Streaming

I took some Dayquil this morning, so bear with me as we go on a journey of my confused consciousness. I don’t handle medication well. Although at the moment I am very calm, slow, and sleepy, none of which are unwelcome feelings.

First off, who’s interested in what’s going on with the van lately? I know I’m not, but I’m living it, so let me just share that we still don’t have our van back. We are on our fourth rental, because they keep having to take the rentals back to service them. Right now, I think we’re driving a Toyota. Or a Dodge? Who cares. The point is that neither Mobility Works nor Braun, which is the company who converted the van, know what is wrong with it. So they will be redoing the entire conversion, an exercise that will take something like three weeks. Everyone’s being really nice about it, and we do have the rentals, so getting around has been fine. Still, I’d like to end the saga of the van and move on to something else.

I have school fundraising calls to make this morning. And I’m still working on finishing up my video for A Life Story, which involves going through photos and boxes to find appropriate items to share as part of the B roll, the stuff they flash up on the screen while you hear my voice talking about what my life used to be like. While the filmmakers were going through a box of my things, they found a gangsta rap coloring book that my former team at work had decorated when I left the Bay Area for New York back in 2005. I don’t think that the gangsta rap coloring book should be a part of my movie, but I was pleased to see it once again. Coloring, like many things, is a skill I no longer possess.

This morning, maybe because I have a bit of a cold, my hands and arms aren’t working very well. And for some reason this came as a surprise to me, even though of course that’s the direction things have been heading for some time now.

I make my way around the stages of grief like someone on one of those Dance Dance Revolution pads. Acceptance! Acceptance! Denial and bargaining at the same time! Turn in a circle and put both feet on Anger. Anger! Anger! Anger! Anger! Now I’m just hopping up and down, and that’s not really good for dancing or for navigating grief. I’ll just pirouette over to depression and lay down there for a while.

Or, I don’t know, maybe my experience is more like a game of Twister, and if I put one body part on each stage of grief, my head will explode and this will all be over.

I’d like to thank today’s sponsor, Dayquil, for these vivid hallucinations.

But today the place that I find myself is not one of the five stages, and probably not one of the Dance Dance Revolution landings either. I’m just in shock. It happens. It’s not the same as denial, which despite what I wrote above, I don’t experience often, if at all. But I am shocked that this is my reality. How can it be so? When I say this to Rob, he doesn’t understand. “We don’t have any new information,” he says, but to me every morning brings new information.

I wake up from dreams where I’m walking, climbing stairs, falling with abandon into someone’s arms. I wake up and I stare out my window at the ocean, and I think that I always wanted to live near the ocean, but not like this. I wake up and I think about the list of things I have to do, and I wonder why it has to be so hard. And then I get out of bed, and I get started.

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10 thoughts on “Streaming

  1. Donna Marciano

    I’m angry for you…..I’m angry for all of us living with this disease. Some days I’m like Sally Field in the movie “Sybil.” It’s exhausting.

  2. Ipshita

    Sarah – listening (reading) your journey as you negotiate each day. I wish I could do something more.

  3. peter belowski

    “to me every morning brings new information”….this, simply, is beautiful writing. Raw and real, but beautiful.

  4. Tammy

    Dear Sarah,
    I am new to you and your life, yet I feel as though I’ve known you for years. I am sorry you have this horrible disease, and for all you have to deal with each day. Thank you for sharing your world with all of us. Sending you a big hug and please know, you have many people who think of you and send you positive energy daily.
    Sending you a big hug from our family to you and yours,
    Tammy

  5. mr mat

    Ive had SMA since birth, but didnt get diagnosed until about age 6. ALS and SMA are very similar except SMA lets you live with the reality for 40 to 60 years. My grandfather died of ALS when I was one year old…

    So which is better? A “normal” life for 30 or 40 years, filled with adventure, lovers, children, accomplishments with a relatively quick end, or a “disabled” life missing some or all key components, like adventure, lovers, privacy, and children for 60 years (if lucky). Sometimes I envy those with ALS.

    ALS is horrible and it sucks, no doubt. I dont know if this cheers you up, but at least its another perspective to think about.

  6. Alina

    Ugh. You’re just so good as saying how I feel about my debilitating MS. I don’t think you sound crazy when you wonder how this is your reality. You sound like a rational, calm, quite intelligent woman! So why is it that my husband looks at me like I’m crazy when I express the same feeling? And yes!! Dancing around the stages of grief! This dance seems to have no endpoint.

    My husband and daughter are leaving for a long weekend soon. I told him I truly am thankful for them to be able to get a little break from me. But when do I get a break from me???

  7. Kaitlyn

    Eddie D said it best – And much like the new info you learn every day, I experience a new set of goosebumps every time I read.

    Stay strong, Sarah <3

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