I Didn’t Write My Column Because I’m Sad and Scared, and Mostly, Super Sick

I didn’t write my column last week.

It’s the first time I’ve missed a column in months. If I have a surgery or a conflict, I write ahead of time, because one of the best (and most challenging) things about working for a company run by sick people is that you can’t use your sickness as a reason to be bad at your job.

This matters to me. If I let my brain be aware of how hard things can be, or the many reasons I have that “trump everyone else’s reasons” to skip something or avoid it, I start to believe the truth. Sometimes, lying to myself is better for myself than honesty alone.

And this paragraph is going to make someone mad. Guaranteed. It will sound like I’m saying, “We are our work,” or productivity as sick people is our only gauge of worth in this world. It shouldn’t be, and it isn’t. But it is honest (the paragraph, that is), and it does matter to me. Once I start believing my own reasons to not be myself, I realize how hard it is to actually be myself. And it shouldn’t be, but it is.

This month has been harder than most.

“I don’t think I let myself realize how scared I’ve actually been,” I said to my partner a few days ago. “But I need to say it out loud.”

I was scared.

Bailey during a sicker moment two years ago. (Courtesy of Bailey Anne Vincent)

Two weeks ago, I had one of the most difficult medical experiences of my life, and that’s saying a lot. (Technically, that’s only 20 words, but you get it.) It wasn’t as scary “on paper” as other moments might have been, such as those with intensive care units, defibrillators, organ removals, and so on. But even when you’re a columnist who prides herself on consistency, paper isn’t everything.

I started off thinking I had a kidney infection gone wrong. (I did have an infection.) Then, we thought it was a kidney stone in pursuit of passing. (I did have kidney stones on each side.) But by the end of the 10-day experience, I discovered it was mostly my sneaky little pancreas backfiring into “‘itis,” as it has done on and off for years.

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I’ve been hospitalized for this before. I’ve sat it out at home. I’ve done both. And at the end of the day, there is always very little that can be done, save for pain meds and starving it out. Despite this, this time was worse than ever before. I had multiple attacks per day with pain you can’t imagine (I’ve had natural childbirth, and this topped it), and vomiting to boot.

One of the worst things about chronic pancreatitis-like attacks is that you never know when they’re going to strike, and you cannot mind-over-matter or pretend your way through them. If this had happened just one week later, I would not have been able to go on stage at the Kennedy Center for the Performing Arts with my professional dance company this month, no matter how much I wanted to.

This is the sort of thing that ends jobs, cuts paychecks, and slaps you with the label of “unreliable,” because when it’s happening, nothing else can happen.

And so, here we are. I crawled through by the smallest of margins. I lost weight, got weaker, and felt broken. And perhaps most of all, I was scared, and alone, and now keenly aware, as I have been for years, that it could happen again at any time.

Bailey during a sicker moment that doesn’t look like a sicker moment last month.  (Courtesy of Bailey Anne Vincent)

The thing about decline is that you don’t realize it’s happening until it’s happened. A couple months ago, I told my best friend I was worried about how much weight I’ve lost, how stuck I feel waiting for surgeries, and how I’m unable to push too hard for fear of making my current spinal disc issues worse. I thought that by recognizing all of this, I might get better.

But I haven’t. I am not better, I am worse. And I haven’t felt worse in years.

I know this is part of this life. Ups and downs will happen. Sometimes it takes major interventions and life-saving measures to reverse something, and other times it’s as simple as a little bit of patience, luck, and healing. I am certain my trajectory is the latter, and that no one should worry or overdramatize, least of all me.

But when it comes to believing in getting better, I am worried my mind has gotten worse.

Sometimes, lying to myself is better for myself — and that’s the honest truth.

***

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.