For a lot of reasons, it felt emotional and meaningful to write last weekend about ALS and the impact the disease has had on the likes of George Brett, John Dorsey and Tom Watson.
Part of it was personal. I’ve seen dear friends contending with it in their lives. But more than anything else, it was from seeing the disease up close a few years ago.
As recently as 2009, I had no idea what it meant to have ALS. Then I got an e-mail from Pam Callahan, a friend I hadn’t been in touch with for more than 20 years:
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“First of all, forgive me for I am still (struggling) on my eye gaze computer. Put away your correction marker!
“Second, I have four beautiful boys, 5, 9, 11, and 13. …
“Then, yes, this ALS is nasty. All I can do is make the best of it! I am trying everything. I have to, because I love being a mom so very much, and I have to make headway for my kids.
“I am volunteering myself for every experiment,project or trial possible. The only movements I have are blinking and i speak by typing and having the computer say it for me.
“I can not speak because i have a trach/ventilator. I am keenly interested in the technology that reads brain signals and allows for movement.
“I am so willing to be the bionic (woman)!”
Pam was reaching out in hope that there was a movie or book to be done to help raise awareness about the disease timed with the 70th anniversary of Lou Gehrig’s final game and fabled speech.
She went on to ask about my family and told me more about hers, adding, “other than the als, I have been living a great life.”
Even without having any real notion of what her life had become, I knew I wanted to see her if I could.
A few months later I was in New York visiting my parents. So I set out to take a ferry to Atlantic Highlands to visit her.
I was fortunate to make it there because a kind stranger paid my $30 fare since I foolishly didn’t realize I needed cash and was carrying only a credit card.
Pam’s remarkable friend and relentless ALS advocate, Michele Dupree, met me at the dock with Pam’s four boys.
Then we headed to a special restaurant, Copper Canyon, where we had a private room because the owner and head chef, Michael Krikorian, adored her and was forever grateful for her support before the restaurant took off.
And then Pam was rolled in on a stretcher.
It was maybe the most shocking thing I’d ever seen.
For some idea of why, you can look at photos on the blog of Jane Fonda, who met Pam when Fonda was doing a play about ALS.
Michele had tried to prepare me, but I struggled to keep my composure seeing someone so beautiful and vibrant trapped in her own body.
But it became all the more emotional as I realized the most important thing of all: Her spirit and personality were the same as ever even as she blinked at the computer screen in front of her, one painstaking character at a time, to share the deep thoughts and snappy comebacks that so defined her.
She even used the computer’s voice-activation mode to scold the boys for some minor misbehaving at the other end of the table.
To me, her pure courage and resilience was more unbelievable than what had befallen her.
Who could possibly be like this, so hopeful and energetic under such circumstances?
And I felt grateful for the miracle that she could communicate this way.
So it was jarring to learn the incredibly expensive computer, her only real lifeline, was unreliable and almost useless later.
It was worse still to find out that even the muscles in her eyes came to betray her, and she could no longer even blink to communicate.
Wasn’t the rest horrid enough? How could that be taken from her, too?
When Pam died in February 2012, the obituary in the Asbury Park Press referred to her as “being a beacon of hope.”
She was and is, by the way she somehow found a way to console those around her and made you want to believe there will one day be a way to slow, stop or end the ALS nightmare and through the faith she put in the work of the ALS Therapy Development Institute.
But today even Michele will tell you that it’s important to realize that Pam had it better than most because of financial means and that incredible support system.
Many others aren’t as “lucky” as Pam considered herself.
That’s all stuff Brett and Dorsey and Watson know intimately, and why they want to do what they can to help fight this evil that you can’t ever forget once you’ve seen what it means.