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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

  • Pdf

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.

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