in General


Maybe it’s the pandemic.

Maybe it’s Willie Nelson singing “Just Breathe” in my headphones (and hearing Eddie Vedder’s voice in my mind at the same time).

But I am feeling melancholic. “A feeling of pensive sadness,” says Google when I type the word into the computer I sit at for hours and hours every day this past year, 30 inches from fresh air. When I copy and paste “pensive” back in for further clarity, I’m shown “involving or reflecting in deep serious thought.”

To add to the mood, Spotify queues up “The Weight” by The Band… and now I’m just listing songs in a blog post.

I’ve got cabin fever, but I haven’t been as cooped up as others have been the past year. Florida is good-naturedly mocked (sometimes with aggression, or maybe just a dumbfounded rolling of the eyes) for the level of societal and economic openness we’ve had since March of 2020.

So we go to restaurants, we go to parks, we go to the grocery store and Target. We finally opened the coffee shop Robyn has (well, both of us have) been dreaming of for years, and it’s brilliant and exciting and the people are the kind who you feel proud to know.

I’ve been able to travel some for work, which I find energizing. A few weeks over multiple trips trekking the mountains and deserts and coasts of America following a man named Peter Halper who ran across the country as a fundraiser to benefit Beat Childhood Cancer. Visits to Charlotte to see the new lab where the clinical trials and research we fund around beating cancer for kids is happening. Incredible work which, if I stand back and think about, is lifetime-achievement level, and I am proud to be involved in. This year I’ve met wonderful people, who’ve done nifty things, and had conversations over dinners and meetings which were both mentally engaging and effective.

The world just feels smaller lately.

For a decade most of what I do has boiled down to meeting and being with people. Designing projects, listening to and learning how people are, sharing depth of emotion and questioning how we all handle friendship and grief and purpose and figuring out what to do with, I guess as The Band titled their song – The Weight.

Maybe what I do is just fundraising, but it feels like storytelling with a mission, and building real friendships.

Society hasn’t done that much this past year. We don’t get together, meet each other, dream and chat and whine and maybe even change a few things that are bad into things that are better. Or I guess, when we do, it’s more nervously, smaller… or with defiance. Whatever it’s been, there’s a thread of anxiety and anger and helplessness through it all, and it’s taxing. I know this feeling from when Ezra went through treatment for cancer, and for 13 months there was this giant unresolved question… will my son be ok.

The uncertainty we face now is smaller, at least for me. It is not my son’s life on the line. But our mental well-being, the way we structure society… that’s all been upended. It’s weird to be nervous around people. It’s weird for people who aren’t to have an inherent rebellious middle finger suggested in the action (the lady with no mask in the grocery store starting a conversation with the person next to her. Or I mean, geez, the lady with no mask in the grocery store).

I’m not advocating a stance – we wear masks and take precautions and for the most part do what we can to stymie COVID-19 (my career is in funding scientific research to make things better for kids right now). I’m saying every interaction feels tense; a low level of stress is in so much of human contact lately. I wonder if this is what McCarthyism felt like, always wondering if the person in front of you is somehow dangerous or “other.” I wonder at the damage that does. Maybe this is how every marginalized group feels, always.

I don’t think it’s really COVID that’s on my mind, but it’s a nice common place that maybe connects my rambling to what’s on your mind, and so maybe it’s a good way to express it. The close people to me are in hard spots of late, and my work by its nature has me surrounded by people for whom tragedy is the common place we share.

We had a donation the other day, and like I always do, I emailed back the person and asked if I could be so bold as to ask how they found Beat Childhood Cancer… why they care. The woman emailed me back two weeks later and said her 2 year old son had died from cancer, just last month. And like I always do, I stared at the screen for minutes, making sure I felt her loss. The quiet sadness, the ferocious, screaming sadness, the anger, the numbness, none of which will ever bring her son back to her here, today. Feeling the loss of our sons. Missing Ezra, missing people. Feeling the weight.

And Willie Nelson started singing “Just Breathe” in my headphones.

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  1. I have no words of any real value. I have nothing to offer that fixes any of this for you and our God knows I have nothing to remedy the pain that will always exist in losing your son. Yeah some days you might find a way to foolishly think you can numb it, some days you hold on to a win, a victory punch to the grotesque and defiant cancer that has stolen life from you and too many others. Today maybe you vacillate somewhere between them trying to find a place to stand (or just lean into) to get some sense of purpose and strength. Oh how my hearts breaks for you, your wife, your family and all the families who have been robbed by this ugly, cruel and hateful disease. This reality breaks my heart and nowhere near to the extent of you and so many. My encouragement to lean into God in times like this are sincere and yet from my own experience sometimes seems trite to even utter those words. I thank you for sharing like you do. It is often raw but yet very real. It is moving and yet frustrating that I (we) seemingly can’t do much to “fix it” but maybe you understand. That desire to do something for others that is so far above your pay grade that it seems foolish…So in my foolishness let me say as far as I can understand, sympathize (I don’t think as a man who has not lost a child can empathize even though I want to) and as deep as I can I say, “I’d be honored to sit in the quiet with you. Listen. Laugh. Cry.” May you and every parent continue to find the strength to walk this journey, one step at a time and may those of us who cannot understand at all what you have been through not be afraid to admit it and care enough to be willing to be a part of the conversation and help you fight this raging war against childhood cancer. humbly and with shared melancholy…