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.
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?
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.
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.