Learning to Live ‘Off-book’

I feel the freest when being told what to do.

Take 1 tablet by mouth three times daily for 14 days.

Flush each lumen of intravenous catheter with 5 mL as directed.

Do not exhale into the mouthpiece or tip downward when in use.

Store at 68℉-77℉ (20℃-25℃) in a dry place.

You see, having been born with an incurable, life-shortening disease, I am prone to experiencing bouts of helplessness. Terrifying helplessness. There are so many things that I cannot choose …

My shoulders curl forward like a scallop shell, collapsing together; my cough has contorted my body in this way. I wished to be a slender, long-necked ballerina when I was young, but instead of growing up, I grew in.

My bones are not, and have never been, my own.

I watched Independence Day fireworks from a hospital rooftop when I was just 5 years old. Many years later, on New Year’s Eve, a love of mine snuck cheap champagne into our styrofoam cups. We sipped on spicy bubbles and watched the ball drop, the world turn — without us. He kissed my cheek, his top lip grazing my oxygen cannula. We don’t speak anymore.

Cystic fibrosis makes me miss things. Lose things. It makes me feel things, physical and emotional, that at times don’t seem survivable. Despite what I may do to combat its effects on my life, CF will always have the final say. And that kind of power struggle — the kind between one and oneself — can yield an unhealthy addiction to control. Such has happened, I suspect, within myself.

Take 1 tablet by mouth three times daily for 14 days.

Flush each lumen of intravenous catheter with 5 mL as directed.

Do not exhale into the mouthpiece or tip downward when in use.

Store at 68℉-77℉ (20℃-25℃) in a dry place.

To me, prescriptions equal power. Prescriptions equal autonomy. Prescriptions equal something I can do. And still, this feeling extends past the realm of pharmaceuticals.

I daylight as my own doctor. I give myself orders. I tell myself what exactly I need to do and when it must be done by, or else. The “or else” part is where things get messy.

• Do all the dishes right after dinner, or else.
• Get an A on this paper, or else.
• Land that internship, or else.
• Find the one, settle down, start a family, or else.

Or else, what, Hannah?

For the past 22 years, my life has been (I’m now realizing) a wide-eyed scramble to cross some sort of finish line before prematurely kicking the bucket. A race to check things off the “Normal Life” list, if you will. And while I’ve been scrambling, racing, wearing blinders like a trained, starving horse, I’ve simultaneously been depriving myself of the opportunity to know anything except tomorrows. For the future, one that could quite possibly never arrive, I have traded an infinity of my presents.

Indefinitely, it will now be a goal of mine to practice no-pressure, non-scripted living.

Because this isn’t a movie, this isn’t a book, and there’s no “right way” to breathe and die.

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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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.