Colie in the Bathroom
I assume the bathroom is a sterile, uncomfortable place for most people. It’s a room where you touch up your makeup, relieve yourself, or take a shower at the end of a long day. But for me, a chronically ill person, the bathroom is so much more than that.
A place to hide
As I explained in one of my previous columns — “The Sun’ll Come Out — In Two Weeks?” — a tuneup is a two-week hospital stay meant for antibiotics. It’s rare to get a moment of peace during a tuneup, so the bathroom became a fun place to hide.
I’d play music in my head and dance around in silence. I’d attempt to perform a makeup tutorial on my irritated skin. I’d scrub the sink — anything for a few more minutes of alone time.
To this day, I escape to the bathroom, mostly when bad news washes over me in unmanageable doses. Excusing myself and making a hat out of toilet paper is an invaluable part of my adult life. I highly recommend it.
A place to relax
When my mother, grandparents, and I vacationed at Long Beach Island, New Jersey, in my youth, I’d enjoy a lengthy bath in the afternoons. I’d wear a visor because I hated getting water in my eyes.
My mother would cater to my strange needs, including a bathside entree of cheese and apple slices. Sometimes she’d sit in the bathroom and read me stories until my fingers pruned. It was a nice way to spend time between treatments.
As an adult, I’ve learned that Chinese food containers float in the bathtub. As you can imagine, this has kept my calorie intake high and my nutritionist very happy.
Nicole enjoys a bath at Long Beach Island, New Jersey, in 2003. (Courtesy of Nicole Kohr)
A place to experiment
Doing a nebulizer treatment in my bedroom was boring as a child. It was predictable, routine. Moreover, I felt left out. I imagined a party broke out in the living room the moment I switched my nebulizer on. Doing a nebulizer in the bathroom, on the other hand, was exhilarating.
I could perform science experiments and make my nebulizer bubble. The location felt naughty, like playing with slime on Grandma’s white quilt. Plus, the mirror allowed me to focus on my chest going up and down as I breathed.
Bathroom experiments are few and far between as an adult, but a good ol’ nasal rinse followed by a Clorox wipe is equally rewarding.
A place to rest
I’ve always had problems with my blood sugar. It would plummet during bowel movements, a condition later diagnosed as dumping. Fainting on the toilet was not uncommon for me, so the door remained cracked until I was well into my teens. At one point, my mother put a pillow in the bathroom, so fainting would be more comfortable. It wasn’t a glamorous life, but I made the best of it.
A place to accept
The bathroom is where I kept tabs on my hair loss. It’s where I watched my skin color fade from tan, to yellow, to gray. It’s where I filmed funny videos for my Twitter fan base, and it’s where my shower stool sat for years on end.
Mom and I had long discussions in secret, hoping the echoes wouldn’t make their way through the walls. Plumbers made frequent appearances thanks to my high-calorie, high-fat diet. I changed the needle in my port-a-cath, a device under the skin meant for long-term IV use, thankful the home nurse wasn’t stopping in that day. Needless to say, most of my memories took place in the bathroom.
“Michael in the Bathroom” is a popular song from the Broadway show “Be More Chill,” and depicts a teen lamenting in the privacy of a restroom during a party. I immediately related to this song. Who hasn’t escaped to a bathroom during a party to sing about their feelings?
I’m happy to announce that the bathroom in our new house hasn’t experienced faints or tears, just a healthy dose of lo mein and toilet paper hats.
Check back every Thursday to read more of my story.
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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, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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