“A childhood disease.” That’s what they called cystic fibrosis back in my day. (Man, that makes me sound old. But that’s kinda the point of this column.) A childhood disease yet we grow old so fast. Scarred souls, battered bodies. Maybe death before our elders.
The label referred not only to CF being a disease you have when you’re a kid (you’re born with that sucker), but also that CFers didn’t usually live past childhood. Many of us know the classic medieval European wive’s tale: “Woe is the child who tastes salty from a kiss on the brow, for he is cursed and soon must die.”
Mom wasn’t aware of that cheery line when she had me, though she did burst out crying in the middle of a college genetics lesson when the professor claimed CFers weren’t expected to live beyond their teen years. She mourned Baby Bradley and the future he (supposedly) couldn’t have.
I was sitting with my parents a couple of days ago, marveling at how ridiculous it is that I’m still alive. A doctor once remarked after a particularly torturous hospitalization that my body had “the remarkable ability to heal” (go ahead, call me Wolverine). Doctors said they didn’t expect me to leave the hospital alive after my septic shock two years ago. Most lung transplant centers didn’t think I’d be strong enough to survive the surgery recovery process.
In the words of Han Solo: “Never tell me the odds!”
It’s a strange thing, having a “childhood disease” and feeling like I’m getting old. I only left the pediatric clinic about two years ago. I’ve kinda been in denial that I’m well into my adult years now. Until recently, I was convinced a jinx would activate if I acknowledged I’m no longer a child with a childhood disease. But reflecting on the past few years, I realize there were myriad moments of “I ain’t a kid anymore.” Moments of tears, eye rolls, courage, and laughter.
Like when I first began really fearing early death, during a 10th-grade biology lesson, much like my mom’s aforementioned college lesson. Teachers commonly use CF as an example of genetic mutation. I looked down at my textbook and saw a lovely line about my life expectancy. Me, squished into printed text. A mere statistic. I was finally old enough to understand reality.
Or when I didn’t fit in my hospital bed, post-growth spurt, and nurses had to search all over the hospital for a new bed that I could lay in without my feet poking off the edge (finally got one, days later).
Or when I strode across a stage to receive my high school diploma despite my doctor saying I should stay in the hospital during the ceremony, or use a wheelchair at the least.
Or when I lived in Seattle by myself and took full control of my healthcare.
Or when I was hospitalized and my Seattle pediatrics care team said I, at 19 years old, wasn’t allowed to leave my room without a parent or guardian. (I went two weeks without leaving that tiny room because my parents lived in Hawaii.)
Or when I finally stood my ground against a doctor without my parents’ help, raising eyebrows: “You know what … that’s actually a good point.”
Or when my young nurse collected stool samples while telling me she was good friends with my college buddy.
Or when I got my college diploma — two degrees — after being told by doctors I shouldn’t even try college.
Or when a doctor said we were running out of treatment options, then sought my advice — an equal.
Or when I realized my surgeon’s hands were just a few years older than mine, and going to cut into my skull to place cochlear implants.
Or when a student doctor about to stick a bronchoscopy down my lungs piped, “Wow! I’m only 2 years older than you!” (I was 23 and could barely open a pill bottle without spilling capsules everywhere.)
Or when my doctor said I’d reached “the end of the rope” and transplant was the only option. She began to comfort me but I interrupted with, “I’m ready.”
Or when I realized the entire community outgrew this childhood disease. That there are now more adults with CF than children. That today’s children with CF have the potential to live far longer than I will. And that’s beautiful.
You can follow my journey on my Facebook Page.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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