Scarlett and Rob are skiing in Tahoe. I have spent three nights without them, and am definitely looking forward to having them home tonight. While they were gone, I had various people stay with me, including my sister, two caregivers, and my friend Andrea who is well-versed in ALS having lost her father to the disease.
So I’ve been well taken care of, but my mood was slippery. On Saturday afternoon, I sat on the back deck in the sun, watching Otto run laps to impress me. Still I was alone and lonely and I allowed myself a significant amount of time to reflect on how shitty this situation is. When Rob and Scarlett first started going to Tahoe without me, I was incensed. It hurt to be left out, especially because I was just beginning to understand that I would be left out of so many things, even while I was still alive. I have never felt like there are places I couldn’t go. At least, not places where I wanted to go. When your legs are strong and your feet will carry you, you can go anywhere. When your voice is strong and your breath a guarantee, you need not question your place in the world. When your hands can open and close and your arms can reach up and out, you are allowed to be connected.
But my breath doesn’t come easily, and I can no longer sleep in a normal bed without torturing myself and my family. So Tahoe trips take place without me. As do trips to Arizona and Florida and even concerts at inaccessible venues with smoke machines that would have me gasping whether or not I could roll in unassisted. Whose world is this, Nas asked, and his answer the world is yours doesn’t feel true to me anymore. I certainly still have a world, but it seems to have gotten much smaller.
I sat by myself and remembered everything I once had. Independence, privacy, boobs. It felt terrible. And then a very small brown drop fell onto the magazine I was pretending to read. I looked up, but there was nothing there. And this means that while I was sitting in the middle of my pity party, a bug pooped on me. I knew it was a bug, because the drop was not much bigger than the period on a keyboard. And while this certainly didn’t make me feel better, it did highlight how preposterous life can be. So I wheeled inside and took a nap.
When I woke up I looked down at my hands. They’ve changed so much in the past six years. Now there are craters across my surface where muscles used to be. Inside it seems possible to pile tiny treasures: pebbles, seeds, or brightly colored gems. Maybe this is what I should do, fill all of my hollows with jewels, glue them in tightly and admire my ever-changing body the way I did when I was pregnant and everything was growing instead of caving in. Bizarrely, this idea cheered me up. It’s the reason I always paint my nails, so that I can feel shiny even when I’m not shining. I’ll call it Decorate Your Disease.
I wonder if I can trademark this.
By this morning, when my spiritual advisor (this is not what he calls himself) Marshall had arrived, I was in an excellent mood. My family was returning, a dear friend had made us dinner, and there was Marshall in all of his Marshallness, listening to me jabber on about all of the people who made my weekend, particularly my niece and a very special baby friend who visited on Sunday. I do miss my independence. I do miss my privacy. But being with people I care about lifts my spirits in ways I cannot describe. Also, boobs are probably overrated.
Back to All Posts
“When your legs are strong and your feet will carry you, you can go anywhere. When your voice is strong and your breath a guarantee, you need not question your place in the world. When your hands can open and close and your arms can reach up and out, you are allowed to be connected.”
Wow,. This may be one of the most profound things I’ve ever read. I stopped myself and read it about 5 times. And it’s the first thing I read this morning and will stay with me all day.
I love the idea about placing jewels and other little items on your hands. Bet Scarlett would have a blast!
Thanks for opening us your world to us.
Boobs are extremely overrated (unless you’re in the porn biz).
I always still hope for a promising therapy to make its way into your veins. To allow your brain and your muscles to start their chatter again. To strengthen some of those muscles enough that breathing, talking, typing and squeezing your daughter onto your lap are a breeze and so that life, albeit not the one you’d envisioned, is more than sweet enough.
Oh, my dear. Where to start? Well, there’s this: that baby friend’s mama sent me a picture of you two and I can say for certain that you are still glowingly beautiful, so you can add that aura to the shining.
The way I see it is that even though life with ALS can be unspeakably sad, your spirit cannot stop shining, even when you slow down long enough to really let it sink in. The jewels about life that you share sprinkle joy and much-needed perspective onto so many people — I hope you know that.
You’ll never stop shining for any of us
xoxo
I read the blog for today and was very moved. (I am always moved by the honesty and brilliance of your writings.) I want you to know how much the video you sent to OPRFHS on the day you were honored for the Tradition of Excellence Award meant to the students, teachers and staff. I had the opportunity to sit with your parents on that morning because I happened to be subbing that day. ( Actually, I took the subbing job so I could attend the assembly honoring you and a former student of mine.) The response to your video was incredible. Teachers shared that several of their classes, including one of mine, had discussions about ALS following the assembly. Sharing your day to day experiences, good and bad, builds awareness of this ugly disease, and hopefully, encourages contributions toward a cure. Your courage and fortitude is exemplary. Please know you are always in our thoughts and prayers.
⬆️ … um what she said was great. Ditto.
And I will agree boobs can be overrated, you did have epic ta-tas. I don’t know code well enough to underline the end of the last sentence but image it is.
Love you Lady!
Sarah,
i am having my own pity party because mucous and suction are ruling my life. I can’t go to family lunches or breakfasts or I suck it up and go when I should be using cough assist and suction. Managing my disease takes a lot of time. I should borrow your idea before you trademark it and paint my nails, and color my hair, and get brighter mouth rags! I actually love that you noticed the bug poop. Hugs from over the hill.
I have so missed your voice, which is absolutely nothing compared to all you miss. You are so amazing and boobs are definitely over-rated. Enjoy having Rob and Scarlett back home!
I don’t even know what to say though I do know reading this made me massively sad and in turn uplifted at the end.
Your writing is illuminating and eye opening in its candor.
I send you thoughts of many moments to still find joy and prayers that family, friends and loved ones continue to surround you with love.
You are my voice.
Wow, Sarah, your words continue to capture all of us in indescribable ways. Your spirit is still so very shiny and you are so beautiful! I am staring at your Christmas card right now and sending hugs and love. Enjoy the re-entry of Rob and Scarlett- they missed you too!
Love you,
Beth
Sarah,
I have been checking your blog for a couple of weeks and became worried when I didn’t see a post from you. Even though I don’t know you personally, I feel connected to you through ALS. Reading your stuff brings me back to the sad, hard, poignant and beautiful times I spent with my father after his diagnosis. I told a friend recently that caring for my father was the most meaningful and important thing I have ever done. I am so glad you are surrounded by love and wish with all my heart that something will come along soon to treat or even cure ALS. For you and for everyone else that has lived or will live with this disease.
Sarah, we were introduced to your blog when we teamed up with the Watts family for Team Big Sky #whatwouldyougive last August. My husband was a poet and a writer (although not as a career) and shared his experience with ALS on his blog, Markymooseinbigsky.blogspot.com. Open, honest, sometimes graphic, funny, always uplifting to friends and family who often feel so far away and helpless, you generously give your loved ones, aquaintances, strangers, people touched by ALS, anyone fortunate enough to find your words, a glimpse into your world. It means so much to so many. I was especially moved by your post titled “Redemption Song” and this one too. Thank you for writing.
On another note, if going to Arizona is something you want to do, we found a great Airbnb property in Sedona. We went there with our three sons, two caregivers and Mark last November. I will send the details to Amanda and she can share with you. Hope you are having a good day today. Thinking of you in Big Sky, Jackie
Oh Sarah, please do keep writing. Your words shine for me every time. When words shine like yours do, you raise awareness, compassion, and hope for this disease.
Miss you much my friend. Your words and spirit are truly amazing. Sending love NYC style- I do believe someone should create an emoticon for this, but we know I’m not skilled enough to do it
.