Tuesday, September 27, 2016

No Regrets, Disability Be Damned

One of my life’s mantras is No Regrets. Sure, it’s cliché, but I never wanted to look back on missed opportunities and wonder What If. But when I was diagnosed with multiple sclerosis, that mantra collided with an incurable disease and it made me pause. Maybe I should take a pass more often for my health. Maybe I should live more conservatively. Maybe I should take fewer risks. So in that first year, when the enormity of coping with MS mentally was at its crescendo, I did. And I passed up a once-in-a-lifetime experience that haunts me to this day.

Now I could point to the missed opportunity to ride horses with Laura on a Mexican beach that year … when I was certain the headline in the following day’s paper was going to read Founder of ActiveMSers Dies in Freak Horse Accident. Or I could point to the missed opportunity that year to try surfing for the first time (similarly, Founder of ActiveMSers Perishes in Freak Surfing Accident). At the time, freak accidents seemed almost a given if I strayed from the safety of curling into a ball feeling sorry for myself. But no, these regrets pale to what happened in Las Vegas on November 1, 2006.

The location: SEMA, the invitation-only, over-the-top aftermarket car show that the Fast and the Furious movie franchise was essentially built around. The scene: the high-performance drifting track hazy with tire smoke and an unfortunate engine fire. The situation: As editor-in-chief of a Nissan magazine, I was being introduced to owners of souped up sports cars. But one owner had his own personal tractor beam and fan base: supermodel Tyson Beckford, at the time Ralph Lauren’s leading man.

I’ll admit my man crush was instantaneous. I remember the moment—the clothes, the handshake, the frighteningly good looks, piercing eyes, and epic jaw—as though it had happened yesterday. We talked cars. We talked drifting. I admired his modified 350Z. Tyson then handed me a small leather box (and I can say Tyson because by then we were basically on a first-name basis, at least in my head). Inside, on a bed of felt, was a gold access card. He had just invited me to his exclusive private party that he was hosting that night. Me.

How could I possibly go to a party that started well after my bedtime? How could I possibly go to such a party when I exuded about as much coolness as a pair of used lime-green Crocs. How? But there was a bigger problem, or so I thought: I had multiple sclerosis. I was disabled. I should play it safe, get my eight hours of sleep, and floss to prevent tooth decay.

So I never showed up.

Tyson Beckford. Photo by Jesse Gross.
More than two thirds of those diagnosed with MS are women, and I would hope right now that all of you are yelling at your computer screen calling me an idiot. For that matter, the guys, too. You all would be right. That party, I imagine, would have been epic, like the Hangover without the drunk wedding, naked Chinese dude, and Mike Tyson. Check that, Mike might have been there. And there might have been a tiger in the bathroom. The point is, I’ll never know.

There’s a valuable lesson here. No matter what your disability, don’t let it rule your life. Don’t let it dictate your every move. Don’t just play it safe. If you do, some of life’s most priceless moments will pass by like the sun fading into the horizon. Or a Tyson Beckford rager. From that day on I resurrected my mantra—No Regrets, MS be damned. And I haven’t regretted it since.

Tuesday, August 30, 2016

Failure is an Option

I stared at the kayak. “Oh, hell no,” my brain was telling me. I wasn’t worried about the paddling part—my arms can crank. But the getting in part, the staying upright part, the getting out part, and the whole not drowning part were an issue. Laura wanted to go, and suggested a tandem kayak would alleviate many of my concerns. My brain was skeptical. My brain, wisely, wanted to bail. And then, on the edge of a tiny lake in Colorado Springs six hours from home, my celebrity doomed me.

“Hey, don’t you do a blog?!”

Egad. Mr. ActiveMSer has been spotted contemplating waffling on well, being active.

“I love ActiveMSers, it’s so inspiring to see you getting out and doing what you can. It helped motivate me to climb a fourteener. You are awesome! I’m Meg, a longtime member with multiple sclerosis. It’s so great to meet you in person.”

Gulp. Totally busted. There was no way I could let Meg down now.

Okay, I reasoned with my brain, if Meg can do a fourteener (she even got a tattoo to commemorate the experience), I can attempt to kayak for a measly 15 minutes. So I went through my basic pre-kayak checklist: life jacket—check, paddle—check, behaving bladder—check (as much as one can check such things).

As I expected, getting into the kayak was challenging. But with a little help, I was off and paddling! That is, until I wasn’t. While my arms are great, my core (despite lots of training) puts the eh in meh. With my legs in front of me and no back support in this particular kayak, after a half dozen strokes I was admiring the puffy clouds directly above me in the sky. I discovered kayaking while lying on one’s back is rather impossible.

For the rest of our excursion, which was nearly a half hour, Laura did 98 percent of the work while I grabbed my legs to stay upright. If we got near shore, I’d paddle for a few strokes in the event a swarm of paparazzi (or just Meg) was going to capture my lameness for the tabloids. Oh, I didn’t actually care. Why?

See, earlier that day I played wheelchair tennis, a sport I feared would depress me, and just remind me of how I used to love to play the game and how I now had no business setting foot (or wheels as the case may be) on the court. Sure, I was terrible, but it was fantastic fun. Laura had to drag me off the court after nearly two hours. We even played doubles!

The point is, there likely will be times with multiple sclerosis that you fail trying to do something that the old you could do effortlessly. It’s important to realize that that’s okay. Heck, when you have MS, failure absolutely is an option, and an important one. Because if you never try, if you never experiment, if you never leave your comfort zone, then this disease wins. Screw* that.

While I enjoyed getting out on the lake on a beautiful day, I’ll try to kayak again with proper back support (and ideally an adaptive instructor). And I’ll get back out on the tennis court with a proper wheelchair designed for swinging the racquet and chasing balls. As for when motivation wanes and doubt creeps in, I discovered that you need to find inspiration wherever and however you can. This day it was a touch of serendipity, and her name was Meg.

*Note: my editor, aka wife, used this word to replace the more descriptive and vulgar word that I had originally chosen. Children, she reasoned, might read this. Meanwhile, I’m thinking kids have better things to do than to read blogs that contain words that rhyme with duck. While I always defer to her (always) better judgement, feel free to replace said word in your head for dramatic effect.

Tuesday, July 19, 2016

How to Survive 20 MRIs

Last month, if my count is correct, I had my 20th MRI. And in those 20 MRIs, I’ve learned some valuable lessons that I feel I absolutely must share—lessons that will comfort you on your next tube adventure. Or lessons that will rattle you to the very core and make you shudder in anticipation of your next trip inside The Tunnel of Doom. You never imagine something is going to go wrong. Until it does. Oh, Geez.

Now I know what you are probably thinking: Dave is going to tell a story about how he once accidentally forgot to remove his barbell-style tongue stud and for 45 minutes his tongue, literally, was glued to the sidewall of the 3-Tesla machine (featuring a powerful open-bore magnet) rendering him speechless for the first time in his 47 years. And how it took three medical techs to extricate Mr. Bexfield’s tongue from said magnet by using a plastic knife and a pair of sporks from someone’s well-timed Burger King takeout. Ah, you’d be wrong. But close.

As an MRI aficionado—and one can call oneself an aficionado after shooting the tube nearly two dozen times—I’ve amassed an impressive MRI resume. I’ve experienced short MRIs (20 minutes) and long MRIs (1.5 hours). I’ve been in open MRIs and closed MRIs, weak MRIs and strong MRIs, and portable MRIs and permanent MRIs. I’ve gotten MRIs with contrast and MRIs without contrast. I’ve had spine MRIs and brain MRIs. But nothing prepared me for one fateful afternoon with Dido Florian Cloud de Bounevialle O'Malley Armstrong.

Now, there has always been one reliable constant during every imaging session: that telltale MRI siren call, a racket akin to a cross between whales mating, a symphony of jackhammers, and a pig stuck in a well. Chk, chk, chk, EEE, EEE, EEE, UHH, UHH, UHH, D’OH, D’OH, D’OH. Fortunately, some MRI facilities offer entertainment to keep your mind off all the incessant whale/jackhammer/pig clattering, usually in the form of music (I’ve even watched several feature-length films, how trick is that?!, but that’s not typical).

For one of my MRIs, I made the decision to select a Dido CD, Life for Rent. It seemed like a genius choice at the time—soothing, but not too soothing, with enough defiance to resonate with someone who has multiple sclerosis. The first track: White Flag, a song about not surrendering, not giving up. Perfect… until 30 seconds in, when disaster struck, my own personal tongue-stud catastrophe. Yup. The CD started to skip.

I had a choice between two terrible options. I could squeeze the “emergency” bulb to signal the MRI tech that there was a problem, potentially triggering an urgent rush to aid a patient in distress, shutting down the MRI, and delaying every poor individual after me—all over a skipping CD. Or I could suck it up for 20 minutes. You don’t all need to call me a hero, but I wasn’t going to raise that white flag. Oh, hell no. I bravely took one for the team.

After my harrowing experience, I was presented with the Dido CD. It hasn’t skipped since.
Now if you are reading this post because you really wanted practical MRI advice for someone with MS, I actually do have a few good tips. Pee first (but not too early, wait until you’ve been called back), make sure you are hydrated (enough) if you need to get poked for contrast, don’t wear anything metal (rings, earrings, glasses, tongue studs), be as still as possible (well, duh), close your eyes (unless you can watch a movie), mentally chillax if you are claustrophobic (there may be some pharma solutions), and smile when you think of this post. Oh, and be thankful Dido isn’t starting the same song over 1,832 times.

Wednesday, June 22, 2016

When MSers Attack: Hate Mail Fail

After running ActiveMSers for 10 years, I’ve discovered blogging has its occasional hazards. I’ve received angry phone calls from businesses furious that their product did not receive better reviews in my tests. I’ve gotten dismissive e-mails highlighting my idiocy and lack of knowledge about fill-in-the-blank (e.g., “What do you know about stem cell transplants, huh, Dave???”). I’ve even been threatened with a lawsuit for violating HIPAA when a member in her 30s, despite common sense and living in the Internet age, chose to use her full real name on our public, searchable forum. Shocker, Google found it. Although I immediately scrubbed everything related to this member from my website, it took an hour to explain to her mom, yes her mom, that I cannot also remove content from Google. But nothing could have prepared me for last week: an epic, seething over-the-top hate mail from a fellow MSer blasting me for a perceived slight.

“First of all Dave, you have primary progressive MS, stop relating to RRM. The remark you made about the 5 foot nothing nurse really irks me! It sounds like you think you're better than she is? Well hello, you may be taller than she is but, guess what, she can walk and you can't!! So, who is really the nothing? Oh, and yes who has the job! Who the heck gave you this notion that you were better than shorter people? Were you scrawny a geek, and your parents taught you that you should be proud to be tall!? FYI, I'm 5'8" but I think it's terrible how some people be little people for people that are shorter than them to make themselves feel better!”

I don't even troll trolls.
Oof. Okay, for starters I have relapse remitting MS (perhaps now secondary progressive, but not officially) and I’d like to think I relate to all MSers regardless of type. Technically I can still walk (slowly), but like that matters when it comes to being "something." And I do just fine running this little website called ActiveMSers. Ah, I digress. But making fun of short people? That’s not typically my MO. Now, I’m far from infallible. I’ve said some stupid things over the years (usually in a failed attempt at humor), and I’ll fess up, albeit stubbornly at times, when I lay an egg. But what did I do this time? Apparently use the English language properly. See, punctuation matters, e.g., Let’s eat Grandpa v. Let’s eat, Grandpa.

The best that I can infer after I found my jaw on the floor: in my most recent blog post I referred to my petite hero-of-a nurse who amazingly propped up my unconscious body as “five-foot-nothing,” meaning five foot, zero inches. The expression has been used hundreds and hundreds of times in recent news articles. It was immortalized in this iconic scene from the movie Rudy. Heck, usage in America goes back over 100 years. None of it derogatory. But this particular member of ActiveMSers must have grossly misread the sentence and thought that I had made fun of my nurse because of her height and called her “a nothing.” Nothing could be further from the truth.

I debated posting this for obvious reasons, but I felt we all at times need a reminder that words have consequences. I’m not going to kid myself that civility will rise up on the internet like a double rainbow (whoa, double rainbow all the way) and knee-jerk-reactions will vanish like Mr. Snuffleupagus (but he was right there!). But we are better than this. Members of ActiveMSers are working together for the same goal, to live better with multiple sclerosis. We are one.

Resist the urge to criticize this member—well, now former member (I welcome her to rejoin). We all have bad days, we all say things we regret. I’m not excusing her comments, but lashing back serves no positive purpose. This disease of ours can put us on an edge (or a ledge?) that is difficult for others to comprehend. When that happens, take a breath. Step back. Be the bigger person. And for gosh sakes, next time someone feels I need to get straightened out (and there will be a next time), maybe give me the benefit of the doubt. Oh, and leave my parents out of it. My poor folks tried their best.

Wednesday, June 15, 2016

Giving it a Shot

Selfie with the Space Needle
When the FDA approved Zinbryta (daclizumab) last month, one line in the FDA press release “stuck” out to me: “long-acting injection that is self-administered by the patient monthly.” Injection. Self-administered. In other words or in plainer language that anyone with multiple sclerosis can understand, the FDA is referring to SHOTS. There is a reason I’ve written that in ALL CAPS. Because for years, shots have FREAKED ME OUT. And just when it appeared giving yourself a shot for your MS was going the way of the dodo and of friends to invite over for dinner who consume gluten, this news drops.

For some, shots are fun. The band LMFAO is famous (infamous?) for singing about shots. Steph Curry, Ronaldo, and Ovechkin all enjoy taking shots. Ansel Adams was a shot expert. Katniss Everdeen has an awesome shot. Me? I’m not a huge fan. Since childhood, I’ve tried to follow a general rule: AVOID SHOTS. Getting diagnosed with multiple sclerosis ten years ago, though, sure mucked that up. My options back then: a daily shot, a few times a week shot, or a weekly shot—with a needle so large you might mistake it for a Seattle landmark.

Now if you think I am exaggerating my fear of needles for the purposes of blog humor, you would be wrong. I gave up watching medical shows years ago because of needles. I cringe and close my eyes if I catch a glance of someone getting a tattoo, even a tattoo of a cute, carefree dolphin with sparkles and rainbows. Heck, I’ve weighed the benefits/drawbacks of lockjaw to argue the possibility of evading a tetanus shot.

Ovechkin likes to take shots and give them.
So when I gave myself my very first shot over a decade ago, it was an experience that I’ll remember forever. And, unfortunately, so will poor Laura and the 5-foot-nothing Panamanian MS nurse who had to prop up my lifeless body. Apparently, at the time my brain was not comfortable with the fact that I was sticking a SHARP NEEDLE into my PRECIOUS SKIN and then INJECTING MEDICATION. And by not comfortable, I mean it went into total shutdown mode, which I discovered is not recommended for a number of reasons. For starters, you need a functioning brain. Second, you are holding a sharp needle. Third, a tiny, 50-year old Panamanian woman is not the ideal person to support a 6-foot tall needle weeny who just made himself pass out while holding a sharp needle.

Fortunately, as my bottom was sliding out of the chair, the nurse grabbed and supported my rear end while Laura rather urgently sought assistance, or so I’m told. It would have been a sight to see if I had not been unconscious, dreaming of riding a rocket-powered Cheeto while lassoing cans beer (I’m just guessing here, but such dreams for me seem plausible if not probable). The MS nurse gently slid me to the floor and in moments I had the entire neurology department looking in on me as I was shaken awake.

The closest I've ever come to a tattoo. Note the sparkles!
When I came to, it dawned on me that all was fine with the world. The universe did not implode, Daniel Powter’s song Bad Day was still topping the charts (oh the irony), and the Cubs didn’t win the World Series. Over a thousand shots later, I can say with authority that giving yourself a shot—voluntarily, not under duress or threat—actually is not too hard. Or that painful. Or that terrifying. Seriously.

What I am trying to get across: If I can do it, Mr. Needle Overreacting Wimpy Scaredy Cat, you most certainly can do it. Trust me. Just get your brain wrapped around the idea and go for it confidently, with purpose, knowing that Dave broke down those barriers of self-afflicted shot embarrassment years ago. It might take a little time to get into the swing of things and adjust to the prick, but it’ll happen. You might screw up once or twice, and that’s okay. You’ve totally got this. All that said, it might not hurt to do your first poke on a padded surface.

Thursday, April 21, 2016

But We All Look So Healthy

I’d always wondered how quickly I could insert my foot into my mouth. Generally it takes a few minutes into a conversation, but I exceeded even my own expectations when I tasted the soles of my shoes ten seconds into HealtheVoices 2016, establishing a new personal record (and you thought PRs were only for athletic achievements!).

When I was invited, all expenses paid, to attend and participate in HealtheVoices 2016 in Chicago, “a first-of-its-kind, weekend-long conference that brings together online advocates from across various health conditions,” I immediately wondered, um, why. The event was sponsored by Janssen Pharmaceuticals (along with Everyday Health), which currently only dabbles in multiple sclerosis research--there was nothing concrete in the pipeline for my disease. And the premise of the conference sounded sketchy--“to provide valuable content, such as tips to further engage and grow an audience; thought-provoking conversation; and networking opportunities for online health advocates”--triggering my pharma-dar to go off. Lots of giving, not much taking. Suspicious. What was the catch? So I asked. The vice president. 10 seconds into the conference. Oh, Dave.

Okay, a few disclaimers: a) I did not know that Linda Fedow was the VP (aka, the “boss-boss” according to others at Janssen) when I half-jokingly said I didn’t want to speak to a Janssen rep (after all I was excited to meet the other 90+ patient advocates, all of whom I had diligently researched beforehand), b) after I discovered she was the boss-boss, I immediately quizzed her on the wisdom of my presence, and c) yes, I did tell her I should be next years’ keynote speaker… before discovering the two speakers for this event were Jamie Heywood, co-founder of www.PatientsLikeMe.com, and Kevin Pho, the doc behind www.KevinMD.com. Oh, Dave.

I was surrounded by social media rock stars in patient health advocacy… 300K Twitter followers, 100K Facebook likes, a zillion subscribers on YouTube were not uncommon. On the MS front, I finally got to meet the one and only Trevis Gleason (http://trevislgleason.com/) who blogs for Everyday Health. We both started blogging 10 years ago (ActiveMSers launched just a couple weeks before Trevis’ blog), making the two of us arguably the longest tenured MS bloggers on the planet. Longtime buds Lisa Emrich (Carnival of MS Bloggers), Lisa Dasis (MS Lisa Says), and David Lyons (MSFitness Challenge) rounded out the MS contingency, although another blogger—a breast cancer survivor—had been recently diagnosed with multiple sclerosis. Ann Marie probably wasn't rah-rah thrilled about joining our team, but she's an awesome fighter and has that kind of attitude all of us with challenges need to channel.

It’s hard to point to one highlight. The educational breakout sessions were fantastic and chock-full of sage advice, tips, and industry tricks. Speakers confirmed what I suspected--that I’m not doing enough video, I need to pay more attention to analytics, and I need to post more regularly. I also learned that I’m doing a lot of things right already--following the rules of the blogging road legally, connecting with you all across multiple platforms (did you know I just started an Instagram account?), and being authentic, honest, and true. The keynote speakers were engaging and practiced (albeit slightly removed from the patient perspective), the networking opportunities were bountiful, and the entire event team was beyond helpful and courteous to a fault.

Best of all, I made a bunch of new besties, far too many to list. Britt at The Hurt Blogger, Marisa at Lupus Chick, Ryan at Crohn’s Guy, Jaime at Pretty Rotten Guts, Josh at I’m Still Josh, Julie at It’sJust a Bad Day, and on and on. It was inspiring and empowering to share the same oxygen as nearly 100 luminaries from the health advocacy world. And the crazy thing: everyone was fantastically upbeat, optimistic, and hopeful, even though virtually all of us were burdened with a serious condition (often multiple conditions), most of them entirely invisible to the uneducated. Heck, we all looked sooo healthy to outsiders! (In fact, I was one of the only visibly disabled attendees, and the only one using a wheelchair.) If they only knew….

And one day they will. As our collective patient voices continue to get louder, thanks in part to events like these, more and more people will know and comprehend (at least a little) the struggles of those facing chronic health problems and the importance of finding better treatments and, ultimately, cures. But more importantly, our voices will continue to spread, reaching those most in need of hearing of them—those who share our conditions and need support, education, and the reassurance that life goes on. No matter what the heavens throw at us.

Hope to see everyone for HeatheVoices 2017… even if I’m not your keynote speaker, Linda.

Thursday, March 24, 2016

Small Victories

 The task ahead of me was monumental, some might even say epic. The challenge? Descend a near vertical cliff face through clutching mud in blistering rain, the trail dangerously exposed, before traversing miles of devastatingly slick boulders to reach the final goal of my pilgrimage: the shores of the Pacific ocean. Well, at least that’s what a short quarter-mile hike in a light drizzle down a trail at Olympic National Park felt like to me, a seriously gimpy dude with multiple sclerosis.

The park rangers suggested Ruby Beach had the easiest access for someone who is handicapped—“it might even be accessible for someone who was pretty good with a wheelchair” they intoned. I guess by “pretty good” they meant a Paralympian with tree-trunk arms and no fear since there were many, many steps. So, possible, yes. Realistic? Hahahaha.

But I like a challenge. I was pretty sure I could make it down with my forearm crutches, I told Laura. She nodded.

“I’m sure you can make it down, too. I’m just worried about the whole ‘up’ part.”
She did have a point. When I bonk, I really bonk and need rest… a lot of rest. This hike, a total of a half mile, could take hours. I figured, bah, there was a light breeze that easily carried any caution (and perhaps sanity) away.

The trail was a touch muddy, but not sloppy. The trail in places was a bit steep, but not steep steep. The stairs were many, but not too many. The pebbles on the beach were tricky, but not too tricky. Best of all there were places to rest all along the way—a bench, a rock, a perfectly placed log.

When I finally made it to the beach (and since you are reading this, made it back without the help of EMTs), it’s hard to relay my elation for such a small victory. I just sat there with Laura and took in the Pacific and all of its vastness as the afternoon unwound, the regular trappings of my disease the furthest thing from my present.

For some, small victories might elicit a shrug--remembering that coupon in your wallet to save you $1 off your kids’ Happy Meal or guessing the right TV channel in your hotel room on the first try. But small victories when you have a disability are just like big victories, only without the fanfare. And we have to celebrate them. Be proud of them, no matter how insignificant they may seem to an outsider. They all matter in their own way. We are all champions.