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.
Empathy isn’t the same as sympathy. Sympathy means we feel sorry for people, empathy means we work to understand and identify with their pain. Empathy isn’t always easy to squeeze into our busy and difficult lives, but it’s worth it. It makes us more human in all the ways that matter and – in the search for a cure for ALS – empathy is our most effective motivator.
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,
P.S. If you want to literally walk a mile and help fund research for a cure, sign up to join Team Stern on September 8 for the Walk to Defeat ALS. Lots more on that to come!
Rochelle - Well said Bo, it is unimaginable what those living with ALS face. My dad lived with ALS for 14 years, he was diagnosed at 31 years old. You are so right, they “are superheroes and I am in awe”…
Nita Belles - Those are tough shoes, only fitted for hero’s and their families. Thank you Bo for helping us put on those lenses…and your an count on us for the ALS Walk.
With love and admiration for Team Stearn…24/7
Krystal Brown - Wow, you are so expressive. Very well said. Many of these statements fit spinal muscular atrophy also. We can so relate. Always helpful to have those who can really articulate the way life is for so many with severe disabilities.
We always say how different the world would be if everyone spent just a few days in a wheelchair, which is one of the requirements for trainers at Canine Companions Training facility in Santa Rosa. “Walk a Mile in my shoes” Or in this case, “Sit a mile and a few days in my chair”.
Lora - Dear Bo,
I can’t tell you how similar Ryan’s disease is to ALS. He faces such similar obstacles and you write so beautifully and explain it so well. We are in year 16 of his disease now and I must agree that these brave souls fighting ALS and diseases like it really are super heros. Prayers and ((hugs)) to you.
Lora (your neighbor’s daughter) 🙂
bo - Thanks, Rochelle. You have also walked a long road with ALS – bless you and as we approach this Sunday, I wish you the sweetest day, remembering your superhero dad.
bo - Thank you so much, Nita. I’m very grateful for you. (And you, my friend, are RICH with empathy. 🙂
bo - Krystal and Lora – I admire your family more than I can say. You have made Ryan’s life so safe and sweet – it’s beautiful to watch from across the street. 🙂 Prayers and hugs right back.
Steve White - Very intuitive Bo. Thought my blog entry from 2009 may be another candidate for your list. Scroll down to the entry dated Aug 21st titled “A challenge of sorts”.
bo - Thank you, Steve! Your blog is a GREAT resource for those who want to know more about life with ALS. Thanks so much for sharing it with us.
Kirsten Herkenhoff - I have only stumbled upon your blog and have found some of it hitting so close to home. I lost my dad to ALS last October and think you have such an amazing way to put into words what ALS is all about. He, too, was a very strong, athletic man who took great care of himself, only to be slowly taken down by this horrible disease. His amazing attitude and love helped us all through it. I just registered again as our team captian for our ALS walk team for the 6th year and will think of you and yours when we walk in memory (and honor) and not just in honor this Sept. 22nd. Blessings to you!