It was a big day here yesterday, which you would have known if you’d seen me, because I was wearing lipstick. Like, actual lipstick, not just the bacon chapstick I slather on daily. In case you think that was a joke, that was not a joke.
Do I lose credibility immediately upon admitting that my “big” morning involved volunteering for the Carnevale party at Scarlett’s school? I just thought the children would appreciate that bit of extra makeup effort. I also wore a multicolored beaded necklace for them, because I am nothing if not festive. Although I am evidently not as festive as one of the other moms there, who was dressed head to toe as Queen Elsa.
I have always been the kind of mom who wants to be very involved at school, but after ALS sat me down for good, I was certain my classroom volunteering days were over. I normally just watch the email requests go by, thinking I won’t be helpful, best to let someone else do it. But last week our room parent sent a note saying she still needed help, and instead of blowing it off again, I thought, well, why not me?
So along with one other mom, I helped guide a train of kids around the school to different classrooms hosting different activities. When you’re guiding kids around, all you really need to be able to do is tell them to move or tell them to stop. It also helps to have a horn on your wheelchair.
As we headed off to our first activity, Scarlett’s very well-meaning teacher handed me a camera and asked me to take the photos. I was too surprised to voice my initial reaction, which would no doubt have been something eloquent along the lines of “Are you kidding? I can barely brush my teeth.” Instead, I took the camera and managed to get pictures of the kids singing, drawing, dancing, listening to stories, and making cookies. I neglected to take any pictures of them shoveling powdered sugar into their mouths, because I was too busy gently (nope, not gently) suggesting that they stop doing that.
All the pictures might suck completely, but that’s hardly the point.
Back in my book publishing days, I was part of a corporate team building exercise in which a group of us was asked, What is the story that you tell yourself that keeps you from succeeding? People had different stories, but many of them were about confidence, or really lack of confidence. It’s so easy to tell yourself that you’re the one who doesn’t belong, that everyone else has got it figured out, and you’ll soon be discovered as the fraud. But that’s usually bullshit.
The story I’ve been telling myself about my ALS is that I can’t contribute. And it just isn’t true. Maybe one day it will be, when my voice doesn’t rise to smack down some 5-year-old sugar fiends. When my hands really won’t have the strength to capture moments on camera. But the lesson I learned yesterday is that I am far more capable than I sometimes feel. And I’m grateful to Scarlett’s teacher for letting me know that he thinks I’m capable by giving me a chance to screw up all the photos.
A further lesson I learned is that I am a normal human, meaning that after even 60 minutes in a preschool environment, I am ready to go do something much different. Something that involves less crying, less chaos, more reason. Something centering around people who don’t eat things out of their noses.
I adore my child and her darling friends. But the final lesson I learned yesterday: Preschool teachers are saints.
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You are contributing constantly. That’s why so many of us read your blog RELIGOUSLY.
I love reading your stories. They are so inspirational and thoughtful. Continue to volunteer at your daughter’s school. She will remember these moments forever. I a not for sure if you remember me. When you attended Percy Julian Jr. high School., I was the Dean., Dean Barnes. Your dad and I worked together for many years. Take care.
My husband was also diagnosed in 2012 with ALS. We have also found keeping a sense of humor while dealing with this disease helps to keep you sane. Bill, my husband, has bulbar onset, so he is able to walk but unable to swallow, eat or breath without assistance (mic-key tube, IPad, diaphragm pacer with Bipap). You are an inspiration and we enjoy reading your blog – Thank you.
Oh my gosh I loved this, thank you! Helping at my son’s school has been such a joy for me, and sometimes torture, such as the time I didn’t bring enough cupcakes for everyone to have 2 and the result was like a scene from The Hunger Games.
Hilarious!
I remember you well, sending hugs!
xoxo
Thank you, Donna. Hugs to you and Bill.
Sarah, good for you! I totally understand. It is even hard for me to want to go to the grocery store. With only one working limb, I cannot talk and run the wheelchair. I must stop, type my message, and hope it is not too noisy for iPad to be heard. Hard to go from being the “doer” to the “watcher”.❤️
I’m still smiling and admiring you so much, as well as the lesson, we can always contribute regardless of our situation, “where there is life, there is hope”, celebrating what we can do, not what we can’t.
Where exactly does one find bacon chapstick? mmm. Loved this!
Your last two blogs left me grinning. Amazingly easy to find we can do things if only we have the courage to try. Looks to me that you are gathering more of that these days. Go girl!!!!!!!!!!!!!!!
Thank you, Sarah! it’s such a gift when we can use our experiences to invite healing and transformation in others. another beautiful post! –Valerie (sister of Rob C’s buddy, Adam Lasoff)
Sarah, you always make me think! Sometimes laugh, sometimes cry, but you always make me think, and then possibly learn a thing or two. It’s almost a shame that we are only limited by our imaginations. It puts the responsibility for our happiness on our own shoulders, requiring us to put forth creative energy, even when giving up and moping about is so easy and tempting – but not rewarding in any way.
Sarah,
As a preschool teacher of the past 19 years and the wife of an incredible man with ALS for the past 4 years, I especially loved this blog! Being a preschool teacher has gifted me with more patience than I knew I was capable of plus the ability to adapt to an ever changing situation (3 year olds can switch moods very quickly!!). Very helpful now as we adapt to the changes ALS brings. Plus I have never had a job with more laughter and love. Something we can all use more of for sure.
Thank you for your insightful and very down to earth blogs, I eagerly await each one. Know that you are impacting many lives in a very positive way.
Kathy
Publican Quality Meats in Chicago.