By Callie Oettinger | Published: February 21, 2014
Jean-Dominique Bauby, Stephen Hawking, Francis Tsai—a journalist, a theoretical physicist and an artist.
The similarities? Olympic character.
In his column DNA of Champions, Joel Stein wrote about having his DNA compared with Olympic Gold Medalist Sergei Bubka’s DNA. It wasn’t surprising to read that there are certain genes that are common within Olympic athletes.
However . . . “The key Olympic success,” said Bubka, is that “you need to have character to go to your goal, to do your work, to be a hard worker.”
Twenty days after having a stroke, Jean-Dominique Bauby woke from a coma, able to control his mind and one part of his body—his left eyelid.
“In the past, it was known as a ‘massive stroke,’ and you simply died,” wrote Bauby in his memoir The Diving Bell and the Butterfly.
But improved resuscitation techniques have now prolonged and refined the agony. You survive, but you survive with what is so aptly known as “lock-in syndrome.” Paralyzed from head to toe, the patient, his mind intact, is imprisoned inside his own body, unable to speak or move. In my case, blinking my left eyelid is my only means of communication.
On its own, The Diving Bell and the Butterfly is a magnificent book (it became an international bestseller and then a Golden Globe-winning and Oscar-nominated film of the same name), but knowing how it was written—that blink by blink Bauby “dictated” his book to Claude Mendibil, who transferred his blinks to words on paper . . .
Each reading is the release of a story that was born in a prison.
Though Bauby was “locked in,” through blinking his voice was released, to be heard within the heads of readers around the world.
In the beginning of the prologue, he described “something like a giant invisible diving bell [holding his] whole body prisoner.”
As his day unfolds . . .
My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas’ court.
You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.
Then he starts into the actual writing of the book.
My main task now is to compose the first of these bedridden travel notes so that I shall be ready when my publisher’s emissary arrives to take my dictation, letter by letter. In my head I churn over every sentence ten times, delete a word, add an adjective, and learn my text by heart, paragraph by paragraph.
Blink by blink his voice escaped, his passion continued.
As did Bauby, Francis Tsai uses his eyes to create.
On the portfolio page of his site, you’ll see a three-word motto appear on pieces of Tsai’s “eye gaze” art: Adapt. Survive. Prevail.
When ALS claimed control of his body, Tsai adapted how he created.
From his site:
When the disease took my arms and hands, I spent some time learning to paint on my iphone with my big toe. Eventually even this stopped being an option. With the help of an extremely technically savvy friend I was able to obtain a custom built computer setup that is controlled via eye gaze. This new system allows me to use tools such as sketchup and Photoshop to create artwork.
By adapting, his will to create survived the changes and he—and his art—prevailed.
Last fall I shared the following video of Tsai and how I was introduced to his work. It’s worth another look, or two, or three.
The Theoretical Physicist
Like Tsai, Hawking was diagnosed with ALS. Unlike Tsai—and Bauby—it’s his cheek, rather than eyes, that he uses to create.
Since 1997, my computer-based communication system has been sponsored and provided by Intel® Corporation. A tablet computer mounted on the arm of my wheelchair is powered by my wheelchair batteries, although the tablets internal battery will keep the computer running if necessary.
My main interface to the computer is through a program called EZ Keys, written by Words Plus Inc. This provides a software keyboard on the screen. A cursor automatically scans across this keyboard by row or by column. I can select a character by moving my cheek to stop the cursor. My cheek movement is detected by an infrared switch that is mounted on my spectacles. This switch is my only interface with the computer. EZ Keys includes a word prediction algorithm, so I usually only have to type the first couple of characters before I can select the whole word. When I have built up a sentence, I can send it to my speech synthesizer. I use a separate hardware synthesizer, made by Speech+. It is the best I have heard, although it gives me an accent that has been described variously as Scandinavian, American or Scottish.
Through EZ Keys I can also control the mouse in Windows. This allows me to operate my whole computer. I can check my email using the Eudora email client, surf the internet using Firefox, or write lectures using Notepad. My latest computer from Intel, based on an Intel® Core™ i7 Processor and Intel® Solid-State Drive 520 Series, also contains a webcam which I use with Skype to keep in touch with my friends. I can express a lot through my facial expressions to those who know me well.
I can also give lectures. I write the lecture beforehand and save it on disk. I can then send it to the speech synthesiser a sentence at a time using the Equalizer software written by Words Plus. It works quite well and I can try out the lecture and polish it before I give it.
I keep looking into new assistive technologies, and recently Intel® have sponsored a team of its engineers to design a new facial recognition system aimed at improving my communication speed. They also have some new ideas regarding my software interface and it will be interesting to see the results of this. It looks quite promising. I have also experimented with Brain Controlled Interfaces to communicate with my computer however as yet these don’t work as consistently as my cheek operated switch.
Hawking’s work didn’t stop. Rather, in addition to his work as a physicist, he’s helped advance technologies that have the potential to help others, such as Tsai, and perhaps could have helped Bauby.
Early in their lives, the journalist, the artist and the physicist learned and trained within the worlds they expected to live.
When their worlds changed, they adapted—and then accomplished what many don’t have the inner strength to take one step toward accomplishing.
Going back to Bubka’s statement. Yes, there’s something to having certain genes, perhaps certain innate “gifts”—but having all the right things going for you doesn’t matter. It’s what you do with what you have, in the world in which you live.
As Tsai might say: Adapt. Survive. Prevail.