This past week as I was bombarded with ice bucket video clips on Facebook, I thought to myself…..I need to blog about this!! I want to do my part to bring awareness to this terrible disease. I thought about all the different spins I could put into the post. And then, just like that, an amazing article was brought to my attention. An article written by someone who this disease has personally touched. As I read through her thoughts which she herself blogged about, I knew I could not put into words, what she had managed to do.
Read on…
What An ALS Family REALLY Thinks About the Ice Bucket Challenge
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 an 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?” Um, no (and – btw – that’s a stupid bar to set for any fundraiser.) Critics complain that the challenge is really about feeding our American narcissism and does nothing for ALS awareness or funding. They 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. I recently mentioned to a doctor that my husband has ALS and she first looked confused and then said, “Oh, that’s Lou Gehrig’s Disease, right?” Right. Why does she -a doctor of medicine – still only know it by Lou Gehrigs Disease? Because we humans need to associate things with people. It’s easier that way. That’s why the celebrity faces and personal challenges happening in the ice bucket challenge are so effective at bringing in money. And if someone gets to look good while plunking their $50 in the ALS tip jar, I have zero problem with that.
Because 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; it carries us into another person’s world and allows us to understand what they’re feeling and how they’re hurting. As I watch my strong husband struggle with things that used to be easy and automatic, I sometimes wish that everyone could see life from his perspective.
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. If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go.
- Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
- 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.
- 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.
- Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
- 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.
- 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.
- 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?
- Go to bed and stay in one position for as long as you possibly can, moving nothing.
- 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.
- 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. We want to help make your lives rich and full and I’m not sure we can do that without at least a basic understanding of what you are facing. I think I speak for many when I say: you are superheroes and we are in awe.
With unending hope for a million-mile cure,
Bo
Being Margaret 
Just wanted to say this post really moved me thank you x
Sent from my iPhone
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You’re Welcome. 🙂 I hope that it touches a lot of people while also bringing awareness to the disease.
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This is a very touching and informative tribute to those living with ALS.
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You’re welcome. Im happy to bring awareness any way I can.
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Thanks for a touching and very helpful post. I was one of those cranky ones for all the bucket videos thinking quiet donations would be better. Thanks for a dose of empathy.
blessings, Brad
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I’m glad it shed some light on the disease for you and on the response from the families who are touched with this awful condition.
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Thanks for posting. We had a dear friend die from ALS … it is a devastating disease.
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Happy to do it!
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What a great post – I am glad of the greater understanding you have given me with this post. It is such a terrible disease and we clearly need more funding for more research. Have you read Tuesdays with Morrie by Mitch Albom – in which Morrie discusses all aspects of life and vividly describes living with what was then called Lou Gehrings disease – very moving, sad yet life affirming (too use a too frequently used phrase)
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I had read Tuesdays with Morrie when it first came out. Funny, I do not remember that ALS was the disease that ultimately took his life. I will be interested in reading it again. Thank you for mentioning.
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It was called Lou Gehrings disease then but as I understand they are the same thing. Enjoy re-reading it, it is one of my favourite books of all time.
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Your post is informative and put a deeply human perspective on the disease. Thank -you.
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You’re welcome.
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Thank you. For me this post is eye opening & has triggered curiousity to learn more about this terrible disease.
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I’m so glad. I hope it opens the eyes and hearts of many.
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This is all close to home. A neighbour and friend passed away a few months ago – ALS. Before that it was just an acronym that appeared on the news occasionally. It needs to be brought forward to the collective consciousness and kudos to whoever thought of the idea.
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I agree. And ,Thank You, Lynne. It seems like such a simple idea, yet, look at all the good it is doing and awareness to help find a cure. It must have been terrible watching your neighbor go through the stages. Hoping that this ice bucket challenge is bring encouragement to those families and individuals who are afflicted with this disease and live through the nightmare every day.
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I just can’t imagine but this helps me try. I have seen lots of pain and suffering in my former job in hospitals and as a caregiver. This is the worst in my opinion. My biggest fear is to be trapped in my body or to have that happen to a loved one. Thanks for the post.
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As I just wrote to Lynne above, it is such a simple, silly challenge that I hope brings enough awareness and funding to put us on the road to finding a cure. Thanks Nora for all you do in volunteering with those in need. You are truly an angel.
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I didn’t have to try any of the empathetic list. Reading them was enough to open my eyes to the everyday challenges that you face. You are an inspiration. One love 🙂
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Our pastor retired and two years later his wife died of ALS. Thanks for sharing, it is such a terrible disease.
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Reblogged this on mapsworldwide blog and commented:
Like many other my personal media accounts have been bombarded with ice bucket videos. But the idea of what it is like to live with ALS is humbling!
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This is a disease I’ve always known as Lou Gehrig’s disease. I realize that it’s devastating for the families and those suffering with ALS and applaud efforts to raise consciousness about its impact and to raise money to help find a cure.
The real issue should not be who is getting doused. It should be on the message. Some of that is lost in the enthusiasm to take part in the Ice Bucket Challenge. One of the videos I saw didn’t even mention ALS. Nor was it on the post. So that message was lost. I thought actor Patrick Stewart handled this the best. He put the ice in a drink and wrote a check for ALS. That might be too quiet an approach for some, but it does raise awareness and does raise money to battle a deadly disease.
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Bo,having dealt with devestation myself I understand what it feels like to be in a way”set apart,” from those blissfully unaware of your struggles.It is also very hard finding others who understand.I remember my Mom explaining seeing people out places and feeling so removed from them because they didn’t “get it.”
All of the empathetic examples you gave are terrible&unfair and shouldn’t happen to anyone.Everyone should have a “normal,” happy life 🙂
Family friends of ours were happy to go out somewhere simple just because it wasn’t a Doctors office(brain tumor at9 y/o)I was so mad because NOONE should have to live around Doctor appointments or be part of the horrible U.S. medical machine!I’m sure you unfortunately understand that 😦
Overall great blog,and I will be following♡♡
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