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What An ALS Family REALLY Thinks About the Ice Bucket Challenge

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The following post originally appeared on Bo Stern’s blog in response to the viral success of the ALS Ice Bucket challenge–a challenge that CaringBridge staff enthusiastically took on.

Well, we are on week two of the very-viral very-everywhere ALS ice bucket challenge. I know, I know, I can hear the groans…it started out cute and now it’s out-of-control. Played. Clogging up social media sites everywhere.

I even read this article in which the author called the challenge (that has raised an unprecedented amount of money for one of the most outrageously underfunded diseases) a waste of fresh water. Another headline whined, Is the Ice Bucket Challenge Going to Cure ALS?” Critics assert that people should just quietly donate their money and move on with their lives.

I get that they’re cranky, but I think maybe they don’t realize what it’s like to face this insidious disease and then realize that it’s nearly invisible to the rest of the world. As I watch my husband become entombed inside his own body, I feel desperate for people to understand that this sort of inhumane condition exists. But for some reason, while everyone acknowledges it’s one of the worst fates imaginable, funding for research and patient care is nearly nil.

Here’s the deal: We are in for the fight of our lives with this monster, and the very LAST thing I want is for people to give quietly, anonymously, and then slink away. Raise the roof! Raise a ruckus! Call all sorts of attention to yourself! I will be happy for you and every Facebook like you receive, as you nudge ALS an inch or two closer to the collective public consciousness.

So, fear not, dear reader, this too shall pass and your Facebook newsfeed will go back to cat videos and kids singing Let It Go. Until that happens, here’s a little reminder about what it’s like to live with ALS and why this level of awareness is like gold to families like mine.

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A Mile in ALS Shoes

People ask me often what it’s like to live with ALS. It’s a brave question because the answers are not very pleasant. But it’s also such a worthy question because understanding how this disease impacts those who suffer from it creates empathy which is so valuable. If you would like to experience just a tiny corner of an ALS life, I have a list of Empathetic Experiences for you. These are things you can do to walk for just a mile in ALS shoes.

1. Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.

2. Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: this is your life. Your only life.

3. Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking. Note the way people react to you.

4. Strap 25 pounds to your forearm. Now, adjust your rearview mirror.

5. Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Write down some of the feelings you have being cared for in this way.

6. Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.

7. Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?

8. Go to bed and stay in one position for as long as you possibly can, moving nothing.

9. Strap weights to your ankles and climb a flight of stairs, taking two at a time. That’s the kind of strength it takes for someone with ALS to tackle the stairs on a good day.

10. Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day.

And to my friends living with ALS: please give us more ideas and help us move into your world for a bit. I think I speak for many when I say: you are superheroes and we are in awe.

About the Author:

Bo Stern is a wife & mom, writer, speaker, pastor at Westside Church and author of Beautiful Battlefields. She is passionate about helping find a cure for ALS, a disease her husband has been fighting since 2011.

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11 Replies

  • By Ashley Kalman

    My father passed away with ALS on July 16th 2014. He was able to walk me down the aisle to get married on Oct 5th 2013. I want to do whatever I can to help others who are battling with this disease and their families.

  • By Lisa Gallus

    I will be honest I knew nothing of ALS before I saw the challenge on FB, so thank you for raising awareness for this devastating and horrible disease. I have donated and have taken the challenge myself in hopes that others are made aware, as I’m sure there are others, like me, who need to be informed.

  • By Jo Ann Reinhold

    I am so happy that this challenge has gone viral! The funds raised will help but most importantly is the rise in the awareness of the disease.
    This challenge, to me, is one of the BEST things that the media is doing right now.

  • By rosalie dansereau

    my nephew larry died of this insidious illness, and i have known 2 others that have ,bo stern explained it now we have to get rid of it.

  • By DonaldP Brooks

    THANK YOU !! ALS Patients first love their immediate caregiver, next it is others with ALS. At times we overlap as to who at a given moment we care for the most. I was at a gathering in Washington with ALS strangers and in a small group I listened to a lady share her soul and I had to cross the room, leaving my wife behind, and gave her a hug and and kiss as she laid in her chair. A love that I’m sure God would be happy to see through out the world. Only HE and others walking this road can fully understand the power in such love.

  • By Mary Kay Swenson

    My sister has had ALS since last summer. She still walks well and pushes herself physically. Her speech is affected as are the muscles in her tongue, neck, upper body. She was a Phy Ed teacher and loved being fit and toned. Every time I see an ALS ice bucket challenge makes me so happy to see this hideous disease get recognized and seeing the donations – wow!!

  • By Susan Laderoute

    I lost my brother to ALS…. for those who complain about the bucket of water wasted in the name of our brothers & sisters in drought countries… come back to me when you have given up showering,brushing your orthedontic white teeth & drinking bottled water! Try to live the life of someone suffering instead of being insufferable…

  • By lynn

    Precious Bo, The ice bucket challenge has brought AWARENESS of this devastating illness. You have brought understanding. …. compassion, …empathy. Thank you.

  • By Stacey

    ❤️

  • By Judith Mitchell Wilkerson

    My brother, Jeff Mitchell, died of ALS, in February, 2005, he lived with this terrible disease for a little over 1 year. It was fast moving and treacherous. I believe he was the most courageous man I know to battle it so alone…I know he is in heaven now applauding the Ice Bucket Challenges…..

  • By GalesMn

    I loved your article post. Really Great.