F-Words

On balancing family, fatigue, and fulfillment

Life, lately, has felt like juggling eggs in a wind tunnel. On a unicycle.

As a futurist, I’m sort of like a meteorologist for technology. I take calculated guesses based on past and current tech trends, and try to help my clients prepare for the forecasted “weather”.

(The geeks among you are welcome to insert a cloud joke here.)

Anyway, the work is heady, the travel is intense, and the hours can be… aggressive. But, I’m deeply grateful. I sincerely love my work, have a great team, and believe I’m doing what God put me on this earth to do: Inform and inspire. Edu-tain. In my eighth grade graduation booklet, I wrote that I hoped to become a computer engineer or an entertainer. I’ve somehow lucked into shooting the curl. I’ve got a front row seat to the future, and in an odd, time-bending way, it can feel like being the first person to see a sunrise.

But when I come home, futurama fades into the background. At home, I’m not the chief futurist, but chief nostalgist — teller of tired tropes, dispenser of dad jokes, and mediator of mediocre life advice. My kids, now in middle school and high school, challenge me in present-tense ways the future never could. They keep my feet firmly planted in the present, and although Barb will confirm that I’ve been known to grumble about the coordinated chaos, they bring a fulfillment that no gadget or gizmo could ever match.

And Barb. My bride, my rock, my North Star, and my fully credentialed in-house therapist. When the degree of difficulty in life enters expert mode, she’s there. Not as a nurse or caretaker, but as a partner — supportive, patient, and with a knack for making me smile even when it feels like life is dealing only lemons. She stands as a constant reminder of the only future that matters — the one where we grow old, hold hands, and embarrass our kids together.

But MS. Oy. MS is a real jerk. An uninvited guest who’s overstayed its welcome. Cousin Eddie to my Clark Griswold. Drinking my liquor, clogging the shitter, and doing its best to ruin my proverbial vacation. Still, MS, with all its unwelcome antics and tomfoolery, is “part of our family”, and, in turn, part of our juggling act. An extra egg that we didn’t ask for but must handle nonetheless.

6 years into my diagnosis, I’m developing language for the specific kind of weariness that MS brings. It’s like a layer of fog that wraps around you, muffling the world and dragging your body towards stillness. I tell the family that I’m like an iPhone with a broken battery. I’m fine when I’m charged, but I drain to yellow faster than most, and sporadically turn off altogether and without warning.

Yesterday, at Bennie’s school music show, was the first time I’ve experienced difficulty walking. For about 3 exquisite minutes, I felt like my legs were encased in wet concrete. C-3PO vibes. Lift thigh. Flex knee. Point toe. Again. Again. Only 300 more to go. Walking is incredibly hard work when it suddenly feels like work.

And then I’m suddenly all better. Enjoying a bunch of 11 year olds singing about apple pie and back to gratitude. Gratitude for MS as a great teacher of endurance and resilience. It’s taught me to treasure the moments of clarity, to cherish every giggle with the kids, every snuggle, every shared moment with my wife, my friends, and my colleagues and clients.

So, I juggle. I juggle the future and the present, the joy and the fatigue, the kids’ sports and music schedules and my neurologist appointments. I trip, I drop eggs, I swear with panache… and then I pick the eggs I can back up and start again.

Because juggling, I’m finding, isn’t about perfection. It’s about learning how to keep going, even when you’re on a unicycle, in a wind tunnel, with a broken iPhone battery and good ol’ Cousin Eddie over your shoulder.

As my old friend and business partner Mike Maddock would memorably say:

“I’ve never felt so *alive*.”

I love that quote because it works in the best of times, the worst of times, and most poignantly, in these Dickensian days that are truly both at once.

Onward,

~!mb