Wanna take a walk with me? Well, virtually, anyway.
The Walk to Defeat ALS is on Saturday, Oct. 6, in West Sacramento. As is the case every year, I’ll be away to celebrate my son’s birthday and will miss the event. But not virtually.
I’ve joined Cathy Speck’s walking team, the Specktaculars, by donating online, and I’m issuing a challenge to everyone who reads this column to match my donation. I specifically chose a small donation amount because I didn’t want the amount to be prohibitive: Just $20. Most of us can spare that, even in tight times.
How about you? Can you forego a pizza this week, or skip the movies, or eat pasta one evening instead of steak? If so, please go to the ALS Association website (just google “Walk to Defeat ALS” and search the teams for “The Specktaculars”) and match my donation. It’s so very easy. It takes only a moment. Trust me, I’d rather keep $20 in my pocket too, but some things are so important, it’s worth staying home so you can spend that money on something far more worthwhile than a couple glasses of wine downtown.
If you don’t understand why supporting the Walk to Defeat ALS is so worthwhile, you’ve never known anyone with ALS. I have. It’s horrifying. It’s heartbreaking. It is cruel, and it is viciously unfair.
If you’ve been reading my column long enough, you may remember one I wrote many years ago about my friend Jeannie Cushman. She was earthy and real, with a laugh that could rock the house, and eyes that sparkled and danced — even as she was eventually hooked to a machine that was doing her breathing for her. I could still see her there in her eyes, right until the end.
That is the cruelty of ALS. As your body deteriorates around you, ceasing to function limb by limb, organ by organ, your mind is perfectly intact. Physically, it’s rather painless. Psychologically, it’s brutal on the person afflicted with it, and possibly even more brutal on the people around him or her.
ALS stands for amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, after the baseball great who succumbed to the disease. There is no cure for it. A diagnosis of ALS is a death sentence. The only question is how long it will be before your time comes.
It could be months, as was the case with Jeannie. Or, it could be years, as is the case with Cathy. They say the average person survives three to five years after the diagnosis. Cathy’s already shot past that average. I don’t know how much longer we’ll have her with us.
I’d known Cathy for years via email exchanges, mostly related to Duval Speck music performances (her band with her wife, Linda Duval). As the years went on, I started to get press releases about Cathy’s efforts to raise ALS awareness. They were heart-wrenching. It was in one of those emails that I noticed — hey … Cathy’s a writer! A columnist, in fact! And soon, she started writing for our iPinion syndicate and launched a new career of sorts. But we still hadn’t met in the “real” world. The time had come.
I was a bit hesitant to meet, because my entire experience with Cathy wasn’t on the physical plane. I didn’t want to damage that. Our relationship was special and unique. But I needed to meet the person behind the goofy emails, and Cathy made it crystal clear to me that if I wanted to meet her, I’d better not wait too long.
So, we met at the Davis Food Co-op patio, and here comes this lanky gal with a rolling walker covered in stuffed animals, horns and tinsel, with this huge, warm smile in spite of the oxygen tube strapped to her nose. The first time I hugged her, I knew we’d already met.
And the first thing she did as we sat down to chat? She pulled a weathered, yellowed, piece of folded newsprint from her pocket and showed it to me. It was my column about Jeannie. Cathy carries it everywhere, and cut it out all those years ago because she’d lost her mother to ALS while still a child. She appreciated that someone else knew what it was like to watch a person’s body die around her, while she was still inside — never knowing that one day, she’d go through it herself.
I was, quite literally, stunned. Something I’d written had mattered that much to someone, for so long.
Cathy still stuns me from time to time, in our ongoing email exchanges. Like when she sent a photo of herself holding the urn that will hold her ashes. I can’t even wrap my brain around that kind of courage.
She’ll tell me how she’s coping, what she’s doing, as ALS continues siphoning away her life, and keeps forcing me to face her dwindling time. And it breaks my heart. Cathy has so much more to give — she’s bright and funny and talented, and wickedly witty. It’s so ironic that one who is dying can be so full of life. And … she’s only one in thousands.
It does not sit well with my soul.
Not one bit.
I don’t know if they’ll find a cure for ALS in time to save Cathy. I hope so. I won’t willingly give up hope. You have to snatch it from my fingers. And I still have hope for a cure for Cathy. She’s literally spending every last ounce of her energy shining a light on ALS, and will actually be participating in the Walk. I can’t be with her that particular day, but I’ll be there in spirit. Virtually at her side.
Will you join us?
— Email Debra DeAngelo, winner of the 2012 Best Serious Column award in the National Newspaper Association’s Better Newspaper Contest, at email@example.com; read more of her work at www.wintersexpress.com and www.edebra.com