Tag: ALS

Better Days: An ALS Documentary

Posted on February 24, 2015 by

Do you remember the Ice Bucket Challenge?

Last summer, millions and millions of people jumped at the chance to dump ice chests, buckets and barrels of ice cold water on themselves, and then challenge their friends to do the same. Social media was saturated with photos, videos and testimonials.

Do you remember why?

The Ice Bucket Challenge was created to raise awareness about ALS, also known as Lou Gehrig’s disease. In several months, over $8 million dollars was raised to fight this horrible, terminal disease that has no treatment or cure. In other words, ALS is a death sentence – and along the way, the sufferer’s  body will slowly lose all ability to move.

I have a friend who has ALS; actually, I met her through my son. Her name is Cathy Speck, and over the last two years she has taught both of us about life and love while she is dying. You might remember her from the story I wrote last fall about the ALS walk we did together, or the Christmas caroling party she organized.

ALS walk

Everyone loves her-can’t you tell?

She really is an amazing woman – and I want her to stay alive. Watch this video clip and you’ll see why:

Nadine El Khoury created this video short about Cathy – and she is also the director of  ‘Better Days’, a documentary she has written, filmed, directed and is producing to share awareness about ALS.  Through a strange twist of fate, she found Cathy’s song, “Sweet Beyond”, online, not knowing Cathy suffered from ALS, too. Cathy and Nadine became fast friends, and a few weeks ago, my son and I attended a fundraising event to support Cathy and help raise awareness for the documentary project. There was no ice bucket, and we weren’t asked to do anything except listen to stories and watch a video trailer for a documentary trying to get finished.

I spent two hours shifting between tears of laughter, sadness and hope, but I left feeling full of love.

You can watch a trailer of the video here.

Nadine’s documentary has captured the essence of ALS: how it strikes at random, often swiftly and without warning, and leaves its victims living a life they never imagined.

You may not know anyone with ALS. You may not want to know about this disease, or how devastating it is. You may not want to think about things that are so frightening or painful or things that could actually happen to you. But if you’ve taken the time to read this post and watch these videos, you know Cathy. And I promise you – you would love her, too.

So I have a favor to ask you.

Did you do the Ice Bucket Challenge? I promise you, my request is much, much easier.

We need your help. In our little town, at our little fundraiser, we gave over $4,400 towards helping get this documentary finished. This movie isn’t for profit- this is a project created by one young woman from Lebanon who had a friend develop ALS who is using her talents to spread the word about a disease. This is from one dying woman who lost her mother, two brothers and an aunt to ALS, and is living more gracefully than many. This is from one mother who has watched her teenage son befriend a woman who is dying, and has seen him enrich his life from knowing her.

This is from one writer asking you to be grateful for your health, and to share what you can to get this film finished. To find a cure for this disease.

To help Cathy live.

To donate, use the “Go Fund Me” buttons on the documentary website, http://betterdaysfilm.com.

To learn more about the “Better Days” documentary project, visit Nadine’s Facebook page: https://www.facebook.com/betteralsdays.

To watch another trailer for “Better Days”, click here: http://youtu.be/B5Cq_jMtHFs

And please share this post on your social media. Tweet, Facebook, and Google+ this to help us spread awareness about ALS, about “Better Days”, and about Cathy.

She’s really something special.

Jennifer Wolfe

Jennifer Wolfe, a writer-teacher-mom, is dedicated to finding the extraordinary in the ordinary moments of life by thinking deeply, loving fiercely, and teaching audaciously. Jennifer is a Google Certified Educator, Hyperdoc fanatic, and a voracious reader. Read her stories on her blog, mamawolfe, and grab free copies of her teaching and parenting resources.

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Every Day is a Gift

Posted on October 27, 2014 by

Getting him out of bed in the morning typically takes multiple attempts and a variety of approaches-literally and figuratively. I start with the quiet, gentle approach – silently walking in, whispering ‘good morning’ to the darkness, and try to locate his cheek amidst the tangle of blankets and pillows and an occasional small-but-furry dog. If I’m greeted warmly, I continue to whisper encouragements. If not, I retreat and try again later.

This Saturday morning was no exception – except that when I make my first ‘fly by’ attempt the sun was beginning to rise and, as he gruffly reminded me, it wasn’t a school day.

“If Cathy can get herself out of bed, load up her wheelchair and get there on time, so can you. You’re not going to let one little leg cast stop you, are you? Now get up. We’re going to be late.”

He grumbled and groaned about why we had to leave so early when the walk didn’t start til 10, but I wasn’t in the mood. Every day is a gift, I reminded him, and he’d better make the most of this one. And remember – it means everything to Cathy to have you there. And she even has a cape especially for you.

By now he was awake enough to process, and realizing the importance of his presence, cast and wheelchair and all, he scooted over and thunked his heavy left leg to the floor. “Ok, ok. Just give me a minute.”

I smiled and backed out of the room. Mission accomplished, for now.

By the time we pulled into Raley Field, all fifteen teens and parents were ready for action. The energy was palpable, and the emotions flowed synchronously with the beat. ALS is a devastating, debilitating disease, brought to national attention last summer with the infectious “Ice Bucket Challenge’ fund raising campaign. But that’s not how we know ALS. Two years ago ALS walked (or rolled) into our lives with the gift of Cathy Speck, a vivacious, feisty and blunt-in-the-best-way-possible spirit who has become both a friend and a paragon of living life every day, in every way possible.

When Cameron met Cathy at school as part of his Peer Helping class, something magical happened. What could a thirteen-year-old boy and a XXXX-something-year-old woman connect over? That’s the real gift here. It’s between them. Maybe it’s her straight talking approach and honesty about dying that intrigues him. Maybe her sarcastic, sassy sense of humor? Her positive attitude about life and living? Lately, I wonder if his ‘broken’ body and fractured dreams have offered him new insight and compassion. I’m not sure that anyone could witness her indomitable spirit and zest for life, even as she’s dying, and not want to learn from her.

ALS walk

I knew she had arrived as soon as I saw the half-dozen bright yellow smiley-face balloons hovering above the crowd. The kids ran for her with the gusto of a crowd smothering a rock star. She’s that beloved, I thought. This isn’t something we see every day at school. This is something extraordinary. Within minutes she called me over. “Jennifer, I have his cape,” she smiled as she handed the turquoise blue felt to me. STOP ALS, it read. We’re trying, I thought. She was ready to roll, so I quickly tied it around his neck and watched as he settled back into his wheelchair and smiled as his friends jostled to be the first to push him into the crowd.

stop ALS cape

All around us thousands of folks rolled, walked and skipped to the infield and began the triple loop of support. Banners and balloons and costumes marched around the track, following Cathy’s chorus of “Hey, hey, ho, ho, ALS has got to go”. With every pass by home plate I looked around and breathed and took it all in – the azure blue of the sky, the scent of sunscreen and happiness, the smiles and laughter and love walking and wheeling along side me. The 15-year-old boys supporting Cam as he wheeled around the first base line, Cathy’s life-long friends gently holding an umbrella over her head, Cameron’s teacher and her son mixing with parents, teachers, and kids in a sea of adoration and support and extraordinariness on an ordinary day.

ALS walk

Every day is a gift. It really, really is.

This post was inspired by The 13th Gift by Joanne Huist Smith, memoir about how  random acts of kindness transformed her family’s bereavement and grief during the holidays. Join From Left to Write on October 28th as we discuss The 13th Gift. As a member, I received a copy of the book for review purposes.

Jennifer Wolfe

Jennifer Wolfe, a writer-teacher-mom, is dedicated to finding the extraordinary in the ordinary moments of life by thinking deeply, loving fiercely, and teaching audaciously. Jennifer is a Google Certified Educator, Hyperdoc fanatic, and a voracious reader. Read her stories on her blog, mamawolfe, and grab free copies of her teaching and parenting resources.

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