The Truth Is I’ve Been Really, Really Sick. Let’s Talk About It
“I am not doing well at all.”
I don’t like saying this. I don’t like saying this because I have children who read things. I don’t like saying this because I have students who see and worry. I don’t like saying this because I don’t like saying this.
But it’s true. And I’ve been saying it a lot lately.
Absolutely nothing in my life changes by saying it, of course. The bills I have to pay don’t go away. The demands and calendars and schedules don’t shift. So why say it?
In my past, I have been very rarely worried, whether during the ICU stay for my heart when we thought it was just vertigo, or the pancreas-like attacks called sphincter of Oddi that turned my eyeballs yellow from liver levels. While in the beginning of all of that (of my increased sickness, that is), everything felt foreign and scary, now with treatment, a great clinic, and knowledge, it’s a lot less so.
Dealing with the long-term ramifications of my warped biology is just a means to an end, in a way. A way to get back to dancing. A way to spend time with my daughters. A way to worry less, and do more.
But then, moments like this, rare and inconspicuous, happen. They sneak up on you, until suddenly, you’re looking at your body in the mirror saying, “Wait, what? When did that happen?” I am wary of how weak I am. I am frustrated with how much mass has been lost in such a short amount of time (after a triumphant 2020 of growth, despite double back surgeries). And I am just, well, worried.
Bailey and her husband, JL. (Photo by Bailey Anne Vincent)
We know how it feels when it takes just a little too long to recover. We know the “why” behind CF clinic recommendation for higher body mass index, since the smallest wayward infection can blow us over completely. We know it because we’ve lived it. But we know it because we’ve lost from it, too. And that might be a skillful sorrow that only CF people know.
How many friends have you lost because an operation or organ misfire happened, and then an “everyday cold” took them down? How many friends have “gone in” for what felt like something small and then didn’t come back?
We’ve learned the hard way. And we’ve lost. Again and again and again. Not weight and lung function and agility alone, but friend after friend after friend. So, when we get to a point where we think, “Uh oh. I really hope no one hangs out with me while battling some innocent congestion,” it’s time to face the facts. Be open and honest and say the words no one wants to say (see: top of this column).
This is why going to work when you feel “sort of sick” is scary for those like us. This is why not wearing masks when you easily could is stressful sometimes. This is why I’m writing this down, even if I worry about the perception therein.
Struggles are better with kittens. Bailey and her kitten, Myrtha. (Courtesy of Bailey Anne Vincent)
It’s important to live a life that’s larger than our bodies. To look in the mirror less than we look outward. To write a column while leaning side-saddle on one hip because we still can’t sit up from our most recent surgery last week. (That one is oddly specific.)
I have known those with CF who have said, “I am at the end of my rope,” and then died days later, even though they didn’t seem like they were ready to go in the somatic sense. I remember thinking, “Wait, but she wasn’t that sick?” But our minds matter more than we think they do, I guess.
But mind over matter isn’t the only answer in life. Sometimes we have to mind what’s happening to our bodies and take a moment to know that it matters to someone, somewhere. Then write it down, and start again.
I am not doing well at all.
Now, I need to do better.
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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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