Steve Gleason on his life with ALS, mission for a cure

Typing with your fingers or thumbs is sooooo 2012.

I tweeted that earlier in the year. I type with my eyes. Not only that, I navigate my computer, create and play music, keep a calendar, conference call, lead web X meetings, text and, obviously, tweet with my eyes.

Crazy, right? Actually, not as crazy as you may think. Cell phones, tablets, TVs and computers are all beginning to incorporate “eye tracking” technology. Someday soon we will all navigate computers with our eyes. When that day comes, remember you saw it here first. Keeping this perspective helps me think of myself less as disabled and more as a trendsetter.

I also have automation in my house that allows me to open doors, turn on lights, open blinds, change the thermostat and turn on TVs. I do my best to try to think of myself as super-abled, rather than disabled. About the only things I cannot control in the house are my son, Rivers, and my wife, Michel. She is fierce like a bolt of lightning, and he takes after her.

So, how does this technology work?

I have a tablet PC attached to my power wheelchair. This tablet, my command center, sits about 18 inches from my face. At the base of my tablet, I have a black bar that houses infrared cameras that track my pupils. From there, I have a toolbar on the right side of my tablet screen that has mouse commands: left click, right click, double click, etc. So, I look at my on-screen commands for half a second, and those commands select. Then I look wherever I want to click on screen. For example, if I want to minimize my Spotify application, I look at the “left click” command, then gaze at the app’s minimize button. If I want to read today’s MMQB column, I select the scroll button from my on-screen commands, then gaze at an area in the column. The technology senses where my eyes are as I read, and automatically scrolls down the page accordingly.

Sweet, right?!

It works the same way with my keyboard. This is how I speak: I type whatever nonsense comes to mind, click “speak,” and a synthetic voice that sounds hauntingly like my old voice belts out the nonsense for all to hear.

I can crank out about 20 words per minute. For 4,500 words, that’s almost four hours to finish this column.


I have been diagnosed with Amyotrophic Lateral Sclerosis (ALS).

It’s a terminal disease with an average lifespan of two to five years post-diagnosis, and scientists don’t know what causes it. ALS prevents your brain from talking to your muscles. As a result, muscles die. As a result, every 90 minutes people die. I am a person.

ALS does not affect cognitive process. Stephen Hawking, one of smartest people on the planet, has ALS. It rarely affects the eyes. It doesn’t affect senses like hearing, taste and touch. I cannot move them, but I can feel, and very much enjoy when you take my hands in yours. No, you do not have to yell, or use one syllable words. I can hear you, and I have above average intelligence. Still.

I think we will find a cure only when the world clearly understands what ALS does and how to help. This real life example may help you understand ALS.
For those reading at home, experiment in real time. Grab some dental floss and an old sleeping bag. Unroll the sleeping bag and get all the way in. Head first. Now try to floss your teeth, struggling to move in that restricted space. Did you feel a sense of panic, or frustration, like the more effort you gave the harder things got? Were you short of breath? These are all very real phenomena for ALS patients. Let me know your emotions going through the experience on Twitter. The first 25 people that email video of the trial will get a t-shirt/wristband package.

So, how does a person react when he or she learns there are two to five years left with which to live?

Denial. Frustration. Anger. Despair. But at some point, I understood that acceptance of this diagnosis was not admitting defeat. That was critical for me personally. I think our lives are enriched when our own death is a conscious thought. I am not saying we should obsess over this, but it can be useful, because it makes you focus on the things and people you truly love. After that realization, I started to dig in, to look forward to what might be in my future.

Because ALS research is underfunded and under-resourced, patients end up fading away quietly. I did not want to fade away quietly.

Then I noticed something unique about a handful of ALS patients. They were living beyond the two-to-five-year estimate. A small fraction of ALS patients progress very slowly. These people went beyond that. They were choosing to go on ventilators, and continue with life. Years. Decades! I was shocked.
These people were not fading quickly or quietly.

I realized these patients had three crucial elements to help them: the right support, the right technology and purpose. They had things they were so passionate about, they were willing to go on a ventilator to continue to pursue them. A perfect example is O.J. Brigance, Director of Player Development for the Ravens. O.J., who has become a mentor to me, is not dying from ALS. He is choosing to live with ALS.
After my diagnosis, I was determined to gather the right support, the right technology and continue living a purposeful life. For decades, despite the progression of the disease.

Michel and I made some decisions. We were passionate about having a child. And so Rivers was born in October 2011. Ten months after my diagnosis. I was a few months from completing my MBA at Tulane University. I was passionate about the courses, and made some friends for life during my time there. I chose to finish. I love adventure travel. So, Michel and I bought a sports mobile (think of a camper van on steroids) we nicknamed the Ironhorse, and drove from New Orleans to Alaska and back. I thought I could help other people live with ALS, so we started a non-profit dedicated to that.

I am well into the disease progression. I am unable to walk, talk or eat. In some ways, this stage of the process is less frustrating than previous stages. I often feel normal. I forget that it’s weird to eat through a tube or be in a wheelchair. Still, I can’t deny that it’s a struggle. In the words of Peter King, “This blows.”

I sit somewhere on the razor’s edge. I am so happy to hear my son say, I love you dadu. So happy I want to explode. But I also have fleeting, but agonizing moments of frustration as I watch my friends throw him giggling in the air. I just want so badly to hug him like I used to hug the people I love so much, to brush his hair or hold his hand.

The film The Diving Bell and the Butterfly, based the book of the same name, has a line that enlightens and comforts me. The protagonist, who has lost all ability to move except one eye, discusses his role as a father. He notes, “Even a fraction of a father is still a father.”

So we focus on creative ways to help me interact on intimate levels with Rivers. He sits with me every morning when he wakes up and every night before bed. He takes “walks” with me in my wheelchair. We have a Spotify playlist, and a YouTube channel. I pre-recorded me reading books early in my diagnosis, so we watch me read to him. He is learning sign language, and we watch live music videos. He now gives me high fives and helps me shower.

Football and ALS.
Current research shows that NFL players are more likely to have certain brain diseases. Additional research shows there have been 27 players diagnosed with ALS in the past 60 years. But it’s important to note that more than 27 ALS patients, none of whom have ever played football, will die in the next two days. For me, this disease is global. It affects any race, gender or walk of life.

But if football did, somehow, cause my ALS, what does that mean for my life?

As humans, we are able to conjure and attach meaning to almost any circumstance or development. When handed what feels like a terminal diagnosis, it’s human nature to ask, Why did this happen to me?! or What does this mean?!

The question What caused this? can usually be analyzed and measured precisely. (Scientists are still working on defining the cause of ALS, and I am not sure if football caused my ALS.) On the other hand, interpreting meaning is, in my opinion, quite ambiguous. We cannot measure, verify or confirm meaning. We, as humans, create and apply meaning. When something happens to us, we become the author of meaning. The best philosophy I have adopted is to apply a useful and productive meaning, rather than a negative or destructive meaning, regardless of the circumstances in my life.

So, I have conjured my own meaning from my circumstance, if in fact football did cause my ALS. It means to me that I gave my life helping a city and a region in ruins find some hope in their struggle for rebirth. I will never regret that.

The document of my life.
As I was going through the diagnosis process, which took several months, I began video-journaling. At the same time, Michel and I were going through in vitro fertilisation, which ultimately led to Rivers’ birth. It was crazy to see the process of creating a life simultaneously with a diagnosis to end another happen side by side. My first video journal was in October 2011. Until recently, I had not looked at the journal since recording it, and had forgotten what I said. It’s about 15 minutes long, and there’s some shifting of posture as I share my fears, hopes and amateur understanding of ALS. Our house is empty and silent, so my voice echoes a little too much. It’s still daylight, but the light is soft and starting to fade. I still look strong and talk quickly, maybe too quickly, and quietly, a touch of defiance in my voice.

What strikes me as I watch my old self, is the last line before I turn the camera off.

I do not know where this is going … but, I believe with patience and persistence and perseverance that the outcome of the story is going to be a pretty amazing thing. And I do believe that in five years I’ll look back on this video and say, “Wow, that was the beginning of this journey that has turned out so much for the better in my life.”

At the time, I had no true concept of the difficulty and struggle ahead.

Since that afternoon, I have completed about 400 video journals. They include updates on my progress, stories from my past and life lessons. They’re quite powerful, and incredibly therapeutic for me. I am halfway to the big five-year mark, and I can say with honesty that I have been bettered by the experience.

Beyond the journals, I have made an effort to document life and my family’s journey. We have 10 terabytes of footage, which will eventually become a documentary that shares our story with the world.
Here is the transcript from my most recent journal. For a little background, I have reached out, both publicly and on an individual level, to people who have lost parents while they were young, to see what they wished they knew, but didn’t, about their parent. By far the strongest response was to learn more about why that person’s dead parent loved his or her living parent. I have told several of these stories, of why I love Michel, but there can never be enough.

A quick update. We have been in the Northwest for about two weeks. It’s different this summer. We have more to pack for my maintenance — tablet, speakers, diaphragm pacemaker. It’s more stuff, so more can go wrong. The most significant change is speaking with my synthetic voice. It’s an adjustment.

Rivers, tonight you just watched Star Wars for the first time. Impressive. “Rivers, I am your father,” I say to you in my best Darth Vader voice.
Your latest tricks include repeating almost everything, including, “Where is it?” You just said “awesome” for the first time, which is … awesome. Also, you are much more responsive to my synthetic voice. I have recently got your attention by saying, ‘Hey, bah boo. Can you say poo poo?” I did not think you were old enough for toilet humor, but I will take what I can get dude.

Here is a story about me and mama, as we were learning we loved each other.

One of the first times I knew I loved Michel was in 2004. She would regularly come over to my uptown apartment, where Brendan and Kyle lived with me. Michel fell right in with us three, which was next to impossible because we had been so tight for so long. I did not have a TV, so we had a goofy routine of all sitting on my floor on the futon, and listening to music while some trippy screensaver bounced around my computer screen. After several times coming over, I made the mistake (I found out later) of telling her. “I love having you over, you are just like one of the guys.”
Anyway, one night in particular, I remember us all lounging in the futon, watching screensaver trippiness. As the music played, I leaned my head over, and rested it on Michel’s lap. It was not calculated, or forced, it was comfortable. I do remember thinking something out of the ordinary. When Michel left that night, I remember saying to Kyle and Brendan, “One of us better marry that girl, because she is awesome.”

We just fit together so well. We have ever since.

I love you, Rivers. And I love your mama. From the Northwest, from the deep South, or from the stars. I love you both, forever.

Team Gleason: No White Flags

Team Gleason is deeply committed to helping people with ALS live productive, inspired lives by providing access to life-affirming events and assistive technology until a cure is found.

One of the ways we raise awareness is by sending other ALS patients on epic adventures. We produce and document these trips. Team Gleason recently returned from the Incan ruins of Machu Picchu with patient Kevin Swan. As an adult I have been fortunate to spend significant time adventuring. Nicaragua, Indonesia, Galapagos, Easter Island and Tazmania are on the list of places I have been. This Machu Picchu trip was the gnarliest experience I have had, though. My friend Scott Fujita, an 11-year NFL veteran, said it was the hardest thing he’s ever done. An NFL films crew went with us, so you will be seeing the results this fall. In the meantime, here’s a short trailer we created.

I love adventure travel because it allows one to see their world from a new perspective, to be enriched from experiencing the geographic, political, economic, religious and cultural diversity. By producing, documenting and sharing these adventures, we hope to inspire not only the patients or the ALS community to adopt our “No White Flags” mentality, but also any human. We all face adversity and tragedy, and need inspiration and motivation to keep rolling.

To help support other patients to live with ALS, Team Gleason provides and is helping develop technology similar to what I use. Until there is a cure, I believe that with the help of technology, patients of ALS can live for decades. More importantly, I believe that these people will make a productive impact on the world.

As far as it has come, technology for the physically disabled has been much slower to advance than technology for the mass market. The typical hardware that people like me use is still severely under-powered for modern communications and totally inadequate for someone tech savvy to do any remote work. It is simply unforgivable that the price tag on these machines is approximately $20,000 when, off the shelf, suitable hardware is available for $2,000.
Our foundation is working with established companies like Sahara Tablet Kiosk, which makes my tablet, and Tobii, which designed my eye tracking, to create less expensive, more powerful machines. We can outfit someone for $6,000 rather than $20,000, which is progress. We are also working with new companies like Eyefluence to rethink, rework and revolutionize how people utilize devices to communicate and type. It’s exciting stuff — wearable computers, brain-controlled interfaces, robotic exoskeletons. Last month, Eyefluence CEO Jim Marggraff and I spoke at the United Nations for a social innovation summit, to discuss creating a platform to invest in innovative technological concepts that impact not only people with disabilities, but also the global marketplace.

The most tangible example of our mission regarding technology is the Team Gleason House. The Team Gleason House is modeled after a residence in Boston that my friend and fellow ALS patient Steve Saling inspired.

The residence allows ALS patients to control their environment — computers, TVs, lights, doors, elevators, etc. just as anyone else would, using just their eyes. This innovative concept allows patients to live very independently without bankrupting their families. Additionally, it allows them to be productive and purposeful, to collaborate with peers and colleagues to continue whatever their purpose may be — artists continuing their art, teachers continuing to teach, architects continuing to design, producers continuing to produce. The House opened in June, and is slowly adding patients. It’s a work in progress, but one we’re excited about.

I do not see this as charity work. I see this as an investment, with measurable return, in people who want to continue to be productive and purposeful. I am looking for organizations and people who have the resources and effectiveness to end ALS.

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