Redemption Song

I miss my handwriting. I miss doodling on the margins of a page and filling in the answers to a crossword puzzle and sending a thank you note and making lists. I miss dancing and real hugs and opening doors and swinging my legs over the side of the bed and putting my feet on the ground.

Last night Scarlett was in my lap reading herself a book. Her hair is down to the middle of her back and it ends in rings of gold. All I could do was look at that glittery hair against her little brown back. My hands won’t even rise high enough to touch her. It is heartbreak. I want to hold her so much that my stomach hurts and I feel a quickening in my chest. I have shed enough tears over this to generate my own weather pattern, and still my body won’t accept the fact that it can’t reach for this person it created.

I am becoming increasingly breathless, and my tongue is twitching inside my mouth as if electrified. It is horrifying to watch, just one more muscle growing weaker and caving in, the whole thing looking like a worn down soccer field full of divots waiting to trap an ankle and snap it. I can still talk, still swallow. But my whole body is tired, and my brain races with ideas that I could never realize.

These are true things. But there are other true things that are significantly more uplifting. I can still go from zero to ecstatic at the mere presence of my morning tea. When Scarlett wraps her arms around me and pushes our cheeks together or when she sleeps in my bed and our foreheads touch, I sometimes forget that everything isn’t perfect. My caregivers are trusted friends, people come to help in the evenings, school families cook us meals, and my house is always clean.

Dear friends (including my youngest brother) threw a fundraiser for my family last week in Chicago. It’s the fourth year of this tradition, and it’s a party I hate to miss. Good music, trivia questions from my incredible dad, and a room full of people I love drinking with.

Occasionally I wonder who I would be if not for ALS. It has undeniably changed me, given me a platform, and allowed me to exceed my own expectations for what this new life would look like. I don’t know how to die quietly. I don’t even really know how to live quietly, although I am learning. Any form of communication exhausts me, and I know there is much I am missing in my attempts to simply sit and breathe. My brain summons the past so frequently now, effortlessly unearthing memories as if illuminating a treasure map, all the ways in which I ended up here.

Is it possible that ALS is a disease that has enriched my life even as it strives to end it? I think maybe it is, and if this whole exercise–the past six years of sliding—wasn’t going to end with my daughter losing me, then I might actually be somewhat grateful.

How’s that for a weird reaction at Thanksgiving? I am grateful for my disease because it’s shown me so much of the good in other people, and the good in myself. It’s made me a better person, and I want to take all of the lessons I’ve learned and put them to use for the next 50 years. But that’s not how it works. Instead, it works like this: you start by missing the simple things, until you come to recognize that simple things are all you have left, and the only things that matter. I can’t hold a pen, and that sucks. But I still have words. I can’t fly across the country for a great party. But I still have friends. I can’t run to my daughter and lift her up in my arms. But I can still watch her grow. And I will do that for as long as this life will allow.

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32 thoughts on “Redemption Song

  1. Sabrina

    Sarah, I adore you. You teach me so much about just appreciating life. The meaning you find in things helps me and lots of others each and every day. Wish I was closer to put my arms around you and give you a big giant hug. In the meantime, thank you.

  2. Kelly

    Beautiful, beautiful, beautiful. <3 Thank you so much for writing this. We're an ALS family too. Sending love to you & Scarlett.

  3. Traci Winget

    My heart hurts for you, and rejoices with you at the same time.
    Do you know Jesus? He loves you so much.
    So do I.

  4. Michael duffy

    Sarah. My daughter knows I’m pretty much a softy,your word are so poignant. Reaching out to you to thank you for sharing wisdom, we often do not know who we touch.

  5. Roshnee

    I adore you too!! I am humbled by your writing.
    Much Love to you and your beautiful family..❤️

  6. Sharon

    As always, beautifully & I can feel you. Most of all I thank you. You are most courageous & inspirational on a day that I needed to hear.

    I am sending you a huge hug & love. Peace,
    (I lost my husband 4 years ago to this dreadful disesase & so often wish he was here as I raise our 2 teenage daughters. Your voice allows me to know what he was probably trying to tell us.).

  7. Cindy

    Simple things…so true that’s all that really matters.
    I can not imagine what you have gone through-but you have persisted with your writing and shown us how you’ve evolved through it all. Actually I think you have taught me resilience. And while your muscles may be weak you are actually one of the strongest people I know. You may not be able to give your daughter a hug but you’ve touched her-and a lot of us-more strongly than you think!

  8. Jeanna

    I love you & miss you Sarah. I wish we lived closer so I could hug you and hold your hand. Thank you for continuing to write your beautiful words. They make me feel close to you.

  9. Gretchen

    Sarah, it is a privilege to read your beautifully written words. Thank you for sharing your wisdom. You have changed my life profoundly, one post at a time. Sending you a real hug and so much love from Oregon.❤️

  10. Andrea

    Oh Sarah. Your writing is so expertly crafted that we can all imagine the scenes, but I feel a special kinship now that I can actually picture your panoramic view and the drawer where the tea comes from. I wish we could recreate that day a hundred times over, but I’m glad that you and Jess (and of course, baby K) have connected.

    You are a wonderful mom. Even though I know you yearn to do so much more for Scarlet, the experience you’ve both had with the disease has taught her lessons that she WILL use for the next 50 years.

    Keep writing, even though it’s hard and the software sucks. It’s a creative outlet and release that you probably need. Your readers crave the truth you are always doling out.

    Love you!

  11. Noe

    I have been reading your blogs ever since you published a piece in the New York Times, it was about being a mom with a life threatening illness. Many times I wonder why I read you, why I miss your post when you go beyond a couple of weeks without reading. Sometimes I have the temptation to quote you under the tittle “my friend Sarah says…”.

    Many, many post ago, you wrote something that I keep repeating to myself: “hang in there”. “The docs told me to “hang in there” and I thought it was definitely the lamest advice I had ever received. But it turns out it’s all you can do”. I know I don’t read you to see how you go away, hang in there, please, something good is going to happen. Big hug!!!

  12. Niki

    I keep coming back to this entry; it is profound and brilliantly written. You words are a beautiful force.

  13. Erin Jones

    I always want to write an insightful and deep message on all of your posts, but I simply don’t have the way with words that you do. I’ll just continue to eat up every word you write and decide to put out into the universe. I’ve been a loyal fan all the way back to the Deepish Thoughts days!

  14. Barbara Smith

    Sarah, We always love your posts. So honest, yet you manage to infuse inspiration and humor to all of us dealing with ALS. I know Jay treasures your friendship. You are all so strong and keep the rest of us grounded.

  15. Beth Carey

    I too love you and adore you! I always have. Promise. Thank you for your writing, It is a gift you give us all. I’m sending big hugs always to you and Rob and Scarlett. You taught her to be a good snuggler. Awesome.


  16. Meg

    Sarah, so beautiful as always. I think this blog post should be framed for Scarlett to always be able to look at. Your love for her shines through it. Or I can also see her publishing a book of all your blogs. Thank you for being an inspiration to all of us with ALS. I love you and wish you a wonderful Christmas with your beautiful family.

  17. Lorraine Stanford

    I have no idea who you are. I am a 74 year old grandmother resting after dinner and leafing through FB.
    I decided to read your letter and found myself in tears. I wish so much I could help you. You are so brave and yet so real. I am so sorry.

  18. MAv

    I never fail to be inspired by brave souls like yours and learn all the qualities and characteristics of life’s true fighters – a Caring. veteran

  19. Pam Trotta

    You are so smart and so inspiring. I am so glad you have been able to move through your illness to enjoy the present and remind us of all the simple gifts of everyday life. Thank you. Hugs.

  20. Gail Moss

    Sarah, I am so sorry that you are having to go through this. And I’m so happy that you have your beautiful daughter Scarlett there with you as you treasure her daily growth and unfolding.

  21. Ralph

    Sarah. I feel what you feel. After 22 years with ALS I have started taking the Lunasin protocol. No change in my movements but it has given me more energy. I don’t feel exhausted all of the time.
    You are amazing and I love your honesty. Keep up your strength for life….It inspires me :)

  22. Ipshita

    You are an amazing human being — I often think about you, when I am faced with a crisis. Both you and Richard help me to get things in perspective.

  23. Terri

    Hi Sarah,

    Your words/feelings/frustrations resonate among so many people who have lost their “voices” to this disease. Please keep “speaking” for them with all your honesty.
    Sending my love,

  24. Kristin

    We have been at this 8 years–my husband has ALS–and I just found your blog. Love your writing and now I am going back and reading your old posts. Maybe you could put it in a book for easier reading?

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