Henry Evans suffered a brain stem stroke at age 40 that left him paralyzed and mute. Robot maker Willow Garage helps Henry and his wife Jane in a project dubbed Robots for Humanity, which is exploring using a robot as a surrogate for Henry's paralyzed body. Henry controls the robot with minute head movements.
I documented a robot(PR2) test with Henry before a demo for a class from Stanford on a beautiful California afternoon in 2013. And I decided to mix in his story with my photographic series because that was what I was thinking all the time.
From Henry's blog CHAPTER 1 - THE EARLY DAYS, TUESDAY, JUNE 27, 2006
Things finally seemed to be settling down. I had a decent job that I actually liked, my kids were doing pretty well in school, and my marriage was good. We had just stretched to buy a house; no mean feat in the Bay Area when you have one breadwinner and four kids. I had just had a complete physical and the doctor said I was in 'excellent shape '. I coached my boys in football and baseball and was very active in the Scouts and school. All in all, your basic American Dream. I was forty, and it felt like life was just beginning.
My wife says I stumbled down the hall, using the walls for support. I said I just wanted to hold Jane and fall asleep. She insisted on calling my doctor. It would not be the last time she would save my life. I had to crawl out to the car, and could barely climb in. Jane urged me on, and then drove me to Mt View. My doctor took one look at me and said, "Take him to the ER."
When I started to come to, I was on life support. My kids cried when they saw me. I remember Jane singing 'Phantom of the Opera' songs to me, because she had heard that people in comas can often hear you. I used to play those songs a lot.
Jane noticed I was following along with my eyes. I soon realized they were all I could move-in fact, they were the only reason I was not a complete vegetable. My dad explained that I had no motor control, and I got it - I was trapped in my own body.
When I came to I was on about 25 medications , mostly antibiotics to keep me from starting to rot alive - since I could not move and my immune system was probably doing overtime . The immediate effect of this was that I frequently had hallucinations . First , I was convinced that I was in Kaiser Permanente , and that the doctors were trying to kill me. I also thought some woman kept dressing up like my Mom to gain my trust and then do me in . I thought the nurses kept intervening , against orders , to save me from being dumped into a meat grinder . Although I never moved from the ICU , I thought they had put me in a parking garage to save money. I imagined that I kept going places and our car had a special lift to get me in . I used to swim a lot, and I kept fantasizing about the water. We had just driven through the Sonora Pass on vacation and I dreamt we went there again . For awhile I thought I had turned into a horse , roaming Central California. My friends must have kept visiting , because I had all kinds of hallucinations about them. I thought some guy was trying to take advantage of my situation and get my 54 MG, which I had built in high school and still treasured . I vaguely remember the doctors saying I had a periodic fever ; this must have been related to the hallucinations , which came and went. The hallucinations were unnerving , and basically the time in the ICU seemed to take forever. When the nurses started calling me 'the miracle ,' I realized how close I had come to death.
Finally a Doctor from a rehab hospital came in . He made me laugh for the first time . They made it sound like his exam was very important ; that his rehab hospital was a big deal and was hard to get in to. I did get in.
They took Jane into a room full of doctors and told her that , in their professional opinion , I would never move and her best bet was to pump me full of anti-depressants and stick me in an institution , and soon. Well, that was the wrong thing to say to Jane . She told them she didn't care how many degrees they had, that I was young and they had no right to jump to conclusions. They acted like she was just a grieving spouse , so she stormed out of the room.
It wasn't too long before I proved the doctors wrong. On my birthday , October 10. I moved my left index finger . Jane said it was the best birthday present I could have given her. They tried to move me back to the stroke floor , but we said we were done moving . It was not long before my six year old taught me how to wink. He was very persistent and I told him I did it to get him out of my face . Winking may not sound like much , but it was huge. To this day I wink when I need a scratch, and to indicate the end of a word on my board . But back to my finger . My speech therapist immediately recognized the significance of my finger moving and began to train me to click a mouse. After I learned to click a mouse , the speech therapist hooked me up to a special computer . By now I had a little control over my neck. They put a reflective dot on my glasses and put a laser device on the computer . It reflected off of my dot, so that my head movement moved the mouse. The computer had an on-screen keyboard , so I could point at a letter and then click. In this way I could slowly spell out words.
It wasn't too long before I proved the doctors wrong. On my birthday , October 10. I moved my left index finger . Jane said it was the best birthday present I could have given her. They tried to move me back to the stroke floor , but we said we were done moving . It was not long before my six year old taught me how to wink. He was very persistent and I told him I did it to get him out of my face . Winking may not sound like much , but it was huge. To this day I wink when I need a scratch, and to indicate the end of a word on my board . But back to my finger . My speech therapist immediately recognized the significance of my finger moving and began to train me to click a mouse. After I learned to click a mouse , the speech therapist hooked me up to a special computer . By now I had a little control over my neck. They put a reflective dot on my glasses and put a laser device on the computer . It reflected off of my dot, so that my head movement moved the mouse. The computer had an on-screen keyboard , so I could point at a letter and then click. In this way I could slowly spell out words.
WHAT IT IS LIKE TO BE PARALYZED AND MUTE
First of all, I should explain exactly what is wrong with me. When the inner lining of my basilar artery came apart, it destroyed my center of motor control, leaving me quadriplegic and mute. Only my eyelids were not affected. My center of emotional control was also severely damaged, leaving me extremely labile. My senses, including touch, were not affected. Neither was my mind, including my memory, which is very good. People, especially little children, often ask me what it feels like to be paralyzed.
First of all, I should explain exactly what is wrong with me. When the inner lining of my basilar artery came apart, it destroyed my center of motor control, leaving me quadriplegic and mute. Only my eyelids were not affected. My center of emotional control was also severely damaged, leaving me extremely labile. My senses, including touch, were not affected. Neither was my mind, including my memory, which is very good. People, especially little children, often ask me what it feels like to be paralyzed.
I guess the best way for me to summarize what it is like to be mute and quadriplegic is to think of a dog. In a word, it is very dehumanizing. Dogs can't talk, so many people assume 1) they are pretty stupid compared to people who can (I know some people who might be exceptions), and 2) that they have no emotions. Their behavior is shaped by obeying orders to get treats. They like to have their heads rubbed. If people get tired of them, they put them in a room and leave. All of this could be said about me, especially when I am around only strangers. Around people who knew me before my stroke, it is different. They assume I am still at least partly the person I always was.
What is 'the Board'?
'Physically, it is a 12" by 12" piece of Plexiglas with all 26 letters and all 10 digits stenciled on it. The translator then holds it up between us so I can see all the letters. I stare at the group of letters that contains the one I want. The translator calls them out until I hear the one I want, at which point I nod. In this way we slowly spell what I want to say. It is very slow. Before I could nod, I blinked, which was even slower.
Our latest email conversation:
Yu: Morning Henry, This is a series of pictures I picked, I hope the Stanford demo went well. On Wednesday, everyone is patient even though the test wasn't going very smooth.
Henry: thee pictures look great! nice lens!
the stanford demo went extremely well[we found the problem]
thanks for coming!
the stanford demo went extremely well[we found the problem]
thanks for coming!
Henry's Blog
Photograph at Willow Garage LAB 2013. it's on TALK magazine and Social Documentary