I am an artist, I paint, I draw, I make books, and small objects. Overall a craftsperson. One would think that I would get a part-time job working in an art studio, or a gallery. Nope, not me. I found myself taking the first place that answered back. Mal-Wart. Being like many twenty-somethings my age, locked between a rock and a hard place working at a place that can literally fit the definition of a dead-end job. I find myself as a fish out of water, out of shape in a security guard position.

“I like your headband,” my daughter says out of the blue, bike helmet in hand. “And your purple pants. You look like Superwoman!”

“I feel like Superwoman today,” I smile. “I’m strong, and I can do hard things.”

My daughter nods and zooms down the driveway. A year ago, she would have walked her bike down the small slope with caution. Now she’s learning to ride with no hands.

“Roses are red. Violets are blue. Things may seem tough but you’ll get through.” This poem was written in crayon and framed above the computer in room where I did my pulmonary function tests (PFTs) growing up. I visited this room every 3 months from ages 5 to 19. I remember thinking those words over and over in my head as a kid, in hopes they’d calm me down and better my results. Looking back I think it’s pretty clear that I had PFT anxiety.

Growing up, I remember how structured and regimented our treatments and medications were kept in striving to keep me as healthy as possible as much as possible with the hopes of medical advancements that would help that goal be more and more achievable with the hope of a cure being on the horizon of my lifetime.  These were the days when mucomyst and manual chest physiotherapy (postural drainage with clapping on my chest, sides and back) along with digestive enzymes were the only tools of daily disease management.