Original post on Cystic Fibrosis News Today
I’m always nervous about diving back into work after being out of commission. In this case, I’m referring to the monthlong hiatus I took from writing this column. I was hesitant to pause my writing for Cystic Fibrosis News Today. What if I disappoint my editors or my audience? Even worse, what if I ignore my declining health? The latter is an ongoing battle.
Fortunately, I was productive during my month off. In addition to several trips to the emergency room related to my sinuses, I watched video of the London stage production “Heathers the Musical,” a dark comedy that follows Veronica Sawyer through a dangerous high school romance. I’ve written about the show before in a column titled “’Big Fun’: My Make-A-Wish,” but this production featured a new cast. Further, I was surprised to learn that this version featured several new songs, including “I Say No.”
In the song, Veronica vocalizes how unhealthy her relationship has become. From acceptance to validation, the lyrics were a great addition to the story — and my audition book.
Accept
“This is it/ Hit the brake/ I am finally awake”
Veronica took a moment to address and accept the things that were out of her control. In my case, I must accept that breaks are necessary.
As a cystic fibrosis (CF) patient, I found that pitting my health against my happiness was an ongoing Sophie’s choice, so I tended to work my body into the ground before coming to a full stop. As a post-transplant patient, however, my lungs force me to rest, and I decided I must follow their lead. I don’t want to put my new lungs in jeopardy, nor do I want the quality of my work to suffer.
Either way, saying no is a necessary tool during periods of infection, but pushing myself is a tough habit to break.
Validate
“Call it all my mistake/ long as you let me go”
As hard as it is to rest, though, it’s twice as hard to dive back in, for three primary reasons.
One, my mind and body grow accustomed to the “out of commission” lifestyle. The longer I rest, the harder it is to bounce back. I’m encouraged and required to rest more than usual. My emotions and immunity become even more vulnerable. I become overwhelmed by appointments and medications, and my family must step in. Being cared for is addictive, and that addiction skews my ability to identify my bounce-back period.
Two, the fear of my full-speed life paralyzes me. The little voice inside of my head, the one that grows louder with every nap or additional antibiotic, tells me that I’m powerless. My symptoms, the mindset, and the situation trick me into thinking I’m incapable of diving back in. Or worse, I’m convinced the act of diving in is irresponsible or unrealistic.
Three, my family asks if I’ll join them for dinner or at a local festival that I enjoy … and I say no. I become intimidated by my previous self, even if that self existed a short time ago. What if I can’t bounce back quickly enough or can’t endure? Are these thoughts pessimistic or responsible? I can’t write, or walk, or be.
Dive back in
“I’ve got to kick this habit now/ or else I never will … I won’t cry/ starting now, I will try”
In lieu of stopping my column completely, I decided to decrease the frequency of it from four times a month to just twice. I’m not sure if this change is temporary or permanent, but it’s what’s best for this stage of my life.
Veronica reflected on each step of her emotional journey, and the lyrics encouraged me to explore my own issues with stepping away versus diving back in.
I’m still nervous that I have nothing good to say, that my endurance won’t last. Will I be expected to keep up with the previous standards that I’ve set for myself and my writing? If so, should I warn my audience that I might not be able to do so? Should I have faith that I can, or simply dive in and see what happens?
If you’re also scared to dive back in, worrying you’re not good enough, concerned you can’t compete with your previous self, or anxious that you’ll run out of things to say — just take that first step. Write something. Walk somewhere. It’s enough.
To the situation that tells me I’m a failure for slowing down; to my CF, whose statistics and symptoms twist the truth and force me to question my identity; to the feeling that I must permanently sit on the couch: I say no.
Nicole in the CarolinaEast Medical Center emergency room on Sept. 25. (Courtesy of Nicole Kohr)