Jerry Davich: Ice bucket challenge dumps cold memories on one ALS survivor
JERRY DAVICH August 29, 2014 5:50PM
Robert Ordway and his father, Doug Ordway, center, who died in 2003 from ALS. | Photo provided
Updated: October 1, 2014 6:10AM
Have you watched enough of the impossible-to-miss ALS ice bucket challenges?
It seems everyone and their grandmother has done the once-novel and now-trendy fundraising challenge for amyotrophic lateral sclerosis, or ALS. I wonder if Lou Gehrig himself would have done it, too. Somehow, I don’t think so.
As you know, millions of good-hearted Americans have dumped a bucket of icy water over their heads while being video recorded. Beforehand, each one “nominates” three other people to do the same thing within 24 hours or donate $100 (or both) to the ALS fund. They then post that video on social media for viral grins and giggles.
It’s been an overwhelming win-win situation for everyone involved, including the drenched participants, a country starved for happy news and, most important, ALS fundraising efforts — with donations reaching more than a zillion dollars, or so it seems.
So much so that I’m convinced fundraiser organizers for other fatal diseases and debilitating conditions are pulling out their hair to replicate the amazingly successful “ice bucket challenge” for their own charity efforts.
Americans love nothing more than dousing themselves with a viral-friendly and good-intentioned fad that’s all the rage and joking about it at work the next day before — poof! — it becomes the “Macarena” and they soon forget about it. But ah, the icy-fun memories during a hot summer, right?
Plus, this ice bucket challenge offers a certain measure of social currency for participants, meaning it gives them a sense of value and purpose while being a part of something much larger than themselves. Humans love that. We always have.
Many of us call this church. It’s our latest “third place” experience.
Not everyone who did the challenge, though, came away feeling all warm and fuzzy for their efforts. For some participants, such as Robert Ordway of Valparaiso, the challenge and its pop culture ripples have poured icy-cold memories over their heads.
“From age 13 to 18 was the most challenging time of my life,” Ordway told me after recording a heartfelt challenge in honor of his father. (You can watch the video on his Facebook page.)
“The disease causes caregivers to learn how to suppress and repress all emotional connections because the loss is so great. We don’t want to experience it ever again. The longer the disease, the more one has to temper, harden and ultimately eradicate their own emotions.”
Ordway’s father, Doug Ordway, died of ALS in 2003 after a five-year grueling, unforgettable and ultimately futile battle. Robert, a high school student at the time, was his primary caregiver.
“The ice bucket challenge is so important because patients can’t vocalize their need, and there is no survival rate. For family like myself, the emotional and psychological pain is so great and long lasting — like a war vet — it’s something we just don’t talk about. Ever.”
But, he added, “For just a brief moment in time, an obscure but deadly disease is finally getting the recognition it deserves and I know the funding will be spent wisely.”
This touches on a chilly aspect regarding the challenge and its wealth of heartwarming donations. Many Americans, myself included, have legitimate concerns over where all that money is going and whose pocket it’s going into.
Is it directly helping ALS patients? Not quite. All charitable organizations cost serious money to operate. This is the double-edged reality of such causes. Personally, I forgo donating to charities at the national level and instead ask for a local person I could help directly. If anything, it makes me feel better about my effort to make a real difference.
“My life’s work is dedicated to making sure my dad’s story is known,” said Ordway, who grew up in an 864-square-foot house in Lake Station.
His father was a hard-working millright, a simple man with “Kentuckian values” of honor, integrity, work ethic and respect. “He loved life and lived it to the fullest,” Robert said.
Until he could no longer do so.
In 1997, Doug began experiencing bouts of physical weakness and slurring of speech. He was diagnosed with ALS on Robert’s 13th birthday.
“As an introverted nerd, my dad was my best friend so I had no one to confide in about the situation,” Robert recalled. “It’s emotional suppression, then repression at its worst. It leaves you permanently cold, mechanical and calculated. It’s the only way someone can function without losing their mind.”
Although Robert considered it an honor and privilege to care for his dad until his best friend’s death, “the day-to-day battle was a challenge,” he said. A lonely challenge, not one filled with ice water, laughs and shared with thousands of others.
“Each morning was a reminder that he was on the fast track to death and I was just an aid to get him there,” said Ordway, whose family also cared for Doug. “It was death by 1,000 cuts, with no way out for him. It was psychological terrorism for me.”
Doug died on Oct. 15, 2003, while Robert was away at college. Another hard lesson.
“He could have lived longer had he chose a breathing machine,” Robert said. “He never had a feeding tube either. He believed no one should see him in that shape. His quality of life was awful.”
Our existence often comes down to our quality of life.
Like Doug Ordway, it’s a simple term with complex overtones and a fatal outcome for all of us. I’ve interviewed several people afflicted with ALS and, each time, I came away saddened by their broken body but inspired by their blazing spirit.
Ordway hopes this newfound awareness of ALS doesn’t melt away with all those ice cubes, viral videos and trendiness for the latest fad.
“For me, this is about Doug Ordway and his battle with ALS. Anything I can do to educate, inform and spread awareness is a victory for future patients and families.”
Listen to Ordway in his own words on my Casual Fridays radio show archive, at http://lakeshorepublicmedia.org/local-programs/casual-fridays/