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Mother demonstrated resilience to live with disability
The behaviors that Julie Cole modeled set the tone not just for how we would go about my treatment, but how I would go about living with an illness
May. 8, 2022 9:30 am
I've seen a great deal of my mother over the last two weeks as I am staying with her and my father while recovering from wrist surgery. Julie Cole is the lucky one who gets to care for me every time I come home from the hospital in a cast or a sling. Thanks to 29 years of advanced-stage rheumatoid arthritis, which I regularly mention in this column, that's happened quite a few times. So I suppose I should write something nice about her, especially since today is Mother's Day.
In my family, we tend to not be outwardly affectionate people. I'm pretty sure the last time my mother and I hugged was at Jack Trice Stadium in celebration of a Cyclone touchdown. Instead of sappy sentiments like “Thanks for being my mom,” I usually write something corny in her Mother's Day card like “Thanks for the womb and board.” One year I bought her a bottle of wine and wrote in the card “Something to drink from the reason you drink.”
Tuesday, April 26 was the 21st time Julie Cole drove me to the University of Iowa Hospitals and Clinics for surgery. She drove me home that same day after the surgeon had excised a bit of bone and restrung a few tendons. 12 days later, I remain at my parents’ house with my dominant arm wrapped past the elbow in all sorts of padding and plaster to keep it immobilized, using clunky dictation software to write this article.
While every orthopedic operation involves a fair amount of post-surgical pain, this one has been bearable. Not all of them have been a cakewalk. My first surgery, which took place four days after my 16th birthday, was a total hip replacement. Six months after that, I would have both of my knees replaced in one operation. Those and others made for some pretty painful ordeals, and in the aftermath of 21 different surgeries, I've done my fair share of whining and crying and feeling sorry for myself.
But never once, from the moment I started experiencing symptoms of juvenile rheumatoid arthritis at the age of eight, did I ever see Julie Cole whine or cry or feel sorry for herself for the fact that her child was disabled and in pain. It wasn't that I never saw it because she was able to hide it well. I never saw her cry or feel sorry for herself because she never did. “That's not your mother,” said my father when I asked him.
I couldn't understand the significance of this while I was still a child. It wasn't until I became an adult that I realized the tremendous effect my mother's strong disposition had on my ability to cope with such a debilitating condition.
One of the earliest ways a child learns is by observing and imitating the behaviors that are modeled for them. As a child I would pretend every weeknight at 6:30 that I was Vanna White and “turn the letters” on our family room curtains because we were (and still are) avid watchers of Wheel of Fortune. I would clomp around the house wearing my father’s shoes because I watched him lace them up every morning to go to work, and I would climb onto my parents’ bed in the evening with a copy of “The Pokey Little Puppy” because my mother reads every night before turning in.
The behaviors that Julie Cole modeled set the tone not just for how we would go about my treatment, but how I would go about living with an illness. However unfortunate it was, my condition wasn’t some life-upending tragedy. It was just part of our reality. I learned quickly to be able to face that reality and even embrace it at times. Doctors’ appointments were neat. Physical therapy was fun. Explaining my condition to all of the kids at school was rarely a problem. Disability was an important part of the conversation, but it was not the center of it.
It's been a constant fight for 29 years to live my life with a semblance of normalcy. In many ways, I will never be like my peers. I’ve never met anyone else who had both hips replaced before turning 20. But even in my abnormal condition, I grew up feeling like a normal child because I was raised in an environment where I was treated as one. I went to school. I had friends. I got set straight when I mouthed off and grounded when I messed up.
I knew the importance of living a life of normalcy because of the example my mother set. Julie Cole did not allow her life to be consumed by the stress of parenting of a disabled child, and in turn I learned to not let my life be consumed by the sadness of having a disability. There will always be a next doctors’ appointment, a next pill to take, and a next decision to make. But there also will be a next article due, a next family get-together, and for a long time yet, I hope, a next Mother’s Day to celebrate. Thanks to this awful cast on my wrist, I won’t be able to write anything clever in a card this year. I guess I’ll just write my mother a nice newspaper column instead.
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