After I spoke to Hadassah, her friend emailed me. She wanted me to fully understand that although my conversation with her friend was intense, that is not what epitomizes Hadassah. She wanted me to know about the joy that emanates from her even when she’s going through a hard time, about her lighthearted approach to life, and her balance between facing her challenges head on, and doing the internal work of accepting hardship with tremendous simchas hachayim.
And I knew exactly what she was talking about—the frequent smiles and laughter I could hear through the wire when I spoke to Hadassah, the positivity she gave off, her obvious joy in the small things of life. She’s far from a victim of circumstance: She’s a busy wife and mother with a degree in counseling and psychotherapy. It’s hard to believe she’s only 25.This is her story…
The medical student was trying to be reassuring. “Don’t worry,” he told my parents. I was five years old and after two years of a nagging cough, inability to keep my weight on, and other worrying symptoms, the doctor had diagnosed me. “People with cystic fibrosis are living well into their 30s these days. ” His voice sounded almost cheerful. I suppose he was thinking about how, 40 years ago, I wouldn’t have survived childhood. But for my parents? That was hardly reassuring.
I can only imagine their thoughts, their dashed dreams, the fear that struck them at that moment.
But they made a decision then and never wavered: I was going to have as normal a childhood as possible. The forum they joined for support described parents who put their lives on hold and gave up their jobs, turning CF into the center of their lives.
My parents did the opposite. They didn’t want it to define my life and it didn’t.
They never let illness define me, and they set me up for life with that attitude.
I never felt CF was this scary condition—it was a fact of life. As a genetic illness that impairs lung function, CF varies in severity and mine was at the lower end of the spectrum. The clinic visits, physiotherapy and daily medications were mere inconveniences to me.
If I’m totally honest, I used my CF to my advantage. My parents plied me with whatever I wanted, and I’d get “IV presents” when I was admitted to the hospital. I remember begging for a cell phone—I was 12 years old and I wanted to be the first of my friends to get one. I was wearing an oxygen mask and every so often I’d pull it down for a moment, beg for a phone and then pull it back up. I got a cute pink flip phone—and then wondered what to do with it when my parents were my only contacts!
I was a bit of a cheeky child—my parents bribed me to do my physiotherapy and bought a device to help track my physio. I figured out a way to hack the system and make it show I was putting in the work when I wasn’t, getting out of my hated exercises.
I remember when I was younger, watching the clock in the hospital during my appointments, willing it to go faster, so I’d be too late to eat school lunch and my parents would buy me something on the way home. I never minded if the doctor suggested another X-ray or blood test if it meant I’d be further delayed!