The great physicist, Stephen Hawking, came to the play last night. He has had ALS for 50 years!! That is 25 years longer than the next longest living case of the disease. No one seems to know exactly why Stephan has managed this. One of his colleagues who was there with him said, “I think it is because Stephen is the most stubborn man in the world!”
He arrived, carrying in his lap an enormous bouquet of roses for me. He was in an elaborate, electric wheelchair, his head held in place, a screen in front of him (like a large computer screen) is activated by him twitching a muscle in his cheek which is picked up by a small sensor attached to his glasses. His hands lay in on his thighs, fingers curled under, the common effect of advanced ALS. I took his hand and carefully uncurled the fingers one by one, wanting to see how they felt and looked…soft, pale, safe.
Many of the cast and crew had gathered around in the wide hallway outside my dressing room. We’d all known since Friday that he was coming and excitement had built. Michael, the head of the costume department, was shaking with emotion as we waited. He has read all of Hawking’s books and Stephen is his hero. Moises was there, along with all the actors, David Binder, our producer, and other friends who had come to see me.
Stephen had arrived in the hallway with a colleague from Cal Tech, his wife, and a very nice British man who works with him full time and will be traveling back to the UK with him in a few days. (Stephen comes to Cal Tech for a month every year).
This man explained to me right away that the computer had a lot of pre-programmed answers to different categories of questions but that if I asked another, more out-of-the-ordinary question, it would take awhile for him to “type” it out.
In the play, there is a scene in which Beethoven appears to me and tells me that only when he finally became totally deaf, was he able to be with his “music in the most intimate way.”
I dropped to my knees next to Stephen’s chair, reminding him what Beethoven had said and asked him if, like Beethoven, his disease had enabled him to go further, deeper in his understanding of his research– of the origins of the universe. He began a complex series of “commands” that caused much activity on the computer screen, none of which I could follow. We all waited with bated breath. As I waited, I rested my head on his shoulder, looking closely at him, at the subtle movements in his face as he concentrated on what he was “writing.” And all I could think about was that this man, imprisoned in a wasted body, was able to comprehend matters that are presumed to lie far outside the realm of human understanding.
After about 5 minutes, letters and then words began to slowly appear on the screen: “It… freed… me…” Ah haaa!! Moises and I looked at each other in delight, certain that our hypothesis was about to be proven—sure that Stephen was about to say something like, “it freed me to grasp the origins of the universe…” We waited for the sentence to be finished, another few minutes…and then, there it was: “It freed me to stop teaching!!!” and a computerized voice said it aloud so everyone heard. I looked at Stephen and noticed what appeared to be a sly grin. I’d been told he had a playful sense of humor. He had just demonstrated it! And we all had a good laugh. He didn’t have to teach anymore!!! That’s what ALS had done for him. Of course!!!
Then I asked him if he thought I acted the ALS properly in the play. Another wait while letters and numbers darted around the screen..unfathoma-ble. “You were…” was all we saw for quite awhile. I thought (arrogance?) that maybe he was going to say “you were brilliant!” When at last he finished the sentence it read, “You were my heart throb,” and again, the voice said the words aloud. I about fainted and everyone broke into laughter. “What’s this ‘were’?”, I asked. “What am I now, chopped liver?” And I could see he was laughing although all I saw was his face blushing and his cheek moving slightly. But I know he was laughing. “It must have been ‘Barbarella’, right?” I asked. And he typed out “yes.”
I gave his colleague my email address and asked that he let me know when Hawking would be back because I would love to come to Cal Tech and watch them work. I was told the new book they are working on will explain the origins of the universe, why the Big Bang occurred. I turned back and looked at Stephen in his wheel chair. This man who cannot move or speak, can, nonetheless, comprehend the incomprehensible.
That’s the thing about ALS. The brain remains untouched so that the person (as I say in the play) can fully experience the process of their body becoming “a flaccid carcass.”
All of us went home last night–i know I did–enlivened and inspired by Stephen. If ever I am confronted with terrible physical impairment, I will remind myself of him, try to be stubborn, and not forget my sense of humor–or my heart throb(s).