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Essays Rare Diseases

Rocking The Boat

Even though my Mal de Debarquement Syndrome makes me seasick even on dry land, I took a multiday boat ride with my husband, and lived to tell the tale.

I was terrified of the boat–a 57-foot-long narrowboat that topped out at four miles per hour. Admittedly, it was hardly the stuff of wild adventure travel.

But I have Mal de Debarquement Syndrome (MdDS), a rare neurological issue that causes the sufferer to feel like they’re constantly floating, bouncing or walking on a trampoline. In most cases, it’s initiated by a cruise or some sort of travel. In other circumstances—like mine– the symptoms can come on spontaneously. Depending upon the severity, it can range from prohibitive to life-altering and disabling.

There’s no cure or remedy for it and patients are often told they just need to learn to live with the feeling of continual motion. The diagnosis can take a toll on your mental well-being, so support groups are key. The online group I belong to is a safe place where we share research, coping strategies, successes and struggles. The companionship is essential to us, as only we can understand the frustration, anxiety, and hopelessness that comes from having this baffling syndrome.

We’re constantly questioning different theories and treatments, but the one thing most of us agree upon is that we avoid all possible triggers. These include carnival rides, zip lining, big box stores with fluorescent lights and, most of all, boats. So how was it that I was about to spend a week living aboard one?

A view of me in the 57-foot-boat we took down the English canals.

All Hands On Deck

This past December, my husband turned 50 and there was just one thing he really wanted to do: a narrowboat trip on the Oxford Canal in England. Throughout England, there’s a vast canal network brought to life with long, skinny boats. Some people live on the canals year ‘round. Others rent them for a day or a week. Gliding down the canal at little more than walking pace, you hop on and off, using a windlass to open the locks and bridges.  You moor wherever you think you’d like to be for the night, and at night, a walk into town culminates in a meal and a pint at the local pub. In theory, this sounded like an amazing, fun adventure. But in my reality, I was terrified.

Not wanting to deny my husband the experience, I formulated a plan for the trip. First, we invited my 29-year-old niece along to help out with the crewing duties. She, along with my 12-year-old son, would take on the bulk of the physical work required to manage the boat. Second, we agreed that, if needed, I could disembark at any time and stay in a hotel without any sort of guilt trip or persuasion.

My niece’s help during the trip was invaluable.

Keeping Quiet

As most anyone with a chronic ailment will tell you, however, we learn to hide it. In the case of Mal de Debarquement, the same reactions can be tiresome:

“Oh, I had that once. I did some exercises and it went away.”

“You still have that? Maybe you should go to a shrink.”

And everyone’s favorite: “Well, at least it’s not cancer.”

Let’s face it: no one wants to hear about how bad you feel. So we learn to keep things to ourselves.

It might have been difficult, but this kind of view is a once-in-a-lifetime experience.

On the first day of the trip, when I stood on the side of the canal at a lock, I desperately tried to understand the mechanisms of what was happening. My niece and son grasped the concept right away and they knew when to crank the paddles and when to open the gates. But with Mal de Debarquement, brain fog is a serious issue. With the world constantly in motion around you, your brain never shuts off and exhaustion and molasses brain quickly set in. I couldn’t grasp the concept of working the locks and it felt as if all cognitive function had completely shut off. It was frustrating and embarrassing and I hid in the bathroom to cry it out.

Fortunately, I’ve learned that sleep is good way to reset my brain when it’s overloaded. The next day, after a good night’s rest, I was able to explain that I was having some issues. The crew took over and I helped when I could. My husband got really good at steering the boat as close to the towpath as possible so I could hold on while getting off. And because there are no waves in the canal, the rocking of the boat at night was minimal. Yes, we all felt our sea legs when we visited the pubs at night, but it, fortunately, didn’t worsen my situation. At the locks, I had my niece explain what was going on—where the water needed to be and what the next steps were.

Besides the boat, I attempted a lot on the trip that normally I would avoid: the open-top bus tour, walking up to ten miles a day, wandering through museums with tall ceilings, jamming into the Tube during Rush Hour. Each little thing was, for me, a small victory. And when it comes to chronic illness, the small victories are everything.

Disability The Good Fight

How To Travel The World By Wheelchair

After a car accident left him a triple amputee, John Morris is on a mission to make travel accessible to anyone.

When John Morris was 23, both of his legs had to be amputated below the knee after a life-altering car accident. His right hand was amputated as well, necessitating that he move around in a powered wheelchair.

For many, this would end all dreams of travel. But John Morris isn’t most people.

Just six weeks after the surgery in which his legs were amputated, the Florida State graduate journeyed across the country with his sister to see his school’s football team play in Pasadena, California’s Rose Bowl.

Since then, Morris, now 28, has traveled all over the world, from Moscow’s Red Square to the Burj al Khalifa in Dubai, to Beijing. Eventually, he decided to launch a website, called Wheelchair Travel, to inspire other disabled individuals to go see the world.

Folks sat down with Morris to learn more about his love for travel, and his belief that travel can be accessible to anyone.

You moved around a lot at a young age, which you say on your website sparked your interest in travel. Can you tell us what makes travel so rewarding for you?

I love travel for all of the typical reasons—new sights, sounds, tastes, and experiences —but also for the opportunity to test the boundaries of my abilities as a person with a disability. Travel presents challenges and conundrums, exposes me to new people, cultures, and languages, and demands my attention. No two days are the same, and I love having a life of travel that is filled with unique experiences.

I love travel for all of the typical reasons…but also for the opportunity to test the boundaries of my abilities as a person with a disability.

You had a life-changing car accident in 2012, but you haven’t let it stop you from traveling. What are some of the biggest roadblocks disabled travelers deal with?

There will always be people in our lives who focus on what we can’t do, things that our disabilities make difficult or impossible. But accessible travel is possible… even for this triple amputee who relies on a wheelchair to get around. Convincing ourselves that travel is possible is easier said than done, though. And, when we do take that leap of faith, we’ll encounter obstacles that test our spirits. Broken elevators, sidewalks without curb ramps, hotel rooms that don’t meet our needs, inconsiderate people and discrimination: we’ll encounter all of those things at some point. But there is always an alternate path. When a street is blocked, we don’t stop and give up, we circle back and search for another way. That’s what makes every trip so rewarding—opportunities to overcome, to work out solutions and to prove ourselves as capable.

What motivated you to start your website and to develop it into a resource for traveling while using a wheelchair?

Information unlocks possibility. When I took my first trips as a wheelchair user, information on the disability travel process and the accessibility of destinations was lacking. I created WheelchairTravel.org to empower people like me with information about travel, allowing them to unlock new opportunities and open the world to themselves.

John Morris of WheelchairTravel.org is on a mission to make travel accessible to everyone.

What has been the biggest surprise for you since launching the website?

The demand for accessible travel information has been overwhelming. When I first began living my life from the seat of a wheelchair, I saw only a couple others like me each week. But, amazingly, when I launched the website, readership quickly grew to exceed even my wildest expectations. The truth is, nearly one in every five people have a disability, and we have the same dreams and desires as our able-bodied peers. Among those are travel and the opportunity to see things like the Great Wall of China, the Eiffel Tower and the Statue of Liberty. I am honored to show them how to make those dreams a reality.

The truth is, nearly one in every five people have a disability, and we have the same dreams and desires as our able-bodied peers. Among those are travel…

What’s some advice you give to disabled people who want to start traveling?

Never be afraid to ask for help. Normally, the people we turn to in times of need are our closest friends and family members. But there is a much bigger safety net that protects us all: our humanity. You will always find someone willing to help – whether you are the homeless guy living on the street, the tourist who needs directions, or the wheelchair user who ran out his wheelchair’s battery in Beijing, China. Yes, that last one was me – and my safety net was there. A total stranger pushed me and my wheelchair all the way back to my hotel. So, if you need help, don’t shy – ask! When we work together, we all achieve more.

What’s something that non-disabled people don’t realize about traveling while using a wheelchair?

Few of my able-bodied friends understand accessibility, which can make planning outings or trips difficult. Hail an Uber? Not with a power wheelchair. Restaurants? They don’t all have accessible entrances. Theme parks? I’m charged the same for a ticket, but can only get on a ride or two. Stay at a friend’s apartment? Walk-in showers are not the same as a roll-in shower. The majority of people in our lives don’t understand the world was built for the able-bodied. As a result, people with disabilities must spend time planning their travels to account for any accessibility barriers that may exist. Travel—even local nights out—aren’t as straightforward for disabled people. Hopefully, as our community works to educate our friends and society at large, we will put a greater focus on the need for universal design and the creation of public spaces that are accessible to all.

The majority of people in our lives don’t understand the world was built for the able-bodied.

What are your future traveling plans? Future plans for the website?

The world is enormous, and I will never run out of places to go or people to meet. But I’m especially looking forward to visiting some places this year that I have already been to many times – Beijing, Boston, and London are all on my schedule, and I look forward to exploring new neighborhoods and meeting old friends. And, no matter where life takes me, I am committed to maintaining WheelchairTravel.org as a resource for my sisters and brothers in the disability community. Whether through injury, old age or an unexpected diagnosis, the community is growing every day. The world should be open to us all, and I’m happy to help in whatever way that I can.

Anything else you’d like to add?

One of the greatest gifts travel provides is the opportunity to enrich our perspective by meeting new people. But the opportunity to grow in understanding of the world doesn’t have to stop when our vacation ends. Say hello to strangers—at the grocery store, at the dog park or on the city bus – say hello and expand your horizon. Life may not be a constant vacation, but we should never stop traveling.

 

Essays Mental Health

Fighting Off Hypochondria in a Mexican Shaman’s Temazcal

A travel journalist tries to outrun her irrational fear of health ailments, only to confront it square on in Oaxaca.

It’s nighttime in Mexico and I am bracing myself against the evening chill as I pull a flimsy, blue bed sheet tighter around my naked body. I am standing in the front yard of a local shaman’s family home—about an hour outside of Oaxaca City—carrying a bushel of basil and twigs as I walk slowly towards the dome-like structure in their backyard.

I am ushered into what can only be described as a large, stone oven big enough to fit about 14 people sitting shoulder-to-shoulder in a circle. Inside, the smell is sweet and warm as the shaman tosses mezcal on hot rocks to release a smoky steam. This is a traditional “temazcal,” a Nahuatl word coined by the Aztecs to describe a ceremony used by indigenous groups in Mexico as a therapeutic and purifying ritual.

Travel journalist Nikki Vargas struggles with hypochondria. Photo: Cantimplora Travel/Nikki Vargas/

The temazcal mixes intense heat and steam with natural herbs, juices and oils to both cleanse the body and soul of whatever ails it. As a New Yorker and skeptic, I am not confident that a splash of mezcal will be enough to wash away my ailment: hypochondria.

As a New Yorker and skeptic, I am not confident that a splash of mezcal will be enough to wash away my ailment: hypochondria.

In its most basic definition, hypochondria is defined as a person who is abnormally concerned about their health. Hypochondria is not an illness, in the classical sense, but rather is an irrational phobia. Most hypochondriacs—myself included—will fixate on a specific health-related fear. In my case, I have an irrational, all-consuming phobia of heart attacks.

I imagine my hypochondria like a debt collector standing with his trench coat collar pulled up, flicking his cigarette in my direction. It’s been days since he’s waltzed in my door and he is eager to shake me down of any serenity I may be holding on to. As a travel journalist, my hypochondria clashes squarely with the career and persona I’ve cultivated over the years. Despite my best efforts, that damn trenchcoat-wearing goon pops up in the unlikeliest of places. I smell the hint of his cigarette and musky cologne at 37,000 feet over the Pacific Ocean, on a sparsely populated island in Indonesia, on the back of a camel in the Sahara, in the backyard of a shaman in Mexico.

Within minutes of my sitting in the temazcal, I am covered in herbs, fruits, and oils, looking as though I’ve performed a gymnastics routine in a grocery store produce aisle. Rose water is poured on my head and face, chocolate is rubbed on my chest, mandarin juice coats my legs, honey is rubbed into my arms, pineapple is used as a body scrub. Each fruit and herb is a spiritual representation that is meant to take away anxiety or cleanse the soul. Yet, I can feel my hypochondria sliding in the small space, sarcastically smirking as if to say, “you think a pineapple will keep me away.” Just like that my hypochondria is sitting next to me in that remote temazcal, whispering fears into my ear.

Rose water is poured on my head and face, chocolate is rubbed on my chest, mandarin juice coats my legs, honey is rubbed into my arms, pineapple is used as a body scrub.

It’s hot in here, you might get a heat stroke. What if you have a heart attack?

Where is the nearest hospital anyway?

What if you’re allergic to some of these fruits or oils?

What if your throat closes up?

The thoughts alone are pesky, but the fears create psychosomatic sensations. At each question, my body seems to respond. My head feels dizzy at the mention of a heat stroke. My heartbeat quickens at the thought of a heart attack. My chest begins to tighten under the weight of the anxiety. My throat begins to itch at the thought of an allergic reaction. Deep down I rationally understand what is happening to me—I can see each worry and its physical response unfolding in real time—but in the moment, rationality is eclipsed by that hypochondria goon.

It would be easy to blame aspects of my life for my hypochondria. As the daughter of a doctor, I was raised with the sort of worst-case-scenario stories one can only tell if they work triage in an Emergency Room. I remember nights spent at the doctor’s lounge while my dad—a single father then—was moonlighting. I remember growing up surrounded by medical encyclopedias and stethoscopes, equal parts fascinated by medicine and terrified. But even my childhood—which I wouldn’t change for the world—doesn’t seem like enough of an explanation. No, if I had to guess, what terrifies me the most is how little warning it seems we get when illness arises. It is the idea that something could be spreading in your body at this very moment and you could be none the wiser. Heart attacks, in particular, appear to be so sudden and random that the idea of them terrifies me.

Photo: Cantimplora Travel/Nikki Vargas/

Despite my very real anxieties, I am ashamed of my hypochondria. People with diagnosed illnesses are fighting for their life, and I’m boxing with a figment of my imagination. I come to Mexico—as I often do when traveling—to outrun my demons. Yet, here he is, comically out of place in this shaman’s backyard, and all of a sudden, I want to push off the title of travel journalist and crawl under my bed sheet.

I am ashamed of my hypochondria. People with diagnosed illnesses are fighting for their life, and I’m boxing with a figment of my imagination.

This is our routine. Every time this trenchcoat wearing jerk saunters in, I fight like hell to chase him away. I am wrestling with my mind in that sweaty temazcal somewhere in the outskirts of Oaxaca, having a mental Mayweather match. My fight against hypochondria begins with breathing. Deep belly breathing to center the body, slow the heart and calm the brain. Next, I need a distraction—a recommended tactic from my therapist—to pull my attention away from the psychosomatic responses, typically it’s a little ‘fidgeter’ or counting. As I work through my tricks, l notice hypochondria’s grip slacken. The fears begin to clear, my body stabilizes and suddenly I am back in Mexico covered in fruit, listening to a shaman. For a good couple minutes, I was elsewhere, yet not one of my fellow travelers would guess. That’s the thing about anxiety, it exists in the darkest recesses of our minds, hidden in the corners no one thinks to look.

With the temazcal ritual over, I step back into the cool night air feeling lighter than I had a few minutes ago. In the corner of my eye, I think I can see the flash of a beige trench coat as my hypochondria slinks off into the night, knowing he lost this fight. I can almost smell him—cigarette and cologne—floating over the Oaxacan night air, but he is too far gone to be a bother anymore. I know he’ll be back in a couple days when I least expect it, but I know I’ll be ready. As I learn to face my hypochondria, to talk about it openly, to learn about anxiety management, and to master techniques to calm myself down, I am becoming a worthy adversary.

Essays Rare Diseases

The Scars Mean Lifex

Working as a photojournalist in other countries has taught me that the true meaning of my keloid scars.

Life has a funny way of reminding us that, underneath cultural boundaries and deep-seated perceptions, we’re really not all that different. No matter the color, make, or mark of our skin, we seek out the basics: family, shelter, food, water. It should be easy to make those connections, but sometimes it takes something a little out of the ordinary to break the barriers.

Since my late teens, I’ve had thick, red, raised scars on my back and shoulders, and now have a large, expanding scar dead-center on my chest. It’s due to a heredity condition which causes severe keloid scarring if I get a cut, burn or any other wound. I have vague memories of being a preteen without scars: summers spent living in tank tops with clean, “normal” shoulders bared to the world. But the memories are shadowy, and there’s a part of me that feels like I’ve always had this itch on my skin, even if I have photographic proof that there was, indeed, once a before.

Of course, the scars prompt questions, so as a young woman with this condition, I’ve dealt with self-consciousness. For years, it was a struggle to simply wear a tank top in public, because people would point and make comments. Standing in line at the post office one day, an old man told me I should be ashamed to show my scars. Since then, I’ve actually made a point of wearing tank tops more often–why should I let people with cruel streaks that wide control my body? But despite being outwardly defiant, I still noticed the people staring.

Now I’m 30–a photojournalist, who often works abroad–and I’m starting to think my days of being self-conscious are behind me. It’s taken stepping far outside my normal culture, but I think I finally appreciate my scars. Other countries just don’t have the same hang-ups about scars that we do.

It started in the South Pacific. While shooting a project in a remote, rarely-visited atoll, a young village boy approached me. He asked if he could trace my scars with his fingers. When I let him, nearly a dozen friends followed. Suddenly I had little tan hands running over my shoulders, arms, and back. To these kids, my red swollen scars were tribal markings; a source of interest, not a thing of shame. Sunburned, with my cameras piled in my lap, I sat in the sand under palm shade and found myself getting teary-eyed at the easy acceptance these children had for me, when people from my own country found it so hard.

Last autumn, I found myself in Hokkaido, Japan, covering a fly-fishing story. The hotel I was staying at had a rich tradition of onsen, the culture surrounding the natural hot springs Japan is known for. For locals, honsen is a way of life from a young age: nude children accompany their parents into the springs, and by doing so, they learn early on that regardless of what you look like, we all have a place in the water.

Nude children accompany their parents into the springs, and by doing so, they learn early on that regardless of what you look like, we all have a place in the water.

My first day visiting the onsen, I struggled to navigate the strict, unstated rules the locals inherently knew: undress here, walk here and not there, wear your little towel on your head while you sit on a short stool and wash yourself before entering the pools. Signs were posted that tattoos were not allowed — no exceptions. This is partly to keep the yakuza, or heavily-tattooed Japanese mafia, out of the honsen, and keep the clientele safe, but other stigmas are at play too. Either way, while tattoos are forbidden, scars are allowed.

In Western culture, we’re largely uncomfortable with nudity, yet two days into my stay in Japan I found myself nude on a rooftop onsen, watching incoming storm clouds skid past a volcano at the edge of Lake Akan. I was the only Westerner I’d seen in days, and yet beyond a cursory curious glance, most of my fellow bathers didn’t seem to care about my scarred shoulders. At that moment, with the warm water streaming below me and the cold breeze ruffling my hair, I was able to recognize that my scars weren’t me in total, just part of me. Like tattoos, my scars are stories sketched on my skin, each one a vignette describing a discrete moment–an old adventure, a painful night–in the life I’ve lived.

Like tattoos, my scars are stories sketched on my skin, each one a vignette describing a discrete moment–an old adventure, a painful night–in the life I’ve lived.

As I write this, I’ve just returned from an assignment in Jordan, where the culture surrounding nudity is far removed from that of Japan. In the more rural parts of the country, long pants and long sleeves are expected on women. But there’s one big exception: floating in the Dead Sea.

As dawn broke one morning, I found myself clad only in a bikini top and capri leggings, chatting with a local on the beach as we slathered ourselves with mud before entering the water. His command of English was very limited (as was my Arabic) but we chatted amiably as we donned our grey-toned mud. At one point his eyes fell to the unavoidable scars on my shoulders and his face sobered.

“War?” he asked, all lightness gone and his eyes solemn.

In that part of the world, scars mean battle and strife, bullets, and bombs. My scars, though, reflected adventures I’d chosen to go on: wounds I’d been dealt all over the world in my job as a photojournalist: scorpion stings, flying shrapnel, a misbehaving helicopter. And for the first time in a long time, I was proud and grateful for my scars.

“Life,” I replied, grinning as I slathered on more mud.

The scars mean life.

Chronic Illness Health & Fitness

How To Have Great Vacations When You’re Chronically Ill

Because let's face it: people who are dealing with a health condition probably deserve a good vacation more than anyone.

Since her diagnosis 4 years ago with Crohn’s disease and Chronic Fatigue Syndrome, my mother and I haven’t had a vacation together. Our regular twice yearly trips to London—one of our favorite city breaks —have had to be put on hold as we adjusted to the daily realities of her illness, including her limitations and how to work with her new dietary needs.

Until now. With the arrival of the smash Broadway musical, Hamilton, to the London Victoria Palace Theater, we decided to finally arrange a trip back to the City. After all, when two people who don’t normally enjoy musicals find themselves captivated by a soundtrack for two years straight, it seems worth the effort to travel a few hundred miles to see the show for real.

The point of a vacation, of course, is to take a break from your daily routine. When you’re chronically ill, though, you can’t just switch it off for two weeks. So as we plan our trip, we do so with full knowledge that, this time, there will be things my mother can no longer do.

But while there may be new hurdles and challenges to overcome, the trip can still be very rewarding, providing we plan accordingly. Here’s some of what we’ve learned as we plan so far.

Choose your destination wisely

When you’re planning a vacation with chronic illness, think honestly about where you would like to go, and whether it’s achievable. You’re looking for a destination that hits that sweet spot between ‘fun’ and ‘practical’. It’s not weakness to accept that there are certain places you might not be able to go. A long hiking trip is no use if you have mobility issues, while a foodie excursion will be limiting if you have specific dietary needs. Plan accordingly. Consider things like how weather or temperature may affect you, or whether you’ll be able to get satisfactory care locally if something goes wrong.

If you’re traveling with someone, discuss your limitations with them.

Because my father grew up in London, we’ve been visiting the city for most of my life. We love to shop, and walking through the City conjures up memories of my childhood for my mother and me. It’s also only 3 hours away from our home in South Wales, meaning we won’t be too far geographically if she has any health issues. It’s the perfect ‘first trip’ after her diagnosis.

Likewise, if you’re traveling with someone, discuss your limitations with them. My mother was worried about the journey as she suffers from claustrophobia and didn’t want to feel trapped, so we’ve opted to drive rather than take a train to London. It’s a little more effort for me as the driver, but it means we can stop frequently if she needs a rest or some time out.

Pack smart

Make sure to pack what you can ahead of time. It’s likely to be a tiring process so avoid leaving things to the last minute. It also gives you time to consider anything extra you need to purchase or arrange. Items like a doctor’s certificate or note can be useful for getting care abroad, but also make sure to think of creature comforts like a favorite blanket to keep you warm, or make you feel more at home. If there’s going to be a lot of downtime, a tablet is great for Netflix rather than being restricted to hotel TV.

If you’re taking any of your meds or supplements on board a plane, make sure they’re clearly labeled with what they are

Consider using a pill organizer box to arrange your medications for each day of your trip. When you’re away from your daily routine, it’s very easy to forget to take your meds even if you’re normally very organized. Set an alarm on your phone to be doubly sure that you never forget to take them at the relevant time of day. If fatigue is an issue, like with my mom, it’s even easier to forget out of tiredness. An alarm reduces that risk. (Alternatively, you could also subscribe to a service like PillPack, which prepackages your medications by the dose and ships them directly to you.) (Disclaimer: Folks is sponsored by PillPack.)

If you’re taking any of your meds or supplements on board a plane, make sure they’re clearly labeled with what they are, along with your name. Take them on your carry-on luggage so there’s no risk of losing them if your luggage is delayed.

Book ahead

If you’re planning a trip that’s focusing on a specific event such as a shopping trip or attending a concert, make sure to book your hotel as close to the location as you can afford. Hotels.com and Expedia.com are great options for booking, allowing you to enter an address and view hotels nearby. After you’ve participated in the activity, you’re likely going to be tired, especially if you have a chronic illness. You want to be able to return to your hotel room fairly quickly. If visiting a city, a central location is ideal if you want to rest up for a couple of hours before heading back out.

Pre-Crohn’s, my mother and I would choose a hotel just outside of London and take public transport in. While that’s a cheaper option, this time around, we’re paying the extra to be nearer to the action. If she’s going to be out late, we want it to be spent in fun, not in transit.

Consider any additional requirements you might need and let the hotel staff know ahead of time. Do you need wheelchair access in your room? Or a walk-in shower? Both Hotels.com and Expedia.com allow you to filter results by accessibility features. It’s still worth informing the hotel at the time of booking to guarantee you get the assistance you need. We’re prioritizing somewhere that has elevator access. The last thing we need after hours of traveling is my mom struggling up multiple flights of stairs.

Finally, if you’re planning on dining in your hotel, this is also the ideal time to make them aware of your dietary needs. Outside of your hotel, sites like AllergyEats are great for looking up allergy-friendly restaurants. Elsewhere, a quick Google for a restaurant you’re considering will often provide information on how well they cater for specific diets. Restaurant chains are particularly efficient at offering everything you could need to know.

Plan, plan, plan

Everybody’s energy levels are finite, but with a chronic illness, your batteries recharge slower. Take that into account to to use your energy to the fullest.

Plan some rest days amongst your trip.. Ideally, have a rest day the first day you arrive at your location, so you’re well-rested to go out the next day.  If financially possible, extend your trip by a few days so you can take it easy as needed without giving any time up for shopping and sightseeing. Reading a book by the pool or indulging in a spa day can restore you a little for the next day of sightseeing.

Everybody’s energy levels are finite, but with a chronic illness, your batteries recharge slower.

Think about what’s essential for you to achieve on your trip. Is there a walk you particularly want to take? A show you desperately want to attend? Place that at the top of your list then write up everything else that you’d like to do. Prepare a ‘worst case scenario’ plan of action alongside a ‘best case’ list. For our list, we’ve made Hamilton our biggest priority, with short shopping trips to Selfridge’s or Harrod’s being next on the list. Everything else is optional.

Check out services like Google Street View to see exactly where you’re going, and whether a location is accessible. Apps like AccessNow crowdsource information to determine places that are accessible for wheelchair users. For those with mobility issues that don’t require a wheelchair, it’s great to be able to know exactly where a seat or bench is along a public walkway. Use apps like Uber or Lyft to arrange rides ahead of notice so you don’t have to rely on hailing a cab the old fashioned way. It might cost a little more than using public transport, but it’s worth the extra few bucks if you’re able to enjoy your trip.

Eat well

Many chronic ailments also require you to follow specific diets Luckily, most restaurants and eateries can cater to specific allergies and diets, but you still should do research beforehand. Don’t be afraid to email or call to double check a restaurant can meet your needs. Check out potential places to visit on Yelp or TripAdvisor, and see if any customers with dietary needs have had issues before. We’re not booking reservations ahead of time in case my mother’s Crohn’s is acting up, but we still have a list of options prepared of places that we know can cater to her gluten-free diet, if needed.

If you’re traveling to somewhere that involves a different language, brush up on learning key words such as what dairy or gluten are in that country’s language. Before your trip, use Duolingo, a language app, to learn the basics for food items. Make index cards that explain your allergies in the relevant language, saving you the hassle of learning correct pronunciation. Google Translate will help you in a jam while you’re there, but don’t rely on it as it’s imperfect.

If you’re able to, take some snacks with you. These can sustain you while you’re walking around, and if you need to eat and can’t find a place that caters to your needs, a bag full of snacks can be a life saver, especially for women like my mom, who weakens quickly if she doesn’t eat regularly.

Don’t put too much pressure on yourself

My mom is already feeling a little sad that this trip won’t be as jam-packed with sights and destinations as previous visits. We’re probably not going to be able to be as active as we have been in the past. But that’s okay. The important thing is: she’s still on vacation. Sure, the trip might not go perfectly to plan, and sure, it might be bittersweet at times. But she’s made it, and that’s a big step.

The important thing is: she’s still on vacation.

Feeling obliged to get everything possible out of an experience can make things more stressful than they should be. Just enjoy the ride. Take pleasure in the little things. Like me and my mom. We’re going to see our favorite city in the world from a whole new perspective. That’s exciting no matter how you cut it.

Disability Profiles

Roughing It Around The World, On Wheels

For nine months, Eamon Wood backpacked alone across Europe and the United States, proving the hostel life isn't just for those with the use of two feet.

Like a lot of Kiwi men, Eamon Wood’s a taciturn guy, weighing each word carefully, as if reluctant to let it go. He speaks in understatements, and when he relates the tale of sleeping rough and living on a shoestring budget during his nine-month trip across Europe and the US, he does so with the same casual tone he’d use to tell you about his morning routine.

The twenty-eight-year-old has just returned from the trip of a lifetime, or perhaps more likely given his nomadic background, the first of many intrepid journeys. And as he’s paralyzed from the waist down since a car accident at five years old, Eamon’s trip took place on two wheels.

Eamon Wood has spent the last nine months backpacking around the world in his wheelchair.

Eamon reckons traveling is in his blood. His parents–particularly his mom–never liked to stay in one place, and he had a nomadic upbringing. The family lived on a bus for a time, going from one small town to another around New Zealand’s South Island. By the time he was fourteen, Eamon had lived in thirty or forty places: he lost count after a while. At fourteen, tired of a transient life, he pitched up in the port city of Christchurch, where he stayed at a boarding school while his parents continued their nomadic lifestyle.

But his nomad genes bubbled up to the surface, and a couple of years ago he decided it was time for a change. “I wanted to slow down because I had a lot of things going on with sport and work, and I wanted to find time to stop and enjoy what was going on. Life seemed to be flying too fast for my liking,” he explained.

“I wanted to find time to stop and enjoy what was going on. Life seemed to be flying too fast for my liking.”

After a test run backpacking around the South Island, Eamon headed for the United Kingdom, where he spent a couple of months exploring, getting off the beaten track wherever possible.

The first few weeks were a steep learning curve. Eamon realized he’d overpacked, bringing not only a large backpack, but a speciality basketball wheelchair along with him. A keen player who’s represented New Zealand at the international level, Eamon had planned to shoot a few hoops while he was Stateside. But the games didn’t pan out, and by the time he’d reached Texas, he’d given his large backpack away in favor of a small bag, and stored his extra wheelchair with a friend.

Eamon easily covered 12 miles a day in his chair, he says. And like any other backpacker trying to save a dime, he used local transport to get around, catching trains, buses, Ubers, ferries and hitching rides here and there. Where he could, he planned ahead, booking ground-floor hostels. But Eamon’s philosophy of making those plans lightly meant he sometimes found himself hauling himself up flights of stairs, dragging his chair and his backpack behind him.

The road always provides.

Eamon lived cheaply on the road. He met people through the website Workaway, which lists hosts willing to feed and shelter travelers who repay their hospitality with work. He also played his guitar on the street a few times, something he said was scary, but on his bucket list. The first time was in Brighton, on England’s south coast, and it was the coldest day of the year.

“It was so cold I couldn’t feel my fingers. I made seventy cents. It was fun, but it wasn’t for money. My most successful time was in Texas, I went out on a Friday night and jammed out while the locals went past. I made seventeen dollars. ”

In the US, he slept rough, bedding down for the night on a pedestrian bridge. He’d pushed 43 miles that day and when it got to midnight, he realized he couldn’t go on. “It was in the Florida Keys and the bridge ran alongside a big car bridge. I didn’t want to sleep on the grass because there were heaps of spiders looking at me, so the concrete seemed quite inviting. I was just looking out over the ocean, it was definitely a highlight.”

“I didn’t want to sleep on the grass because there were heaps of spiders looking at me, so the concrete seemed quite inviting… After that, I could sleep anywhere.”

“After that I felt like I could sleep anywhere. I didn’t have to worry about making it to a hostel, and it increased my scale of what I could do.”

Traveling alone can be an isolating experience, but Eamon says he was never overtaken by loneliness. “I was in my element, I love my own company, I’m a real inwards person so I like to have a lot of time to just sit there and appreciate things. I feel like that’s probably the only way I’d travel now, on my own.”

When he did feel the need for a little company, a Facebook page he set up along the way, helped him connect with like minded people along the way, many of whom were willing to help with rides or a bed for the night.

“I think people were a little surprised to see me traveling on my own. Maybe I was less threatening as I’m in a chair, so people took me in, or offered me help.”

When Eamon couldn’t reach a place on wheels, he’d drag himself and his wheelchair there.

The flipside of being a non-threatening man in a wheelchair means Eamon could be left vulnerable in unfamiliar situations, he acknowledges, although he says he never felt that way.

“I’m pretty transparent and honest, and the naivety of me wants to believe in people, so I will trust first. There was a couple of times I ran into rough characters but they were okay, they’d just give me a hard time.”

One rough character in particular stands out, a homeless man Eamon met at five AM after a twenty-two hour Greyhound journey from Miami to Louisiana.

“A homeless guy came up and approached me, asking for money, and I was like, ‘oh man, I’m in a similar situation, I don’t have much money.’ But I took him out for breakfast and we hung out for a couple of hours, he told me his story. It was an unsafe situation but he seemed like he had his heart in the right place.”

To compensate for the dodgy bits, Eamon found plenty of those transcendent, unexpected moments every freewheeling traveller lives for. One stand-out experience took place at a tucked-away hostel on the Isle of Iona, a remote Scottish island accessible only by two ferries from the mainland.

“I ended up pushing along the island, it was beautiful day. I was wheeling down a grassy hill and stumbled upon this little hostel. There was a guitar there and I met a lady who played the fiddle. I sat out and watched the sunset, and we had a whisky and played guitar and fiddle under the stars. That stood out as a magical moment.”

Back in Christchurch, Eamon’s world once again turns around his work and basketball training. But the magic and music of a transient life on the road still calls to his nomadic blood. “I’m definitely not done with traveling, but I’ll wait and see. My whole idea of life is to have no plan, see what happens. You can sit and figure out a plan until your face goes blue and account for every situation, and still something you hadn’t thought of will come along.”

Disability The Good Fight Vision & Hearing Loss

The Tour Guide Making Ghana Accessible To People With Disabilities

Entrepreneur Joseph Asameni Obiri says that by making Ghana more accessible to people with disabilities, he can help make the entire country richer and friendlier.

Startups are a tricky business anywhere in the world. The life of a founder means high-stress, self-financing and countless long hours in the quest to fill a gap in the market.

No one knows this better than Joseph Asameni Obiri. Hailing from Accra, the capital city of Ghana, Obiri drained his bank account, turned his bedroom into an office, and has faced countless setbacks, but his faith has never wavered in his mission: to make his beautiful country accessible to people with disabilities.

Obiri launched his startup company, Lionize Tourism Consult, in December, 2016. His company is focused on including persons with disabilities (PWD) in Ghana’s tourism: both those already here and those who want to visit.

Joseph Asameni Obiri with a bus full of happy customers.

His first event offered a free tour to students from a hearing and visually impaired school in Ghana. He completely self-funded the tour, taking the pupils around Accra. Obiri rented a bus to take the children and teens to visit a library, memorial park and then a shopping mall. The kids, who usually had limited access to the sights of the city, loved it. By the end of the tour, they were literally singing his praises from the back of the bus.

The experience only reaffirmed Obiri’s belief that Ghana needs to be more open to people with accessibility needs. A ten-year veteran of the Ghanaian tourism industry, Obiri’s business was born from his frustration that people with disabilities were not coming to his safe and stable West African country. More than that, even native Ghanaians with disabilities had often not seen much of their own backyard.

To a savvy entrepreneur, it seemed like an opportunity ripe for the picking. “People with disabilities want to travel, if you just give them the opportunity, ” Obiri says.

Tourism catering to people with disabilities has the potential to be big business in Ghana: a 2015 report from the  Open Doors Organization suggests that in America alone, more than 26 million disabled adults traveled for pleasure or business, spending more than $17.3 billion annually.

After his first free tour, which proved his concept, Obir branched out. He took pupils from a school catering to Ghanaians with intellectual disabilities to one of Accra’s top hotels and a botanical garden. The tour was another success; one of the older participants even took Obiri aside and said he wanted to intern at the hotel they visited.  “He said he doesn’t care about being paid… so long as the people around him see he is doing something with his life,” Obiri remembers.

In April, Obiri did a tour to Ghana’s Eastern Region for a paragliding festival, bringing along about 30 visually impaired adults through the Ghana Blind Union, a local blindness advocacy group. There, he was even allowed to take one of his customers paragliding, even though the organizers originally said it was too dangerous. Local media covered the event: it was the first time a visually-impaired person had ever gone paragliding in Ghana.

Obiri believes that by bringing more people with disabilities into his country, accessible infrastructure as a whole within his country will improve.

To date, Obiri’s paragliding adventure was his last tour. So far, he has paid for all of his trips out of his own pocket, he is now looking for funding. In the meantime, Obiri is trying to sell tour packages to people with disabilities who live outside of Ghana, using his successful free tours to prove there’s plenty of opportunities for travelers with accessibility needs to travel within his beautiful country. His ultimate goal is to help fund free tours for Ghanaians with special needs from the money he charges foreigners.

“The real market is out there,” says Obiri. “We have the evidence.”

Genetic & Congenital Diseases Profiles

Traveling To Find A Place To Belong

Born with cerebral palsy, Turkish globetrotter Esin Merdan travels to find a country where her disability will truly be accepted.

 

Lying back on her hospital bed, Esin Merdan used to flick through the TV channels, dreaming of life in different countries.

It was both an escape from the boredom of hospital and a goal to aspire to. A decade later, the 22-year-old Turkish student has ticked off 12 countries… and she’s still far from being finished.

Traveling and living abroad can be a challenge for the strongest-willed millennial. In addition to the inevitable language barriers, there’s the sense of loneliness that comes from a long day exploring a city, driving yourself mad juggling currency conversions.

Merdan combats those, but she has a lot more to deal with too. Merdan has cerebral palsy, which makes it very difficult for her to walk. She relies on a crutch to get around, and will feel pain and discomfort when she is seated for too long… even on the flights that whisk her way to her next exciting destination.

“I get exhausted often so I have to rest for a long time when I get tired,” she says. “It has other drawbacks as well. I can’t sit still for too long or I start getting cramps. It was worse when I was a child: I had to have five surgeries to be able to walk.”

Esin Merdan’s first visit to Italy as a student launched her lifelong love of travel.

Disabled or not, it’s not uncommon for people who have never traveled to think it’s beyond them. That’s a feeling Merdan understands very well. But she feels that if she can do it, anyone can.

Currently living in Dortmund in Germany where she is on a university exchange program studying English language and literature, Merdan wants to show others there’s nothing stopping them from exploring the world.

The Ankara native posted a photo of herself to a closed travel group on Facebook and introduced herself, explaining her disability and fielding questions on how she travels 2000 likes and more than 100 comments later, it’s safe to say that others found her story inspiring.

“I shared my photos because I want people to be inspired by my journey. I want them to think if this girl can do this, then I can do this too. I want to motivate them to do better.”

It also inspired her to start up a blog to document her travels, encouraging others to leave the comforts of home to explore another part of the world.

While Turkey has always been her home, she has been able to go on youth exchanges to keep seeing the world. Moving to Germany in September 2016, for her year exchange will be the longest period she’s lived abroad.

Her first trip was to Italy when she was in high school. At 17, she came out top of her class in an English test, which won her a spot in a small group of students headed off to visit Rome and Palermo.

When she saw life outside of Turkey for the first time, she made a resolution to travel more. But she soon found out that the group of students she traveled with saw her as a burden.

“They felt like I was slowing them down,” she remembers. “At that moment I decided to live abroad. I would keep traveling and find a place where I could be accepted as myself. It became my desire and determination from then on.”

And to make sure she was accepted wherever she went, she started studying all the languages she could learning, including Italian, German, French, Japanese, and Russian.

When Merdan is looking into a new trip, one of the first thing she’ll research is if it’s disabled- friendly. Luckily, most European cities are, but because her disability requires special travel considerations, she usually visits each new place as part of a package tour, which she’s used to visit Rome, Prague, Riga, and–most recently–Disneyland Pari

It was her second visit to the romantic city, where she developed a taste for French cuisine especially salty and buttery dishes… hard to find in her native Turkey. As for Prague, she described it as a  “fairytale, I felt it was all like a dream. It is such a beautiful place it’s hard to put into words.”

However, it was Riga, the capital city of Latvia that gave a lasting impression: she was finally able to do some sightseeing by herself.

“I walked around and chatted with people and was able to see the beautiful things of the city by myself,” she remembers. “In all my previous travels,I was never alone: I was with a group. I wanted to see if I had what it takes to walk by myself and do things by myself and I saw that I could and felt so proud.”

Yet despite her valour and get-up-and-go attitude, traveling with this walking disability can leave her feeling blue.

I want to find a place where I am accepted by myself and without feeling like a burden to other people.

“One of the reasons I keep traveling is because I want to find a place where I am accepted by myself and without feeling like a burden to other people,” she says. “I don’t find it easy to go and talk to people. I find my disability to be a problem sometimes. I often meet with people that don’t really understand any of my struggles.” She will find she’s left behind on some walking tours as she can’t move as quickly as others.

She finds that every country she has been to has been a possible contender for a place she will find acceptance, she particularly enjoyed France and Italy.

Ultimately the place she wants to live “should be multicultural, people should tolerate each other regardless of religions, ethnic identities or health issues, or disabilities. Also it should have easy access to transportation. Living in Germany made me realize that I want to go to a place with great art and architecture, that is filled with sincere and friendly people. I think I would be really happy to live in such a setting.”

Not someone you want to meet on vacation.

While she still decides on where she might end up, Merdan has found acceptance in another, unexpected place: the international cosplay community,  who dress up as characters from films, books, or video games.

She will go to conventions with her friends all dressed up as different characters.

She likes the “cute” characters or ones that have similar personality traits to her own.

“I feel more confident and comfortable when I become a different character,  like I don’t have to worry about my disability or burdening other people. When we gather in cons, all of us are in different characters, leaving the usual sides behind is a refreshing change.”

The real world isn’t quite that accepting yet. Even so, Merdan keeps searching… and in the meantime, keeps traveling through worlds both real and fanciful to get there. Because one day, she knows she’ll get there.

 

Cancer Profiles

13 Days, 7 Wonders, And One Case Of Skin Cancer

When you survive three near-death experiences, the universe might be trying to tell you something: go out and see the world.

When you survive three near-death experiences, the universe might be trying to tell you something: go out and see the world.

Last year, 32-year-old filmmaker Megan Sullivan survived three back-to-back brushes with death.

On a Monday, while climbing the treacherous Nose route on Yosemite Valley’s El Capitan, she fell 50 feet down the mountain. She was severely bruised, but somehow broke no bones. A week later, while riding her Vespa to work, Sullivan was hit by a car and wound up in the emergency room. Then, that Thursday, during a routine checkup, Sullivan learned that what she’d thought was a “forehead pimple gone awry” was actually skin cancer. Surgery, luckily, cured it.

“It was hilarious in a not-hilarious way,” Sullivan says. “I asked myself how much more bad luck I could possibly have, but I also realized the outcome of all three instances was the best case scenario: I survived.”

After this trifecta of bad luck, she could’ve taken her parent’s advice to “go live in a giant protective bubble.” Instead, she took it as “a reminder to live more now.” Two weeks later, she realized her lifelong dream of making a film about traveling the globe.

In 13 days, Sullivan visited the New Seven Wonders of the World. On a budget of a little over $6,000 each, the pair flew to the Great Wall of China, Peru’s Machu Picchu, Rome’s Colosseum, Brazil’s Cristo Redentor, Mexico’s Chichen Itza, India’s Taj Mahal, and Jordan’s Petra. Along with her trip report and photographs, the film Sullivan made about her journey went viral.

 

Finding renewed appreciation for life after a near-death experience (or three) is a classic narrative. The underreported aspect of such awakening stories is how hard it can be to maintain this new perspective after returning to a “normal” daily routine, relatively speaking, and in the face of even more misfortune down the line. “Experiences like this will have an effect on you even a year later,” Sullivan says. “It’s more about what comes after the ‘happily ever after.’”

How has the renewed perspective Sullivan gained during her travels to the Seven Wonders held up in the last year? “This past January was probably one of the hardest months of my life,” Sullivan says, “but the circumstances were [more emotional] and harder to grasp than ‘Oh, I fell; I got hit by a car.’ You never understand why bad things keep happening to you, but I’ve learned to look at the bigger picture and realize that it’s the failures, losses, and disappointments that define your greatest future successes. Sometimes it takes falling on your ass again and realizing the good that can come out of that. Throughout my whole life, I’ve had my greatest accomplishments a few months after going through the biggest tragedies.” In her twenties, Sullivan says, she’d put aside dreams of becoming a filmmaker to work a secure job as a commercial producer–with health insurance, thankfully–but her month as a modern-day job encouraged her to change her path.

 

“Through tragedy, you kind of experience this void,” Sullivan says. “Usually, it’s a void you don’t understand. It sucks at the time. But after the first round of craziness last year, that bad luck opened up this space, this void for me to fill with something else.”

For her, that something else continues to be travel, adventure, and filmmaking. In April, Sullivan took another trip, this time to Nepal, a country still reeling from an earthquake that killed more than 8,000 people a year ago. During her solo month there, she participated in Holi, a festival of colors that signifies the triumph of good over evil, and climbed Mount Everest, filming all the while, with minimal gear. She’s currently working on making two videos from this footage–the first, a short documentary about the life of the modern-day Nepalese sherpa; the second, a 2-minute montage-style piece covering the entire adventure.

“Apart from flying in a Boeing 787,” she recently captioned a photograph of herself at 18,514 feet, standing at the top of Kala Patthar, “this is officially the highest I have ever been.”

 

Neurological & Cognitive Disorders Profiles

500 Miles Of Friendship On The Way Of St. James

Two best friends didn't let a pesky wheelchair get in the way of a once-in-a-lifetime adventure.

Two best friends didn’t let a pesky wheelchair get in the way of a once-in-a-lifetime adventure.

The small village of Los Arcos, Spain, appears like an oasis on the Way of St. James, a medieval pilgrimage route to the Santiago de Compostela that snakes for 500 miles through France into Spain. It’s a quiet town with a large stone church and a population of little more than one thousand people, but when Justin Skeesuck and Patrick Gray arrived there in 2014, they found themselves ambushed by a riotous strawberry festival… and dozens of deadly, rampaging bulls.

“I didn’t see a single strawberry,” Skeesuck chuckles. Instead, he and Gray found themselves barricaded in an alleyway, as the Los Arcos villagers tried to touch the horns of the bulls they’d let loose in the streets as they ran by. Skeesuck, who is in a wheelchair, could not easily dodge a bull, but Gray jumped into the fray. He attempted to psych the bull out by jumping left, then right, to no avail. The lathered, wild-eyed bull lunged forward and brushed against Gray’s hip, nearly puncturing his ribcage with the tip of its horn. In a frenzy, Gray scaled a fence to escape the bulls.

The lathered, wild-eyed bull lunged forward and brushed against Gray’s hip, nearly puncturing his ribcage with the tip of its horn.

“[Pat] nearly crapped his pants,” Skeesuck remembers. “I’m totally bummed the cameramen didn’t catch it on film.”

Those cameramen were accompanying Skeesuck and Gray film their first documentary, I’ll Push You. Set to debut in 2017, I’ll Push You follows the two life-long friends as they explored the Way of St. James together.

Justin and Patrick jog through the surf in Jamaica in 2007.

Justin and Patrick jog through the surf in Jamaica in 2007.

Gray and Skeesuck were born days apart and raised in the same small Oregon town of Ontario, near the Idaho border. They had a strong history of close friendship. Gray says, “We didn’t realize how intimate it was compared to other friendships because we’d had it our whole lives.” Throughout grade school, the two men had attended the same church youth group and gone on double dates together. Even their family ties go way back: Skeesuck’s great uncle was the best man in Gray’s grandfather’s wedding. After Skeesuck ended up in a wheelchair due to a progressive neuromuscular disease similar to Lou Gehrig’s–the technical name is multifocal acquired motor axonopathy–-the two began been planning a “guys’ trip.” Originally, this was meant to be something simple like a jaunt to Germany for Oktoberfest. But then Skeesuck saw a program on PBS about the Way of St. James. He told Gray about the route, and Gray’s response was immediate: “I’ll push you.”

A designer by trade, Skeesuck had worked with clients such as the luxury watch brand Maîtres du Temps and musician Greg Laswell. In his reinvention as the designer of their journey, Skeesuck’s first task was to commission a custom-fitted wheelchair equal to the rigors of the Appian Way: “an off-road baby jogger on steroids” that Skeesuck says took about five months to build. Approaching Terry Parrish, CEO of the San Diego-based video production agency Emota, to direct their documentary, Skeesusk and Gray flew from Boise, Idaho to St. Jean Pied de Port, France.

The next day, Skeesuck became the first man to summit the Pyrenees mountains in a wheelchair.

The next day, Skeesuck became the first man to summit the Pyrenees mountains in a wheelchair. Relaxing in his triumph, he stretched out on the grass with his eyes shut when a French Basque man slapped him on the face to brusquely wake him and get his attention. For years, the man had stayed near the hiking path on the Pyrenees to give pilgrims shelter, but he was astonished. He had never seen anything like this before. “The impossible is possible,” he told Skeesuck.

Over the course of the next 34 days, Skeesuck, Gray, Parrish, and their film crew slowly made their way across the Appian Way. They took the French route, starting in the north of France and making their way through Pamplona and León. But they did not make their way alone. At one particularly steep pass, 17 hikers carried Skeesuck’s wheelchair. But Skeesuck wasn’t embarrassed. “Vulnerability and asking for help in our country and culture is shown as a sign of weakness,” he says. “In my mind, it’s one of your greatest strengths, to be able to ask for help and receive help with grace and dignity… [I]t’s an invitation to share moments together and… an opportunity for community to blossom.”

Sometimes, Justin and Patrick needed to ask for a little help to achieve their goals.

Sometimes, Justin and Patrick needed to ask for a little help to achieve their goals.

But sometimes, Skeesuck received help he didn’t ask for. In the tiny Spanish town of San Juan de Ortega, the crew of I’ll Push You was having dinner when a woman made eye contact with him. A “little four-foot-nothing gal” with “no filter,” according to Gray, she bought an ice cream, walked up to Skeesuck, and started asking him questions in rapid-fire Spanish. Even though he didn’t understand a word she said, Skeesuck smiled and nodded… which the woman took as her cue to ram the entire ice cream cone into his mouth. “He was full-on violated by an ice cream cone,” Gray remembers. “It was just ridiculous.”

Other obstacles posed a more serious threat to the journey. When the wheel of his bespoke wheelchair broke, a medical supplier in Pamplona called friends of friends until he found an aluminum welder who fixed it in a day. With the help they found along the way, Skeesuck and Gray made it to the finish line: the cathedral at Santiago de Compostela in Spain.

All the routes from the Camino merge at the cathedral. When Gray and Skeesuck arrived, many of the pilgrims they had met along the way were waiting there to cheer them on, along with their wives. “I describe it as dying and going to heaven,” Skeesuck says. But it was also bittersweet. “On this pilgrimage, you strip away everything in your life, you just focus on where you’re going to eat and sleep. You’re not distracted by meetings or phone calls. When you finish your journey, you know you’re headed back to the chaos of life. … I still miss it deeply, and I know Patrick misses it deeply, and it will forever be something we hold on to.”

Patrick and Justin Walking by Statue

 

After pushing his friend across Europe, Gray says it’s improved all of his other relationships. “I’ve been watching his willingness to let others be his hands and feet, so to speak. And now I can let people in to be my emotional support. The impact is so profound there’s no way to do it justice. That’s one of the biggest impacts he’s had on my life: how I approach my marriage and my relationship with my kids. I acknowledge my imperfections and ask how I can be a better husband, father and friend. To facilitate that level of trust gives people the opportunity to love me for who I am—not for who I pretend I am—and gives them the opportunity to know me.” Both Skeesuck and Gray say their friendship has only deepened through their adventure, and they now see each other every day through their creative work and consultancy.

Monastery

 

Already, fellow potential travelers have reached out to ask for Skeesuck’s guidance on how to make the same trip. Recently, an English man paralyzed from the neck down called him to ask how to complete the journey. On April 9th, a woman with severe rheumatoid arthritis told Skeesuck how she learned about his journey two years ago and had been training to hike the Way of St. James ever since. She was departing for Europe the next weekend.

When the documentary premieres in the summer or early fall of 2017, Skeesuck wants to reach even more would-be adventurers. “My hope is that people come away watching the film knowing their life is not defined by their personal circumstances. They can achieve anything they want to. Surround yourself with people who love you and want to support you. You just have to be creative.”