2019-10-19

Playing the Disability Card FTW

I throw caution to the wind so frequently that I’ve practically been forced to learn how to parasail. Now I’m not running out into a lightning storm with a kite and key—c’mon, I’m not daft (nor am I a printer, political philosopher, politician, Freemason, postmaster, scientist, inventor, civic activist, statesman, or diplomat). But I’ve been rolling the dice since way before Andrew Clay coined his middle name. I’ve been pushing envelopes for so long I can remember the days when you actually had to lick them. I’m not going to say Livin’ On The Edge is my anthem, but Aerosmith has a point, and author J.K. Rowling perhaps said it best.

"It is impossible to live without failing at something, unless you live so cautiously that you might as well not have lived at all. In which case, you fail by default."

There are going to be failures when you live with a challenging disease, but at least you are living, damn it. So that’s why I wantonly attend chaotic outdoor events—most recently the Albuquerque International Balloon Fiesta held on monstrously thick grass—that are not especially friendly to a disabled person with multiple sclerosis … particularly one who also uses a wheelchair and has a mercurial bladder with an attitude problem.

Allow me to set this stage: I surprised Laura with a pair of tickets to see Sting in concert. An outdoor concert. At a grassy community park. In Taos, New Mexico. Yes, the tiny mountain town of Taos, population 5,668 people. Number of concert tickets sold to see Sting in the tiny mountain town of Taos? 9,000. What could possibly go wrong?

As you might expect, the town was crowded. The ski area was crowded. The restaurants were crowded. The park was gonna be hella crowded. To prepare, concert organizers informed attendees that basically you could bring in jack squat: no chairs, no umbrellas, nada. A blanket to sit on was permissible, but pure folly as there was no room on the ground to place said blanket—it was going to be standing room only. Ah, unless you were handicapped! There was a special fenced-off section reserved for us “specials” complete with a paved path, chairs, and even two wheelchair-accessible porta potties just outside our area.

The evening started perfectly. We easily found parking. We got a restaurant reservation at a steakhouse directly across from the park. We got to cut the line to get into the concert. And we found a great spot to park my wheelchair in our reserved area. Just when I thought it couldn’t get any better, while we were waiting for Sting to take the stage, the woman sitting behind us tapped me on the shoulder.

The accessible porta potty appears sooo close!
“They gave me an extra pint of beer for free, and I can’t drink both. Would you like one?”

As I took the beer, uttering profuse thanks, it dawned on me that this is what it must feel like to hit the Powerball. Cold beer. Cool night. And a hot Sting. (Seriously, the dude is 68 years old and looks twenty years younger. Sings pretty well, too, I hear.) But before I took my first sip of that icy cold, delicious free beer, I overhead someone complaining. About the bathrooms. The wait was over an hour.

I looked at the beer. I looked at the handicapped bathrooms. I looked at the long, long, long line waiting to use the handicapped bathrooms. I knew what had to be done. Using tremendous, and to date, unknown willpower, I passed the beer to Laura, not even taking a sip.

“Too risky,” I said. “The last thing I need to do is pee.”

As the words escaped my mouth, I knew I accidentally had just violated the cardinal MS rule. Never, ever talk about bathrooms unless you have easy access to one. No, no, no, I apologized to the MS gods. It was just a passing observation! Nope. Now I had to pee. And Sting was coming on. I turned my wheelchair around to head into the gauntlet of the snaking bathroom line when a bathroom door opened, and—for the win—I played the card. The gimp in the wheelchair card. I locked eyes with the woman at the front of the line. I pointed, she nodded. It was understood. 

Safely in the bathroom, the panic soothed. I started to relax and focus on the task at hand. Until I overhead a man in line angrily yell loudly that he had been in line for an hour and 15 minutes. And that he really, really had to pee. Which meant, suddenly, I didn’t have to. Oh, MS! After 10 minutes I emerged, puzzled as to why there were only two bathrooms for 9,000 people when I spotted, on the other side of the field, the dozens of porta-potties reserved for able-bodied concert-goers. All underneath a mammoth sign that read RESTROOMS. Too bad that guy, and the hundred or so behind him, couldn’t read.

I got back to our spot just as Sting started to sing. I closed my eyes to absorb the moment. Message in a Bottle vibrated my wheelchair. But at that moment, I didn’t need to send an SOS to the world. I had the world in my hands. We might not have control over our diseases—and at times we might channel the King of Pain (Laura might also vote for King of Pain-in-the-Ass)—but we have control over our attitudes. Never forget that. And never let that go.






2019-07-19

Getting Lucky Because of MS


The other day, I playfully joked about getting mauled by bears because I was the slowest in our group—nature’s way of culling the herd—haha, so funny. Then I went to Yellowstone and the Grand Tetons. You know, where they have actual bears. And on our FIRST stroll in the parks, BEFORE purchasing bear spray, a woman ran up to us, breathless and panicked. “They tell you not to run. BUT I HAD TO RUN.” Then she pointed behind her. Jesus, she was talking about a bear. 

My only weapon was a removable armrest on my wheelchair, which I reasoned I could wedge into a grizzly’s jaws if I timed it juuust right. GRRR-chunk! Then the bear would wander cluelessly as it now had a wheelchair armrest stuck in its maw, inspiring onlookers to film the hilarity, and BOOM: the video would go viral with Dave the hero! I also made a mental note to maybe not joke about bear mauling just before going into bear country… without bear spray. 

Moments before I could tell Laura and our new friend to “save yourselves, go on without me” a ranger rounded the bend. The adolescent black bear was just as scared of us as we were of it and had scampered off. Crisis averted. For now. After all, we still had a week for me to get unceremoniously culled. But since you are reading this, I not only survived our adventure, I experienced a stunningly priceless moment thanks, ironically, to my multiple sclerosis. 

Video Blog: Thank You, MS!? So there I was, on the toilet, in the middle of Yellowstone National Park, when I had a life-altering experience that would eventually bring me to near tears. And it happened only because I have this damn disease. As much as multiple sclerosis can take away things, it can give you some things back. So I took it and ran/rolled with it! This is my first vlog on adventures with MS, and it includes a couple epic on-location shots of my Yellowstone escapade. I hope you enjoy my adventure as much as I did! 



2019-05-09

Wheeling Through the Hood


As you might expect, some of my craziest stories involve beer. Like that time I accidentally ordered a “jug” of beer for $1.25 in Vietnam (thinking, of course, that I was ordering a mug), foolishly finished it anyway (waste beer, never!), and was promptly propositioned by two women on a motor scooter, resulting in now-drunk me explaining to prostitutes just how unsafe it would be for three people to ride a single motor scooter. Or that time I was in South Africa at an all-black university, during Apartheid, drinking warm beer after sunset in a dorm room with a new friend who told me—as he was shaking my hand—that he was having a conversation with a white person for the first time in his life. Or that time I was in New Zealand, or Peru, or Austria… hell, just name a country. And now I can add to that list Orlando, Florida.

Long story short, Celgene invited me and a handful of other multiple sclerosis bloggers to Orlando for an MS summit on brain preservation, the focus of their new website The MS MindShift. (Full disclosure, Celgene paid for the conference and all travel, thoughts here are my own.) Interestingly, their new oral MS drug ozanimod, still awaiting FDA-approval, was never mentioned once. If you haven’t heard of it, you likely will, as results from a study were just released this week showing that patients treated with ozanimod did indeed lose less cortical grey matter volume than did those treated with another MS therapy (Avonex in this case). The conference was enlightening, but the beer adventure afterward became the story.

Dave and Nicole from My New Normals
Let me set the stage. After saying our good-byes to Nicole and Tommy Lemelle (My New Normals), Caroline Craven (The Girl With MS) and her partner Tim, Ashley Ringstaff and Patty Long, the remaining misfits—Cheryl Hile and husband Brian along with Jodi Johnson (Edible Monster)—hatched a plan to go out to dinner. But first, Brian wanted to get a beer. At a special, out-of-the-way brewpub. My kinda guy! After my previous worldly beer escapades, which my wife Laura has always stunningly supported, how could I say no? How much trouble could we possibly get into? We were in Orlando, home of Walt Disney World, Legoland Florida, and Gatorland for Christ sakes! How I overlooked Orlando’s “CSI: The Experience” is beyond me (cue the intro scream, YEEEEAAAAHH, that you just have to listen to one more time). That oversight turned out to be prophetic.

Let me be clear: Brian, troublemaker-in-chief, chose the brewery. Not me. (I know, shocker.) He said it was .4 miles from our hotel. Until I got a text later from Cheryl saying it was more like a mile, along with the advice that we could take a bus. But handicap accessibility and public transportation are notoriously unreliable. And Jodi was using Bumblebee, her properly named yellow scooter. Since I can roll a mile and needed the exercise, especially with the tantalizing reward of a beer, I figured why not set off on foot and wheels. I love exploring!

After we gingerly crossed the train tracks in downtown Orlando, the mood shifted. And then shortly after we went under the highway overpass, the mood shifted further. Laura’s Spidey sense started tingling. I was telling her that it was just dehydration and she needed a pint of porter. She protested.

“I think we are in the hood,” she said. I started to explain that dilapidated buildings, cars on blocks, and sketchy people aimlessly lingering does not qualify as “the hood,” when a stranger interrupted us.

“You guys lost?” We did appear to be a misplaced motley crew with one person in a yellow wheelchair, one on a yellow scooter, and one trying to keep her composure.

“Nope,” I proudly said. “We are going to meet friends at a brewpub!”

“Ohh-kay,” he said. “But you do realize you are in the middle of the hood. Right?”

Eye daggers more deadly than any weapon wielded on Game of Thrones were thrown my way. Even Arya with her dragonglass and Valyrian steel would have been no match for Laura’s optical stabbers.

“Don’t worry, I’ll walk with you,” said our new protector, who now reminded me of GOT's The Hound. “Sometimes getting around the Parramore is like playing a video game where you’ve got to shoot away the pimps, hoes, beggars and drug dealers—pew, pew, pew!” His fingers were firing in all directions. My God.

At this point we all cautiously and quickly got out our phones to see how far we still had to go. Far enough. But now turning around seemed folly, since we were no longer on the fringes, but smack dab in the middle of the hood. Thankfully I didn’t look up Parramore on Urban Dictionary until I was safely at home and under the covers of my own bed, where my phone glowed the ominous definition….

“Parramore: 1) the worst hood in Orlando, even worse than Pine Hills (“don't come into Parramore unless you wanna get glocked down”). 2) The most notorious neighborhood in Orlando, aka the 407 (“Parramore, the only place in O-Town with more stray cats and glocks than people”).

Since at the time I didn’t realize being Glock-less in the Parramore was unwise, I trusted in the one weapon we did have: two rolling gimps. If we tilted our heads just so, flailed our arms just so, and let loose a little drool, we might be able to convince the unawares that we were highly contagious, and in no way did any hoodlum want to catch this infectious action. No siree. Alternatively, I considered doling out my phone and wallet (minus beer money) to the first passerby just to get it over with.

Soon The Hound had to peel off, but he told us with deep care that we were getting close, and that we would probably make it. And then like a castle cutting through the mist, its drawbridge lowered, Broken Strings Brewery appeared. Appropriately, Brian and Cheryl were sitting beneath a huge middle finger (I was thinking we were all screwed), which became even more appropriate after we found out they had no had no porters or stouts or dark beers of any kind—Laura’s preference (now I was doubly screwed). 

But we were there. In one piece. With all of our material possessions. Enjoying beer. So you could say that it was a mighty fine way to end the day, learning how to preserve our brains in the morning and how to dodge pimps in the afternoon. Only now we had a new problem: it was the end of the day, the sun was setting, and we were in a bar. And still in the hood. Walking back was not an option and, with the possible exception of an Uber RV, no one ride could handle multiple rolling aids. The city bus beckoned. And it was coming!

With Bumblebee, Jodi points out who'll get mugged first.
And then it was going. Our MS rears could not get outside in time. So now we were outside waiting for another bus. Without beer. At dusk. In the hood. Presented with the gift of extra time to panic, I sized up the situation the way one might size up what to do when a bear charges a group of people. Who will get mauled first? Cheryl ran a marathon on all seven continents in a single year, the first MSer to ever do so and I am part of her fan club, which means she’s more than an order of magnitude faster than I am. And she has endurance. Her husband Brian (due to his love of beer, I am also in his fan club) needs to keep up with her, so he’s quick enough. Laura runs, fast, and is smart. Jodi’s scooter scoots along a steady brisk pace. And then there’s me, with my manual wheelchair, where a curb cut can slow my progress to a crawl. It was no contest. Heck, Omar (re: The Wire) could take me down with a mere sideways glance.

While I was in the middle of preparing my final remarks—something like, “save yourself, go on without me” so that it may spawn a meme—it dawned on me that people reading my obit might mistake my untimely demise in Parramore for a freak mosh-pit accident (so Dave-like, they’d say) at a Paramore concert. But then another bus rolled up and out flopped a ramp—it was fully accessible! It was a pleasant surprise to us and apparently an even bigger surprise to the passengers, as many had to move to accommodate a pair of disabled riders. I even overheard one exasperated passenger exclaim “There’s two of ’em?!”

Not this Paramore.
As we headed back to the relative safety of downtown, our epic adventure winding down, I got to thinking. The Parramore wasn’t such a bad place. Struggling, yes, but the people we met were nice. A new soccer stadium in the area hopefully will help turn around some of the negative perceptions of the community, which has only received bad press, from Even Breathing Is a Risk in One of Orlando’s Poorest Neighborhoods to a piece titled The Rise and Fall of an African American Inner City: The Case of Parramore, Orlando.

We struggle with our health issues. These residents struggle with life. But we all soldier on, trying not to feel sorry for ourselves, making the best of our relative situations. It’s all we can do, hoping and believing that one day our tide is going to turn. And if it maybe doesn’t? We try to drown out that nonsense. For we are a merry band of optimistic misfits. And we will soldier on. We will give our challenges the full Johnny Cash.

Our trusty brewpub finders Cheryl and Brian dinged the dinger on the bus. Our stop. Curious. The bus stop was directly under the highway overpass, dividing downtown and Parramore. We trundled off the bus en masse, and as it belched its way into the skyscrapers of Orlando, a wistful haze started settling over me now that our odyssey was moments from concluding. We turned to roll downtown. But wait! At the end of our sidewalk where there was a curb cut were orange barrels and safety tape. Closed. So we turned around and spied the other end exiting toward Parramore. More orange barrels and more tape. We were in the middle of a closed sidewalk with no escape. The adventure was going to continue! Perfect.


2019-04-18

When a Friend with MS Dies


On March 7, after 30 years of living with multiple sclerosis, my friend Michael McDaniel passed away at the age of 55. News of anyone being taken with the disease many of us share, especially at such a young age, is disturbing, uncomfortable, frightening. Don’t let it be.

Life with a serious health issue, as is death, is unpredictable. But that’s also just life. Don’t forget that. I got a note the other day from a gentleman recently diagnosed with ALS. He joined the optimistic misfits at ActiveMSers because he doesn’t plan to bemoan his diagnosis and fold up the tent. No.

Instead of frittering away valuable time worrying about what might happen (or even what will likely happen), pause and reframe those thoughts. Pause and let today wash over you. Every day bathe in the now. Let the now cleanse the uncertainties of tomorrow.

No, it isn’t going to be easy. I’ve lost friends and family to car accidents, to cancer, to mental health issues, to drug overdoses, and to MS. No matter the age, no matter the cause, it’s never easy. Instead I choose to celebrate each day—the sunrises, the sunsets. I choose to live the biggest, richest, fullest life I can. In the face of daunting health challenges, I choose. I choose.

This is what I said at Mike’s celebration of life in Albuquerque last month. Writing and speaking these words helped heal a piece of me, and hopefully helped his friends and family better navigate this difficult time. Perhaps it will aid in your journey, too.

This is my final solid to Mike.

(For his celebration of life in Phoenix last weekend, which I was unable to attend, the family asked for a video of my eulogy, which I provided. If you prefer to watch rather than read, you can view it here: https://youtu.be/qLmohcOBQDM)

Mike McDaniel Eulogy

Good morning. I’m Dave Bexfield. To understand just how much Mike meant to me, I need to tell you a little about myself. When I was diagnosed with multiple sclerosis 13 years ago, I also started a website called ActiveMSers. Today, it is one of the longest-running MS blogs on the internet with thousands and thousands of followers—I have countless MS friends all over the world. But I only had one best MS friend. And that was Mike McDaniel.

We met shortly after I was diagnosed at a dinner arranged by friends. At the time, I didn’t know many MSers and as a newly diagnosed patient, I was not-so-subtly playing the role of a deer. A deer staring into headlights, frozen.

But then there was Mike, telling me how he carried his daughter Madison on his shoulders. To prove that he could… and, apparently, to keep his wife Rachel on the cusp of cardiac arrest. Okay, I thought. That’s one hell of a streak of stubborn. I like this guy. As long as he didn’t live in a distant town, maybe we could be friends. Turns out he lived closer to me than I could have ever imagined—his house was only a few blocks from mine.

So began our 13-year friendship. And like any friendship, I’d occasionally drive him crazy, and he’d occasionally drive me crazy. But we learned from each other. Especially at the gym. I urged him to work out harder, faster, longer. He taught me, well, the opposite. As much as exercising was good for our health, socializing was healthy for our well-being. And when it came to the art of socializing, Mike had few peers.

Everyone at the gym, it seems, knew him. In the middle of my sets lifting, I’d hear echoes of “Mike!” and, sure enough, another in-depth conversation between Mike and gym-goer cum friend would ensue. His friendliness was infectious. I used to playfully interrupt them, urging the chatterboxes to get back to working out, but over time I realized that that those moments between sets were far more important than eking out an extra rep or two on the shoulder press.

One of my favorite Mike stories happened during an evening when my wife and I invited Mike and Rachel over for a unique dinner. It was going to be unique because the two gimpy guys were going to make a feast all by their lonesome. And by feast, I’m talking a five-ingredient black bean soup, a favorite recipe of mine because it is so easy and so fast—30 minutes tops.

So, an hour-and-a-half later, we were sitting down to a “gourmet” meal. We did it! I had taught Mike exactly how to make it, even initially letting him take charge of cutting the onion with a huge, very sharp chef’s knife. But after seeing his eyes grow into saucers and imagining Rachel’s disappointment with being married to a 9-fingered husband, I took on the knifing duties. We were so proud of our accomplishment, and I was thinking, Dang, Mike might even start cooking this simple soup for his family. Teach a man to fish, right? At the end of the meal he pulled me aside.

“Dave, I’ve got to tell you something.”

I almost stopped him right there. I knew how good it felt to accomplish a difficult task. He didn’t need to thank me. This was my gift to him for being such a great friend. I started reaching around to pat myself on the back when he finished his thought.

“Dave, I hate beans….”

As we both moved up the disability chart, and I moved out of the neighborhood, getting together became more challenging. We relied more on phone calls, but that just wasn’t the same. So we hatched a plan. We were going to go on an epic adventure. Two gimpy guys. No caregivers. A Thelma and Louise outing—without the driving off a cliff stuff or Brad Pitt. However there were a few problems.

Since neither of us could walk well, we were kind of stuck in the car. And because of MS and bathroom issues, we couldn’t be gone for more than a couple of hours in the event Mother Nature called. So the plan came together sort of by default. We were going out to lunch! At a fast-food restaurant with a drive-thru. And we were going to eat in the car…. Okay, so maybe it wasn’t a movie-worthy adventure, but eating Popeye’s—at a local park, watching the ducks do things ducks do—was unforgettable.

The last time we talked, our conversation steered, as it often did, to our families. Mike was unbelievably smitten with Rachel, and unbelievably proud of Maddie. Maddie was driving now, which worried him. But he was most worried about Rachel. He knew her happiness was tied to his health… and he had no more answers in that department. He wanted to give her more time. She earned it. She deserved it. He loved her so much. But he knew what lie ahead.

We wrapped up with our standard goodbye… “So how are you doing, Bexfield?” “Fantastic, Mike. As always. And how are you doing, McDaniel?” His voice was weak from the MS, but right then it got stronger. Defiant. “I’m good, real good.”

Telling big, fat lies about our health always made us laugh through our grimaces. But, you should know it wasn’t really a lie. No. I’ll forever be fantastic. And know that Mike, wherever he is, will forever be good. Real good.

2019-02-03

Misadventures in MS



You would have been sooo proud of me. See, this past fall, I was out using my off-road wheelchair exploring the trails near my house. Dirt trails. Clogged with leaves. And tree roots. And precipitous drop-offs on either side. Technically not quite cliffs or chasms—only four or five feet at most—but for someone using a wheelchair it was basically SKIRTING DEATH. And I was doing it with aplomb, with little assist from Laura. Until we reached a crossroads. OF DEATH.

To the right, a gorge (aka, small ditch). To the left, a steep ravine (aka, small sloped drop-off). And across the path lay an impassable impediment (aka, large tree root). To advance, the only choice was to skirt the tree root OF DEATH to the left, placing my wheelchair dangerously off-camber on the lip of the ravine OF DEATH to avoid the gorge OF DEATH on the right. Given my history, we know how this would ordinarily play out. But I was a changed man.

I was newly older (50) and presumably newly wiser (jesus, I made it to 50). Plus, I was flush with new-found knowledge that some followers of ActiveMSers subscribe to the WWDD (What Would Dave Do) mantra. I certainly did not want to encourage my virtual friends to do anything moronic that could result in an unplanned ER visit. So I did the unthinkable. I turned to Laura to tell her that it was time to turn around. That maybe we should exercise caution. Me.

“Oh hells yeah, we totally got this” was all I was able to make out from Laura as my wheelchair lurched forward like it was a football sled being propelled by the front four of the ’85 Chicago Bears… being chased by bees. Before I could fully express my uncertainty about this rash, Dave-like decision, we were already at Mach 2 and fully committed. What could possibly go wrong?

Now I’m always one to explore possibilities. I’m just a curious dude. But the bottom of a ravine OF DEATH is not an area that ranks highly on areas I’d like to explore. And yet, as I was looking up admiring the trees—as I was sliding down into the ravine OF DEATH on my back—it dawned on me that I shouldn’t prejudge. Once I took stock of my new surroundings, I was relieved to discover how wrong I was. It was just a regular ravine, as I was still alive. And apparently, unbelievably, uninjured. No bones sticking out, gashes in flesh, internal injuries that would require a helicopter evacuation and immediate surgery. Nothing. Just that I was now at the bottom of a ravine. On my back.

I was relieved. Oh wait, bad choice of words. Because panicking when one has multiple sclerosis can conjure up the need to relieve oneself. So naturally I now had to pee. And poop. And I was at the bottom of a ravine. On my back.

Thankfully, by the grace of all that is holy, a jogger came by at that moment. We were saved! He looked down at the woman tending to her disabled husband and his tipped over wheelchair, paused briefly, then realized either a) he was dropping out of the cardio zone or b) the frozen pizza he was cooking in the oven back at home was going to burn and light the house on fire. He jogged on. Meanwhile, I was still at the bottom of a ravine. Still on my back. And frustratingly out of my cardio zone.

Then Barbara, a neighbor, happened to stroll up, or stroll down as the case may be.

“Looks like you could use some help.” She was keenly observant. The wheelchair was quickly righted. With Barbara pushing, Laura pulling, and me cranking, we crested the ravine on the first try. It was almost too easy. Even my bathroom issues had dissipated.

“Again!” I hollered. The women were not amused. Is there a lesson in all of this, other than watching your purported caregiver—who predicts 99.9% of your moves correctly—like a hawk? I mean, other than to avoid ravines, both ravines OF DEATH or pedestrian ravines. Absolutely.

When you are managing a challenging disease or disability, there are undoubtedly going to be times when you are going to end up at a bottom of a ravine. On your back. Spoiler alert: that’s going to suck. (And you might have to pee.) But instead of bemoaning your fate, take a moment between curses to enjoy the unplanned view. And take stock of all the good in your life. Then dust yourself off and make your way out of that ravine—however slowly. You can do this. You can so do this.