About eighteen months ago my friend Beth started having trouble swallowing so her doctor referred her to a physical therapist. It wasn’t long before she knew it was something more serious than “a throat thing.”
She prayed it was multiple sclerosis. She figured she could live reasonably normally with MS. But the diagnosis, when it came, wasn’t entirely unexpected. She’d been researching her symptoms. Amyotrophic lateral sclerosis, also called Lou Gehrig’s disease, is a progressive neurodegenerative disease that has no cure. There is help from the ALS organization in the form of making life as bearable as possible. Better than nothing, I suppose. Beth rationalized that the “good” thing about ALS was that it was a gradual illness; it didn’t hit all at once.
Beth went from using a cane, then a walker, to being unable to walk at all. She had the Cadillac of electric wheelchairs in her favorite blue. Never a confident car driver, she was an even worse wheelchair driver. She laughed when she told me about running over the cat’s tail and dinging the walls and furniture.
She went from being able to eat some soft foods early on, to puddings and yogurt, to a feeding tube. She was very upset at Easter when she couldn’t even eat a deviled egg! She went from being the life of the party always with a story to tell, often a naughty one, to being unable to speak at all. She was a technology-hater, who had to become a smart phone and iPad user. Her spirit was strong though, and she kept the twinkle in her eyes.
With each passing week, it seemed, she had to have what she called “a new piece of equipment,” another something to help her move, sit, breathe. A stair-climber was installed not long into her illness, then a bed downstairs in the living room became necessary. An oxygen tank was a new companion.
And yet, for all that, when I visited for what turned out to be almost the last time the only she thing complained about was her hair. “My hair is driving me crazy,” she said.
“I can help with that,” I told her. “I’ll bet my hairdresser Lourie will make a house call.”
So the next week Lourie tamed and shortened Beth’s wavy locks into a cap that cradled her head. You’d have thought she gave her the moon. While Lourie snipped, Beth pulled up her pant leg to show me that the annoying brace she’d been wearing for months was gone. She smiled. “The doctor told me that since I can’t stand or walk anymore, I don’t need it.” Funny how such small pleasures could make her worsening days seem better.
Sadly, Beth’s struggles to swallow, to breathe, ended on September 19.
Wherever you are today, Beth, I know you’ll keep ‘em laughing.
Your story brings me to tears. I have seen the struggles of so many patients, but have never been able to really articulate the struggle in words. Your loving tribute to your dear friend Beth says what so many search to find. Beautifully written from a beautiful woman, my mother, Judith Clarke.
I love this story and the spirit you captured in your friend Beth. You were a beautiful friend to her and shared laughter with her til the end. I love the part where she ran over the cat’s tail! I can just picture that. Thank you for an inspiring story.
Beth truly was an inspiration.
Oh Judy, I’m so sorry. After reading this in critique group, I was not expecting the ending here. She sounds like a card. I would have liked her. She’s lucky to have a friend like you to immortalize her spunky spirit.
Yes, everyone loved Beth. “Spunky,” yes, that’s who she was. Thanks, Andrea
You know of course, that this brought tears! How lucky we were to get to know this wonderful friend! Wonderful tribute to her.
Judy, what a wonderful story of a courageous woman; her life is an inspiration to us all and the friendship you shared shines through in your beautiful words.
Thanks,CJ. A group of her friends attended her funeral together this morning. In Beth’s honor we laughed a lot,knowing she would’ve liked that.