Health & Fitness Neurological & Cognitive Disorders

Finding Power Within

Born with one arm shorter than the other, Mark Chaffer found love and acceptance in weightlifting.

Like a true athlete of the 21st century, Mark Chaffer met his girlfriend  just where you might expect–Twitter. Haley Deutsch was trash talking Chaffer’s favorite hockey team, the Washington Capitals, and their teasing friendship grew from there.

One day, Deutsch tweeted that her date had stood her up. Coincidentally, the same thing had happened to Chaffer that night. They decided to correct the karma in the world by going out with each other, to an outdoor screening of Top Gun at a local Baltimore brewery.

Mark Chaffer and his fellow powerlifter girlfriend, Haley Deutsch

Mark Chaffer and his fellow powerlifter girlfriend, Haley Deutsch

In Deutsche, Chaffer not only found a romantic interest. He found the motivation to transform his life through powerlifting.

Before meeting , Deutsch, the well-rounded sportsman had played lacrosse, soccer, cycling, baseball, football… and messed around aimlessly at his college gym. But nothing felt quite right.

“Lacrosse was the first thing I wasn’t good at because of my arm,” he remembers. “There was a whole section of skill that I wasn’t good at because I wasn’t able to use my right arm as well as everyone else. I liked playing, but I didn’t like competing.”

Born with an umbilical cord tied around his neck, Chaffer was stuck and forcibly removed during labor. As a result, Chaffer has Erb’s Palsy: a rare neurological condition which stretches the nerve between his arm and shoulder, causing motor issues. In Chaffer’s case, this has resulted in his right arm being three inches shorter than his left.

That didn’t stop him from loving sports. Nor did Deutsch’s childhood injury.

“When she was younger she was thrown off a horse and broke her back, but she squats two times her body weight,” explains Chaffer, 26, who works as a production support analyst at a mutual fund company when he isn’t at the gym. Through his girlfriend, he learned about yet another sport he could try on for size.

“She had already done a couple of powerlifting competitions at that point, and I didn’t know anything about powerlifting,” he says. “I was just going to the gym to screw around.”

Powerlifters train to maximize their strength in three main movements: bench pressing, deadlifting (raising a barbell from the ground, until the lifter stands straight and holds the bar), and squatting. With his shorter right arm, Chaffer struggles to bench press because his arms can’t raise the bar evenly. The same goes for deadlifting. But in the squat, Chaffer is a beast. Today, he can squat 601 pounds—but he had to surmount a few serious stumbles to get there.

In the squat, Chaffer is a beast.

Inspired by Deutsch’s fearlessness, Chaffer started training more seriously. At the time, he was “only” benching around 200 pounds. Gradually, he began to enjoy the rituals of the gym and the community there. He says powerlifters don’t take themselves too seriously because they aren’t competing with each other, just with themselves. Chaffer joined a discussion group on Reddit (called a subreddit) filled with self-deprecating lifters who made him feel more lighthearted about his “crappy bench presses.” (Full disclosure: My boyfriend is a member of said subreddit.) “The majority of people do it for fun. With bicycle racing, people take it insanely seriously, they’ll buy $10,000 bikes for a low-level race. The proportion of people in powerlifting who [take it to those extremes] are way less.”

Still, he was afraid to sign up for the crowning event of powerlifting: a competition.

“It was partly because I didn’t want to get embarrassed, and I wasn’t sure about myself as a lifter, I guess. My disability played into that a lot. The only thing I was good at, and it’s still true, is squatting.” When he squatted 500 pounds for the first time, he thought, “Eh, whatever, maybe I’ll like it.” Deutsch encouraged him to go the whole way.

“Everyone was really supportive,” he says. “That was a year and a half ago, and I still find people who say ‘Oh, I remember you from that meet last year!’ I wish I’d done it earlier because I learned how to enjoy the experience and not be worried about what people will think and if I can fit in.”

Chaffer's specialty is the squat. Photo: Ashley Sauers

Chaffer’s specialty is the squat. Photo: Ashley Sauers

Then, Chaffer was tested to his core, physically and emotionally. He flew to the American Open in Boston, determined to hit more personal records (PRs). After preparing for months, he squatted 540 pounds, a PR by 22 pounds.

“That was awesome, and as soon as bench started, everything went downhill. I got the first bench, and then my body didn’t do what I wanted it to do. Deadlifting went as poorly as it could have gone … and I got a little disillusioned after that.”

For months, he had been in constant pain. “I was trying to force my body to do stuff that it wasn’t made to do,” he says. “That’s where I figured out: OK, I can’t bench like other people or deadlift like other people, and I need to reassess. I took a few weeks off, and went back in with a different approach. I decided to listen to my body more.

“I had to stop and relearn from the ground up. It took forever, and it was terrible.”

Chaffer was grappling with the cognitive dissonance of his invisible disability. Most people didn’t notice it, so he was often attempting movements to be as similar to the standard as possible. “If you talk to people who don’t do sports, they would say, ‘You’re normal.’ That’s not true, but that’s how people see others with invisible disabilities.”

Chaffer was grappling with the cognitive dissonance of his invisible disability.

After hearing about the organization I Am Adaptive, Chaffer began to view his body in a more holistic way. Through months of trial and error, he learned stances that would make his bench press and deadlift feel better. “It’s about constant adaptation,” Chaffer says. “Because you can’t function like a—quote—‘normal’ person, you keep adapting and changing.”

In the end, that’s why Chaffer connected with powerlifting more than any other sport.

“It’s empowering,” he says. “I can go to the gym and learn how my body works or interacts with the world around it. With the constant of the three lifts, I can go in and tweak small things and take that micromanaging control of something and try to analyze it and solve the riddle. When I started thinking of things more like I could work on and adapt to them, and that I could use it as a personal challenge, it started to feel really good.”

In May, Chaffer did a local meet “for shits and giggles” and set a state record for the knee-wrap division by squatting 590 pounds without wrapped knees. He shares his lifting videos online and has grown a following on Instagram (@ineffective_platemath), and he’s vocal about his struggles with Erb’s Palsy.

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Chaffer after listing 590 pounds, a new personal record. Photo: Ashley Sauers

“When I share and have a big audience, people say, ‘That’s awesome you’re able to do this, I have the same condition, can you share something that will help me?’ People seeing me as a success has helped them see they can have success and keep trying.”

His next goal? Squatting 700 pounds. Instead of contributing to his pain, powerlifting is the first sport that has most improved the symptoms of Chaffer’s injury. “Now that I’ve been lifting for a couple of years, I don’t get the kind of back pain or shoulder pain that I used to get because I got the parts of my body that are screwed up, stronger. So it’s been good for my general existence. My body is better able to support itself.”

Despite all his personal success, Chaffer knows whom to thank: He continues to follow in the footsteps of his powerlifting girlfriend. They’ve moved in together in a Baltimore suburb near Catonsville. When the brawny couple isn’t at the gym, they coddle their 20-pound miniature pinscher, Diesel (“very anxious and excitable—does not like being left alone”). Chaffer says, “Everyone has weak a overhead press, except for my girlfriend who overhead presses more than I do. … No matter how discouraged she got, she just kept doing it. She would get knocked off and start again, and that really inspires me. That’s what I find awesome: hitting adversity and having things not work out the way you want, and keeping on going with whatever it is you’re working on.”

 

Neurological & Cognitive Disorders Q&As

How To Help A Loved One With Dementia

Lori La Bey, founder of Alzheimer's Speaks, explains why we shouldn't try to capture the people we love in a freeze-frame, even at the end of their lives.
Photo of Lori La Bey, an advocate for care givers.

Photo of Lori La Bey, an advocate for care partners.

Lori La Bey has spent almost the whole of her adult life learning to live graciously with a condition that was not her own. For the majority of the three decades that her mother lived with dementia, Lori and her father acted as her primary care-partners, silently joining the more than 65 million Americans that provide daily assistance for their aged, chronically ill or disabled loved ones. In 2009, Lori founded Alzheimer’s Speaks, an organization whose efforts turn around the work of challenging the stigma of dementia and offering comfort and acceptance when crisis threatens.

It seems a unique cruelty that some are chosen to watch, and intimately attend to, the decline of their dearest relatives. Yet this is not how Lori tells her story. She joined us at Folks to discuss finding humor and peace in care-partnering: the work that chose her.

Tell me a bit about your earliest work as a caretaker.

I actually choose not to use the term caretaker. It’s evocative of a kind of lopsided relationship where only one person can touch the life of the other. My work was as a care-partner, because I was a daughter and a friend before all else. What I did was relational. There was give and take.

See, my mom had dementia for thirty years, more than half of my life. So I’ve spent a lot of time learning to live with this disease graciously. At first, our family really struggled knowing what was going on, as the doctors failed to diagnose her for ten years. They kept dismissing it as hormones, and yet when we finally reached out to a neurologist he said that she had the mental capacity of a three-year-old. My mom knew all along that something was wrong, and she would even joke that “these ain’t my girlfriend’s hormones.”

Wait, your mom knew?

Lori and her mom enjoy some music.

Lori and her mom enjoy some music.

Most people with dementia do. For my mom, there was a moment where she could no longer tell the time, but she wouldn’t tell people. When you talk to people with dementia, they always mention their work-a-rounds. For instance, my mom could tell the time by what was on TV. For the longest time, we couldn’t figure out why she would flip out if we changed the channel. Of course, those were the faces she was familiar with. New faces indicated a different hour of the day, and we just didn’t know it. She never told us about these kinds of things. They were her work-a-rounds, her attempts to be safe and to feel comfortable. As a family, it took us a long time to figure this out. We really didn’t even know to look for it.

After her diagnosis, did things improve?

Honestly, we just didn’t find much help. The only thing we knew about was the Alzheimer’s Association. Back then, there wasn’t a lot of support that was given to families and homes, and this is still true in some cases today. You could donate money and go on a walk, but that was about it. There weren’t product services or tools to help you actually live in the home independently. There was no sense that we were building a community.  It was more of a bandage approach: just fix it and move on.

The focus of my work from day one has been to raise people’s voices so that they could find the services and community they needed to not feel so isolated.  Care-partners need the freedom and empowerment to help remove fear from their work. Alzheimer’s doesn’t always look pretty. But you know what, our lives weren’t that pretty before Alzheimer’s hit. We all have our ups and downs, but when you enter a time of crisis you always think that things were perfect before. That’s what we do.

Why do we hold on to these false perceptions of our own lives?

Well, it’s easier for us to deal with. We don’t have to go into a new mode. We don’t like change. When someone gets diagnosed with dementia, we remember them at their pinnacle and we don’t want to give that up. We try to force them to be that person. They might have never been that person for years, but we go back in time.

I remember going through old pictures and finding an image of when I got married. I was in it with my mom and dad. When I saw it, I chuckled because I realized my dad’s dead, my mom’s got dementia, and I’m divorced. Meanwhile, I’m still trying to make my mom that person she was when I got married 30 years go. We all do this, but we must be more conscious of it. We have to stop “freeze-framing” people in time when the rest of the world continues to change.

Lori's mother and daughter spend Mother's Day together.

Lori’s mother and daughter spend Mother’s Day together.

 It seems as though this would lead to tension in any relationship. What’s the effect of refusing to believe that your loved one is sick?

 There’s a panic for people with Alzheimer’s or dementia that they make their loved ones anxious. This brings them to focus on care for others instead of themselves. They long for a sense of belonging, and they desire to restore things to what they once were. You put the pressure of getting things back to normal on a person that is really sick and it’s devastating.

So one of the things that most frustrates people with early onset Alzheimer’s or cognitive impairment is when people say to them, “Well, you look okay. You seem the same.” This infuriates them. It’s as though their friends and family really don’t want to believe that they have the symptoms to begin with because they look okay. They’re not broken they’re not bloody and they’re not wearing an oxygen tank. They look exactly the same, but they’re suffering.

 Is there a kind of joy that comes with allowing your loved one, and yourself, to change?

My mom became the safest person I could ever go see. As the disease progressed, she lost her ego. She had no need to judge. No matter what was going on, I could just be with her and be who I was. I didn’t need to hide it anymore. I didn’t need to hold back my emotions and feelings. She allowed me to be who I was in any given moment. Whatever the emotion I could trust her and be my true self. I knew that she would still love me and still be there. It was something unexplainable. My mom was the safest place to be my authentic self. I didn’t have to meet expectations because she didn’t have any.

As the disease progressed, she lost her ego… No matter what was going on, I could just be with her and be who I was.

And others held on to an old vision of your mom?

 One of my mom’s dear friends actually refused to visit her because it was too hard. So I met her for breakfast one morning and brought this DVD of my mom singing and dancing to some of her favorite music. I slid it across the table and this 76-year-old woman screamed out in the middle of a restaurant, “Oh my god, she looks horrible. Lori, I thought you were taking better care of her.” I burst out laughing.

I realized then that I didn’t see what she saw anymore. I didn’t see the Billy goat hair on her chin, I didn’t see the food splotch on her clothes, I didn’t see that her hair was messed up, I didn’t see any of that. I saw the glint in her eyes. I saw her dimples. I saw her huge smile, and I heard her giggle. But I looked at that picture and thanked that woman for pointing it out to me because I didn’t know I had changed on this journey. You do change. If you want to, you can find joy in these tiny moments that we overlook because we’re judging what it’s supposed to look like. If we can get past that, life becomes pretty darn precious.

Are there other specific memories following your mom’s diagnosis that you can share?

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The La Beys enjoy a laugh together.

There was an afternoon when my mom was asleep at the nursing home. She had just been moved to the lowest functioning unit, and I didn’t want her there. The truth, though, was that she needed it for her own safety. When I entered the room, there were two beds separated by a faint curtain and my mom’s was closest to the window. Her roommate was gone and as I walked into the room I could see my mom on the bed through this curtain. She had her pants pulled down to her belly button, her shirt tucked under her boobs, and she was only 5’2 but weighed 300 pounds. Her whole belly was showing. So I walked in and I just kind of chuckled because she reminded me of Garfield basking by the window. I said, “Oh Mom, do I have to pull out that bikini for you?” Out of a dead sleep my mom woke up, looked me square in the eyes, and with a big smile on her face said, “Lori, I don’t think I should be wearing a bikini.” Then she went back to sleep.

What did you do?

I sat on that bed and bawled like a baby. My mom hadn’t said my name in three years, and I didn’t know if she still knew it. At that point, I didn’t ask anymore because I had a 50 percent chance she wouldn’t remember and this would wreck her day and mine. But that was just a pure moment of joy. She still knew who I was. We still had a relationship.

One of the things I tell people is that we’ll only find what we’re looking for, and I have found over the years that we only remember three things: what saddens us, what causes us fear, and what brings us joy. What saddens us is usually what we’ve lost. What causes us fear is projecting into the future and the unknown. Where there is joy is in the moment. If we’re living in the past or projecting into the future, we’re missing the moment of joy before us. It’s all about being present.

This seems to require an unbelievable selflessness. How do you move beyond self-pity?

Well, we all think we’re being person-centered when we have a long list of things we’re doing for someone else. When I ask other care-partners what they need to focus on, people usually rattle off a list and we simply assume that they’re being person-centered.

I’m sorry, could you clarify what that term means?

Person-centered is an over-used word. To most in the industry, it’s caring in a focused manner where the needs of our loved one comes first. The trouble is that our emotional instincts put our needs ahead of theirs.

Where there is joy is in the moment.

Isn’t that a pretty normal response?

Yes, but until we remove it we can’t really love them. In response, I began to ask these questions, “Are they safe, happy, and pain free?” For care-partners, the need to feel like we are doing something, making a difference, allows us to avoid our true feelings, which typically range from fear to sadness to shame to frustration to resentment. These are feelings that say, if we’re honest, this isn’t how I imagined my life. In order to shift to being person-centered, I believe we have to focus less on our lists and more on our relationship with the person.

What do people not realize about being a care-partner?

Interestingly, people don’t realize they are a care-partner. They think of themselves as a spouse, daughter, son, or a friend. We’ve set up a society where acting as a care-partner is a negative thing. Who do you know that says, “Hey, sign me up for that one!” Unless their trying to have a child, that’s one of the only times people consciously ask to be care-partners. We look down on it because it’s a state of crisis instead a state of comfort.

When you speak to people, what do you try to leave them with? How do you finish these conversations?

Well, one of the things I emphasize is teaching people self-care. Society has told us that this is our job, and it’s these silent expectations that cause people to lose their identity. This happened to me. For me, I had girlfriends that would invite me to coffee and I would say I didn’t have time. One day I said I’d go, and I’ll never forget what I said because it was so cocky and inappropriate. I said, “Okay, I’ll give you ten minutes.” It was like I was the queen or something. I went there to get them off my back. We laughed and cried for two hours. I didn’t know how empty I was until I allowed myself to be filled. When you’re on this path, you don’t even know that you’re drained.

Again, we have to shift from crisis to comfort in caregiving. The only way we’re going to really be able to do that is by having authentic conversations and let people know what our real needs are. This work just knocks on your door and you can’t expect it. The trouble is that we still don’t know what dementia is really like. We’re peering through the window and guessing, so we need to continue to have conversations and start with those living the story: professionals, care-partners, and those diagnosed.

Neurological & Cognitive Disorders Profiles

Building His Plane In Flight

After a spinal stroke partially paralyzed him, Chicago actor Michael Patrick Thornton doubled down on giving back.

Staring into the shadowed abyss of his audience, Michael Patrick Thornton, sweating under the spotlights, remembers the first time he had a spinal stroke… an event which partially paralyzed him, and helped make his theater what it is today.

“When I got sick, my parents would have lost their house if not for my actors’ union insurance. My father, who was a policeman couldn’t believe it.” Michael breaks into an imitation of his father’s thick Northwest-side Chicago accent. “Oh, they’re picking up the bills? Wow, my son really is an actor.” The audience laughs.

Michael, co-founder of The Gift theater, is an acclaimed actor and artistic director, but running a successful, profitable theater lauded for the quality of its acting and productions is far from his end game. He sees theater as humanitarian missionary work, promoting the guiding principle that keeps him on the stage: if not of the religious sort, certainly of the humanitarian. His main guiding principle in his work is simply: love. And that love is something Michael isn’t entirely sure he would be able to express in the same way if he’d never gotten sick.

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“The double dimples and the heavy-brow-big-blue-eyes combo of a rom-com protagonist…”

With the double dimples and the heavy-brow-big-blue-eyes combo of a rom-com protagonist, Michael exudes confidence, even as he sits in his wheelchair at the end of a panel of fellow theater owners. Tonight, Michael is speaking on a panel for directors of small “equity” theaters, or theaters that hire unionized actors. “Going equity” is hard for small theaters because it means paying actors more. His audience tonight is actors and directors who are interested in potentially going equity, but even among his fellow actors, Michael keeps his audience laughing, even when discussing boring details like health insurance. 

When the panel ends, audience members approach Michael to talk. He tells one man to open a theater, but to be “extremely intentional” about where he was going to place it. “We spend a lot of time thinking about what art we’re going to make as opposed to why we’re making it in the first place,” he said later. “I’m most proud that The Gift has honored and reawoken the imaginations of a lot of people in a neighborhood that a lot of people gave up on.”

Actually, The Gift’s contributions to Jefferson Park—the neighborhood Michael grew up in, and eventually decided to locate his theater in despite it being what he calls a “there be monsters” neighborhood— go beyond imagination, ranging from intensive apprenticeships for high schoolers to sponsorship of the local little league team. Michael believes the arts have been “playing for far too long to the affluent”, and that society disservices itself by failing to provide poor neighborhoods with spaces for art and expression. The “anxiety and perverse anger from the lower-middle class against the arts” he believe boil out of a “vague sense of being abandoned.” Indeed, excellence is only the means; Michael sees theater as a “tool to democratize the consumption of art.”

During his panel, Michael explained that while going equity required endless financial planning and fundraising, he learned to treat it as a form of creative expression.  The Gift’s main operating principle is love, and going equity, after having his and his parents’ lives saved by his own unionized actor’s insurance, seemed like the only way to enact this principle.  

The principle of love goes back to an experience Michael had while getting sick, which he likened to the Buddhist idea of “satori” in which the false world opens up to expose the real world. Just before slipping out of consciousness and into a coma he muttered, “there’s only love.” He says he still doesn’t understand what it means entirely, but it was what lead to the founding idea of The Gift: “What if we, as actors, chose to love and never give up on each other?”

Michael standing in front of The Gift.

Michael in front of The Gift.

Although The Gift’s first production was way back in 2001, the theater still operates true to its original model. Michael’s ensemble regularly trains together in disciplines they’re unfamiliar with; recent visiting teachers have been a clown and movement expert. The practice cultivates vulnerability and trust–necessary ingredients cultivate what Michael describes a “willingness to look foolish.” Off-stage ensemble building, he says, is what allows his actors to go to emotionally demanding places together. 

To choose The Gift’s current program, Michael asks his ensemble if there’s an existing play that can serve as a “Trojan horse” for “what we are feeling right now as humans on the planet.” By staging plays that address what might be considered America’s psychic wounds, Michael believes that theater can help heal them.

The actor would know. Theater was what helped him pull through when he had his first spinal stroke in 2003, two years after starting The Gift at 23-years-old. Michael came out of this initial stroke damaged, but still with use of his limbs. That didn’t last. Ten days later, he would have a second stroke, which left him unable to walk; it also took most of the dexterity in his left arm and hand.

After leaving the ICU, Michael spent about 5 months in an inpatient care ward for children, since the adult ward was full. He says the kids saved his life, because while the adults were acting like their lives were over, the kids could still play. It inspired him. It was no time at all before Michael had returned to work, holding auditions inside the inpatient facility itself, while consuming play after play, looking for his next production. 

But while Michael tried not to let his new reality get him down, there were still psychic wounds to deal with. One of the most difficult aspects of dealing with his strokes  was that while doctors could assure him that he hadn’t caused them, they couldn’t tell him what had.“ We are creatures that need narratives, contextualization,” Michael says. “Especially when traumatic, black-swan events happen.” 

Consequently, Michael began to have regular panic attacks… attacks which exhibited the same symptoms as his strokes. This created a feedback loop of terror. Any small pain would make Michael think he was having another stroke, which would set off a stroke-mimicking panic attack.  “It was only until I stopped caring about the narrative that it went away,” he says.

It was theater’s Trojan-horse outlet to heal psychic wounds that finally allowed Michael to move on. At his “most fragile” point, Michael was playing Judas in the play Last Days of Judas Iscariot by Stephen Guirgis. In the play, there’s a scenew here Judas is frozen in a catatonic state, believing he’s in hell. He asks Jesus, “why didn’t you make me good enough so that you can love me?” It gave Michael the chance to ask the question he had never allowed himself to ask in life: “Why?”

The safe outlet to ask that question in the context of the play “was huge.” He stopped having panic attacks. Michael hadn’t allowed himself to ask why because he knew “it was just a hamster wheel; there’s no answer.” He states, slowly, deliberately: “And if you have one, it’s bullshit, because you’re choosing one story over another, and I can think of nothing more arrogant than to presume you know why something happened.”

Instead, he says, “there’s a tremendous value in choosing to live in a state of unknowing.” The deepest creative capacities, he insists, can only be reached during improvisation. Ultimately, Michael’s life philosophy is just what he told the theaters considering going equity. “Take the leap, then build the plane in flight.”

Neurological & Cognitive Disorders Q&As

Paralyzed by Multiple Sclerosis, A Writer Dictates His Novels

Acclaimed writer and guitarist Anthony Weller has been paralyzed from the neck down since 2010, but continues to pen novels by dictating to a live typist.

For two hours a day, Massachusetts-based writer Anthony Weller lies on his back, stares at the ceiling, and dictates to a typist the fictional “memoir” of Lorenzo Da Ponte, an 18th-century Italian librettist who collaborated with Mozart. Stricken with a rare and vicious form of Multiple Sclerosis a dozen years ago, Weller is paralyzed from the neck down. “Writing is the only thing I can still‘do,’” he says, though he can no longer type nor write by hand. Like many beloved authors before him—including Henry James, John Milton, Mark Twain, and Jorge Luis Borges—Weller dictates his work. Superhumanly prolific, Weller’s Da Ponte “memoir” will be his fourth book written using dictation.  

Born in 1957 in Macon, Georgia, Weller learned to read at four. Entranced by Peter Pan and The Wind in the Willows, he started writing little stories by age six. “I have a solid memory of lying on my stomach on the wooden floor of my room, scribbling away at a story on unlined paper, and of the satisfaction it gave me to put quotation marks around dialogue, because they made it look like the real thing,” he says. “I soon began clacketing away at my mother’s black portable typewriter from the 1940s. It took all the strength I had.”

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Anthony Weller on assignment during his journalism years, pre-diagnosis.

At thirteen, he published a poem in an anthology of science fiction. Postcards from his globetrotting father, the American novelist and Pulitzer Prize-winning foreign correspondent George Weller, stoked his desire to become a writer. His mother, a British classical ballet teacher, nurtured a love of music. Instead of settling for one passion, he would go on to dazzling careers in both music and writing. After studying jazz and classical guitar at Yale and moving to New York, he recorded with the likes of Stéphane Grappelli. Writing for magazines like The Paris Review, Forbes, and The New York Times Magazine took him to five continents.

In 2002, Weller began to experience the first symptoms of Primary Progressive Multiple Sclerosis, a severe, non-episodic form of the disease that never goes into remission. It moved from his feet to his legs, leading him to require a cane, then a wheelchair. It spread to his arms and hands, destroying his guitar technique. By 2010, he was unable to walk or play music. His wife, Kylée Smith, left her profession as a yoga therapist at the Boston Ballet to manage his constant care. Their resources were soon depleted. Now, a crowdfunding campaign on YouCaring.com, called “Hands for Anthony,” financially sustains the couple. It’s through this campaign that Weller has been able to continue writing.

Here, Weller discusses the perpetual fear that accompanies chronic illness, why no one ever asks him what it’s like to be paralyzed, how the dictation process affects his writing, and dreams about playing guitar.

How do you separate your physical illness from your sense of self? How do you keep a condition that’s ravaged your body from affecting your mind and your ability to write?

Determination. It’s better than watching TV until I die.

I suppose I’m “lucky” to have the more severe, rarer version of MS, which seems to leave the mind fairly intact amid a mercilessness toward the body.

How did you become a writer and a musician?

The cover to Anthony Weller's latest novel, The Land Of Later On.

The cover to Anthony Weller’s latest novel, The Land Of Later On.

The primary source of my writing was that I loved books from a young age. If I could devour [books] with the healthful gluttony and remorseless speed of boyhood, I might be able to at last consider myself well-read.  I used to wake through some internal pressure by five in the morning and read in bed until it was time to get up; and because schoolwork came easily, my main memory of early years in Macon, Georgia, is of lugging heavy piles of books home from the library every couple of days.  It didn’t matter to me, much, what I was reading; I could grind up anything and swallow it by sunrise.

My mother, a Londoner, was a teacher of classical ballet and also knew an immense amount about classical music and music around the world. She was interested in all musics and always favorable to whatever I brought home. This open-mindedness was a great gift to me, and kept my ears open to finding the music that was “right” for me. When I found the guitar, it seemed to attack me and therefore I wanted to attack back.

Many famous authors — like Henry James, Richard Powers, Milton, Mark Twain, Borges — dictated their work. What have you learned from these authors’ approaches?

In those cases, the writers (geniuses all) were able to rely on their memories when they had to. The chief drawback is you’re not able to control your sense of the whole; you have to rely on other people to turn pages for you, even if they’re only reading aloud a few lines of a sonnet.

The lesson? Not to give up. I have no excuse. They did fine, so can I.

How does dictating feel different from typing or writing by hand? Are there any aspects of the writing process that you think dictating improves?

For me, dictating hasn’t improved anything. I miss terribly writing by hand, which is a sensuous as well as a creative experience. Dictating doesn’t feel like anything else. Words can no longer dance in the hand, and if you don’t have your book’s voice, I can’t imagine that speaking them aloud will help you find it. I could be wrong, of course.

The lesson? Not to give up. I have no excuse. They did fine, so can I.

I tried dictating using software on three books, and switched for my most recent novel to a live typist, who’s much more efficient. No doubt it helped that this novel is a first-person narrative.  Unfortunately, whether you’re using dictation software or a live typist, there doesn’t seem any way around the problem of instantly having to verify what you’ve written, so the objective mind is always threatening the subjective mind.

How has your writing process changed since shifting from typing or writing by hand to dictating, both with software and with a live typist?

The problem with dictation software is if, like me, you have an unreliable voice, then you’re in a constant state of frustration and anger, and those aren’t fruitful even if you’re trying to compose a laundry list.

Writing for me was always a solitary activity, even when I did it in a crowded laundromat in New York to keep warmer than in my badly-heated flat. It’s no longer solitary. It’s important to get over any sense of shame or violated privacy if you’re using a live typist. Anyway, when you write you mustn’t worry about what other people think. Dictation to a typist rubs your face in that.

How does the revision process work when dictating novels?  

You’re constantly revising, alas, because you’re constantly checking what’s just been typed. It’s much easier to catch errors immediately, when you still remember what you thought you said.

Because it’s so difficult to look backward because I’m totally paralyzed, I’m at the mercy of my memory more than I’d like. Many nights I’d lie awake and think back on prior chapters and try to seize what I’d inadvertently left out, then remember these lapses so I could correct them.

What are some of your favorite books?

Too many to list. I like books that I wish I’d written, of course. And we all like books that are a bit off the beaten path.

Within the 20th century, I suppose my favorite fiction includes Mister Johnson (Joyce Cary), and just about anything by Cary. Anything by Chekhov, of course. His Monkey Wife (John Collier) and “Pale Fire” (Nabokov). A House for Mr. Biswas (Naipaul). Anything by Flannery O’Connor, who wrote about the Georgia where I grew up. Anything by V.S. Pritchett. The Swell Season (Josef Skvorecky).

I try never to complain, because complaining doesn’t improve anything.

I don’t keep up with what’s out there. I mainly look at favorite passages in books I’ve already read, novels and poetry and travel. In the last five years, for example, I’ve only read three superb contemporary novels—The Old Turk’s Load (Gregory Gibson), The Gold Eaters (Ronald Wright), and My Notorious Life (Kate Manning).

What do you wish more people understood about MS and your experience with it that they tend not to understand?

I don’t think people understand the torment you live with constantly. I try never to complain, because complaining doesn’t improve anything. In my own case, there’s the added certainty that I’ll never get better, today’s always better than tomorrow, and so on. Anybody who waits for a miracle cure is an imbecile. This is psychologically very tough on me, and of course on my wife.

Anthony Weller was an accomplished guitarist.

Anthony Weller was an accomplished guitarist.

In an op-ed for the Wall Street Journal, you write about how nobody ever asks you what it’s like to be paralyzed, and that this may stem from concern about hurting your feelings. Is this concern unfounded? Why are so many people uncomfortable with openly discussing illness?

I don’t know why people are so uncomfortable. Guilt, I suppose, at having dodged the bullet. Or worry that they’re next. Yes, this concern is unfounded, because if you’re paralyzed you’re forced to very rapidly get used to your situation and come face-to-face with it. It’s not as if somebody’s going to surprise you by pointing out the obvious. There’s not an instant in the day when you’re not fully aware of your limitations. If your elbow itches, you’ve got to get somebody else to scratch it. That implies there’s somebody else willing to do it, and it’s worth their time.

How do you still engage with music?
I still listen enthusiastically, and every night I imagine I’m still playing the guitar while trying to sleep. Beautiful dreams.

Neurological & Cognitive Disorders Profiles

Deep Focus

Known for his massive, photorealistic portraits, American artist Chuck Close says he owes all of his artistic success to his limitations.

Known for his massive, photorealistic portraits, American artist Chuck Close says he owes all of his artistic success to his limitations.

If Chuck Close had his way, we’d all walk around with name tags and short bios pinned to our chests. While riding on the subway, he once failed to recognize an ex-lover whom he had lived with for a year only two years prior. The 75-year-old artist has overheard people he’s known for ages call him an asshole and a stuck-up snob after he’s passed them by yet again.

Close doesn’t mean to be a jerk. Despite being one of the most widely recognized portrait artists, he simply can’t remember faces. All the parts—nose, mouth, eyes—don’t add up to a memorable whole in his mind. The National Medal of Arts winner has prosopagnosia, or face blindness, a condition that likely affects around two percent of the population. “You move your head a half an inch, to me, it’s a whole new face I’ve never seen before,” he told RadioLab host Robert Krulwich.

Growing up in Monroe, Washington, Close realized that he couldn’t recall faces when, at the end of kindergarten, he still couldn’t identify his classmates. Faces weren’t the only things he had trouble remembering. Severely dyslexic, he also wrestled with deciphering words, and he never managed to memorize the multiplication tables. To say teachers weren’t as aware of learning disabilities in the ’40s and ’50s as they are now is something of an understatement. “They just assumed that you were dumb or lazy,” Close said in a Brooklyn Rail interview. (Close never even heard the word dyslexia until the 1970s when he had children of his own.)

Photo by Joe Wolf.

Photo by Joe Wolf.

But from a young age, Close had art. When he was five years old, he asked for an easel for Christmas. And so his father, a sheet metal worker and tinkerer (he invented the reflective paint used on airstrips), built him one. Next he asked his parents for a Genuine Weber’s Oil Color Set that he discovered in a Sears’ catalog. “I can still, to this day, smell the cheap linseed oil in the tubes of paint,” Close recalls in Martin Friedman’s book, Close Reading. “They were fat tubes, not little skinny ones. I knew, even then, that the little skinny tubes were for dilettantes.”

By the time he was eight, the precociously determined artist was painting still lifes, landscapes, and best of all for young Chuck, nude models in a private art class. The experience made him the envy of the neighborhood, and solidified his destiny. As he said to Tilda Swinton in BlackBook, “I was drawing nude models at age eight, so I thought, ‘Why would I want to be anything else?’”

At school, his art skills worked as a social and academic lubricant, helping to smooth over the fact that he couldn’t keep up with the three Rs in the classroom or the other kids on the playground. In addition to his academic struggles, lifelong neuromuscular problems kept him from running or playing catch. To impress his classmates, he’d draw pictures of World War II airplanes and caricatures of their teachers. To show his teachers that he cared, he’d create elaborate art projects, like a twenty-foot-long mural of the Lewis and Clark Trail that he made for a history class.

Everything in my work is determined by my learning disabilities.

Despite his obvious focus and talent, Close’s eighth grade counselor told him to not even think about college and to set his sights on trade school or body and fender work instead. Close ignored that bunk advice and enrolled at the local junior college. He signed up for courses that allowed him to write papers rather than takes tests, hired a typist, and dictated his essays based on his memory of the class lectures. From there, he went on to receive a bachelor’s degree from the University of Washington and a master of fine arts from Yale University. Reflecting back on his counselor’s terrible direction, Close offered his own wisdom on “CBS This Morning”: “Never let anyone define what you are capable of by using parameters that don’t apply to you.”

Chuck Close's self-portrait. Photo by John Weiss

Chuck Close’s self-portrait. Photo by John Weiss

A few years after graduating from Yale, Close, a former de Kooning devotee, bucked the current Abstract Expressionist trend and began painting his now iconic portraits, or “heads,” as he calls them. Flatten a face out, like in a photograph or painting, and Close can recall it with nearly photographic precision. Close believes that this talent, along with his face blindness, drove him to paint portraits as a way to commit the faces of people he cared about to memory.

“Everything in my work is determined by my learning disabilities,” Close told Krulwich. “I don’t think it’s a coincidence that having face blindness, I paint people’s faces,” Close told another interviewer. “It’s my way of getting closer to people. When I paint someone, it’s always a person’s face I want to remember.”

Close has worked in a range of media outside of oil paint, including jacquard tapestry, daguerreotypes, and more recently an inkjet printer. Over the years, he’s created painstakingly detailed likenesses of many famous faces, among them President Obama, Bill and Hillary Clinton, the composer Philip Glass, Brad Pitt (who thinks he might also be face blind), and fellow artists Cindy Sherman, Robert Rauschenberg, and Jasper Johns.

Confronting a Chuck Close portrait up close is an experience akin to face blindness. The artwork is so massive, often 9 feet high, that it’s impossible to take it all in at once. Your eyes are forced to move across each feature — from a colossal eye staring back at you, to its lashes, to the crow’s feet below. These large-scale portraits would be hard for anyone to tackle, let alone someone who has difficulty seeing the big picture. To work around this problem, Close breaks each image down into smaller, workable components. First, he photographs his subjects. Then he creates a grid on the photograph and a proportional grid on the much larger canvas, dividing them both into thousands of corresponding pieces. From there, he often spends three to four months (sometimes up to a year) building the portrait square by square. Close has described the process as similar to Lilliputians traveling across a giant’s face: They don’t know that they’re on a giant, but they can see every detail of the landscape as they travel.

Since his Brobdingnagian, hyper-realistic breakthrough piece, Big Self-Portrait (1967–68), Close’s work has evolved to more mosaic-like paintings, where each square is a more defined unit. His palette has also gotten much brighter, in part because of a catastrophic event that occurred 28 years ago.

Photo by Torbak Hopper

Photo by Torbak Hopper

At the age of 48, Close’s spinal artery collapsed, leaving him partially paralyzed from the chest down. He was determined to paint again, even if it meant spitting paint at the canvas. “Physicality is so important to me in my work. Pushing paint around, that’s what I do,” Close told the Guardian. “But whatever it takes to get there, I’ll do it. That’s always been my way of thinking.” When he was back in front of the canvas, Close said he felt like the happiest person on the planet and he’s been celebrating the joy of painting extra hard ever since.

Even after 70 some years of pushing paint around, his recent work is just as, if not more, vibrant than ever. Today, he zooms around his studio in a motorized wheelchair and moves his large canvases into position with a motorized easel. Intensive therapy eventually helped him regain partial use of his limbs, and he paints with a brush strapped into a customized brace on one arm, like Renoir. After a lifetime of dealing with rocks in his shoes, Close describes these now decades-old adaptations as “just some other rocks being inserted in my shoes.”

Perhaps surprisingly, Close wasn’t always conscious of the motivation behind his relentless drive to paint faces. It was only after painting portraits for two decades that he began to wonder why the subject still had such urgency for him and he started to connect it to his disabilities. “What kind of personal urgency do you have any more than dealing with your deficits?” Close said in a studio interview with White Cube. “That’s who am. I am that person with these major deficits. I spent years trying to hide it. But that’s who I am.”

Neurological & Cognitive Disorders Q&As

Not Your Ordinary Santa Claus

Dressed in his trademark Kris Kringle outfit, photographer Andrew Wyatt photographs rock concerts and teaches special needs kids.

Dressed in his trademark Kris Kringle outfit, photographer Andrew Wyatt photographs rock concerts and teaches kids with special needs.

Andrew Wyatt wasn’t always a photographer, nor did he plan on becoming a special education assistant teacher.

He never really thought about putting on a sequined Santa Claus suit and taking photos at rock festivals, either, but that’s exactly what happened.

While Wyatt makes his daily bread from working with the challenging special education population at a local Boulder, Colorado high school, his passion is photography and making people happy.

Folks sat down with Wyatt, who also has cerebral palsy, to talk about his path in life, from being the son of a southern Baptist preacher to becoming a sparkly, rock ‘n’ roll Santa Claus.

Thanks for taking time to talk to me today.

I appreciate it. I got held over at work an hour later than I was expecting to, so I literally just walked in the door.

What is it that you do?

I’m an assistant special ed teacher at the local high school.

What do you do? What population do you work with?

It’s a high school population, and it’s a population of kids with varying degrees of physical and mental disabilities. We have some that are completely immobile and have no speech capacity. And then we have others that we actually will go to general education classes with the student and just assist as they take the regular classes.

I definitely want to hear all about your work with kids and what you’re doing now, but maybe give me a little background on where you came from.

It’s a little bit of an unusual story. I was the son of a Southern Baptist preacher. His name is Robert Paul Wyatt. I’m Robert Andrew Wyatt. I just go by my middle name.

I grew up in rural, southern Virginia. Initially, I became a preacher, myself.

I did that for a couple of years, and I was undecided as to whether I wanted to continue with preaching as a life-long career. In my indecision, a friend of mine asked if I would go with them to this festival in the desert called Burning Man, back in 2002. I went and my head was completely blown off. All the king’s horses and all the king’s men couldn’t put Humpty Dumpty back together again. It was just so out of my realm of experience. I grew up in a very small town of 500 people with a very conservative upbringing and community.

I came out of that and two things happened. One, I immediately realized that preaching was not for me. That the universe was a much larger place for such a narrow idiom as the Southern Baptist practice and faith. What I did then, though, was to start working with adults with disabilities in group homes. I did that for a while.

Burning Man blew Andrew Wyatt’s mind wide open. Photo: Andrew Wyatt

What drew you to that?

I still wanted to serve. That was the thing that was really impressed upon me by my upbringing–the need to do what I could to help others. There was a group home that had an entry level position with no experience necessary. I was good at it, and I enjoyed the work. I just continued working with that population until I got a job at a school.

Then, two, I found a career in photography. I had never picked up a camera before Burning Man in 2002.

What’s a typical day look like for you with the kids?

I work in a pretty large classroom of kids. We’ll have 20 people in our classroom this upcoming year. There’s a number of assistant teachers that are in that group. What happens is that we all get assigned a schedule. For example this past year, during several different class periods, I’ll be sent with different kids to different classrooms. For example, I went to a World Literature class. I went to an Astronomy class with someone else. I went to a Biology class. I go and assist with note taking and am available for answering questions. Then there will be other times where the lead teachers of the classroom for special ed students will have a main class with a large number of them. For a couple of the periods during the day, I’ll be in that main room and be assisting with whatever curriculum they’re teaching during that class period as well.

It’s very rewarding. I had a really cool moment here in Boulder last week. I went to an outdoor free concert on the main street in Boulder. I ran into several of my kids and a couple of them ran up and gave me hugs. Then as soon as one of the students (who is immobile without speech) saw me.  As I walked up, she broke into the widest grin and her home assistant called it the “Andrew Grin.” That’s how much she likes me. I get my own smile, basically.

Wyatt’s sense of humor comes across in his work. Photo: Andrew Wyatt

That’s so great. You have your own condition. Are you able to bring that into your work with the kids?

Absolutely. The first year that I worked at Boulder High School, I was assigned one-on-one with a student who has a pretty severe form of cerebral palsy, but is 100% mentally capable. She is unable to take notes because she can’t move her arms. At first, she just didn’t trust me. She didn’t want me to help her. One of the ways I was able to bridge the gap and bridge the frustration that she was having was to open up about my own cerebral palsy and explain that I had a few road blocks of my own and it just created a little bit of empathy. Even when she was pushing the hardest against me, I just let it go and I’d wait it out. I was patient. I just said, “One of the reasons why I’m committed to helping you in whatever ways you want is because I have a little bit of understanding. Just a little bit. But even a little bit helps.” That kind of helps melt the ice as it were a little bit.

I bet any kid in that program is going to respond to that sort of disclosure.

Oh, yeah. I show the kids I can’t move my fingers in my right hand individually. I can make a fist, so I can move them all at the same time, but I can’t move them as if I were playing a piano, for example. I can’t lift my index finger up separately from all the others. Our kids are very fascinated by that. They’re like, “Whoa, that’s crazy!” I don’t hesitate because it does show a little bit of We’re all in this together kind of feeling.

Because we are.

Right. Because we are.

Photo: Andrew Wyatt

How do you go from working with kids with special needs to photographing the Flaming Lips? Those are two completely different vibes there.

One of the cool things that I get to show the kids is that when I take pictures with my camera, I can’t use my right hand to push the button, and the button’s on the right-hand side. So, what I do is I actually use my left hand and curl it around underneath the bottom of the camera and use my left index finger to push on the button.

That’s your adaptation.

Exactly, and I get to show them: Just because we have a difficulty using x, y, or z, we can work our way around them. Let’s see if we can sit down and work our way around this. That’s another bridge.

It’s a real concrete example.

As to the photography itself, I’m not even sure how it happened. When I went to Burning Man, it was just unbelievably beautiful: the landscape, the sunrises, the sunsets, the costumes, and the massive art structures. I just wanted to document it. I just started snapping pictures and friends of mine would tell me when I showed them, “These actually look pretty good.” You go to a festival, like Burning Man for example, and you can’t really take a bad picture. People were just telling me, “It seems like to us that you have an eye for this.” I just decided Well, let me just try it.

At the time, I was living in Jackson Hole, Wyoming, so I was thinking I’ll go on hikes in the Tetons. Or I would go to the county fair or the 4th of July parade just to see if I could take good composition photos. One day, somebody tapped me on the shoulder at the fair, I believe it was. This gentleman behind me said, “Hey, I see you around town with your camera a lot. We’re a new newspaper and we need a photographer. Would you like to submit some photos?” It was kind of crazy. I submitted a few and they liked my work, so they actually hired me on. When I was covering all the local events, concerts were a part of the scene there. That’s part of what they cover in their arts and entertainment section. I really liked doing it, so I decided that I was going to take five months off. During that five months, I just applied for music festival photo passes. I didn’t know if I was going to hear back from any of them, but it turns out I got approved by all of them.

Photo: Andrew Wyatt

Be careful what you wish for, right?

I know! It was crazy. I had to fudge one. I remember the first time I shot Bonnaroo, it’s such a huge festival that their requirement is that you have to be working for a publication of 50,000 or higher. Obviously, there may be 50,000 people living in the entire state of Wyoming, but that’s a stretch. I fudged the numbers, and I was like, well, if they check on it and they bust me, I just won’t go. But they didn’t. From then on, I was good. I got in my car, loaded everything up, and I just went from festival to festival. I started submitting to little online music magazines who also liked my work.

You’ve never had any formal photography training? It’s all self-taught?

Nope. Never did.

Tell me a little about the Santa suit. I bet it gets all the girls.

Being dressed as Santa during his photo shoots has become Wyatt’s brand. Photo: Andrew Wyatt

I’m married now, but at one time it was definitely a magnet for sure. Here’s how it happened: the first music festival I officially got a music pass to was in 2005. It was in Las Vegas. It was put on by the Bonnaroo people. This was the fall before I did my big five month road trip experience. I wanted to get one music festival photo pass, go to it, see if I did it right, and that was when I would make the leap. I needed a costume, though, because it was a Halloween music festival. It was a big event. Everybody was going to be in costumes, and I just looked online and found this Santa suit. I was only planning on wearing it for that festival, but everybody loved it. They wanted me to wear it the next day and wear it again the next year. So, I did. Then it just stuck. I just made sure that on at least one night during every festival I went to, I would wear the sequined Santa suit.

It’s your brand now, right?

It really is. That’s what’s so funny about it. Now people expect me to have it wherever I go. That’s the other thing people don’t realize either. I don’t really want to wear this thing every day. It’s funny on a day when I’m wearing something else, and they’re like How come you don’t have the Santa suit on?

You’ve got this amazing life. What’s the secret? What would you tell your students?

That’s a very good question. Wow. What do I tell the kids?

I guess I just try to enjoy life, really. Honestly, I work in a job where I can enjoy being with people and having fun with them. The photography is the same thing. Even the Santa suit–what I like to do is make people happy. That’s what my whole life, I feel like, is about. It’s making people happy. I really like that. The Santa suit makes so many people happy just to see. I’ve even worn it for my kids. During the Christmas season, I’ll come and wear it to school one day.

Photo: Andrew Wyatt

The secret to your success is to make people happy.

I would say so.

I think one of the other things in this regard is that if someone had told me, for example, that I could never pick up a camera because of my disability, I probably never would have. I just never let my life be determined by things that I couldn’t do without at least trying them first. I think even that year that I quit my job and decided to just start hitting the road photographing musical festivals, I wasn’t a music festival photographer. I didn’t know that I shouldn’t quit a job that was a steady income and fly by the seat of my pants. For me, taking risks is the reward for living. I would have been a whole lot less happy and would have been a whole lot less helpful to others if I weren’t willing to take chances. Sometimes I took chances without really realizing what the risks are, and it’s much easier under those circumstances, but even after having fallen on my face a few times, it still ends up being worth it.

All photos by Andrew Wyatt.

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.”