Empty Gesture

ALS Sufferer: Ice Bucket Challenge is No Cure

Benedict Mülder can no longer move his arms or speak. Photo: David Heerde
Benedict Mülder cannot speak and is dependent on a computer with a voice synthesizer, a head signal and a panel with letters of the alphabet. Photo: David Heerde
  • Why it matters

    Why it matters

    The author, an ALS sufferer, takes issue with the highly-publicized global Ice Bucket Challenge, which went viral last month.

  • Facts

    Facts

    • Patients with severe ALS can require 24-hour nursing care and often need special devices such as voice-activated computers to communicate.
    • The author has been almost completely paralyzed for two-and-a-half years. His symptoms began with pain in the toenails and became progressively worse.
    • The Ice Bucket Challenge has generated more than $100 million in donations for the U.S.-based ALS Association.
  • Audio

    Audio

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It’s some challenge. You see people in their front yards, in their bathrooms or on a terrace next to a marijuana plant. You see girls playing, a woman whose bikini has slipped out of place, a horse being startled by the cold shower and throwing off its rider, and a famous billionaire building a device that allows him to do it while barely lifting a finger.

You see people dressed in expensive clothing, some in casual wear and others showing off their naked and healthy torsos. They’re all doing the same thing: Raising their arms and dumping a bucket of ice water over their heads on a warm summer day. (Although the longer the challenge continues, the more I suspect that the temperature of the water is likely to turn lukewarm).

It’s all made possible by the ego machine of the Internet. Anyone who is nominated but refuses to play along faces sharp criticism, although it’s also possible to buy your way out of what amounts to extortion. Still, even that isn’t necessary, because this symbolic campaign, which allows people to pose for an excessively brief and phony moment of compassion, is hollow. It lets the individual experience a moment of compassionate ecstasy.

I too would like to stretch my arms and raise them above my head. But I can only do it with the help of a physical therapist and sometimes when my nurses are washing my body. I’ve been completely paralyzed for the last two-and-a-half years, with my limbs chained to my bed as if they were made of lead.

It began six years ago, when I started having pain in my toenails and leg cramps, stumbling for no reason. Soon I had to start using a cane. I was still able to swim, but then developed peroneal palsy. Then I had to start using a walker. Muscle twitches called fasciculations were an indicator of muscular dystrophy, or ALS. I was confined to a wheelchair within six months.

Today I’m a 24-hour, in-home care patient. After having a tracheotomy, a machine about the size of a cosmetic case now pushes ambient air into my lungs. I’m aspirated six to eight times and fed through a tube. I consume high-quality fruit and vegetables, oil, cream and sometimes a bit of meat, all of it pureed, a lot of tea and occasionally beer and champagne. I didn’t tolerate the artificial diet normally used with feeding tubes.

God has been on my side. We travel and go on outings, and I try to work, using my eyes to write on a computer with a voice synthesizer. The things that keep me going are the love of my family, visits from friends and my many relatives, and the kindness of those who take care of me.

It’s a difficult challenge for everyone involved. I cannot speak and to communicate I depend on the computer, which doesn’t always work, a head signal and a panel with letters of the alphabet. The last one, in particular, requires a lot of patience. The only way for me to indicate which letters I mean is to raise my eyebrows, which is tedious and the source of many strenuous mistakes. My 14-year-old son is the best at guessing words after the first few letters.

The head signal is a blessing and a curse alike. It’s a critical tool for me, especially at night and when I don’t have the computer in front of my eyes. I can only move my head back and forth by a few millimeters. If the signal is attached incorrectly – too close to my head – it sets off a tone many perceive as a hellish noise, a nerve-wracking affair for neighbors and others. If it’s too far away from my head, so that I can’t reach it, I feel agonizing pain that only magnifies my helplessness and dependency.

I’m like Gregor Samsa in Kafka’s “The Metamorphosis,” except that I can’t move at all. It’s a condition between captivity in the hands of caring people and being on vacation. You don’t have to do anything if you don’t want to. Someone shaves you, there’s no need to go shopping, your meals are prepared for you and an enema ensures that your bowels are emptied when necessary.

I’m lucky in that I’m mostly free of pain. I just have pain in my lower lip because I’m constantly biting it involuntarily. I also feel like I have restraints on my ­feet, hands and neck, and that too isn’t about to change. Only my thoughts and emotions are unfettered. Laughing and weeping are closely related reactions.

My ears burn and tears flow into my ears, which feel itchy, but I’m beginning to get used to it. A bit of lint under my nose becomes a curse, but fortunately a caregiver’s hand offers relief. It’s hard to believe how many places on your body can itch.

Being cared for is easier for someone with a tendency to be subservient, which I have trouble enduring. I become upset about inadequacies in spelling out words and the occasional neglect of professional standards, and it drives me up the wall when my needs are ignored for too long. ALS patients are traditionalists who need the routines to which they’re accustomed.

ice bucket Heidi Klum ap
Heidi Klum and Tim Gunn take part in the ALS Ice Bucket Challenge during the Project Runway finale at Mercedes-Benz Fashion Week on Sept. 5 in New York. Source: AP/Andy Kropa/Invision

 

All of this is to say that the Ice Bucket Challenge has nothing to do with ALS. Rather, it’s a symptom of a troubled society. We’ve known about the disease for 100 years. The narcissistic campaign, which some seek to glorify by calling it “altruistic,” is insincere, presumptuous and miles away from any aim to educate people. Anyone can feel chilly. It isn’t a unique symptom of the disease. Reports of deaths as a result of the challenge increase the thrill of it all – or do they serve as a warning of some sort?

It’s undoubtedly a good cause. The US-based ALS Association has already collected more than $100 million (€77 million) in donations. The campaign has drawn attention to reports of excessive pay for executives at the foundation and the fact that R&D consumed 28 percent of its budget last year. Berlin’s Charité Hospital has received more than €1 million in donations through the challenge. As the saying goes, pecunia non olet – money doesn’t stink. Still, I don’t think the end justifies the means.

What I want is more genuine, voluntary commitment to the freedom and integrity of Ukraine against Russian President Vladimir Putin, the land grabber, and I wish civil society weren’t left cold by the barbaric messengers of death with Islamist groups like the Islamic State and Boko Haram.

Benedict Maria Mülder is a journalist based in Berlin. Born in Emsdetten in northwestern Germany in 1955, he wrote about Berlin politics for the Die Tageszeitung newspaper for many years before working as a freelance TV journalist.

This article originally appeared in Der Tagesspiegel. It was translated by Christopher Sultan. To contact the author: redaktion@tagesspiegel.de

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