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.”
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:
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,
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.