There’s nothing to say today. The ocean is blue, the sky is blue, the flowers in the bush over my fence are blue. I’m blue. Even the dress I’m wearing is blue. I’ve been sick with this cold for five days, going to bed at 8pm, trying to shake it off, but still waking up in the middle of the night, dry mouthed and achy, full of nightmares that Rob is gone. I want to wake up in the morning and roll over. That’s it. That’s the whole thing. I want to wake up in the morning and roll over.
Well, maybe there’s more. I want to feel my feet on the ground, stretch my arms above my head. I want to take control of my day, of my life. I want to be alone when that feels good. I want to be among friends when that feels good. I want to walk through my house, something I have never done.
I want to pick my daughter up and spin her around the room. I want to show her how to stretch and how to do yoga poses. I want to run my fingers down her back and make her laugh.
I want to take the dog for a run. I want to walk and walk and walk so many miles until there’s nowhere left to go. I want to climb stairs. I want to try on clothes. I want to look down and see my calf muscles.
I want to play soccer. I want to take a full-entire-complete breath and hold it, without fear. I want to have a conversation with a stranger who isn’t wondering why I’m in a wheelchair, because I’m not in a wheelchair.
I want to get up I want to get up I want to get up I want to get up.
I want to do my own grocery shopping. I want to garden. I want to brush my daughter’s hair and button her buttons. I want to take her to school. I want to drive my car and sing. I want to take a shower alone, standing. Actually, I want to take a bath, for an hour.
I want to lift heavy things and move them around. I want to go to the gym. I want to sweat. I want to go to a concert and dance. I want to go camping. I want to climb a tree and flip my legs over its branches and hang upside down.
I want to go wine tasting. I want a weekend away with my husband, and I want him to want that, too, because there’s nothing in it that requires work for him. I want to put my arms into a coat by myself and sit down on a high, backless chair.
I want to bake with my daughter. I want to make her a milkshake. I want to take her out for brunch. I want to go swimming. I want to lie on the couch and watch a movie with Rob. I want to be held.
I want to get on the ground with the dog. I want to go for a bike ride. I want to go to my neighbors’ and bring them something just because. I want to get on a plane with my daughter and fly somewhere and see friends. I want to spend an entire day not asking for help.
I want to type. words. fast. And I want to tell a story that has nothing to do with this tiresome disease. That’s all. That’s all I want.
Well, maybe there’s more.
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I want all of that for you, too, Sarah. And so much more.
I only wish I could give that to you. Individually, simple things but because of this horrible disease – impossible. I hope tomorrow is a little brighter and not so blue.
I want all of those things for you and this disease to be rid from this earth!
Me too… Some days you just have to say WTF! I am also tired of wanting and needing. As much as I try to focus on how fortunate I am to have people helping me, sometimes I just want to stomp my way upstairs in a fit of rage! (I’d settle to just stomp my foot
Oh Sarah! I’m Heart sore for you because I empathize and want those things too that there’s such an indescribable ache. You have spoken to my soul. I never thought I’d miss cleaning, doing laundry, cooking…. I told my husband I would even shovel snow this morning for him… I’m really desperate..
Sometimes I feel like I just want one small thing. I just want someone else to put a coffee cup in the dishwasher. I just want enough time to get my hair cut. Hell, I just want enough time to wash my hair, by myself. And of course that is not all I want. But getting that one small thing would be huge. And not getting that one tiny thing, which seems like it should be so possible, is simply defeating.
It never occurred to me that you have never walked in your own house.
I just want one thing to be easy for you. I just want your van to work. I just want you to get one thing you want in this moment.
Yes. <3
i am sorry. wish i could say something to make you feel better. because you’ve said things in the past few months that have made me feel better when i read them. you are in my thoughts and prayers.
I do, too, Sarah, and I’ve never even met you. Your words are beautiful – you are extraordinary.
Is it weird to say I’ll put my shoes on right now and walk down to the beach, recording it on my iphone? Because I’ll do it, and email you the clip. I can’t make your legs work, but I can take you along with mine.
Hugs and lots of prayers coming to you! You’re always on my mind. I’m sure that doesn’t help but just know I care
I want all those things too!
I want my husbands big muscular arms to wrap around me and make me feel safe. I want to joke, prank and mess around with him. I want to run another marathon and beat him this time. I want us to go walking with our two boys and our two dogs or take the dogs to the dog park. I want us to go to our favorite restaurant and be able to eat everything on the menu. I want to see him playing soccer and having an awesome time. I want to have endless conversations where we end up taking about nonsense…hahaha I want him to drive me around and again talk talk talk all the way from point A to point B. I want to see him playing with the boys and showing them things. I want him to answer those endless questions the boys ask. I want him to put the water in the water cooler and make dinner. I want us to go to bed and actually sleep. I can go on and on and on but this thing called ALS has taken all of those wants from my family. It had made my husband depend on my strength and my security and now I put my arms around him and say it’s going to be ok
I love my husband and as things get more complicated and frustrating for him I will never turn away I will always be there and somehow make him smile. Sarah thank you for your words 
Okay, I ghetto-filmed a walk to the beach a couple blocks away with my iphone. Looking down so it (hopefully) feels like walking. And I ran up and down the beach stairs the same way. You want it?
Sarah, I wish I could come up with a magic wand and with three simple taps I could pluck a cure for ALS out of my hat…or at least a life-long effective treatment. I might have mentioned this before but I have an auto-immune disease which attacks my muscles, skin and lungs. It is very debilitating and kills you as well but I have treatment. I personally haven’t responded well to treatment but am still here 9 years later. I go in and out of remission so when I am bad, my mobility is pretty bad and I don’t have any equipment so I am pretty stuck but this is usually pretty short term because they up or change the drugs. I was well and truly heading down the path you describe but did a U-turn. A close friend of mine has ALS and so I am very conscious of how different things would be for her and her family if there was effective treatment. I also understand what it is to be a mum and a wife and not be able to fill either position adequately and hope and pray your young children are going to be okay. I can’t describe the anguish I’ve been through at the thought of leaving my kids without their mum and this is all what you deal with having ALS. I send you huge hugs and all my love xx Rowena
You have read my mind. So missing myself lately. Sending you love, appreciate all that you express for us. Xoxo
Oh Sarah, I so desperately want all that for you. I will do some of these things, in your honor, but it’s not the same. Not even close, but all I can offer. And as I write this I realize that what I offer is really nothing at all that you want. It’s just words. I’m sorry. So f’ing sorry.
U ARE A AMAZING STRONG WOMEN KEEP THE FIGHT UP ( ALS ) SCOTT
And we want all of this for you and all ALS patients and will not stop fighting for a cure till we get it!