Beyond the Ice Bucket Challenge: A Personal Story About ALS

Forgive me for stating the obvious, but the ALS Ice Bucket Challenge has gone viral. In the past few days I’ve started to see some (understandably) cynical opinions about it – after all, it IS the Internet, a lot of celebrities, a silly act, and often no direct “call to action” to donate or make a difference, just a spectacle.

Is it self-serving? Is it a so-called “humble brag”? Well, here’s my opinion.

ALS, or Lou Gehrig’s Disease, is truly, truly awful. There are many horrible diseases and it doesn’t seem humane to “rank” them. All are dreadful, all cause suffering, and ALL are worthy of awareness, funds and a cure. But this one is especially horrible, trapping healthy minds in progressively failing bodies, with no cure, no treatment and only the most grim of prognoses, on an accelerated timeline.

Thankfully, most people who participate in the ALS Ice Bucket Challenge appear to be putting their money where their ice cubes are, as evidenced by the fact that to date they have received over $30 million in donations in just 6 weeks, compared to less than $2 million during the same time period last year. Isn’t that pretty clear evidence of the Internet using its powers for good?

This one is personal for me.

In 2001, during the last months of my sweet mother’s life and just before Dean’s and my wedding, she had unexplained neurological symptoms. One possible diagnosis was ALS. My heart sank. My stomach churned. She was terrified.

Helplessly, I prayed… “please God, not that. NOT THAT. Anything but ALS. Anything but…”

My dad had suffered from MS for years and it was devastating to watch his condition deteriorate. I knew ALS would be worse. MUCH worse. While her remaining time was short, I will always be grateful that it was not ALS that took her. I couldn’t bring myself to imagine that for her. Or us.

Fast forward twelve years. I learned one year ago that my friend from high school, Don Young, the strapping, handsome, fun-loving football player from Villa Park High School who we all loved and who I felt so lucky to be friends with, was stricken with ALS.

Don Young! Kind hearted and larger than life! Who married his high school sweetheart, the darling (and powerfully tough and resilient) Deanne Calabrese Young. How could this be?

Don has been writing a blog about his journal, which is beyond inspiring. He has an unequalled talent for articulating his feelings, finding the joy in living for the day, and appreciating life’s moments in ways that most of us can’t.

Thirty years after we were all in school together, so many old friends are back in touch, rallying around our friend. I can’t help but think that in the face of this insidious, cruel, grim disease, there are some hidden gifts.

I will never understand why, but I am so thankful to reconnect with my old friends before it’s too late. And I’m also pretty grateful for a seemingly silly internet trend that just might raise enough money to ensure that my sweet friends are among the last to suffer from this cruelest of fates.

I challenge each of you reading this to do the following: 1) reach out to lift the spirits of an old friend, and 2) donate to support ALS research, and any other disease that you feel inspired to help eradicate. Let’s continue to use the viral power of the Internet for true good, and true change.

Erika Price Schulte is an OC native, wife, and mom to a 2nd grade, fast-growing, baseball-crazed boy. Having seen first-hand the power of real estate as a means to build a better future, Erika left a successful public relations career, with brands and clients such as Canon, Toyota, Bosch and The Joyful Child Foundation-In Memory of Samantha Runnion under her belt, to follow her dreams and help families use real estate to improve their quality of life, build wealth, and prepare for retirement. She’s also known as a passionate advocate for choice in public education (she’s a founder of Oxford Preparatory Academy, South Orange County, California’s leading K-8 charter school); cooking with local, fresh ingredients (with generous allowances for the odd Amy’s pizza or In-N-Out run); and especially her current career as a Realtor with Coldwell Banker. Erika can contacted at 949-636-4242