Life with CF, Revisited

Notes from the long middle

I’ve been sitting with this piece for a while , and it felt like the right moment to share it.

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It’s CF clinic day, a quarterly stress inducer that I’ve both gotten used to and am surprised by every time. Today’s appointment seems especially significant. Exactly 24 years ago, after three years of tests, doctors appointments, and constant sickness, I was diagnosed with cystic fibrosis.

It came as quite a blow to my family, this disease that none of us knew anything about. I was a junior in high school, mostly worried about boys and having enough friends, looking forward to prom and applying to college. Much of that time is a blur now, except for the feelings of devastation and fear. In an instant my future became unknown, and everything I was looking forward to seemed out of reach.

One of the few clear memories I have from that time is seeing an Ensure commercial – with an elderly couple holding hands – and bursting into tears because I would never get the gray hairs and wrinkles. I didn’t know it yet, but I was beginning to grieve the life I thought I’d have: the one where I’d grow old.

Now, two-plus decades later, there are so many things I wish I could tell that 16-year-old girl about what life looks like all this time later. I find myself thinking about her most on days like this – clinic days – when the distance between then and now feels both enormous and strangely small.

So I thought I’d try writing to her, that terrified girl whose world was just turned upside down.

Katharine, I’m so sorry this is the hand you’ve been dealt. It’s not fair, it’s scary, and no one should have to go through this at your age. I can’t tell you everything will be okay, but I can tell you that your life will keep unfolding in ways you can’t see yet.

Not only do you go to prom, in just 18 months you’ll head to Ohio for college where you’ll make friends that are still part of your life to this day. The transition is challenging, and you don’t take the best care of yourself. There are consequences – a hospital stay, weeks of IV meds the summer before your senior year – but you begin to find your way through this new identity.

You start a CF awareness group on campus, made possible by the incredible friends who show up for you. And this is only the very beginning.

You graduate and get a job, one that deepens your love of the English language and helps you hone your communications skills. You date (and break up, and date again, and break up… again) and then marry that cute boy you met at the mall when you were 15. (Yes, really. Your instincts about him were right. More than 13 years of marriage later and he’s still your best friend.)

You find your voice, sharing your story of life with cystic fibrosis as often as you’re able. You make friends, change jobs, and buy a house. You get a dog, despite being terrified of them for most of your life, a miniature schnauzer who’s sleeping on the couch as I write this. You travel, go to concerts, and watch your friends get married and have babies.

Your life looks much like others your age, but with CF always there, often taking up more space than you’d like. I won’t lie; it’s really hard. You often feel lonely and resentful of all the many ways having CF changes you. There are mornings you cough until you’re sick and nights you barely sleep. You miss out on get togethers and vacations and friends’ weddings. You lose friends with CF, one of the cruelest parts of the disease. You spend a lot of time scared for the future or trying not to think about it at all.

And that brings me to today, and to the future you were so scared of.

I’ve aged: gray hairs, wrinkles, creaky bones. The very things that once felt impossible. I think about that Ensure commercial sometimes, about how wrong I was.

I’m 40 now (yes, forty!), and this past year has brought news I never thought I’d hear. My doctor told me that, thanks to a new drug, I could live a normal lifespan. That I could stop doing my daily treatments.

I remember nodding and listening, Mike and I looking at each other in shock, and then going home and sitting with it, unsure what to do with a future I had never really let myself imagine. I opened a retirement account. I began to imagine a future I once believed was out of reach, only to realize it’s no longer a distant idea. It’s already here.

This new present is strange and tender and unfinished. It carries relief and grief side by side, and I’m still learning how to hold both.

Writing has always helped me feel less alone inside it all. If nothing else, it reminds me that naming where I am is sometimes enough to keep moving. That feels like a place worth returning to.