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Friday, November 9, 2018

Taking a (small) step back from ActiveMSers

Written by: Dave Bexfield - Active MSer's
Dave basicGreetings, 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!

Dave Bexfield







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