Some days, when I sit down to write this blog, I struggle with what tone to convey. I want it to be realistic, but not too negative. Optimistic, but not phony. Ultimately, I want to make sure that what I say is true. But throughout any given day, there are so many truths, and they all have moods that go along with them.
I now have to use a fist to punch the microwave open. I rarely bother doing this, but in a pinch, it does work. My fingers get tired of typing, and today I tried using my knuckles instead (not recommended.) I sometimes open the refrigerator, see what I want, and know that there is absolutely no way I can get it.
That’s all on the downer side of things. It’s true that I am feeling more paralyzed lately. It’s a word I used to use figuratively—unable to make a decision, rooted to one spot in fear. Now, it’s really quite literal. My arms are heavy, and lifting them requires an energy that I once reserved for gym visits or moving day. But back then, using my arms made me feel stronger; the more I used them, the stronger they got. Now, it seems they have a finite amount of movement left in them. I am using it up.
But if I say only that, it paints a picture of my life that leaves little room for the good parts. I held Scarlett in my lap one morning last weekend, and we watched Sleeping Beauty. I was perfectly content, kissing her a hundred times, while she told me that she wanted to be a princess and marry a prince with “velvet hair”. Though I wouldn’t have expected this, or even really wanted it to be true, watching movies with Scarlett is my new definition of happiness.
If I only told stories of microwave punching, how would you know that my sister and her family came over for dinner one night, and we laughed like crazy and watched Scarlett and my nephew Jack sing You Are My Sunshine? That Scarlett and I went to the library and she insisted on adding to her stack a book about Marie Antoinette that was probably written for 12-year-olds? We won’t read it, I don’t think. Scarlett just likes to look at it and say, “Let them have cake.”
“Was Marie Antoinette nice?” I ask.
“Yes,” she nods solemnly. “Because…cake.”
We talk a lot, she and I, and sometimes she starts a sentence like this, “When I grow up and get weak legs…”
“That’s not going to happen to you,” I say.
I don’t cut her off, but I am firm. We move on to talk of other things. We decide what music to listen to.
And then. When it starts to sound like despite it all, I’m handling myself with grace and patience, it’s time to share the other side of things again. Like when Scarlett asks for the kind of help that only a nimble-fingered mom could provide, and I am sometimes so overcome by my own limitations that I snap at her. Grace frequently eludes me. Patience I have never known well.
A day is measured as electrical impulses. There are moments of calm, followed by moments of frustration, followed by spontaneous laughter, followed by wheeling your puffy toes straight into a cabinet and cursing both life and cabinets. Maybe that last part is just me (and a handful of my friends with ALS. Hey guys.)
It gets old to hear that somebody is angry all the time. It also gets old to hear that somebody is grateful all the time. The truth, of course, is somewhere in between.
Back to All Posts
Your blogs are one thing I look forward to reading. You’re such a gifted writer, and it feels like you are pulling thoughts directly from my own mind. This disease really is a roller coaster ride. I’m just grateful to still experience some highs along the way.
Keep fighting, keep writing. You can always buy a new microwave.
From a fellow ALS fighter, puffy toes and all.
Hugs to you, Kay!
And the place “somewhere in between” is where all the interesting things happen anyway. … and I feel for the microwave being punched and all that. heehee. … hang in there. Beauty is all around you.
I love that you seem to objectively notice the wonderful, amidst the very difficult and infinitely frustrating. Though you acknowledge the bad, you don’t get sucked in by the emotional rabbit hole of ALS, whereby you lose the moments of joy. They’re still there, even if what’s around them is harder and not what you’d ever have wanted – but you’re not allowing yourself to lose them, along with your strength. Bravo.
I love your way with words. I also love and appreciate your honesty. When I find myself resisting reality, I draw on your strength to give me courage. You are the epitome of grace.
Thank you for yet another profound and moving piece. Each time I read your work, I learn something important about life and living.
What Jane, Vanessa and Marie said. Amazing. Wishing you light and hope.
You inspire me. Thank you for writing. <3
Got Your Christmas card. Hope you and Family have a Merry Christmas and a happy New Year.
Thank you for the beautiful example of the way in which we can acknowledge struggle and portray life honestly while being present to joy and beauty.
You are one terrific writer!
Chris, you know how much that means to me coming from you! Xoxo
I am writing to let you to know how much inspiration and strength I draw from reading your posts and I just wanted to say thank you for that. Merry Christmas.
Merry Christmas, Greg!
Such a beautiful post, Sarah. Thanks for your words and for sharing what you’re going through. I’m glad you attempted knuckle typing at least. And that you sit down and just write, and just post. I love reading your stuff.
Thanks, B. Xo
Thanks for writing, Sarah. My sister Kay and I both read your blog and look forward to each new entry. I just read about Vivian, another new face of ALS. It helps every time – to know we aren’t the only ones struggling with this disease. Everything that it takes away – but not our love for being together. Lots more time for reflecting and thinking about this (instead of our lives before – hiking, biking, tennis, golf). The hardest part Kay says is not being able to crawl around with her 8 month old grandson. Keep writing – you inspire us all.
Hi, Sarah
I’m a new fan. 62 year old grandmother diagnosed in April 2013. my husband was diagnosed with Ahlzheimers 2 weeks before my ALS diagnosis and I am his caregiver. With my memory and his hands, we take care of each other.
I have been through all the phases you have written about and I am going to Boston in 3 weeks to participate in the clinical study.
Although we live in a wonderful retirement community in Hilton Head, I’m sure this year will bring a move back to the Midwest to be close to family. Every day is precious. We appreciate the little things so much more. God Bless you!
Elizabeth, thank you for commenting! That’s great news that you’re going to Boston. You’ll love the monitors.
Wishing you and your husband the best.