When Adapting Fails, Epically

Oh, Dave. Dave, Dave, Dave. That’s sort of what the voice in my head was saying, along with maybe a few curse words, when I was trying to pee … in public, in broad daylight, in front of dozens of people. Let me explain.

Multiple sclerosis forces those with the disease to adapt as it progresses, to bob and weave around new disabilities, learning new tricks. Recently I had come up with a brilliant one to overcome a common and vexing problem. How to pee on long bike rides when a bathroom wasn’t an option.

In the past, I did what guys do on long rides: find a tree. But as my legs have gotten weaker in the dozen years I’ve had this disease, I’ve had to make changes. Avoid morning rides when my bladder tends to be most feisty, limit cycling excursions to a couple hours, and wear adult protection for emergencies (just in case). This worked okay-ish. But that MS potty pressure—and if you have this disease you almost certainly know what I am talking about—wasn’t going to go away and trying to jump off my trike when the urgency flag was flying had been getting harder, especially with an overheated body due to heavy exercise. What to do?

What my grandpa did when he needed a bathroom break flying B-17s in WWII: pee in a tube. Brilliant! Why hadn’t I thought of that earlier? A quick shopping spree on Amazon got me totally set up: condom catheter and tubing. (Yes, I realize this is a guy solution, but the SHEWEE does exist for women, although for obvious reasons I have not tested this.)

I know what you are thinking. What could go wrong? Other than EVERYTHING. But you would be wrong. It was stealthy, comfortable, and totally stress reducing. Indeed, my maiden voyage was going so well that at one point on the trail I thought I was in a dreamy fairy tale. Running into Rapunzel—yes that Rapunzel, the one with the long hair—will do that to you. Surreal doesn’t begin to describe the experience. (And yes, I did not miss the opportunity to make a lame joke about how long it took to wash her tresses.)

But minutes after our brief encounter, things turned, ahem, hairy. I had to go. Worse, my urgency situation had become rather, er, tangled. I had tucked the tubing deep into my shorts and extracting it meant some rather noticeable (and panicked) hunting in the groin area. Worse, I had just pulled into the MOST public section of the trail. On arguably the NICEST Sunday of the year. Lordy. Bikers, joggers, walkers, dog walkers, picnickers, kids, grandkids, great grandkids, people wandering aimlessly in my immediate vicinity for no discernable reason whatsoever, the works.

Deep breath, Dave. The now-unkinked tube is rather hidden, Dave. No one is looking, Dave, especially with you looking totally nonchalant drinking out of your water bottle, which would explain any puddling. Dave, just channel the theme song from another fairy tale, Frozen. Let it go, let it go, can’t hold it back anymore, let it go. Sing with me now, Dave, you know the lyrics.

Okay, it was a good idea in theory. Stage fright, performance anxiety, tinkle trepidation, call it what it you want. “It looks like you spilled a tiny bit of your Caprisun after you tried to jam in the straw and it broke.” Laura was unimpressed with my efforts and was tired of waiting for the crowds to dissipate given that it was midafternoon and hours from nightfall, so my maiden voyage ended with only limited success.

I’ll try again. I’ll keep adapting. When you have a disease like multiple sclerosis, you have to keep adapting, coming up with new solutions when old ones no longer work. That’s life with a disease. But if you see me pulled off on the side of the bike trail sipping water and looking forlornly into the distance as if I was trying to remember the words to an Idina Menzel song, maaaybe don’t stop to say hi.

When Life with MS Gets Heavy

This isn’t a blog post for newbies. Or for those who don’t want to be reminded about what multiple sclerosis can do to our bodies. Or for those who want a typical Dave happy-go-lucky essay that will make you smile and escape and maybe make you laugh out loud. No, it’s not that. (I can hear the hissing disappointment now.) But after I read a reply to a post I made on Facebook the other day, what I am writing needs to be said. Sorry.

Recently a newer MS drug, Zinbryta, was voluntarily pulled off the market due to serious safety concerns. The response from some in the MS community was predictable. “Exactly why I don't take any of the MS drugs.” Another chimed in. “This is the problem with all of these drugs.” And so on, and so on. One even wrote that her husband got a brain infection (from another drug, apparently one of the 16 worldwide who tragically suffered that fate), and proceeded to warn everyone to be VERY SCARED about MS medications.

Life has risks. Jesus, just stepping out your front door has risks. You could trip over the step, lightning could strike you, a car could careen into you, and then a power pole could be felled by beavers and crush you. Or you could narrowly avoid a power pole felled by beavers only to step on the resulting live wire and get shocked to death while thinking, Whew, lucky that power pole didn’t hit me—stupid beavers.

Likewise, all drugs have potentially serious side effects. All drugs. As do vitamins. Yeah, vitamins. As do dietary supplements. Indeed, the New England Journal of Medicine reports that adverse events from supplements are responsible for an average of about 23,000 emergency department visits per year.

But “pick your poison” anecdotes about MS drugs and their potential side effects, no matter how rare or mild, somehow often trump and subsequently bury all benefits these drugs can deliver to people with MS. And that’s a big problem. Because the potential side effects from our shared disease can be devastating. And this is where it gets heavy. I’ve lost friends to this disease. And I am powerless to help my friends who have enormous challenges daily, hourly.

Recently, Jacob told me about the last meal he ever ate—he now can only taste food with his tongue. He can’t swallow. Or walk. Or use his arms. Or talk. He has a four-year-old daughter, an amazing wife, daily caregivers, and a streak of stubborn like my own. Just five years ago we were laughing and sharing a pint (top photo). And now. Side effects from drugs didn’t make him like this, MS did. The same goes for my blogger buds Marc (Wheelchair Kamikaze) and Nicole (My New Normals), and too many friends I’ve made on ActiveMSers. For too many people I care about, every day is climbing a mountain. Every. Day.

And sometimes, sadly, those mountains get too steep, as this deeply personal and touching story, An Instinct for Kindness by Chris Larner on BBC Radio (link expires March 30, 2018) relays about an MSer’s final journey as told by her former husband. It’s crushing, disturbing, and eye opening. Allyson's MS challenges are not uncommon (creeping disability) and her attempted solutions are not uncommon (drugs, diets, magnets, anything). She finally makes the decision to go to Switzerland, and I can’t blame her.

An Instinct for Kindness on BBC Radio

Her passing, and the mountains looming before friends, might make you feel hopeless to the challenges this disease presents. But wait. Through their stories and struggles, they might be able to help you. Help you not to underestimate MS.

It’s easy to hold on to the idea that the MS you have isn’t going to affect you like it affects others. (That might ultimately be true.) And thinking that way is not just you, and it’s not just people with MS. That trap is set for anyone with health issues, even Steve Jobs, who many considered a genius. He thought that same way when he avoided traditional treatment for his cancer for nearly a year. That’s human. Unfortunately, that’s also hubris.

There is no question bad shit could still go down even if you do treat your MS with the drugs that are available. Yes, there is a chance the drugs themselves could harm you, too—don’t be blind to that. But far more likely: it’s going to be the disease that wreaks the most havoc. Take that seriously. And also take seriously that this disease is most treatable in its early stages, not when it is progressive and rumbling like a runaway train.

I am not trying to scare you. Really, I’m not. I just don’t want you to conflate the risks of a taking a disease modifying therapy with the risks of not taking one. To fall prey to the idea that taking any of the current MS drugs is worse than the disease itself. For the love of God, no. Just, no. They are not even remotely the same, and this general guide on medical risk tries to explain that. And if that sinks in today, don’t thank me. Thank Allyson, Jakob, Marc, Nicole and, to borrow a phrase from Marc, the other incredible souls with this disease who inspire others.

Ambushing Researchers

I’ve been running ActiveMSers for a dozen years now, and while I’ve been to many MS summits and events, I’d never been to a full-on research conference. That all changed with a recent visit to San Diego where ACTRIMS, the Americas Committee for Treatment and Research in Multiple Sclerosis, was being held. It was as advertised: some 1,000 acclaimed MS researchers and clinicians at the top of their game. A restaurant nearby that has a wall with some 1,000 piranha skulls that was just too cool not to take a picture of and stick in this blog. And a dude named Dave. Oh gawd.

Now I didn’t get here because researchers were eager to have a rabble-rousing amateur comedian/MSer harassing them. No, that was Actelion, a pharmaceutical company—recently acquired by Janssen—preparing to enter the MS space with a novel combination treatment (full disclosure: they sponsored my trip and provided a small honorarium). They brought out me and a handful of other well-known MS advocates to pick our brains and get input on their newly launched clinical trial, POINT.

Without going into great detail—because, well, if I told you, I’d have to, you know—POINT is a placebo-controlled Phase 3 clinical trial looking at adding on the oral drug ponesimod to patients currently taking Tecfidera. Since I am not relapse remitting and don’t take Tec, I have no skin in this game. But a month ago by chance (before Actelion even talked to me), I was chatting with my neuro, himself a renown MS researcher, about any exciting MS research on the near horizon. And he mentioned this study specifically. He was that excited about its prospects and the potential power of this combination therapy in MS. So for Tecfidera users interested in furthering research trials, this may be a treatment that could supercharge your MS therapy. Details and eligibility criteria are here.

While Actelion had the “pleasure” of experiencing my humor for hours on end, researchers were not left totally in the lurch, in some vast, empty, Dave-free void. I made sure of that fact the moment my Uber pulled up to the hotel where the meeting was being held, when I ran into a colleague and leading researcher from iConquerMS who recognized me immediately. (An aside, I volunteer for iConquerMS and they are the leading patient-powered MS research network in the world. We need your participation in critical patient surveys to uncover patterns that could lead to a cure for MS. Here’s how you can help.)

Then, using my honed inner radar and expert intuition, I skipped checking in and headed straight into the unmistakable den of MS researchers preparing for an intense, 3-day conference: the bar. My, how convenient, since a beverage sounded good to me, too. But I made a critical error. My wheelchair lacks a cup holder. I was left with a Sophie’s Choice. Sip a Manhattan and Tweet about how I almost met world-renown researchers. Or forgo the beverage and accost every table, reminding each and everyone involved in MS research to get a move on and cure this thing already.

By the time I was finished making my rounds, it was well past midnight, I hadn’t gotten up to my room yet (!!!), and I was darn thirsty. But I learned a lot a lot. Too much to put in a little blog post. My biggest takeaway was the passion and surprising giddiness about the future of multiple sclerosis research. To a fault, all accosted were not only happy to talk to me (as if they had a choice), but also genuinely excited about the progress, and I’m pretty sure it wasn’t the liquor talking. I got the honest sense that this isn’t just a paycheck to them, and many had deeply personal stories about how MS has affected their lives, their families.

When I asked one researcher what message I should take back to my readers, she looked at me with a dead seriousness: “There is hope. Tell them there really, really is hope. I see it. I absolutely see it.”

I could tell you about the conference and some of the interesting talks (including one about HSCT and the trial I participated in specifically). I could tell you about randomly rolling up to people to pick their brains while I conveniently filled them in on ActiveMSers. And I could tell you about how I even harassed one of the keynote speakers moments before his big lecture. (“Boy, I would be hate to be the guy talking to a crowd this huuuge—oh wait, that’s going to be YOU. Oh, jeeze, never mind, you are going to slay. Don’t be nervous.”)

But I just want to tell you that in our world of multiple sclerosis there is hope. And I saw it firsthand.

Sick, With MS

I’m sick, with multiple sclerosis. The comma is intentional. I have MS and I have a cold. Typing is no fun, sitting up is no fun, and trying to be funny is no fun. Fortunately, according to Laura, I don’t have to try to be funny. I just wake up that way with a cowlick. (An aside, when I was younger I used to warn my haircutter that I had colic, which puzzled the hell out of them when they started to cut this teenager’s hair. But that’s how my grandma pronounced “cowlick,” and I didn’t know any better.)

The problem with getting sick when you have MS is that it gets the immune system revving quickly into redline territory. The flu? Let’s put that into the Fight Club category. The first rule: you don’t talk about it. Hell, these days I can’t even think about it. When I got the flu shot a few months ago—which apparently is only 10 percent effective this season—I could not move for six hours (kinda scary) and was down for nearly a day. The real flu? We’re talking ambulance, ER, and a weeklong hospital stay. So let’s not talk about that, shall we?

For me, temperature is everything. My body freaks out like that young kid who discovered that Darth Vader was Luke’s father. Or that baby who lost it over a monkey toy. Lost. It. So the other day, when I felt my cold coming on and my muscles starting to stiffen, I began to, well, FREAK OUT. So I got on the horn asap with primary care’s nurse. This is basically how it went.

Me: My wife is sick and I think I might be getting sick. And I have MS. My body is starting to rebel. 

Nurse: Okay, describe your symptoms. 

Me: I have a slight cough and my temperature went up from 97 to 98.6 degrees.

Nurse: Go on. 

Me: No, that’s all. (Muffled cough.) A cough, like that. No phlegm or anything, just a cough. 

Nurse: Well, I can’t triage you, as these symptoms, well, I can’t even input them into my system. A mild cough and normal temperature fall out of that range, sir.

With  a bonkers flu season, masks should be mandatory.

As I was talking to the nurse, I realized what an idiot I sounded like. I certainly was going to be a topic of conversation at Happy Hour that night. All I could do was wait for the hammer to fall. Or the Dave to fall. Just a degree and a half rise in body temperature—probably unnoticeable in most humans—meant I needed Laura’s help to get off the couch, the bed, the toilet. A comfort height toilet with grab bars, no less! We brought in my wheelchair from the garage, unboxed the bedside commode I purchased last year for just such an occasion (oh joy), and waited. One more tick up in temperature and I’d be joking with the EMTs as they lugged my lifeless body into the awaiting ambulance. And by lifeless, I mean rigor mortis. My spasticity already was raging so badly my legs took huge amounts of effort to bend. If my temp went over 100 degrees, I might be mistaken for a piece a plywood, a potentially disastrous combination if I was living in Florida during hurricane preparations. But I suppose getting boarded over a window might distract me from my illness, a bonus.

Technically squawking (not chirping) cranes.

Six days after I started writing this blog (do the time-lapse, fast forward thing in your head), thankfully, things have simmered down. When I checked my temperature yesterday morning it was a pleasant 96.8, the birds were chirping, and a light exercise session with cardio and stretching was in store. Despite temperatures peaking at a blistering 99.3 degrees, I never resorted to the portable potty, which I thought at the time would make Laura happy. But in retrospect, that stubbornness was a hollow victory. Two hard falls early on meant using my wheelchair full time, and now I plan to see the doc to make sure I didn’t mess up my knee (I’m optimistic I didn’t, as there is no swelling or pain).

We all hate getting sick. But getting sick with an autoimmune disease is a different beast. This is how I handled it. Better than piss-poor, but definitely not that well. How do you all cope? Any survival tricks? Post them below! (But please, remember the Fight Club rule and avoid using the three-letter F word. Just saying you were “sick” is fine.) 

This Is Not Spinal Tap

Getting diagnosed with multiple sclerosis usually takes time. For some, it takes years, even decades. For others it might take months waiting for signs of progression before a neurologist will commit to a diagnosis and start treatment. But recent research has found that the earlier treatment is started—as of this writing there are 13 approved disease-modifying treatments in the US for MS—the better. “Real-world data … confirm the effectiveness of the early treatment strategy in delaying the accumulation of irreversible disability in RRMS patients,” said the October 2017 study.

Yes, “irreversible disability” is as bad as it sounds. You don’t want that. You really don’t want that. But getting in the way of prompt treatment is the fuzziness of an MS diagnosis, a methodical and laborious process of elimination.

So last year when I heard IQuity (pronounced IQ-itty, rhymes with equity), a science technology company out of Nashville, TN, had developed a reliable blood test for multiple sclerosis, I was stoked … and suspect. There are many “blood test” companies out there that will diagnose you with whatever you want, just without scientific backing (“our Lyme’s Disease test is so sensitive it could detect the disease in a caterpillar”). Great! But if no medical professional recognizes the results, what good does it do you?

Fast forward a year.

Multiple Sclerosis Blood Test

IQuity’s RNA blood test, which relies on a number of markers and sophisticated algorithms, reports a 90+ percent accuracy rate in detecting likely MS, considerably more accurate than a standard lumbar puncture that looks for the presence of oligoclonal banding in spinal fluid. The test, IsolateMS, took over 9 years to develop using blood donated by scores of those with MS (including iConquerMS volunteers).

To help get the word out, IQuity sponsored a trip to Nashville this past weekend for ten MS bloggers including me. You’ll likely recognize many of the names, some dear friends of mine and some I’ve been waiting years to meet in person: 

Caroline Craven (www.GirlWithMS.com), 

Kathy Reagan Young (www.FUMSnow.com), 

Kim Standard (www.StuffCouldAlwaysBeWorse.blogspot.com), 

Cat Stappas (www.ItsOnlyABruise.com), 

Beth Prystowsky (www.ModernDayMS.com), 

Stephanie Buxhoeveden (www.JustKeepSmyelin.com), 

Matt Cavallo (www.MattCavallo.com), 

Dan and Jennifer Digmann (www.DanandJenniferDigmann.com), 

and Laura Kolaczkowski (www.insidemystory.com). 

(Today, I’m proud to say, they are all my buds.)

Now IQuity could have put on a dog and pony show in Music City, but instead CEO Dr. Chase Spurlock made a short presentation, answered questions, and had MS experts—from neurologists to physical therapists—speak to the future of this disease.

Surprisingly, the take-away was not about blood tests and markers, but about the importance of exercise and its potentially neuroprotective role, particularly in hard-to-treat progressive MS. Indeed, I got so excited—as did my bladder—that I had to briefly leave the presentation on more than one occasion, always 10 minutes before a break, which naturally became a running joke. “And in conclusion, that’s why exercise is so critical in MS… welcome back, Dave.”

Diagnosing Multiple Sclerosis

Diagnosing this disease will never be 100% clear. But IsolateMS—in addition to the clinical exam, MRI, and other tests—could present neurologists with another valuable diagnostic tool and one that is less invasive (or, let’s be honest, freaky) than a spinal tap to look for banding.

Speaking of spinal taps and bands, when it comes to more accurately diagnosing MS, one might say IQuity has turned it up to 11. If you don’t get the reference, the conversation with Nigel and Marty from This Is Spinal Tap is below. And okay, maybe IQuity has a touch more credibility than Nigel, but run with me here.

Nigel Tufnel: The numbers all go to eleven. Look, right across the board, eleven, eleven, eleven and... Marty DiBergi: Oh, I see. And most amps go up to ten? Nigel Tufnel: Exactly. Marty DiBergi: Does that mean it's louder? Is it any louder? Nigel Tufnel: Well, it's one louder, isn't it? It's not ten. You see, most blokes, you know, will be playing at ten. You're on ten here, all the way up, all the way up, all the way up, you're on ten on your guitar. Where can you go from there? Where? Marty DiBergi: I don't know. Nigel Tufnel: Nowhere. Exactly. What we do is, if we need that extra push over the cliff, you know what we do? Marty DiBergi: Put it up to eleven. Nigel Tufnel: Eleven. Exactly. One louder. Marty DiBergi: Why don't you just make ten louder and make ten be the top number and make that a little louder? Nigel Tufnel: [pause] These go to eleven.

If IQuity has indeed turned it up to 11, how then can our future brothers and sisters in MS limbo get this test? (And, perhaps, one day you, as IQuity is working on another test to help determine if a DMT is working.) Talk to your provider and neuro to let them know it even exists. At this point, health insurance companies are reluctant to pay for the test (currently over $1,000), but with enough interested voices, that tide will change and IsolateMS will become part of the multiple sclerosis diagnosis landscape. And, God willing, any mention of spinal taps and bands, at least when it comes to MS, will gradually fade into distant memory.

Change of Plans

After I sprinted face-first into a tree playing kickball in 7th grade, a few things immediately ran through my twelve-year-old brain. One, that friggin hurt. Two, maybe I shouldn’t have just lectured my teammates to try harder to catch pop flies in my tree-littered front yard. And three, my future as an international spy was over.

As blood from my lower lip was staining my shirt at an alarming pace, my mom tried to calm me down. But it’s hard to calm down when your life’s career plan just careened off a cliff. (And have you noticed that one always “careens off a cliff” never off a small ledge into a field of flowering poppies.) The hole in my lower lip needed stiches, multiple stitches. And as the doc was tugging needle and thread through my puffy face, he announced that, yes, it would leave a mark. A scar. I was distraught.

Based on my extensive middle-school knowledge of foreign espionage, nothing was worse for a future spy than a tell-tale, identifying scar on your face. Nothing. Granted, growing facial hair, aka a beard, would have solved the issue rather quickly, but facial hair was not yet on my radar at 12. Spying was. And, just as suddenly, was not. My future career opportunities, with the gnarly scar and all, now appeared to be winnowed to driving a school bus part-time or playing a masked cartoon character at Disneyland. Maybe Disney World.

I was mourning the loss of a future I thought for certain I was supposed to have, not unlike what happens when you get diagnosed with a (currently) incurable disease like multiple sclerosis. Everything gets fuzzy, hazy. Certainties become maybes, and maybes become wishful thinking.

Before I got diagnosed with multiple sclerosis, I had lots of plans, including one in particular: to snowboard until I was 80 years old. My favorite day of the year was the summer solstice, because that meant winter was coming, and this was years before Game of Thrones. I was a daily exerciser, not for my health, but to get ready for ski season. Working on balance, endurance, strength, and explosiveness, my body was always prepared when the flakes started to fall.

Okay, so I only made it to age 40. No, that wasn’t my plan—hell no. But plans change. In the game of life, plans always change. When life doesn’t go to plan, and health issues usually aren’t planned, it’s easy to wallow in sadness, frustration, fear, anger. There aren’t enough emoticons to convey the feelings that rush you when getting diagnosed with a disease. Besides it would max out your cell phone data package and drive your friends bonkers as they try to decipher a string of facial expressions only a crack international spy could decipher. Oh, the irony.

So getting diagnosed with MS (or insert your disease of choice here) means you have to draw up a new play in the huddle, on the fly. So what? Zig left instead of right. No, it wasn’t the original play call, but you can make it happen. Trust yourself and make it happen. Just watch out for the dang trees when you run your new route.

Virtually Inaccessible

I should have been tipped off when our Slovenian guide looked me at as if my head had just sprouted a glow-in-the-dark unicorn horn studded with bedazzled rhinestones perfectly placed by a unicorn horn bedazzler (as seen on TV, I’m guessing).  

“Yes, the cave eez technically wheelchair accessible,” she said, pronouncing each syllable of “technically” with intent. She tried to illustrate the steepness of the path through Postojna Caves with her hand. Her palm was a few degrees shy of vertical. Laura was thinking, clearly, it couldn’t be that steep. After all, there were people on our tour who did not appear to be mountaineers. Meanwhile, obviously, I was thinking one thing: game on.

At least the train was accessible.

Postojna Caves, a vast karst system, is one of the most popular tourist attractions in Slovenia. Tourists travel deep underground by train 3.5 kilometers, about an 8-minute ride, before reaching the 1.5-kilometer “accessible” walking trail. Their website boasts “wheelchair users friendly.” Of course I’m friendly. This should have been a flag, color red. And if I had bothered to vet the cave on TripAdvisor, I might have stumbled on the one-star review by a fellow wheelchair user with the headline “virtually inaccessible for handicapped.” Even so, my brain would have said, Virtually? So you’re sayin’ there’s a chance! Stupid, stupid, brain.

Indeed, the cave train was accessible, and the eight minutes were breathtaking as we zipped by stalactites, stalagmites, and all those other cool things you see in caves. But the whole breathtaking part took on an entirely new, literal meaning as we started our 1.5-km walk, er hike, er climb. Picture the polar opposite of ADA accessibility, or the steepest path one can walk without needing a rope. And a harness. Perhaps there was a reason I didn’t see any other wheelchair users on the trail. Of the 37 million tourists who have visited over the years, I imagine the total number of wheelchair users attempting the walking trail could fit on one train car.

Lovely switchbacks.

As Laura and I chugged up the first incline, a few things became immediately apparent. One, I would have to crank as hard I could. Two, Laura would have to push as hard as she could. And three, once we had momentum, other tourists better back the hell up because we were going to steamroll them. This technique worked, barely, as we reached the apex of that introductory hill, which exposed the full folly of our decision.

Our path then went straight down. Before going straight up again. And down again. Over and over for the next hour.

I’m not sure which part was more terrifying. The precipitous ups or the precipitous downs, where we both tried to keep the wheelchair from skidding out of control, ramming the safety railing, and launching me into a bed of very pointy stalagmites to meet my grisly doom like a James Bond villain.

Bug-eyed fellow tourists generously wanted to help the guy in the wheelchair with the unicorn horn. Some wanted to help push, others wanted to pull, while yet others took on the job of flagger, warning the throngs ahead with waving arms. It was a full-on team effort involving tourists from around the world. (I cannot tell you how many Japanese grandmothers we had to shoosh from trying to assist.)

Ah, the exit! Way, way down there.

We survived, but barely. And we sweat, a lot. It took maximum effort, indeed an Olympian effort, on both of our parts to explore Postojna. But was it worth it? Hell yes. We all know that there will be times when multiple sclerosis will have the upper hand, the final say, in life’s grand adventures. We have to, begrudgingly, accept that. But even when those MS hills appear impossibly steep, it doesn’t hurt to put on our unicorn horns and try to keep exploring the best we can.

Top photo courtesy Wikipedia by Ivan Ivankovic from Dubrovnik, Croatia.