ALS Ice Bucket Challenge videos are undoubtedly taking over your Facebook timeline. That annoys some people. But the young man in the video below is proof that the awareness and funding* is doing one of two things: Educating people on a disease they previously knew nothing about or making it OK to talk about an otherwise taboo subject.
In the clip, Anthony Carbajal, 26, takes the Ice Bucket Challenge (it’s kind of hilarious) but then explainswhy he did so: His grandmother had ALS, his mother was diagnosed when he was in high school, and five months ago, he too was diagnosed.
“I promise your newsfeed will go back to cat videos and ‘Let It Go’ covers, but right now the ALS community has the main spotlight, and for once in my entire life I see it in the forefront,” Carbajal says.
His seven-minute video is hard to watch at times — because it’s honest.
“I apologize for my rant and for my tears, but if I simply dump ice on my head I don’t think you’re really gonna get the point,” he says. “This is the first successful advocacy we’ve really ever had, and I am so, so grateful. You have no idea how every single challenge makes me feel, lifts my spirits, lifts every single ALS patient’s spirits. You’re really, truly making a difference.”
At first we were excited about getting 100 likes on Facebook and having people call us out in their videos. Then a few days later, Dad bursts into tears because he sees his face and his message on the Huffington Post. The ice bucket challenge is social media activism reaching unprecedented levels, and I’m witnessing it all firsthand. Not only are ALS organizations across the nation receiving massive increases in donations, but the Palko family is as well. Complete and total strangers are reaching into their pockets to help out a family they don’t even know. Strangers are reading this right now because of the amazing power of social media. In the past week my inbox has been flooded with hundreds of messages from people who saw the video and had something nice to say, some information to share, a story to tell. About 100 of those messages came from people whose lives are directly affected by ALS. Dozens of those are sons and daughters of parents who are suffering from ALS or who have already passed from it.
Before all of this social media madness, I didn’t know anybody else in my shoes. I have amazing support and incredible friends, but nobody quite understood what it’s like to be experiencing this. And now, thanks to our video going viral, I’ve been in touch with other people who know exactly what I feel like. They know how hard it is to leave home and go to college when your parents are home suffering. They gave me a hint to call my dad’s cell phone and let it ring through to his voicemail so I hear the message he recorded a few years ago and remember what his voice used to sound like. They have stories about their dads running wheelchairs into walls. I feel less alone.
Now what would the Internet be without comments of criticism? To those suffering from drought on the West Coast, I sincerely wish I could give you all the water that’s been pouring down on the East Coast. I wish all of these buckets dumped over people’s heads could be dumped over your gardens, farms and rivers. Maybe we can start dumping buckets of sand over our heads to raise awareness and demand action for drought and climate change. My entire academic life is devoted to environmental studies, so I would be thrilled if the next big social media campaign targets these drastic problems.
For those who are annoyed with the ice bucket challenge taking up your news feed and for those who think this really isn’t doing anything, I first want you ask you if you knew about ALS before this happened. If you did, great! If you didn’t, well now you do! This disease is receiving more attention than it’s ever gotten. ALS organizations across the nation have received millions of dollars over the past couple days. Those donations will be channeled into research that will hopefully figure out this disease. Because right now there is almost nothing known about ALS. We don’t know how it’s caused, we don’t know how to treat it and we sure as hell don’t have a cure. This matters because maybe one day you or your father or mother or the love of your life will be diagnosed with ALS. It will be the most terrifying diagnosis you ever receive. Because your life might end up looking like this. Because you will learn that you have about 2-5 years to live. You will see your hands stop working, your legs stop walking, your voice stop talking, your breathing disappearing. But your brain will still function perfectly, and it will have to process how insanely debilitating and depressing it is to watch your body slowly turn to mush while your loved ones surround you in confusion and sadness.
Here in the Palko house we have good days and bad days, just like everybody else. We laugh when the dogs jump up on Dad’s wheelchair, drink good beer and watch Jimmy Fallon. But sometimes we have really, really bad days. My mom’s birthday was earlier this week. When she left to go on an hour walk with her friend — the first time she’s been able to leave the house and do something for herself — Dad and I were alone to decorate and prepare her birthday dinner. As I scurried around the house trying to get everything in order, I stepped into Dad’s room to find him quietly crying. I ask what’s wrong and he says he just wants to help. He begins to sob; I begin to sob. We laugh at each other crying and then cry some more. He just wants to set the table, to hang some streamers, to sign her birthday card and buy a gift for my mother. My incredibly strong, amazing mother, who works tirelessly to make sure we keep a roof over our heads and wheelchair ramps under our feet. Who serves as Dad’s arms and legs. Who gets up three times every single night to go downstairs to check on him, flip him over in bed, adjust his covers. Who drives him multiple times a week to Boston so he can work with physical therapists and blow doctors away by walking more than they expect. My mother is the most under-recognized person in all of this, and we would be nothing without her.
But she’s tired. We’re all tired. We’re sad, confused, frustrated, aggravated and exhausted. We fall into fits of uncontrollable crying because this is hard, but life is hard. It’s hard for everybody on this planet. Every day we remain alive is a damn miracle. It’s overwhelming to see what’s going on in the world. I wake up to news about Israel and Palestine, an immigration and refugee crisis at our border, blatant racism alive and well in our country, California being sucked dry, Robin Williams dead…
Everybody is just trying to survive on this planet. And while life is hard and overwhelming, we survive. Because the human spirit is strong and triumphs adversity. There is tremendous good in the world. I’m seeing it right now. Friends, family, and complete strangers are reaching out to show they care. I wake up to messages of people saying how inspired they are to help, how they donated despite having almost no money in their bank accounts, how they offer words of comfort and solidarity in a struggle that once seemed impossibly tough, now seems possible. I find strength and courage and hope in these people’s words. They encourage my family and me to be brave and set an example others facing challenge. Good acts propel this world forward; whether it’s saying one nice thing to somebody who needs to hear it, volunteering, protesting for a cause you believe in, being a friend to someone with depression, or donating money to help fight ALS or any other cause that’s important to you. People are always looking for stories that “restore their faith in humanity.” How about doing something every day so that your faith in humanity is constant and doesn’t need restoring? Live compassionately, and in the words of one of my heroes, Neil deGrasse Tyson, lessen the suffering of others. Whatever you do to help another person survive on this crazy planet is doing good for not only them but for you too.
The ice bucket challenge will probably die down soon, but our fight with ALS is just beginning. Now that so many people are more aware of ALS and these organizations have some money, maybe we can start some groundbreaking studies to help find a cure. The progression of science and the medical world have accomplished incredible feats. We’ve eradicated deadly diseases, prevented viruses, treated cancers, cured illnesses. Now it’s ALS’s turn. Let’s turn this terminal illness into a treatable one.
I hope more than anything that Dad’s 8 million stem cells kick in and the next video to go viral is of him skiing or surfing again. Or of Pete Frates tossing a baseball to his expected child, or Steve Gleason throwing a football back in the stadium where he belongs. I hope it’s a video of a person dying of ALS all of a sudden able use his or her arms again to hug their families and use their own voice instead of a computer’s to say I love you.
When that video comes out, you will look back and remember why the ice bucket challenge mattered.
Right now, Facebook is exploding with Ice Bucket Challenge videos. At this point, most of your friends have probably taken the bet — dumping a bucket of ice water on their heads to raise awareness and funding for amyotrophic lateral sclerosis (ALS, commonly known as “Lou Gehrig’s disease”). The campaign has grown into a phenomena in only two months; to date, it’s raised more than $168,000.
If you’ve been on Facebook recently, you may have noticed a lot of your friends posting videos where they pour buckets of ice water on their heads to raise money and awareness for amyotrophic lateral sclerosis (ALS, commonly known as “Lou Gehrig’s disease”). But just how effective is this viral campaign?
The concept behind “The Ice Bucket Challenge” is simple: People dump a bucket of freezing water on themselves and dare their friends to do the same within 24 hours. If they refuse the dare, they’re encouraged to donate money to an ALS charity of their choice.
While the campaign has garnered a significant amount of attention on Facebook, theoretically, every video you see is of someone choosing to spread awareness rather than donate money. However, the ALS Association’s national president, Barbara Newhouse, told a CBS Boston affiliate that donations this year are exceeding $168,000. This time last year, the Association had raised $14,000.
“It’s both pieces. It’s seeing people do this and also donating to your local ALS chapter or whatever you choose,” she explained to the magazine. “It’s become so big now, people are questioning whether it’s effective, but it’s definitely effective. We just got a call from our Massachusetts ALS association who said donations are up 10 times this week from what they were this time last year. So obviously, Pete’s fund sees the benefits of it, but it’s much broader than our foundation… we’re making real progress here. It’s not just a trending thing on Facebook.”
On the day doctors told Steve Dezember he had Amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig’s disease, Dezember gave his girlfriend, Hope Cross, a way out. The progressive neurodegenerative disease that began as just a pain in his wrist threatened to take his life within three to five years.
“You don’t have to stay,” he said. “You can leave.”
Cross refused. “I loved him too much,” she told The Mighty. “I couldn’t imagine leaving him to go through this alone.”
Two days later, Dezember took Cross to their favorite spot in Johns Creek, Ga., and proposed.
“I felt like I had found such a selfless man,” Cross says now. “Here he was dealing with his own news and he was thinking about how to make our engagement special.” Soon after, they were married.
Dezember took part in a clinical trial two days after the wedding, but his symptoms soon worsened. Cross stood by as he lost the ability to walk, talk, breathe on his own and feed himself – today, he eats through an IV. Instead of hiring a nurse, Cross left her job as a psychotherapist and became her husband’s full-time caretaker.
“Steve’s never really acted like he’s sick,” Cross told The Mighty. “I think it’s what keeps him going.”
When the couple realized the powerful reaction their friends and family were having to their wedding video, they decided to make a short film about their life with ALS. They wanted people to know what the disease was, to become invested in finding a cure.
“It was going to be like a, ‘This is what ALS is,’ 15-minute video,” Cross said. “But it turned into much, much more.”
On June 1, 2014, “HOPE For Steve” (trailer above) premiered in Atlanta, Ga., in front of 700 people, including Dezember and Cross. The film is, of course, about ALS — but the couple’s love story overwhelms it.
“We obviously want to change the course of ALS for the future,” Cross told The Mighty. “But we also want to inspire people to pay more attention to their life, to realize there’s something to be grateful for each day, to take adventures, even if that just means spending more time outside.”
As they work to raise money and awareness for Dezember’s foundation and the ALS Association, the couple work to treat each day they have together like a gift. Their love gives them hope.
“When my mother was pregnant with me, my father left her,” Cross reveals. “When I was born and I was healthy, she thought, ‘OK, this is my hope to go on with my life.’ That’s how I got my name.”
It’s a 2-year-old story. A community rallies around a neighbor with amyotrophic lateral sclerosis (ALS), more commonly known as “Lou Gehrig’s Disease.” Six swimmers take on the English Channel to raise money and ALS awareness in his honor. One of those six is diagnosed with stage 2 breast cancer four months before that swim but completes the challenge, anyway. A world record is broken.
It’s a 2-year-old story. But its characters aren’t finished telling it.
In 2008, when doctors told Bob Schoeni, a research professor at the University of Michigan, that they were 99 percent sure he had ALS, the father of two sat defeated. He figured he had two or three years to live before the debilitating disease would take him from his wife of 18 years, Gretchen Spreitzer, and their 8- and 10-year-old daughters.
“Devastating,” Schoeni, now 50, recalls. “Just devastating.”
He realized he had some reassessing to do — how would he live his now certainly shorter life? What were his goals and aspirations? Would he and his wife go after a luxurious, world-wide bucket list? Would he try to pack decades of experiences into a shrinking timetable? At one point, the answer became clear to him: He loved the life he already had. That bucket list was being marked off by family dinners and fulfilling work and afternoons with his wife. If ALS’s aggressive symptoms were going to soon start taking their toll on him, he’d spend the remaining time living out his already perfect bucket list — researching and teaching, coaching his daughter’s youth field hockey team, and spending time with his family.
How would he live his now certainly shorter life? Exactly as he had been.
“I think it’s healthy, wonderful even, for us to think about how we might choose to live if our time here is shorter than expected,” Schoeni says now. “I was fortunate to already be living the life I wanted.”
“An important piece of all this is to feel like every day, what you’re doing brings joy and meaning in your life to those around you,” Spreitzer adds. “Bob certainly takes a lot more time these days to listen and make connections with people on a day-to-day basis.”
Schoeni and his family were already beloved in their neighborhood when they got the diagnosis. Proof of this were the neighbors who, less than six weeks later, approached them with an idea: they wanted to start a nonprofit — Ann Arbor Active Against ALS (A2A3)– to raise funds to find effective treatments and ultimately a cure for ALS.
“We’re actually not involved in the governance of the nonprofit. I think they did that on purpose, as if not to burden us with having to make decisions or investing too much time,” Spreitzer explains. “Sometimes we feel uneasy about it, that they’re devoting so much time of their lives into doing these activities for us. But I can’t tell you the number of times people have said genuinely, ‘We need this almost as much as you need it. It’s been a privilege to be a part of something bigger than ourselves.'”
From A2A3 is where that 2-year-old story began, really. Because one of its board members, Amanda Mercer, a former swimmer at Michigan State University, one day got it in her head to form a relay team and swim the English Channel to raise $100,000 for ALS research.
“We’d been thinking about doing the swim for a little bit, but no one was super excited about it,” Mercer, now 42, recalls. “Then it hit me. We needed to do this swim for Bob. It suddenly took on a whole different dimension that had so much more meaning.”
“I kind of thought she was joking at first,” Schoeni recalls. “Over time it became clear to me that when Amanda sets her mind to something, it gets done. This was going to happen.”
For a year, Mercer and five other swimmers trained. But in March 2012, four months away from the race, she found she was facing a larger, more terrifying challenge.
“That word — ‘cancer.’ You hear it, and it just scares you. The unknown scares you,” Mercer says. She was tempted to surrender to self-pity. Then, she stopped herself.
“I had to flip that perspective around because it wasn’t going to do me any good,” Mercer says. She went to her first doctor’s appointment with a calendar and a plan. She’d have a lumpectomy and begin her chemotherapy. She’d swim the Channel, come home and continue her radiation. Doctors told her they didn’t think she’d be able to make the swim — she’d be too tired from treatments. Mercer shook them off. “I was gonna swim that Channel,” she says.
When Speitzer found out about Mercer’s diagnosis, she called her neighbor up.
“I just can’t believe the timing in all of this,” Speitzer said, assuming Mercer would have to surrender her spot on the relay team. “It’s all so ironic.”
“Isn’t this actually the best timing?” Mercer replied. Speitzer was a little bit shocked.
“I was in the best shape of my life, and I had hope,” Mercer explains now. “I had hope that Bob didn’t have when he was diagnosed. And now I had this goal that I could focus on instead of my disease. If I was going to get cancer, that was the time to get it.”
“When we initially broke the record, for some reason I wanted it to feel bigger,” Mercer recalls. “It wasn’t until weeks later that I realized it wasn’t about the record at all. It was about hopefully making a difference in Bob’s life and in the lives of people with ALS. It was about giving them hope.”
When Mercer returned home to finish her radiation, her eyes began to bother her. As a precaution, her optometrist sent her to an ophthalmic oncologist who suggested a cat scan, which later revealed the lining of an aneurism. They scheduled Mercer for a craniotomy, where they found that aneurism ready to burst. But they’d found and removed it just in time.
“In a strange twist of fate, breast cancer saved my life,” Mercer says. Today, she has a clean bill of health.
It’s been two years since that swim, but Schoeni uses its memory to remind him that he and his family will always have support. He’s lucky, he says, because his symptoms have progressed slower than doctors anticipated. He’s learn to accept help — something he found difficult when first diagnosed.
“I live a quote, unquote, normal life,” he says. “I certainly can’t do things that I used to be able to do, but I can do things and have developed abilities that weren’t there before, too.”
Schoeni will always tell his story to anyone who asks, but he’s hesitant to compare himself to others with ALS — he doesn’t want to be mistaken for the voice of the disease or to generalize the experience of having it.
“But I believe in openness,” he says. “If others can learn from my situation in some way, I see that as a good thing.”
“I guess we feel like if our story can help give others a sense of hope when they’re in difficult situations, then it’s worth sharing,” Spreitzer adds. “It’s empowering. It’s about facing challenges and helping others. That makes it worth telling.”
Watch “One Step Ahead” below. These 28 minutes are worth your time.