Required *PAUSE* to Breathe, Reset |
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The last year has been the most challenging of my life. And Laura's. Unquestionably. And on so many levels. Physically, mentally, socially. We’ve been buried by question marks, not just about my health, but question marks about our future endeavors, including even the future of ActiveMSers. This series of emails from me will be the most consequential I’ve ever written. You’ll want to read every word, trust me. Full disclosure: they will challenge you to reexamine your life with a disability, send reverberating shockwaves throughout the MS community worldwide, be the catalyst (God willing) to fuel a swath of healthcare reforms, and potentially change your entire future. I recommend you buckle up and hang on, it’s going to be one hell of a rip-roaring ride. |
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Greetings, when I started sharing in late February this breathtaking odyssey that I’m calling MS Diagnosed, I jumped in with abandon, perhaps too much abandon. Even though I made the point to say in that first email that, “The one thing I can assure you: there’s no reason to fret about my MS health. Really!” it was not reassuring enough. Based on the flood of panicked well-wishes, prayers, tears, and tearful prayers (and probably prayerful tears), I thought it best to circle back to my assurances. And, critically, to make a few vital announcements.
I’ll be fine! Laura will be fine! This tale of 1,000 lifetimes wouldn’t be a very compelling one if it concluded with me ending up in a nursing home making jokes during my daily sponge bath about the flavor of Jell-O I had for lunch. (Which, by the way, I would totally do.) And it certainly wouldn’t fit with my optimistic, never surrender attitude that I try to infuse into all my outreach.
No, this story is more Luke v. Death Star, Rocky v. Drago, and John McLane v. any bad dude in any Die Hard movie. Combined. Only this story is real. So I recommend you shift those concerns about my health instead into frenzied anticipation pondering how the hell I’m going to MacGyver my way out of this seemingly intractable crisis situation. (Or more appropriately, MacGruber my way; I’m a goof, after all.)
That brings me to my next important point. This improbable saga of mine is going to get bigger—way, way bigger. Bigger than me, bigger than our group, bigger than MS even. As this unstoppable train rumbles forward, I will try my absolute best to keep things grounded. A few other bits of advice….
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// MS DIAGNOSED: Essential Advice
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PATIENCE. This longform style of storytelling will frustrate those looking for today’s bite-sized Tweet snacks. Sorry. But as this story unfolds and the layers get unpeeled, you’ll understand why it is necessary. There will be more than a dozen installments coming, and gosh knows how many if I get on a serious roll.
BREATHE. Alas, this tale also is going to keep descending to the gates of hell for a bit longer, with pretty much every installment leaving you holding your breath. I recommend you don’t. Unless you’re trying to get rid of hiccups. Actually, holding your breath for that doesn’t work either. Just breathe, we’ll get through this together. Trust me.
LAUGH, CHEER, SCREAM. This odyssey of a health crisis will scramble your emotions like a Saturday morning Grand Slam breakfast at Denny’s, only without the heartburn. OK, there might be some heartburn. In addition to sharing inevitable tears with us (sorry), we invite you to have a little fun. Laugh with us, and at us! Cheer for us! Pull your hair out in utter frustration with us! Wait, don’t do that.
SERIOUSLY, PATIENCE! My goal with this series is to challenge the medical establishment and rewrite the rulebook of healthcare—to prevent what is happening to me from happening to others—and that can’t take place if I breeze by the details. They matter. They matter so much that one of those details might just save your own life, regardless of where you are in your MS journey.
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BONUS COVERAGE & CONVERSATION: MS Diagnosed Forum |
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// MS DIAGNOSED: Necessary Preparations & Next Steps
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Before the you-know-what hits the fan (psst: I’m talking about poop), I’ve got to batten down the proverbial hatches.
LOCKING THE FORUM. In the coming week or so I’ll likely be locking our forum to new posts from guests. Due to my workload, I am unable to moderate the forum, and with traffic poised to increase, I’m afraid I’m going to have to restrict posts to just my own. You will still be able to research and poke around through any of the past 10K posts, no worries.
EXPANDING TO SOCIAL MEDIA. Soon I will begin posting weekly alerts for MS Diagnosed (#MSdiagnosed) on Instagram and Facebook, as well as Twitter. Even TikTok if I get my ducks in a row! If you are on social media, look for those announcements, and share them as you see fit. NOTE: I will continue sending alerts directly to you via email. And you’ll get them first as card-carrying members of ActiveMSers (well, sans card).
TRANSFERING THE STORY ONLINE. For consistency and to lighten my workload a smidge, all installments will now post online at ActiveMSers: https://www.activemsers.org/ms-diagnosed (currently disabled). To keep everyone on the same page, past updates are going to be removed. They will steadily return to our main website in all their glory and in proper order on “MS Diagnosed Mondays” once it officially launches in May. Unfortunately, this also means there will be a delay between some new installments, as we’ll need to let the world catch up to us. Sorry!
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Before I close, your messages of encouragement and unwavering support for my wife and me have been nothing short of awe-inspiring. I am gob smacked you think so highly of us and the contributions we’ve made with ActiveMSers and, it goes without saying, how concerned you are for our wellbeing. Humbling. When time allows, I hope to write you all back personally. I’ve heard from so many good friends as well as countless MSers moved to write me for the first time. Your own stories of resilience and moxie during challenging times fill me with so much pride and hope.
So now you are probably even more intrigued as to where in the holy heck this is going. Me too! This story is still unfolding, I’m still in the weeds (but no longer in any health danger), and I’m still writing furiously. You’ll soon better understand why my world has been turned upside down and why there is so much uncertainty in our future—and understand much sooner than I had planned. That’s because a) I don’t want to give any of you coronaries out of worry and b) this audience is going to expand far beyond the confines of informed optimistic misfits. To that end, I’ll release the Preface and Introduction—initially held to build suspense (urp, a little too much suspense)—so readers will have a better idea of where this story is going as well as the ultimate end game.
Again, I apologize if I caused you to lose any sleep fretting. And I apologize in advance for what I may have gotten you into, as this appears to be turning into a full-fledged book: Sit Down Before Reading—A Memoir That Might Just Save Your Life. When you hear from me next, I’d probably take that advice. Be active, stay fit, and keep exploring!
Sincerely,
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Dave Bexfield
p.s. I'm shooting for the preface and introduction to be released that first Monday in May, but I may not hit that deadline as I've got to do an avalanche of other prep work. Thanks for being in my corner. I'll always be in yours.
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be active - stay fit - keep exploring |
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