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The Cyborg With Lou Gehrig’s

At 36, Eric Valor was diagnosed with ALS. Now, he's using technology to carry him where his body cannot.

When Eric Valor sits down to write, his hands do not move.

Under the active inspection of something called eyegaze software, Eric flicks his eyes across a digital display while an infrared camera tracks their movement and registers their precise location. When the screen displays a keyboard, a glance that lingers on a specific letter for half a second registers a click – this is called “dwell-time” – and letters populate the display.

To complete this interview, Eric wrote 26,038 characters over a series of emails. With his dwell-time down to around 0.3 seconds, he is left with two hours and ten minutes of typing. He completed this task from his office chair: a bed that holds his paralyzed body and lies empty only when Eric’s caregivers lift him from it with a battery-powered winch.

[Eric] has made a name for himself as a kind of human cyborg, as technology carries him where his body cannot.

Eric has amyotrophic lateral sclerosis (or ALS), a nervous system disease that weakens muscles and gradually reduces physical movement. Would-be advocates are rendered silent by the condition, their voices trapped and frozen along with the rest of their bodily functions. Most associate the condition with either a chilling bucket of ice water or the moment when Lou Gehrig leaned into the microphone at Yankee Stadium and told baseball and the world that he “might have been given a bad break, but I’ve got an awful lot to live for.”

Eric knows it as the disease that disabled every muscle in his body save those that move his eyes.

About two decades ago, Eric waded into the Bay Area’s burgeoning tech scene and found success working as a self-taught programmer and IT specialist. From his home in Santa Cruz, Eric’s life was quiet and contained, defined by his work of “keeping machines alive” and long afternoons spent surfing. He jokes that these machines are now giving back.

From his office chair, Eric works twelve hour days for nine different organizations dedicated to providing hope and answers for other people with ALS. He’s made a name for himself as a kind of human cyborg, as technology carries him where his body cannot. His eyes have become his voice. Folks caught up with Eric to learn more about his prodigious work ethic and the driving purpose behind it.   

Eric Valor before his diagnosis.

Prior to your diagnosis, what did you know about ALS?

I ironically joked about my condition being ALS and saw the deathly pallor which washed over [my doctor’s] face…

Precious little. I knew it was a nervous system disorder which had slowly crippled Professor Stephen Hawking, and that it was named after Lou Gehrig, the famous New York Yankees baseball player. Beyond that, I had no idea what I was facing. During my first checkup with a local neurologist, I ironically joked about my condition being ALS and saw the deathly pallor which washed over her face. I then looked it up online. I can still remember the flood of panic I felt when I realized what I was facing. That’s when I began learning everything about ALS so that I could find a solution to the problem.

I read on your blog that everything you had “built, bought, saved, or enjoyed in [your] life was taken from [you] or consumed by this disease.” It’s difficult to imagine loss of this scope. Could you describe what this looked like on a daily basis?

It happened over the course of about 6 years. Every couple of months, another major muscle group would fail or be very close to it. For the first two years, it was pretty much business as usual. I was still walking and could conceal my condition. I hid carbon fiber braces to keep my feet from drooping and tripping me as I walked. It was only when I was forced to use a cane and then crutches that I could no longer hide it. By that time, the house my wife and I had purchased six years earlier was no longer practical because it was full of stairs. We moved about a mile away to a single-level ranch style house

How did your friends and coworkers respond?

My office was magnificent in accommodating my needs as I became wheelchair-bound. But in early 2008, I could no longer grip a computer mouse and officially retired. The stress on my wife had been growing and compounded every day. In late 2010, she could no longer take the anguish of watching the world which I built around her, around us, disintegrate and she left. We had gone through all the money we had saved paying for 24/7 caregivers, including the equity in our house and we had moved in with my parents. That completed the loss of everything–my car, my career, my lifetime savings, my house, and most of all my marriage. I easily let go of all the material things but the loss of my marriage was a blow from which I am still recovering.

You have two options: Create another life or die. The latter is out of the question.

So what do you do when the life you knew truly no longer exists?

You have two options: Create another life or die. The latter is out of the question. My general practice doctor was helpful in telling me that if I planned to continue living I needed to craft another identity for myself. I have since become an ALS patient, advocate, scientist, and support provider. That gives me plenty of purpose.

Chronic disorders seem to have a way of redefining a person whether they like it or not. Has ALS changed who you are on some fundamental level beyond daily routine?

Eric on tour in Paris.

Yes. I have become a bona fide scientist actively working on a treatment for this disease through the research organization I created, something I would never have otherwise contemplated. I have become a quasi-celebrity in the ALS community because of my acquired knowledge which I share and my drive to keep ALS in the public eye in order to drive more demand and donations for research into effective treatment options. My previous life experience and acquired skills have all prepared me for this, putting me in a unique position to drag ALS out of the shadows. Whereas I was perfectly happy with my anonymous little life with an IT career, a wife, and a cottage on the coast, I am now a neuroscientist and a very outspoken advocate for awareness and research.

It’s interesting that you describe yourself as “dragging ALS out of the shadows.” This can’t be easy work. Why is it so essential?

I think it’s very important for me to share my experience so more people understand what ALS is and why research for an effective treatment is so necessary. ALS has about the same incidence rate as Multiple Sclerosis, but because there are several treatment options for MS there are millions of people worldwide living with the condition. And while MS takes between 5-10 years off a normal lifespan, ALS kills within 2-5 years. There is no known risk factor except age, and most people with ALS are diagnosed between the ages of 50-60.

I think it’s also important for me to show other people with this condition that, with a little bit of technology added to their lives, they can go on living and being productive. This is why I call myself the world’s first fully-functioning cyborg. I spent years keeping machines alive and happy – now it’s their turn to give back.

I spent years keeping machines alive and happy… now it’s their turn to give back.

Could you elaborate on the importance of technology to a person with ALS?

For people with ALS, technology like my eye-gaze software symbolizes life. Period. In order to interact with others, express a need, compose a symphony, or answer interview questions, requires communication. Humans require some level of interaction to remain sane. Just ask someone sentenced to solitary confinement. As people with ALS lose their ability to move and to talk, the eyes are usually (not always) spared the paralysis. So technology is our only savior from the ultimate solitary confinement. Three of my close friends who had this condition lost their eye movement and quickly decided to succumb to ALS. Like me, all three were on mechanical ventilation order to breathe. Yet what truly kept them alive was their ability to communicate. If I didn’t have this available, I would have taken a first-class ticket on the Morphine Train to Dirtnap Town some time in 2008.

What does your average day look like?

I work quite late in the night so usually wake up around 12:30 in the afternoon. My morning caregiver turns on my computer and conducts range of motion exercises and stretching to keep my limbs loose. He then pours lunch down my PEG tube while I check my email. I usually answer any questions from other people with ALS and check in on any outstanding business that needs doing in my volunteer groups or my research organization.

Often by then it’s time for my shower routine. My afternoon caregiver and another who comes in to help out with showers lift me out of bed and place me in my rolling reclining shower chair. In the shower chair, I am shaved with an electric razor and given my daily cough-assist therapy. This is a machine with a hose attached to my tracheotomy tube which gently pushes air into my lungs then quickly sucks it out. This simulates a cough, which I cannot do because my diaphragm muscles are paralyzed. I am then rolled into the shower, my teeth brushed, body and hair bathed, dried, and put back into bed where I do all my work and online socializing.

I then get back to work, answering interview questions like these, writing any research papers or blog posts, Quora answers, tweets, Facebook interactions, etc.

“For me, nothing has changed post-diagnosis,” says Eric. “I still have purpose.”

That’s an impressive regiment. How do you wind down?

Between 3-5AM, depending whether I have my stuff done and have myself shifted over for sleep by my overnight caregiver. I require 24/7/365 caregivers because if something goes wrong with my ventilation machine – buildup of phlegm which must be suctioned out of my trachea and mouth every so often, the air hose pops off, power goes out, anything unforeseen – I need immediate assistance. Any interruption of air flow means I am dead in about 3 minutes.

And then I wake up in the afternoon and repeat the process. Every day is a little different. I can still “travel” online and socialize. My girlfriend and I chat during the day and most weeknights. On the weekend, she comes over and we make cocktails, watch TV shows or movies, and have some quality time.

You seem to approach this work with a profound sense of purpose. What advice do you give people who find themselves in a similar circumstance and are searching for meaning?

With a little technology, we can replace our lost abilities and even improve remaining ones. That’s the job of technology.

For years I had valued the things society tells us to, like money, status, and possessions, and was not satisfied because I was always lacking in “something.” All that stuff I had been seeking were all external validations.  Money, status, and possessions are worthless for happiness.

For me, nothing has changed post-diagnosis. I still have purpose. Before my diagnosis, my purpose was to make a happy life with my wife. Things were fairly simple. Now, my purpose is to help find an effective treatment for ALS and along the way share my acquired knowledge and experience with other people with ALS more newly diagnosed so their struggle can be eased.

I tell the newly diagnosed that loss of movement does not diminish us in any way. With a little technology, we can replace our lost abilities and even improve remaining ones. That’s the job of technology. I then try to explain that life can continue if they so desire, and use myself as an example. Life would have a few more complications but they could all be managed. Nevertheless, many still choose to succumb. Each death I take as a personal failure and loss. I continue to be a resource for knowledge and personal guidance for those who choose to remain.

Profiles

Meet Steve Gleason, The Former NFL Superstar Tackling Lou Gehrig’s

A decade after his punt block symbolized a city’s recovery, a retired football pro with ALS is immortalizing himself in film, to be remembered by his child.

Ten years ago, when the New Orleans Saints returned to the Louisiana Superdome for the first time after Hurricane Katrina, one play defined the game.

Just 90 seconds into the first drive, Saints safety Steve Gleason blocked an Atlanta Falcons punt attempt. His teammate recovered the ball for a touchdown, and the Saints went on to beat their division rivals by 20 points.

Many fans saw the play as a signal of the city’s post-hurricane comeback, and Gleason earned celebrity status in New Orleans.

On the fifth anniversary of that famous game, Gleason announced his amyotrophic lateral sclerosis (ALS) diagnosis. Doctors had confirmed his condition earlier that year, just six weeks before his wife, Michel Rae Varisco, found out she was pregnant.

gleason_hkpull_064

Steve Gleason of the New Orleans saints.

Also known as Lou Gehrig’s disease, ALS is a neurological condition that destroys nerve cells and ultimately causes disability. As the disease progresses, it impacts the muscles used to move, eat, speak and breathe. According to Mayo Clinic, respiratory failure is the most common cause of death for individuals with ALS, and that typically happens approximately three to five years after diagnosis. Some patients prolong their lives with a tracheostomy, where surgeons create a hole in the neck and equip the individual with a respirator that inflates and deflates the lungs.

After Gleason’s ALS initial diagnosis, he and his wife regularly recorded video diaries for their child–and, in the process, chronicled four years of Gleason’s physical decline. From that footage comes the documentary, Gleason. Following a 2016 Sundance Film Festival premiere, it was released on DVD this month and will be available on Amazon Prime Video in December 2016.

That’s Steve Gleason. He marches to the beat of his own drummer.

Deeply personal and poignant, the film follows the family through Gleason’s diagnosis and the developments that follow. It documents the desperation the former professional athlete feels as ALS paralyzes his body; it also spotlights the challenges that Varisco faces as a partner, caregiver and new parent. But, optimism shines through, as well. From the birth of their son, Rivers, to lessons on living in the moment, to lighthearted jokes in even the most physically awkward situations, “Gleason” is a story of joy and hope.

Scott Fujita, Steve Gleason’s former teammate and close friend, was a co-producer on the film. The two first met during an off-season training session, shortly after Fujita signed with the Saints.

Steve, his wife Michel Rae Varisco, and upside down baby.

Steve, his wife Michel Rae Varisco, and upside down baby.

“I looked into the field house and there was just one long-haired guy in there, with the lights dimmed, doing yoga,” remembers Fujita. “I asked my teammates about it, and one of them said, ‘That’s Steve Gleason. He marches to the beat of his own drummer.’”

The pair played together until Gleason’s 2008 retirement, and stayed in touch after Fujita’s career took him to the Cleveland Browns. He was back in New Orleans for a game against his former team when Gleason first mentioned that he was experiencing unexplained muscle spasms. The symptoms sounded uncomfortably familiar to Fujita, who’d lost an uncle to ALS 15 years earlier.

Within a few months, doctors confirmed Gleason’s diagnosis.

“I remember where I was standing at the very moment Steve called with the news. I knew it was possible, but it didn’t seem real until I heard the words coming out of his mouth,” says Fujita, who also remembers Gleason’s pledge to keep ALS from destroying his life.

 

Steve and friend Scott Fujita debuting Gleason at SXSW.

Steve and friend Scott Fujita debuting Gleason at SXSW.

Just days after the diagnosis, Fujita, Gleason and a few friends completed a sunrise trek to the top of San Francisco’s Twin Peaks. Weeks later, Gleason and Varisco set off on a driving tour through Alaska. On the one-year anniversary of his diagnosis, Gleason went skydiving to raise money for Team Gleason, the nonprofit he founded to empower individuals living with ALS. In the months that followed, he and his family attended national sporting events, hosted fundraisers and even traveled to Peru to hike Machu Picchu. A 21-member group organized through Team Gleason included Rivers Gleason, then just 18 months old, Michel Varisco and two ALS patients in wheelchairs. Fujita was among the friends and caretakers who carried Steve Gleason’s chair up the rocky trails.

Throughout all those adventures, the cameras were rolling.

“Steve has always had a creative mind, and he’s always been one to record things,” Fujita explains. “When he started having symptoms, he had a feeling that whatever was happening might turn out to be something big. He started documenting his symptoms on film, but at that point, there was really no plan.”

Plans quickly crystallized, however, once Varisco learned she was pregnant.

“Steve said, ‘If the experts are right about the timeline, and I only have two or three our maybe four more years to live, I need to share myself with this unborn child right now.’ That’s when he turned the cameras on himself,” says Fujita.

‘I need to share myself with this unborn child right now.’ That’s when he turned the cameras on himself

For about two years, Gleason and Varisco filmed video diaries intended only for Rivers. When they decided to share their story with a wider audience, they enlisted the help of director J. Clay Tweel. He and his team sorted through more than 1,300 hours of footage to create Gleason, including clips shot by filmmakers who lived with the family once Gleason could no longer hold a camera.

Tweel’s 110-minute documentary incorporates scenes from the family’s travels, daily activities, doctor visits and personal discussions, plus perspective from their friends and family. Steve Gleason also directs monologues to his son, sharing fatherly advice on everything from building campfires and skipping rocks to spirituality and dating. Additional clips document Gleason’s difficult conversations with his own father.

Steve hugs Scott Fujita at a Super Bowl Ring Party, thrown in 2011 in Steve's honor.

Steve hugs Scott Fujita at a Super Bowl Ring Party, thrown in 2011 in Steve’s honor.

Gleason and Varisco talk candidly about their fears and feelings throughout the film. In one particularly moving scene, Gleason struggles with the fact that he can no longer speak. Thanks to that sort of intimacy and honesty, the documentary offers an intensely powerful look at the impact of ALS.

“With more than 1,300 hours of footage, we could have told any one of a hundred different stories,” Fujita says. “For Steve and Michel, the story goes beyond ALS, beyond football, and beyond the cliché tale of overcoming adversity.”

Fujita attended several screenings of “Gleason” this summer, and participated in a number of post-film discussions with audience members. The themes that resonated with viewers touched on topics ranging from parenting to strengthening relationships to using art as therapy. Varisco, who started sketching to ease anxieties and pass the time while waiting in medical offices, sold some of her pencil drawings at a Sundance Film Festival event and now shares her art in an online gallery.

At one screening event, a father stood up and said the documentary had inspired him to reconnect with his estranged son. At another, a room filled with ALS caretakers, patients and family members gave Varisco a standing ovation for bringing attention to their unique challenges. Elsewhere, nurses expressed a renewed sense of purpose.

A candid moment with Steve and his family at home.

A candid moment with Steve and his family at home.

“One woman stood up and said, ‘I want to thank Michel for humanizing my patients. Tomorrow, when I make my rounds, I’ll remember that they are not just a number on a card,’” Fujita says.

At one screening, a viewer asked Varisco what she wanted people to take from the film. “I hope people get whatever they need,” she said.

“Everybody is taking away something different,” agrees Fujita. “The story seems to be sticking with people, though they often walk away struggling to articulate exactly how they feel. They feel uplifted, but also crushed. They’re saddened and angry that more hasn’t been done to fight ALS, but they’ve also just cried their asses off and laughed their asses off in a room full of strangers. It all just sits with them for a while, and then they generally wake up the next morning feeling motivated and inspired.”

Steve Gleason continues to inspire those who view the film and hear his story. Nearly seven years after his initial ALS diagnosis, he breathes with a ventilator (he opted for a tracheostomy in 2014) and uses eye-tracking technology to communicate from his wheelchair. A team of caregivers assists Varisco and Gleason on a daily basis, and his physical decline has mostly stalled.

“I believe my future is bigger than my past,” Gleason says.

Gleason attended a few screening events held in conjunction with this summer’s film release, sometimes joking about buying tequila shots to help viewers through the intense scenes. He remains involved in Team Gleason, raising funds for ALS awareness and research, and he advocated for the Steve Gleason Act signed by President Obama in 2015. The bill makes vital communication technologies available to ALS patients on Medicare and Medicaid.

Gleason also continues being an active father to Rivers, who turned five in October. And, this fall marked 10 years since the retired football star blocked the post-Hurricane Katrina punt in New Orleans.

Early in his namesake documentary, Gleason makes a statement that could easily double as a tagline for his life, the film and his current attitude, as an individual living with ALS.

“I believe my future is bigger than my past,” Gleason says.

Profiles Uncategorized

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.”