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.

The man in glasses on the otherside of Stephen Hawking is our writer/director, Moises Kaufman. Photo by Ryan Miller/Capture Imaging

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.”

Photo by Ryan Miller/Capture Imaging

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).

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  1. It freed me to stop teaching …. LOL!!!!

  2. Hello Jane ,
    I have to say , that is one of the best stories to keep in our memory banks. A good recap of that event ,must have been something, and a good retelling ,thank-you Jane.
    “There comes a time when the mind takes a higher plane of knowledge but can never prove how it got there.”

    Albert Einstein

  3. It’s great to see such great compassion to Stephen Hawking who is one of this World’s greatest physicist. We should never judge a person by their looks but by their character and contribution to this World. We can all learn a lot from someone who has dedicated all their life and career to meaningful purpose. I salute Stephen Hawking for everything he has done advancing all of our knowledge going forward.

    Thank you Stephen Hawking!

    Noel Anthony Haughey

  4. Wow!!
    Thank you for sharing this amazing experience.

  5. What a night, how lucky you are meeting people like Stephan living such a life…. #share
    Love u
    Patrick in Paris/France

  6. I had to write about this event as well.
    Such a special night! Thank you…
    Michael Gardner

  7. Dear jane ~ silence humbling genius. So sweet. Wouldn’t you dream to know him more? I like that you took his hand. So many disabled aren’t touched. Your story touches us. xox m&lb

  8. I saw the show tonight with my daughter. I was so moved. You, the other actors were so real. The staging is brilliant. Moises is brilliant. He should have won the Tony. I was moved to tears at the Kyrie and the minuet at the end was so wonderful. Thank you so much for sharing this blog, taking us with you on this journey. I feel so blessed to have seen your performace. Thank you.

  9. thank you so much Jane for sharing this, beautiful, both you and Stephen.

  10. What an amazing life you lead. And how interesting it is for us to follow you!! Such an inspiration.
    It would be so fascinating to be in the company of Stephen Hawking!

  11. Wow! What a moving thing to read! It is amazing how he is able to communicate! Very touching that he came to see your play, to share himself with you. Thank you for sharing this beautiful moment with us.

  12. Jane, My son, who worked on your play, called yesterday and told me about this amazing meeting…As he told what happened I became as emotionaly as he! Truly an unforgetable – inspirational moment in time. Thank you Jane.

  13. I am so uplifted and inspired by your description of the visit. Might be my favorite blog ever. Many many thanks.

  14. Beautiful.

  15. His eyes were so expressive and showed happiness meeting you, his ‘heartthrob’ Barbarella now playing a much different role! Oh thank you so much Jane for sharing this momentous experience! xo

  16. it’s mind-boggling that he’s had ALS for 50 years. i hadn’t realized it had been that long. what an astonishing, brilliant man. i love that he let you know your heartthrob status. 🙂

  17. Jane, You are beautiful! Thank you. The story of your experience and what you took from it brought tears to my eyes. You are inspiration to me.

  18. What a fantastic moment and memory to share, thanks Jane. You’re the best:)

    Bonnie Mechelle
    Advocate of GCAPP

  19. Wonderful!!
    These stories are what make this Blog, the intimacy of personal experiences that you convey!
    Whether it’s fly fishing or this meeting.
    You take us there!
    Thanks, Jane.

  20. Your wonderful story of meeting Stephen Hawking reminded me of seeing, many years ago in Houston, Bette Davis meet Alan Sheppard, the astronaut. I expected him to be blown away by her, but it was the other way around–she threw out her arms to embrace him and her first words were “I flew with you!”. Of course if she’d done Barbarella things might have been different!

  21. this experience stunned and struck me and i know that if my father, at the end of his life, had possessed the ability to communicate the way that mr. hawking has, however laborious it may be, that his outlook would have been the same. but i hadn’t been able to see his life or outlook exactly that way until i read this.

    my father did not have ALS. he had Huntington’s which affects an incredibly small percentage of the population but which has begun (on shows like “House”) to be dramatized if not poorly, then inaccurately.

    but the effect was the same: a carcass with a mind (deteriorated, but present, in my father’s case) inside it. my father was retired from the navy, a college professor with multiple advanced degrees (he didn’t get his PhD because he hated the politics of the doctoral defense), but at the end he was invisible in his body except for the occasional sly chuckle and even more infrequent outburst of 4 or 5 incredibly chosen words. mostly it was “yeah” or “nope” squeaked out like a hiccup.

    regardless, your experience with mr. hawking inspires me and reminds me of my father, and i wanted to thank you for illuminating this moment in time and space and “disability” for everyone who may not understand that just because a person cannot speak to you, it does not mean that they do not see you.

  22. This is such a lovely story. So intimate and human and shows how amazing people you both are. Do you think that writing personal things on a blog feels a bit better than an ordinary post? I love good writing and I love writing myself (I’ve written such great roles to you).

  23. From a former Vassar classmate, class of ’59, ….what an incredible meeting with Stephen Hawking. Life certainly takes us to amazing places and people. Hope to catch your show in LA
    Judy Heil Crowell

  24. Truly inspirational – the both of you!

  25. Loved that..was so wonderful with the photographs. Thanks for sharing such a beautiful moment in your life.

    • Visiting LA briefly from Maui, we had the pleasure of seeing the Wed. Feb. 2 performance. As a classically-trained pianist, now a psychotherapist in private practice, I was so touched by the play. My partner and I are life-long fans of yours, and we are inspired by your example of living fully and passionately.

  26. Wonderful story, thank you so much for sharing it!

  27. Miss Fonda,
    Loved reading about this meeting. At least, to my knowledge, you have now met with 2 ALS patients, Mr. Hawking and Pam Callahan. ALS is such a misunderstood and underfunded disease, we could really use a well-known spokesperson to advocate and possibly do a PSA. You would be an outstanding choice for this role! What do you say??

  28. Loved reading this! It’s very touching really to see these pictures. What an exciting event to have Stephen Hawking come to your play! He’s such a remarkable person. I’m sure it was special meeting for both of you! Thank you for your thoughts about him and ALS.

    I look at his pictures and think about all the wonders of the universe he knows and understands. Things we have little or no knowledge of. I think he’s still on this earth for a reason….a purpose.

  29. Thank you madam hearthrob.

  30. I live in Berkeley. I would see a man in an electric wheelchair usually everyday when I walked home from the Rockridge Bart station. One day as I was walking home, I noticed the man in the wheelchair about a block away. I remember thinking .. wow he’s upgraded his wheelchair. It looks pretty high tech. As I got closer about 3 or 4 people had gathered around him. I thought that “maybe” it was Stephen Hawking. I saw in the paper the next day that indeed it was Stephen Hawking and that he had been at the University. I was pretty excited I had seen him. I told my sister. She asked me .. “really, what was HE in”? I explained who he was. She was not as thrilled as I was. I realized she’s not as nerdy as I am. 🙂

    Good luck with the play. I’m sure it will be a hit.

  31. Inspirational

  32. I love you Jane!


  33. You’ve met so many amazing people, Jane! It is so common that physically challenged people are so strong inside, fighting for life. And we all, having fully functioning body, often give up when difficulties come. It is a great reminder that life can be very fulfilling and interesting in any condition and that we should never give up. No matter what. Thanks for this post, Jane

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