If You Need a Miracle Today, Read This
“What should I write my column about?”
This is what I asked my Tiny Dancer the other day, while mass-prepping as many columns as possible before having surgery on my cervical spine. This is my third spine surgery in less than a year. You’ll likely be reading this two weeks after it’s finished, with newly concerning lumbar scans already in the works.
Because looking down at a laptop (or crunching my neck in any form or fashion) is half the problem, I know that doing so shortly after having an entire disc replaced with a fake one wouldn’t be wise. It’s just another fake thing for my body to accept as its own in a long line of fake things — another lie I tell myself.
You might remember Tiny Dancer from a column I wrote recently. At that time, I wasn’t sure how her story would end. As it turns out, it’s only just beginning.
But even if I lie to myself about my body, I’m not lying when I say that Tiny Dancer surviving was nothing short of a miracle. At the same time I was asking for prayers, chants, and mantras, she was on extracorporeal membrane oxygenation (ECMO) and life support. And yet, here she is. And her name is Gemma. And now I can tell you about her.
“The last time that someone I loved was on ECMO, he never came back,” I told my dance company once we knew she was officially “through the woods.”
As many of us in the CF community know, words like “ventilator” and “ECMO” carry a chilling commonality. They instantly trigger a wave of grief, fear, and memory. We know them all too well, and they often hit far too close to home. But now, Gemma is home, and it’s surreal.
Her story is like something from a movie. She was perfectly healthy her whole life — tiny, mighty, fierce — and then, out of nowhere, she went to the emergency room with what she thought were scary allergies or maybe an asthma attack, and was taken down by a tumor crushing her heart and lungs. Then, as rapidly as the onset, she returned to us with scary blasts of chemotherapy, steroids, and prayers, chants, and mantras. Still, she had to process what happened while she was “out.” She was discharged from the ICU after a little over two weeks: from healthy, to nearly dying, to home.
So, when I texted her the other day to ask what sort of column topic she felt more people should talk about, she said, “The overwhelmingness of it all.”
You see, even though Gemma’s prognosis is incredibly optimistic now, and even though she “always wanted to shave her head and now has an excuse,” and even though almost every time I send my daily text to see how she’s doing, she replies with “great,” the hardest thing about chronic illness is how our brains know less than our bodies at almost any given time.
“Your body is telling you, ‘Fight or flight,'” I said as she grappled with the notion of being stuck at home now — a new person almost overnight. Every smell of antiseptic. Every tightness in her chest. Every taste of bland, hospital-esque food. It’s all a process of processing what we are rarely given time to process.
Even without the echoes of ECMO, I find that I have a “depression week” every time I am released from the hospital myself. And it’s confusing, because shouldn’t I be happy to be out? I am. But my brain needs to catch up with my body. And my body needs to catch up with my life. And I need to accept the fake things as my own, as part of me. And the timeline for all of the above is never long enough.
I don’t even know how I feel because I’m too busy trying to feel as little as possible so I can shuffle back to the most convenient version of “me” and pretend it didn’t happen. Then, the smells. And the tightness. And the taste. And all the little echoes I failed to forge my way through before. They all come back. But I feel guilty for not simply being grateful. We all need Tiny Dancer levels of perspective. We all need to be more like Gemma.
But we also need to remember that inside every Gemma, and behind every smile, is “the overwhelmingness of it all.”
And that’s something we all should take time to process.
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.