A memory: I’m ten years old. It’s CF clinic day—the day when, four times a year, I spend about three hours at the University of North Carolina pediatric cystic fibrosis center, having back-to-back appointments with the multidisciplinary CF care team. I’ve been sent to the phlebotomy lab for bloodwork, something that happens at least once a year and always fills me with dread.
I’ve had severe needle-phobia for as long as I can remember. For years when I was younger, I’d gone to sleep with the blankets pulled all the way up to my chin and over my ears, terrified that while I was sleeping somebody would come in and give me a shot—likely a paranoia triggered by unremembered trauma from my first two years of life, spent hospitalized over and over again.
Today, the thought of the blood draw is too much for me. By the time the phlebotomist sticks me the first time, I’m already crying hard, unable to stop. The adults around me are sympathetic, but increasingly frustrated as I cry harder and harder. Finally, somebody says in exasperation, “Look, Cindy Lynn! There’s a two-year-old getting blood drawn in the next booth, and they’re crying less than you are!”
I don’t remember how many sticks it took for the phlebotomist to draw blood that day. I don’t remember what the labs were for. I don’t remember anything except the feeling of overwhelming fear.
When you grow up with a serious illness, you learn early what the societal narratives are around sickness. You learn what responses to health challenges are considered valuable: courage, patience, optimism. You are surrounded by adults giving you positive feedback when you smile, and assuring you that it’s not that big a deal! when difficult circumstances make you crumble.
Illness, like most things in life, is a relative experience. For much of my childhood, I was lucky enough to have a relatively uncomplicated case of cystic fibrosis. I never needed a feeding tube; I went almost a decade without a hospital admission; my lung function was high. But still, many of the routine experiences of growing up with CF—blood draws, hours of breathing treatments every day, debilitating stomach pain, recurrent pneumonia—felt, at times, crushing. Compared to my healthy friends’ lives, so much about my life felt unusual and challenging. There were so many things to remember, so many extra tasks to complete each day, so much trauma around things like needles, such a loss of personal control over my own body.
When my friends got invited to a sleepover, they just had to pack clothes and a toothbrush. When I got invited to a sleepover, I had to bring a whole bag of medications and machines.
For my whole life, I’ve struggled with the dichotomy of processing my own difficult CF experiences while also knowing that, compared with many, my life has been simple. I have friends who have had double-lung transplants (some more than once!), friends who’ve developed CF-related diabetes, friends who’ve experienced kidney failure, friends who have lived with such low lung function they can’t get out of bed. I have friends who have died in their teens, twenties, thirties.
And yet, while knowing the diversity of CF experience makes me deeply grateful for my life, it doesn’t take away the sting of a night spent doing breathing treatments every four hours because I’m coughing too hard to sleep, or an evening when I can’t eat because I’m doubled over with abdominal pain. It doesn’t take the loneliness out of weeks in the hospital, or erase the trauma response of unpleasant medical procedures.
In writing my newest novel, No Matter the Distance—the first own-voices novel about cystic fibrosis—I found myself exploring all these ideas. Penny, the heroine of the story, is not me, but a lot like me: a kid with CF who’s been relatively lucky, and who wrestles with balancing the knowledge of her own luck with the grief, anger, and anxiety brought about by difficult medical experiences.
Writing the book felt, in many ways, like thirty years of therapy rolled into one year. I was surprised to realize how deep went my own drive to downplay my experiences. It was hard to let Penny truly struggle, truly get angry, without jumping in to explain—to my editor, to my agent, and even to myself—that the things Penny was going through were not really that big of a deal anyway.
Growing up with a serious illness means, by default, growing up with periods of anxiety and depression. Kids with serious illness face tough situations and tough emotions, and don’t always get the mental health support they need, when the need to take care of physical health looms so large.
I hope that No Matter the Distance can speak to their hearts like the friend I needed that day when I was ten years old, saying:
It’s okay to struggle.
It’s okay to be angry.
It’s okay to be afraid.
Cindy Baldwin is the author of the critically acclaimed novels Where the Watermelons Grow, Beginners Welcome, The Stars of Whistling Ridge, and No Matter the Distance (a Junior Library Guild selection). She lives just outside Portland, Oregon, with her husband and daughter.