Isaac and I finished tacking the flimsy back of the shoe rack in place.

Proudly, we glanced at each other. Keep in mind that Isaac is a lot things, some of which include:

  • A sixth grader, yes, in middle school

  • A boy that takes after his mother’s quick wit, sarcasm, and cutting criticism. It really is a talent … a brutal, brutal talent

  • Pubescent, which he describes as “getting puberty,” yes, like a communicable disease. For example, “I hope I don’t get puberty.” Oh, you’re gonna get it

  • Subconsciously creating distance from his dad, which we suppose has a lot to do with my cancer. Anxiety about the premature completion of my life? Anger that my disease has disrupted our family so profoundly? Experiencing anticipatory grief?

By comparison, I am 41, pretty slow on my feet; I need time to process and formulate thoughts, graying hair rather than growing it, and also, experiencing anticipatory grief.

We carefully tip the shoe rack 90 degrees from its resting state on its front, required to tack the back in place, to its upright position, standing it for any finishing touches. We pull the backs from the adhesive strips and firmly press the thin cushion across the top, making a bench, with the shoe cubbies beneath. It feels sturdy! “Is that it?” Isaac asks. “Yeah, I think so! We just need to put in the pegs to slide in the shelves.”

It is at this time that I realize we’ve constructed the shoe rack in such a way that the upright walls with the pre-drilled holes for the pegs to hold the shelves are flipped the wrong way. The holes are facing away from each other in each column where the shelves are intended to slide in, resting on the pegs in either side. Our twelve shoe capacity has been roughy cut in half. Five people in the house, six shoe cubbies. In effect we’ve done no better than the floor where everyone’s been kicking their sneakers, cleats, crocks, rain boots, and the neighbor kids’ shoes when they’re over, which is often.

It is also at this time that Whitney walks through the door to see us sitting on the floor of the kitchen near our completed father-son project; “completed.”

“Whatcha guys doing? Building the shoe rack?! Together? That’s great, guys!” She knows how frustrated I’ve been with Isaac and how hard he’s been on me. She loves to see us working together.

“Mhmm, ” I murmur, having only just now discovered our mistake, knowing that if Whitney figures this out, I won’t hear the end of it.

“Yeah, we’ve been a great team! We just need to put in the pegs … How was your day??” I am stalling and attempting to distract her, knowing that I need 15 or 20 minutes to disassemble the thing, flip my boards, and screw it back together. “Why don’t you go draw a bath, babe!”

Too late.

“Something doesn’t seem right here…” Whitney’s on to it. This is not a surprise. She measured the sconces that I hung on either side of the fireplace. Yes, they’re not level. Off by 3/4 of an inch.

I interject with the verbal equivalent of a defensive back holding his hands up after a late hit, “We followed the directions exactly!”

“Ya did, huh?”

Oh boy, here it comes.

adam hayden brain cancer glioblastology

Courtesy of Adam Hayden/

Five years ago my dear friend Lisa and I stood up a virtual brain tumor support group, with incredible support from our kind organizational host, Rachael. It may have been six years ago. We shifted platforms in the early days, but at last five years in its current form. Five years of meeting every third Sunday. That’s at least 60 meetings we’ve shared together. In those five (or six) years we’ve grown the group from seven or eight attendees in the first several months to 50-60 attendees per meeting now. In fact, we are in the process of welcoming a new facilitator to our team so that we can leverage breakout rooms to better manage the group size and ensure a supportive experience for all our participants–friends, really.

I have not co-facilitated a single meeting yet where there was not at least one honest sharing from one of our friends that hasn’t left me without the privilege of witnessing jaw dropping feelings of vulnerability, emotion, courage, loss, impossible decision points, or the rare infuriating encounter with a clinician or health system that isn’t prioritizing patient care. We’ve heard of friends starting clinical trials, friends leaving trials, friends being told there are no more options, friends celebrating years of survivorship, friends celebrating a birthday that they didn’t think they’d reach, or mourning the loss of a loved one before they reached one that they thought they would.

The January meeting was no different, and the group experienced a collective reaction that we had never experienced before. And keep in mind this is virtual. 50-some people displayed in two pages of 2×2 boxes all breathing together in a single moment of movement with the sacred space of illness and support.

Meaning emerges in spaces meaning built.


I closed my laptop at the end of the meeting, and before pushing my chair back from desk, I tapped out these words in my Notes app: “Meaning emerges in spaces meaning built.” You’re reading what happened to those words–what came from that experience.

We did build that space with meaning: Meaning to build it; building it to be meaningful. I was caught up in the surprise of a moving experience that meant something to everyone in attendance, but as I laid my head on the pillow for bed that night I checked my original reaction. Why be surprised? We built this space for exactly this sort of experience.

Five (or six, LOL) years of consistency, mistakes, lessons, discomfort, pain, joy, sadness, loss, celebration, regulars and new friends, this is why we show up. We built this space. This space that isn’t a physical space but a space in time. We built this space, and it is purpose built for meaning.

Sometimes it’s surprising when something you’ve consistently showed up to attend to for years returns something that you never thought possible! Sometimes the walls are backwards and the pegs don’t fit. But if you stick with it, there is something there in the building that means the most, and it makes the moment of its outcome strike you in a gasp of something bigger than you ever thought possible.

Then we can laugh about following the directions exactly.

This blog was published by Glioblastology on January 30, 2024. It is republished with permission.