It’s been a hard week. Rob was traveling, Scarlett was finishing kindergarten, and I have just been trying to manage all of the moving parts of our lives—not so successfully. Every two weeks I meet with a social worker, and today I told her that I felt like writing an angry blog. “I wouldn’t want to post it, though,” I said.
“Well,” she began thoughtfully. “Couldn’t you write it, and just not post it?”
There was a time in my life when I wrote many things that were never intended for public consumption, but now that it is so difficult to get words on the page, I don’t want to waste my energy dictating and correcting something only to delete it. So instead, I’ll share some things that I’m uncomfortable sharing, since I took the time to write them down.
Every morning, I wake up hoping to have a good day. And almost every morning this week, I failed. This morning I was undone as I listened to Scarlett decorating her room with my assistant Johana. They were hanging bright strips of fabric from the walls with blue painter’s tape. Prior to that, they had been outside throwing a stuffed squirrel to Otto, and bouncing a basketball back and forth across the deck. Scarlett hadn’t wanted to go outside, but I insisted that she entertain the dog (Exact words: go play with your fucking dog), who had been looking woeful and clearly needed to run around.
When Johana went with her, everything got better. It wasn’t only Otto who didn’t want to be alone, but Scarlett. And I’m the one who should have been with them. Not sitting in a wheelchair, but up and playing. It is my guilt about my daughter that causes the anger that I aim at my daughter. I don’t want to be alone, either.
Instead, I sat at the dining room table and watched the action outside, leaning over every so often to take a clumsy sip of tea from my metal straw. I was thinking about the day before, when I couldn’t even bring myself to post a blog, because of that whole thing about if you don’t have anything nice to say…
Thursday started with an argument with Scarlett that seemed to last for seven hours, and ended with an enormous miscommunication about Rob’s flight that left me sitting alone for two hours with no way to eat dinner or go to the bathroom. I don’t want to be the kind of person who is so dependent on others. It doesn’t make me sad, it makes me rage. Two days ago, I searched YouTube for the battle rap scene in Eminem’s movie 8 mile. I just wanted to see angry people using their anger loudly and effectively. I suppose it was cathartic. Then again, maybe not, because I’m still mad.
Nothing is getting easier. I continue to grieve for the things I’ve lost. Right now, Scarlett is out with my parents, because I’m not the mom I want to be. The one who can drive, and fix snacks. The one who loads up the car and goes somewhere fun with her kid because it’s summer vacation and we can do anything.
None of this is on my terms. ALS is running the show, at least this week, and I’m over it. But what can I do? I can’t control a six-year-old who wants to express herself by painting the garage floor until it is slick with green and purple tempera. I can’t will my hands to work, or my lungs to take in more air. I try for grace, I try for dignity. As this week ends, I would be satisfied simply with sanity.
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I wish there was some way to express my level of understanding how you feel. It’s deeper than you can imagine, or perhaps not. I feel so many of the same things, the anger of loss, the frustration with not being the man I am supposed to be, the resentment at my ever increasing limitations. My heart goes out to you, and to Scarlett, and to Rob.
Oh Sara-you have more grace & dignity than most! You deserve a few grumpy days! You, more than most. You inspire every one of us!
What Louise said! I feel privileged when I read your posts, and I think about your courage every day.
And mine to you, Richard. ❤️
❤️
Sarah, your angst, your anger, touch more than your sweetness. You are showing the real face, the real fight of ALS. My husband, the love of my life, father of my children and partner of 23 years died 1/28/16 after being diagnosed with ALS on 6/30/15. We began a F/B page “TillmanTough” that tried to relate our experience. Unfortunately for us, it ended way too soon and my children and myself are left reeling from the loss. What I have learned is that the more real you are, the more you shed reality on this horrific disease. I am always confounded by peoples perceptions that we shouldn’t be upset. But for the grace of God go I. If they only knew what you, my Todd, and all those facing ALS on a daily basis endure. You are grace, you are finding joy, but you are also grieving the loss of the dream you had to be the mom you should be able to be, the spouse, the person, the life you should be and have. Dear Sarah, don’t sugar coat on our behalf. Rage at the machine, sing with joy, cry, fight and never surrender your voice, even if you lose your ability to talk. My heart is with you and all the others. Someday I hope to help this cause, to find a cure, so you and my husband and all those who have suffered will not have done so in vain. Peace and a profound impact be yours.
Maybe to end the week tonight, you can take a look in the mirror and see what a fucking amazing MOM YOU ARE and all things your daughter is learning through your grace, humor, tenacity, strength, grounded was, unmeasurable love and and and and. You are an amazing mom.
I have thought of you (and other parents with ALS) during my more challenging “parenting” incidents – wondered how something so trying (parenting) can be made many times more difficult (parenting without hands, fast legs, and a loud voice). It’s unbelievable. I’m mad too and because it can happen to any one of us we all need to join in the fight for more funding/research for treatments.
That said, I am in awe of your excellent writing that you continue despite using dictation etc. to produce it.
Hugs from Santa Monica.
Christina
PS Thinking about #whatwouldyougive ideas for this summer…
Sarah, we haven’t met but I feel like I know you. Rage on! ALS is WTF and deserves cursing, always! That being said, you are full of dignity and grace. Scarlett and Rob are very lucky people!
Sarah, I read your blog to know what my husband isn’t telling me. Shout it out! Everyone associated with ALS feels impotent. Frankly, it helps knowing that others are as frustrated.
No one knows but you
I wish I could make you better
so much do I wish that
I hate crap like this, that people suffer as they (we) do
Why can’t it happen just to the bad people
You are in my heart Sarah, it doesn’t help you but you are there.
It does help. Xo
It’s a rare privilege when someone lets you see their shit.
I don’t have kids and my situation was different; I was the caregiver, and different disease with my mom’s PSP. But when she lost her voice, I had to be hers. Seeing her be strong and scared and oh so awfully human at turns taught me how to do the same – and we had never been folks who ‘let others see our business.’ But sometimes you gotta say it like it is.
It weren’t pretty! I raged hard enough for her that I got kicked out of park district tennis for using the f-bomb…got lectured by her doctors for pushing for information…got smacked at work for taking her to endless (necessary) appointments…but fuck it. People don’t get it unless they can see what it’s like.
I’d bet money that you’re teaching Scarlett more than you know by being yourself. She’s inheriting a whole lotta good stuff to use when she needs it. You rock.
Best,
Deidre
Sarah, you are such a dear and we love you so. Thank you for your honesty and the brilliance of your writing. Do not forget that you are a wonderful mother. Period. Our kids need to see us as the human beings we are. The main thing is Scarlet’s knows deep in her bones how much you love her.
My words are clearly inadequate but I am sending you love always.
Beth
Sarah, You are entitled, very entitled to express your anger and thank you for doing that! I watch Jay each day frustrated by his inability to do the things he loved to do, play with his kids, waterski, play ball in the front yard and even though he tries to give it his best each day, I know the frustration he feels and the anger he tries to keep inside. And how hard it is for us when we see his girls hug him with hope for a cure. It’s important for everyone out there without the disease to know firsthand the reality of ALS, so we can keep the fight going to end this cruel disease. We so admire you and your honesty. Keep posting and know that we all love you.
I’m so glad you write the hard posts, Sarah, and that you express yourself in words the way you do. That your words are not wasted, but here for all of us to see. It’s incredibly brave. Your honesty is so moving. I’m doing a spiritual workshop this weekend. Been thinking about you. The teacher said rage surfaces when we don’t know what else to do with our monumental amounts of pain. I’ve raged this week too, and I’ve been running more than usual. When I read your posts I think about where your pain goes when you don’t have any physical outlets. So keep putting it on the page, my dear. We can handle it. We love you.
thanks for sharing you’re story Sarah – all of it. we love you for it.
Hi Sarah,
I sent you a link through Facebook messenger. It is a new story about MS and how much progress is being made there. It made me think of you and the important point you made about ALS patients needing to live long enough for effective therapies to be developed. I know it is small consolation for all you have lost but following your story makes me feel like my dad is less alone and in the company of amazing people. Here is the link in case you can’t pick up my FB message:
http://www.cbc.ca/beta/news/health/ms-treatment-bone-marrow-1.3630203
I was wondering where the rage and anger was. Glad to know your human. You’re doing so much for so many with this blog. You deserve to get angry when you want. So sorry you had a rough week. Thinking of you.
Uncle Jim
Thank you for expressing the rage we PALS all feel at times.
Pam
Thank you Sue for such an honest and encouraging reply. I lost my precious Mother, and best friend, on 5/13/16. She was diagnosed on 1/17/14. We were sure we’d have at least five years but als quickly took her voice, ability to eat, walk and the last few months her breath. My world has been shattered and I’m so angry and heartbroken. The pain is unlike anything I could have prepared for and yet people act like I should just be happy and move on. It’s shocking to me how people act around someone who is grieving like I’m wrong to do so. I hope I can continue to be an advocate for others living with als even if I am discouraged from doing so by those who don’t understand that even though momma is gone I can’t just give up the fight against als.