of course, it’s not just UC that people fear. My real life dad lived with mild Alzheimer’s, if any degree can be referred to as mild, for the last few years of his life. I write, sometimes, about a demented dad. People ask, “How do you feel about exposing your father in print?” They mean, “How could you possibly disrespect your dad by portraying his dementia?” For expedience and self protection I answer, “I write fiction.”
What I really think is that Dad suffered from a universal condition, just a less “mild” form than most of us suffer. All people in the real and imagined world are a bit doddering. Our minds, like our bodies, just don’t always do what we want them to do. This is not news to anyone with an iota of self awareness. No one escapes this human condition. If you think you are never weak-minded, you are, at the least, in jeopardy of being a bore.
Say you won a Pulitzer in Literature at 30 and died in a car crash at 32; some part of you died mentally frail. You may have been successful at keeping your fragility from your editors, publishers, and readers, but something in you was teetering and foolish.
Like failures of our GI tracts, whether in a big way as happens with UC or in a more contained and occasional way, as happens with an intestinal virus, all of our systems fail all of us, in greater and lesser ways.
As a writer, the danger is presenting a ‘Dad with Alzheimer’s’ character as only infirm. No writer is talented enough to convey the exact complexity of a human being. This is no reason to settle for a stock portrayal of “the Alzheimer character.” A living person and any character worth reading about can’t be summed up by a diagnosis. My dad was a whole person who had Alzheimer’s.
In fiction and life, the way a person’s body and mind function are facets of who they are. A danger for the person with UC is buying in to the belief that we are the disease. A danger for us all is lack of education and understanding. The medical community is becoming more informed, new pharmaceuticals, and surgeries exist. The general public is more awake to many illnesses. Disease or fear of disease is one of many challenges that inform our lives.
I am a whole person. I had ulcerative colitis. I have an ileoanal anastomosis. Don’t know what an ilioanal anastomosis is? Doesn’t matter. There are many other things to know about me. I’m fiercely working class. I have a sense of humor, loving friends and family, a beloved partner, friends and family, empathy, a body that gives me joy and trouble, food on the table, heat in the winter, and a mind that I hope stays open, strong and frail and doddering though I may sometimes be.
Did I mention I am a mémère with a fabulous granddaughter?