It happens several times a week—sometimes several times a day. I reach down for my phone, the words already running through my head, and then I stop. Let the memories wash over me again. Put the phone back down.
. . . . .
I "met" Kristi three years ago, when our babies were new and our stories—two of the three or four women in the world to stay on Kalydeco while pregnant immediately after its FDA approval—were similar. We bonded over the commonality of our health experiences, the way that even as newborns our daughters were proving to be more than the ordinary blend of stubborn and sleepless. We texted about baby woes and gossiped about people we knew. (As our daughters got older, there was a lot of "OMG, did you see what so-and-so posted about how "hard" her newborn who sleeps 8 hours at night is? haha she's in for as surprise!") When they were three or four months old, we even discovered that our daughters owned matching dresses, and from then on we called them the "Kalydeco twins."
Kristi and I came from entirely different worlds: Different parts of the country, different family situations, different lifestyle choices. And yet somehow, that handful of things—our similar children, our similar experiences charting a new course for the world of medicine, our similar dry but practical sense of humor—brought us together. As the years passed, she became one of my dearest "cysters", one of a small number of people I went to with whatever happened to be on my mind.
. . . . .
Maybe fifteen years ago, cystic fibrosis researchers discovered that when CF patients are together in close proximity, they end up sharing their particular bacterial lung infections with one another—infections that 99% of the regular population aren't susceptible, but that can spell death for a CFer. This principle, known as "cross-contamination," has come more and more over the last two decades to guide rules surrounding CF patients meeting face-to-face have become increasingly stringent. In the last two years, the Cystic Fibrosis Foundation has gone to recommending that CF patients who are together stay six feet away while wearing masks, and they've mandated that only one patient with CF is allowed to attend a CFF indoor fundraiser or other activity.
And so because of this, the lifeblood of the CF community exists online, because behind our computer screens, we are no danger.
It leads to a strange sort of intimacy, intense and long-lasting friendships that can exist even if you go your whole lifetime never hugging, never seeing her face except through a photo.
. . . . .
I was on my way out the door to book club, almost exactly two weeks ago, when my phone buzzed. I looked down to see a text from another CF friend, a text punctuated with half a dozen exclamation points, a text I couldn't possibly process. "Kristi died!!!!!" it said, comical in its insistence on such an impossible thing.
Every CF death is shocking, every CF death is a cause for mourning. It's never normal to watch somebody take their last breath at 23 or 32 or 45. It's never normal to realize with the wind knocked out of you that you'll never again see that person smiling through her pictures, pursuing her dreams, writing snarky comments about the intensity of a hospital stay or CF therapy regimen.
But it's even more shocking when it's utterly unlooked-for, coming suddenly for an otherwise healthy person. There are levels of cystic fibrosis decline. And while those of us on the milder end of the spectrum may chafe against the insinuation that our disease is insignificant, and while it's entirely possible for a person to lose vast swaths of lung capacity in days after contracting the wrong virus and equally possible for a person to hang on for years and even decades with a third of a normal person's lung function—these stages of decline still provide a rubric, a way to gauge how likely it is that a patient's situation might become dire at the drop of a hat.
Kristi was not end-stage. She'd had a rough few years, in and out of the hospital, but her lung function was nearly as high as mine much of the time; she was sick, and miserable, and intensely frustrated with the way CF was blocking her into a lightless tunnel, but she wasn't likely to die unexpectedly, without warning, without a steep decline predicting her fall.
And yet, she did.
It was a freak thing, the kind of CF-related death that is so incredibly rare I don't think I've ever actually heard of it happening to another person that I know. It came quickly, horrifyingly, in a way that still makes me feel nauseated to think of. And all of a sudden, without any kind of warning at all, she was gone, and her daughter was motherless, and instead of going to book club that night I stayed home and cried and cried some more.
More than anything else, that first night, I had to stop myself from reaching for my phone to text Kristi. The strangest thing just happened, I'd have said. Somebody told me that you were dead....
. . . . .
In the days since Kristi's death, those unwritten texts have piled up inside my heart. One day, I wanted to text her about how I'd lost weight but still had a postpartum-shaped body and so none of the six pairs of jeans in two sizes I owned fit me—oddly-shaped bodies with wildly fluctuating weight are a hallmark of adulthood for CF women, and something Kristi and I talked about often. Another day, I wanted to hear her thoughts after reading a post in our Facebook group for CF mothers that had me rolling my eyes. Another day, I wanted to tell her how Kate had spent the morning jumping on a trampoline and still had energy to burn—our daughters' wild intensity was something we spoke of often.
Sometimes, I still want to text her the way I did that first night. Can you believe that we all fell for that? I'd say, and we'd laugh, and then we'd send each other pictures of our girls with nebulizers in their mouths, and marvel once again at how incredible it was to be here, entering middle age together, achieving dreams nobody would ever have guessed this pair of 1980s CF babies would live to see.