There was a woman with ALS, Pam Callahan, who attended a matinee last week. She is 48. She came on a rolling type of stretcher with four friends who were attending her. She is on a respirator which allows her to breathe. This is called “being trached,” meaning you have had a tracheotomy. My character in the play has specifically requested she not be “trached.” Pam did the opposite. She said, “I am a mom of four boys, 4, 12, 9 and 6 so I chose to have mechanical help.”

Pam Callahan

Pam and her sons May 2007

Even now Pam is beautiful but look at this photo of her before she got ALS!!!!! As you can see from her letters below, she has a powerful, funny, deep spirit. Colin Hanks was with me when we met with Pam after the show. It was an experience I will never forget and it is absolutely informing my performance ever since then. I cannot get her presence out of my mind and my heart. I have a line in the play, “My mind is unaffected by the illness so that I am able to fully experience the process by which my body is becoming but a flaccid carcass (said with irony, not self pity)”. Pam is the absolute, perfect example of this.

There is, as you can see, a screen in front of her and she “writes” messages on it by focusing her eyes on letters of the alphabet. The machine can then read what she has written aloud. Amazing! Here is what she wrote:

     ”Congratulations on your nomination.  It is wonderful to see you on stage.  It is an absolute honor to meet you.  Thank you for providing me this opportunity.

     I hope you realize how fortunate we in the ALS community feel to have you representing us in the play.  It’s lack of awareness that causes problems ranging from proper diagnosis to adequate government funding.  Now, war veterans are developing ALS at a rate 60% higher than average.  But just try to get statistics from the government…Alas they have finally decided to cover affected vets calling it a service related illness.  Because it is occurring during both peace and war times we wonder if it is vaccine related?

    Do you personally know(n) anybody with ALS?  We are celebrating the 70th  anniversary of Lou Gehrig’s famous farewell speech with all major league baseball clubs across the nation on July 4th.  Locally, we will have an ALS BBQ.  Would you kindly autograph a playbill for the auction and one for me?  Thanks.

Then, yesterday, she sent me this letter:

Dear Jane,

    I had a fantastic time yesterday, and to you, Colin, and the cast, I say Thank You.  As a full-blown ALS patient, I have experienced almost all aspects of the disease.  I must say, you are spot on with your portrayal of an ALS patient.  Phenomenal!!!  Dr. Bryant reached into my soul and stirred emotions and memories that I had tucked away as I experienced the rapid progression of Lou Gehrig’s disease. Surprisingly, it was extremely cathartic.  You elegantly brought the public light and insight on this dreadful disease.  For that I thank you.

I love the juxtaposition of Bryant’s journey with that of Beethoven and Clara and Mike.  Ah, I guess you saw it already so I will just say the cast was terrific and you were brilliant.  I only wish the show had a longer run time.  I would love to bring others to see it (as if I am going to strap them on my lap and wheel them through the tunnel- “I am the go-girl”).

   I can’t thank you and Colin enough for taking the time to meet with Thelma, Tracy, Joanne Terry and me.  It was an absolute honor.  I thoroughly enjoyed our conversation.  You left me much to think about– fear, the kids and your spiritual advisor whose name I forgot.  I would love to have her name so I can read her philosophy on these matters. Lord knows I need all of the spiritual advice that I can get!

    Enough of my inane prattle.  I am also emailing my comments that you requested.  I apologize for not getting it to you sooner.  I was exhausted.    Best wishes on the nomination, you certainly deserve it.

With the utmost salute and respect,

Pam Callahan

PS  Stem cells will be a huge part of a cure/treatment.  They are starting “legal” testing now, thanks to President Obama.  I’m trying to get into these programs.

I have been dreaming about the play all along, since the beginning, going through scenes, coming up with ideas. Nothing huge, just little ideas. Many times I will wake up and have forgotten what I dreamed but here are two examples when I remembered and acted upon my dream: In the first scene, Colin Hanks says something that makes me laugh and then I realize my laughing is inappropriate so I stop. Sometimes this gets a laugh, sometimes not. I dreamed that I should laugh and catch the eye of Samantha who plays my daughter and it is because of her that I stop laughing. It’s a little note that I think Moise gave me way back in the beginning but I’d forgotten. I have been doing that for the last week and it works better, gets more regular laughs.

Last night I dreamed that in a scene with Gertie, the woman in charge of Beethoven’s archives, where we meet up in a train station, I should have files with me. I am coming from work. So tonight, I asked props to give me some files and I brought them with me and it felt better. I felt more grounded. It Makes no difference for anyone but me but still…Will this never end, this tweeking? I bet not. I hope not. I am fascinated that the play still holds new things for me, for my character. Frankly, I didn’t expect this. I felt sure that once things were “locked in” that would be that.

I did something else tonight that I hadn’t done-at least not consciously: I played that my neck was losing its ability to firmly hold my head up. Someone wrote me yesterday who saw the play on Sunday saying they had a family member who had ALS and they commented how much they had related to the weakness in my neck and my head flopping around. I hadn’t even been conscious of doing this– so now I am doing it more consciously.

Moises came back from his vacation and being in L.A. casting a new play, He says he’ll see the play again tomorrow night (Wed) so maybe he will tell me not to do this head thing. I am curious if he feels we’ve strayed at all from his original direction. There’s no question that there are things that have changed. Is it a deepening of our understanding of our characters or–??? What???  We’ll find out.

Okay, I will have to fess up: I have felt abandoned by our director. Probably it’s that I am jealous that he’s gone on to new projects while we’re still here. How can he bear to be away from us? That’s how I really feel. It was so hard when he told us that he was weaning us…that he was going away. I so missed his regular input. I wanted every night to hear from him how he thought the show went. I know this is rather irrational. But I’m learning this is how it goes. So different from movies where it’s you, the actor, who leaves, leaving behind the director with her/his editor for maybe a year more, to turn the work we did together into a finished film. Here, in theatre, it’s the opposite. One more new thing to learn to adjust to. Moises won’t even be here, I just learned, for the night of carousing the cast is planning in April. The crew has told me, like they are talking to a baby, “Jane, you must understand. Most directors never come back at all.” REALLY!!!

On that note, I will see you nxt time.

It’s not opening night but it feels like it. Flowers fill my dressing room. So nice. Critics are coming. So what. We are so ready we’re about to burst like ripe fruit.

Last night, Regina Scully came to the show with four friends. When they came back after, I looked at one of the women and said, “Don’t I know you?” “No,” she replied, “We’ve never met.” Then Regina said that the sister of two of the women had died of ALS and I immediately knew why I knew the woman—Valerie Estess. “You were in that video about your sister, as she died, “Three Sisters Searching for a Cure”! You were the one who did all the talking! Of course I know you!” How could I forget? I’ve watched the video so many times, studying her sister. I wept when I realized who was in the room with me and how much this disease has changed their lives. I was happy when both sisters (Valerie and Meredith) told me I had the disease nailed in the show.

They have continued the research project they started while their sister was still alive—Project A.L.S. (www.projectals.org). We discussed doing a benefit for their organization in the Spring. All money goes into research. They’ve created a stem cell lab at Columbia where they’re researching stem cells and motor neurons—what destroys them and what can heal them.

With them was their board co-chair, Martha McCully, who writes “My Reinvention Tour” on the Huffington Post. We hung out for quite awhile after the show talking about their sister and what they are doing now.

Today I had an interesting, far-reaching interview with theatre critic Wendell Brock, from the Atlanta Journal Constitution (my home town paper). He happens to be a friend of Scott Peacock’s and had somewhat the same (spiritual) reaction to the play. He brought me a box of Girl Scout cookies from Atlanta.

We had a brief rehearsal during the time I usually nap, so—gulp—I hope my energy doesn’t flag. I doubt that it will. Even though I’m not nervous, knowing the critics are out there does give an added adrenalin boost.

Wouldn’t you know it, on such an important night, a personal crisis arose and I could feel my stress hormones rising in my body till I shook. But I meditated for a few minutes before rehearsal and have calmed down enough to feel it won’t affect the performance. I try to look on something like this as a test. Can I rise above and maintain when it matters. I’ll let you know tomorrow.

See you next time. (unless something really unusual happens. And if it does, maybe I’ll just Twitter)