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.
Alec
I am fortunate enough to know Pam. She is one of the most intelligent, persistent, and competent people I know. I have had the benefit of working with her as a technical support representative with the company that makes that device that she uses to communicate. She used to email me more regularly, but now it seems like she is getting exhausted more often and unfortunately I do not get to hear from her as much. I have worked for this company almost a year now and have gotten to know and care about a few of the ALS patients that I have been in contact with. Unfortunately many people I have met with ALS when I first started with this company last year are not doing too well right now and I do feel it in my heart. Of course I wish everyone with ALS the best and pray for more help for you to come soon. I am just glad I was able to be a part of Pam’s life and hopefully made it a bit easier. I will never forget how she told me her children come up in bed with her and she uses her communication device to help them with their homework. Pam will not let her ALS stop her and having communicated with many ALS patients, I really commend her for that. She is one heck of a woman!
lorraine balaker
ms. jane fonda;
thank you, thank you – from my heart. you have touched my family and i so much – you have created for us ‘als’ sufferers your voice so we can describe how desperately we need the public to know how destructive and invasive ‘als’ is. it is a nitemare, a living hell on earth -claiming your voice, swallowing, arms, legs, hands so you are stripped of independence.
i am typing with the only finger i have left -since my diagnosis i have put together literature for those who say, ‘i heard of it, but am not familiar with it’. i have written letters asking for tv commercials – was told it is policy not to pay for tv commercials.
research is not providing results, ‘als’ has been around since 1869 – then in 1941 after lou gehrig’s death. we are dying a tormenting death – no cure, no medicine and no doctors as ‘als’ is still a mystery.
‘als’ is five times higher than huntingtons disease and equal to multiple sclerosis. what it boils down to is money, not enough of us to warrant the rearch we need.
ms. fonda would you consider helping us get the exposure we desperately need. your brain, your voice along with your beauty would make a difference to those who are struggling with this destructive disease.
i ask everyone i write – how many more must die to get us the attention for more research.
pam is very brave – you have given us a spark to fight harder – no one can ever know how we feel – you now have some idea after your play.
please know your input will be appreciated.
lorraine balaker
Najwa Bahsoun
Dear Jane,
I drove away one cold and gloomy winter afternoon, after meeting with Pam at her home for the first time. I was taken by her ability to initiate a conversation and take part in it.. more so, she asked to hear my story first..I was also touched by her care and effort taken to comment on a shawl I had thrown on my shoulders, admiring its uniqueness.. all of which reveal her inner beauty, her graciousness…Let us not forget she is litterally speechless but her voice reverberates beyond the confining walls of human ears. I called my dearest friend and related the extraordinary encounter I had just experienced and he suggested to write her story and entitle the book “with the blink of an eye”… After reading about you and your encounter with Pam, and in search of the perfect person to represent those who succomb to such devastating illnesses, a woman whose voice and actions reach out beyond the walls of a theater, I felt compelled to ask you, Jane Fonda, to give a serious thought in carrying Pam’s voice further and louder… not only to find a cure to an illness but also reach out those who chose to take the road less travelled regardless of the obstacles awaiting them… I sincerely hope you will hear the urge in taking on that new challenge, but know you will be backed by a powerfull team of women focused on making a difference in this world.
fondly,
Najwa Bahsoun
PS: tried to send you this message to your direct e-mail but wasn’t sure it went through. Therefore, not taking a chance, I didn’t think you’d mind me having 2 different entries:)
waterrose
I came across your website and this story and was so touched. My husband died of ALS in early 2003. I will never forget the day that the diagnosis crossed the doctors lips. After he said that, he said, “it’s always the good people who I have to give this news to.” This disease needs a cure. It is such a cruel way to end life. My husband and all of those with this death sentence disease are brave, strong, wonderful people.
My husband would have been thrilled if that communication device would have been available during his battle. We created a hat with a small presentation pointer and he pointed to letters on a sheet of paper to spell out words/sentences. We became very good at predictive word analysis.
I would love to see this performance, but will not be able to unless it comes to Phoenix. Thank you for spreading the word and helping people understand. Tuesday’s with Morrie was a good beginning, but continued mainstream productions, commercials, information will help people understand that research into stem cells and other avenues is absolutely necessary. It only seems that this disease is increasing in our population and I can think of no other way that people will begin to understand.
Please keep up this good work and help us defeat this.
Hugs
Emily
Pam is one of the most amazing people ever! I have been doing Carnival for Pals! I plan to do it this year to with my friend! Pam is a great person who is my moms great friend! “she is one of the funniest people still with all that going on she is still the same person” I love her very much!
Kay Marie
Dear Jane,
I am the CALS to my PALS, Web. Thank you soul much for helping us promote ALS Awareness! I am going to copy and paste this to our thread “Stories of Hope” on http://www.alsforums.com and also to the ALS Guardian Angels forum. Please do not forget us.
With hope and appreciation,
Kay Marie
Shelli Ritchie
I was delighted to see your blog about Pam Callahan. I was lucky enough to be her nurse at home for about a week . We stayed up night after night just talking and laughing. She has an amazing circle of friends who love her, it is easy to see why, She is truly an amazing woman, nothing stops her. she is focused and spiritual. It has been easily a year since we spent our time together but she has never left my heart, her sons are the source of that inner glow you see in her eyes. Seeing them come in her room and climb up on her bed to talk to her was like Christmas morning for her, she absorbed their every word like candy. Such a joy to witness. She will always be in my prayers and in my heart as one of my favorites. .