Dear ____,
I was thinking of you today, and thinking of myself, too, in that sort of unattractive, self-pitying way I sometimes do. Don’t you just want your life back? I want my life back so desperately today. I realized something recently: spontaneous acts of affection are slipping away from me. Not all intimacy, that’s not what I mean. But the little things, the things that feel much bigger once they’re gone. To stride across a room and embrace someone just home from a trip. To reach out and squeeze someone’s hand, a quiet connection. Even to completely and totally invade someone else’s personal space while you’re watching television, so that for the duration of the show, you’re not quite sure where you end and the other person begins, and you start breathing at the same pace because it’s just easier that way.
If I could have full command of my body again, I would positively spin across the floor when the front door opened. I would take a bath, my toes flexed and my hair spreading out behind me like a mermaid’s. I would stand in my closet getting dressed, and I would pile my wet hair on top of my head in a bun, and I would pour two glasses of wine.
I miss my life. You know what I’m talking about, ____. There’s plenty to be happy about still. We do make the best of things. But right now I’m tired of compromising. And you’ve been doing this for so long. How? How do you keep your frustration from spilling out, forcing the ones you love most to back away so they don’t drown in it?
I still have my little person. She’s small enough to crawl into my lap, innocent enough to declare her devotion daily. I have some form of the flu right now, and when I told her I was sick, she smothered me with kisses. She tucked covers over me and said she hoped I was comfortable. Then she asked me when do parents die? And I almost died right then.
My whole body hurts with this stupid flu thing, and I can’t remember, are you supposed to feed it or starve it? It hardly matters, all food looks and sounds horrible. Even ice cream. The situation is obviously dire. Someone told me that when you’re sick (like with the flu, not with ALS), you regress emotionally and begin to doubt everything. I know I’ll feel better soon, but I’ll still have ALS, so I can’t muster up a whole lot of enthusiasm for the better days ahead. Then again, that’s probably the regression talking.
Scarlett and I went to the Botanical Gardens in Golden Gate Park last week. We are just the right height for each other, and we strolled among the flowers and the trees, spotting turtles and fish in the small ponds. She raced around a fountain, and wandered off the path to places where I couldn’t go, running back as soon as she lost sight of me. She said it was like the secret garden, which we’ve recently read. But in that book, the boy in the wheelchair gets up and walks. He lives, maybe forever. She doesn’t care; in her mind the day was perfect, and really, I felt that way, too. Her face was covered in pretzel salt and I took pictures of her in front of yellow flowers, so brightly bunched, they barely looked real.
But then, my husband. It’s not his fault that I’m stuck in a chair, that I can’t put my feet all over him while we watch Mad Men. He probably never really liked that anyway. But I did. He leans over now to kiss me and my arms won’t reach up. That’s not his fault, either, so I hope I’m making the right point here. But even if no one is at fault, these stolen moments, we need them more than ever. Isn’t it usually those little connections that help get you through something much bigger and scarier?
I’ll stop short of saying it’s not fair. What is fair? I didn’t expect a fairy tale, but I didn’t expect this reality, either. Enough. I hope you’re doing well today. I hope you’re taking a walk with your dog and looking at the city and thinking that life, while quite different these days, is still worth living.
With love.
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Love your Blog. Keep believing, trusting and loving your family.
<3 <3 <3
Sending hugs…
Sending you hugs and positive thoughts Sarah.
Bless your sweet heart. Praying for you and your family. That is what I wonder with my mom with ALS…should I just touch, hug and kiss her as much as I can?…..will it DRIVE HER NUTS?!?
Well you had me in tears today which I try desperately not to do. I have bulbar ALS. I’ve lost my ability to speak and to eat. Probably worst of all, I can’t kiss my husband, children or grandchildren. I can only touch my lips on them.
But as you said Sarah, we continue to make daily compromises and what yesterday was possible is now gone.
People think I’m brave. I’m really a fraud.
Just when I start getting frustrated in negotiating between our group and the FDA and crazy drug manufacturers you write something that makes me keep going. Thanks – i needed it this Monday.
Sarah, you are in my prayers everyday. Today when I bury my face in my dog’s fur, the moment will be dedicated to you. With deepest love and the most caring thoughts for you and your famiiy…
I couldn’t have said it better myself. Hugs
I feel the same. People say amazing I just say surviving.
Hello Sarah,
I wish I could be a kind of a god a perform miracles, i would cure you righ this momement and pals all over the world. My heart aches, and there is nothing a person can do to help. Nature can be so crue and so beautiful at the same time. We have a brain that works wonders when well and then nuts when wire is not unwell. Life is bizzare! All what I can say now to you is that you have Scarlett and your husband to give you love. I do send all my love to you, ansd keep connected, i love reading you stories, i feel I know you by now.
We would like Sarah to contact us. We are voluntary doctors and scientists working in ALS, we are not paid and never ask for money. We meet all costs from our own resources.
Dear Sarah,
I love you. That is all.
Xo
Carrey
Oh, Sarah! You have no idea how many lives you touch every day and how much inspiration you bring to all of us. I am sorry for everything this damn disease is putting you through. You are the most amazing person. I wish I could give you a giant hug right now.
I’m lying here with a boiling five year old on one side and a scalding little fat baby on the other, fast asleep and glommed to their mother with as much skin coverage as they can possibly get. In June. In South Carolina. But goddammit, reading your post, I will relish it, this sticky, claustrophobic, hot lava love. I will drown in it and be grateful. ALS is just the worst. My grandmother had it, and it’s fucking hard. I wish you didn’t have to be so brave. I’m so sorry.
Love your blog. Found you through Richard is Living With ALS. I was diagnosed in 2012 and can identify with what you’re feeling. Thanks for sharing your thoughts.
Marsha