Evil Knievel, my mother, and me
This was saved into my drafts on August 25, 2012. I'm publishing it on November 30, 2025. For context, my mother received a double lung transplant the following February.
If I close my eyes, I can smell the salt of the bay as it's carried on the breeze.
I can see the sunlight glint off the water and scatter at the hands of a hundred thousand waves, dashed and reflecting from peaking whitecap hints.
I can hear my mother at the tiller, delighted that the sail of our two-person fiberglass Sunfish is bulging with wind and we're slicing down the bay, our journey made in a single tack. "Whoosh!"
And then I open my eyes, and blink, and I'm sitting at my kitchen table in my apartment, alone, wondering if tonight will be the night.
I'm on the phone tree. We all are. At any moment, the hospital across the bay can call us in; we'll meet in the waiting room, I assume, although we've never really talked about it, and go up to be together while the doctors perform the procedure that will save my mother's life. We will be there when she goes to sleep - and we will be there when she wakes up with a brand new set of lungs.
Idiopathic pulmonary fibrosis is an incurable condition that essentially creates progressive scarring in the lungs. Over time, it gets harder to breathe. What might start as an annoying cough (as your body occasionally struggles to obtain the levels of oxygen it's accustomed to) progresses into a need for supplementary oxygen during high levels of physical activity, and eventually a need for additional oxygen during every moment of the day. It doesn't stop, and there's no known cure. That's what idiopathic means, by definition: they just don't know yet.
Ultimately, there comes a point where the body can't absorb enough oxygen, period. Idiopathic pulmonary fibrosis claims as many people as breast cancer each and every year. After all the daredevil jumps and showmanship, it was the thing that brought Evel Knievel to an end in 2007. Other patients who have ultimately died from it include Peter Benchley (who wrote Jaws) and the legendary folksinger and civil rights activist Odetta Holmes.
My parents are the best role models I think I could possibly have hoped for. Of course, there's the career stuff: the first time I ever used the Internet was because my mother got use of a connection for review in her position as an analyst. She got me into MILIA, the European multimedia show in Cannes, for a couple of years running when I was 15 or 16. Both parents' entrepreneurial drive and business experience rubbed off on me. Those are the things I might usually write about here, in a blog that's mostly been about technology and business. But that's not the real stuff you get from your parents; the fundamental moral essence, the never-spoken lessons that just happen because you are part of them and they are part of you. My family, I have often said, is my religion and my nationality all in one. It's a cliché to say I wouldn't be who I am without them; both literally and figuratively, that's obvious. I don't have the words or the skill to truly define that link and do it justice by any measure. It must suffice to say that I consider myself lucky, and if my life has sometimes been like I'm whooshing on a single tack, it's because they've been the wind, and the water, and the sunlight bouncing off the waves.
This is a scary time.
A lung transplant is no small deal, but my mother is tough as hell - and she's comparatively young and healthy for an IPF patient. Superficially she's got that New England glint about her that says, yes, I am going to do this, and damned the consequences, but it's not a superficial toughness. At her core, she knows what the right thing to do is; her kindness runs right through her. (After a career as a financial analyst, she switched tracks and became an elementary school science teacher in one of California's least affluent districts.) And she's not alone: as well as my sister and I, she has my dad, who is smart, endlessly resourceful, and supportively speaking, a rock. As worried as I am about her, I'm pretty sure she's going to kick this thing in the ass.
Yet IPF looms large. My grandmother died of it, and my aunt just completed a set of lung transplants. More research is certainly needed; the Coalition for Pulmonary Fibrosis is bringing this petition (which you should sign) to Washington DC in September to argue for more research funding. That's a great statement, but even more needs to be done. Open research would be enormously helpful, because the goal here should not be to patent a drug or commercialize a procedure: it should be to improve the lives of the people living with this condition. A lack of knowledge, lack of resources and lack of awareness is letting us all down. We, as a society, should be doing better.
As for me, specifically? When I close my eyes, I see a reality where my family is happy, and healthy. Forget great wealth, or reputation, or possessions. When it gets down to brass tacks, that reality is all I need out of life.
