“I don’t pretend to have all the answers. I don’t pretend to even know what the questions are. Hey, where am I?” — Jack Handey
I sort of think I should just leave that quote here as today’s blog. It sums up nicely what I’d like to say, and I’m not sure I can expound on it very successfully. But here you are, so I’ll try.
I’m sitting in my bedroom trying to meditate, but my head feels like it’s full of scrambled eggs. I can’t focus on one idea or even a simple set of words that might bring clarity. Clarity, I say in my mind. Clarity. As though that single word might have the power to rush in and vacuum out the contents of my brain, leaving only what is elemental. It doesn’t work, so I lean back in my chair and stare up at the light fixture, running my eyes along its scalloped edges as though I’m working at a strand of worry beads.
I’m perseverating on the concept of a life without ALS. Not a life where I never had ALS, but life after a cure. I’m sure that all of my healthy friends can quickly disabuse me of this notion, but I can’t help thinking that if I could just get through this and safely make my way to the other side, then everything would be sublime. I feel that I could manage anything, as long as I had my independence. My privacy. My dignity. What freedom, to be healthy. To feel your body doing what it is supposed to do. If my legs worked again, if my arms would lift, where would I go? What would I gather?
Something tells me these aren’t the right questions. I should be focused on what I can actually control. Lowered expectations, a social worker said to me this morning. I know it doesn’t sound good, but I understood what she meant. Work with what you have, with what the reality of life presents. I still have ambition, but it feels somewhat aimless these days. What is it that I hope to accomplish? That’s probably a better question. The scrambled eggs won’t give me an answer.
This is your brain on ALS.
My mind flips ahead to our Boston trip. We have a hotel room, thanks to my friends at ALS TDI. They straightened that shit situation out in five minutes, without breaking a sweat.
This weekend is my high school reunion, 20 years. The class of 1996 is fundraising for ALS TDI, and one classmate started a petition to nominate me for a Tradition of Excellence award, an annual honor bestowed upon alumni who have “made outstanding contributions to society.” Past award winners include my classmates Anne Sweeney (Humanitarian) and Jeff Mauro (Culinary), as well as Dan Castellaneta, the voice of Homer Simpson (Performing Arts). This is flattering, moving. I don’t know how the process works, but (said in low, serious voice) it’s an honor just to be nominated. Sarah Coglianese (Oversharing.) I won’t be at the reunion, but I liked high school. My class was huge, so there will definitely be people there who have no idea who I am. If I were face-to-face with them, I might say, just picture me, but chubbier, and with eyebrows like Eugene Levy’s.
Scarlett’s Halloween costume has arrived. I’m not allowed to talk about it.
The #whatwouldyougive campaign has raised more than 173K.
I’m still sifting through my thoughts for some kind of insight. But Clarity is only a word, and it doesn’t have any superpowers. Still, it’s a better mantra than Lowered Expectations.
Maybe we should have eggs for dinner.
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Keep writing Sarah. You help so many.
Sarah, your post was perfectly clear to me. Your brains and beauty, even in a scrambled egg state of mind, far surpass the rest of us. I know you will be missed at the reunion.
Love you sweetie.
You make outstanding contributions to MANKIND every single week. You make a WORLD of difference to me and my brother every single week. I use your words to make him laugh when nothing else ever works. So yes, they can nominate you for an alumni who has made outstanding contributions to society (a great jesture to be sure.) But there is no need to be nominated really. That should just be a given fact.
P.s. I hope Scarlett has the best costume ever. I’m thinking of a beautiful ballerina.
I thought that was what meditation is–I do it every two weeks but it’s called AGELESS SPIRIT. And it takes me two weeks to unscramble my thoughts. Seriously, I do enjoy it–calms me. Love you. N
Is it crazy I’ve always thought, still do, you’ll see the other side of this in my clairvoyance? No, I don’t claim to be one of those folks but I definitely experience great intuition about some things. I do see you walking, albeit not with the ease of pre ALS. But I do picture you with very strong arms.
I hope your goals include writing a book.
Hello Sarah,
I have spent the last few days thinking in what your social worker told you: Lowered expectations. Probably is the thing to say, probably is the most rational thing to do, but I do not know if anyone who has the “honor” to live with a serious disease is capable of getting out of bed with the though that today is going to be worst than yesterday.
One of my doctors ordered some blood work last week because she thinks things in my body probably are getting worst. I was in shock because I do not live with the idea that this is progressing, even if I think myself some stuff is getting worst. Well, I am messing up here a bit, but I think that we have the right to think that somehow we will be coming out of this victoriously.
Yay yay yay!! You’re going to be at the gala!! I’ll finally get to meet you
Your scrambled eggs are more eloquent than what I have on the page for your race report…………..which is nothing. Off to remedy that but I needed to channel your writing first.