Greetings, please don’t panic, let me explain. A
few weeks ago I was in Barcelona, Spain, mesmerized. I was watching a
traditional Catalan castell, or human tower, being built. The biggest
members of the group–over 100 strong made up of men, women, and
children–form the stout base. Then the tower assembles upward, level
after level (the record is 10!), until a small child scales to the top
with a final wave. There’s a reason UNESCO calls it a masterpiece to be
treasured. I
recorded one such tower for you to watch here being done by the
current world champions (the phone was off to the side, as I didn’t want
to miss a moment with my own eyes).
The experience made me realize that we optimistic misfits
must rely on each other as we build our towers of hope–mustering the
motto of castellers: strength, balance, courage, and common sense–in our
quest to manage the challenges of our diseases with unwavering resolve.
And it made me realize that you would be okay if I’m not always the
bottom pillar. The weight of daily Facebook, Twitter and Instagram posts,
weekly videos, frequent blogs, occasional guest posts, monthly
newsletters, and regular website updates had been catching up to me. And
I was still stuck on Chapter Three of the book I promised to write nearly
a year ago. So I told Laura I was thinking of, maybe, possibly,
retiring….
I wasn’t prepared for the full-on
“what-you-talkin’-bout-Willis” stink eye that spouses deploy in
times of incredulous befuddlement. Laura was having none of that.
“Really,” she said. “Thousands of people
depend on you. You really, really enjoy helping folks. You love
ActiveMSers. And now you want to sit on the couch and do what? Eat
Cheetos? Drink beer?”
I briefly
contemplated saying “obviously both” before wising up.
She was right, of course. I consider all of you my friends, even if our
paths have never crossed except in the virtual world. And for those who
have reached out to me via e-mail, I’ve saved all your letters, every
single one, and have forwarded dozens on to my parents (names and e-mail
addresses removed for privacy) to show them that they raised a decent
kid.
When I started ActiveMSers, I had no grand intentions of
monetizing the website. And over the years as social media
“influencer” became a new career option, I’ve resisted, trying
my best not to commercialize it to avoid the biases and inauthentic
pitches that plague so much on the internet today. I still don’t accept
ads, paid guest posts, endorsements, or sponsorships despite seemingly
daily inquiries. This might sound downright crazy, as I am not a
tax-deductible nonprofit, just a non-profitable nonprofit, which means
virtually all funds to fuel ActiveMSers–thousands of dollars over the
years–have come out of my pocket (well, technically Laura’s).
Yet I wouldn’t have it any other way, and it’s not because
I’m some virtuous dude. Thanks in no small part to you and your
support–from my New Mexico True contest
win complete with an oversized check to my epic
fight with my health insurer that made the New York Times …
complete with a drawing of an oversized check–I’m in a fortunate
position where I can most definitely afford it. Indeed, I am forever in
your debt. (And knowing me, I’ll probably need your help again for a
future kerfuffle or two since I have a penchant for getting into
mischief.)
Part of my goal at ActiveMSers has long been to be a gatekeeper
of sorts, to sift through the reams of MS news that wind through the
interwebs to find the nuggets that really matter (and amusing silly ones
that don’t). I subscribe to dozens of medical newsletters, research
journals, health sites, and MS-specific blogs. I scan the feeds of
hundreds of social media accounts to glean the latest breaking news about
our disease. I read every available MS and neurology magazine cover to
cover. I’ve been doing this since March 2, 2006, the day I launched
ActiveMSers, now one of the longest running MS blogs in existence,
perhaps the longest.
But then on the
cruise, the one my father survived despite failing the life boat drill,
my gate key was infuriatingly wonky. On the open ocean, internet access
can suck like the Cleveland Browns, especially when you don’t cough up
extra dough for “premium” access (or draft football players
poorly). So I gave up trying to stay on top of everything MS related,
mustering only a few random posts. And it felt strangely okay. I missed
you guys, but I didn’t miss yet another promising EAE mouse-model MS
study that is a decade away from human clinical trials, or the 6 must-do
diet tips for MSers that are decidedly not “must do,” or the
caustic rhetoric of politics that is consuming Twitter and Facebook no
matter how I hard I try to avoid it.
No wonder I have MS fatigue, just not the kind that plagues
most of us. So I’ve made the decision to lower stress and pull back a
little. A little, just a little! But you will notice some changes. While I
plan to stay on top of exercise and major MS research, I’ve unsubscribed
en masse to nearly all my MS mailings (a dozen plus a day) including
even the blogs of friends, so I’ll regretfully miss some general MS
tidbits. I’ll stay on Twitter and Facebook and Instagram,
just not daily–it’s not worth the energy and brain suck. I’m also not
going to fret about deadlines, self-imposed or otherwise, so the
newsletters and blog
posts and YouTube videos will
come when they come. The
forum will continue unchanged, but we critically need new castellers
to support this effort, as our regular contributors (in particular AMF
Adventures, aka Larry, aka MS Yoda) deserve a spell from their heavy
lifting over the years. And our main
website will keep chugging despite not being as mobile-friendly as
I’d like it to be (sorry, that’s an ongoing frustration with no easy fix
other than a full redesign). Heck, you might even see some entertaining
new wrinkles from ActiveMSers in other areas, and not just those
sprouting on my forehead. I’ve got some exciting avenues I still want to
explore!
I hope you
understand that making this decision to separate a bit from the MS space
was not one I made lightly. But it’s a shit-ton better than maybe
possibly retiring. And I can still show my face publicly, as frightening
as that may be (see right), which was hammered home on the day after our
return. As I rolled into my favorite Indian restaurant, one patron’s eyes
brightened noticeably as she waved to me. Crap, I thought. We probably
chatted at some friends’ party for a solid hour, or some such thing, and
I now have no clue who she is.
“Dave, I have MS and I am a huge fan of ActiveMSers. I
live just up the road from you and I was wondering when I’d finally get
to meet you! My name is Alexa.”
Laura looked at me. You know that look. The I-told-you-so look.
Oh hell no, I’m not retiring. Be active, stay fit, and keep exploring!
