The Unclean Machine

Scarlett woke up this morning and got dressed in Parmesan cheese. That probably looks like a dictation mistake, but it’s true. She ate her breakfast of leftover pizza, wearing nothing but her underwear, and by the time she crawled onto my lap to listen to Harry Potter and the Order of the Phoenix, she was covered in tiny flakes like pungent snow, and so was I. And really, what could be a more auspicious start to the day than being sprinkled with secondhand dairy dandruff? When Scarlett flounced off to brush her hair and change her clothes, I just sat there with my winnings.

When she was younger, my daughter used to hand me all of her garbage to take care of. And as far back as I can remember, I would direct her to the nearest garbage can instead. She was three years old when I got a wheelchair, and when she tried to give me her garbage then, I would say “Mommy is not a garbage can”, and shoo her away. At six years old, she’s good at cleaning up after herself, and yet, I feel like I’m always holding something that is hers, covered in something she was eating, or in sudden possession of a lap full of sticks and flower petals because she “needed them for later!”

If you’re a mom, and relatively active and involved, I’m going to guess that you don’t always feel like your cleanest and sparkliest self when you’re with your kids. That’s just one of those facts of life we all have to get used to. Now imagine that your body area has expanded to include a very large chair in which you make your way around on a daily basis. Sort of like living in a slightly sleeker golf cart. Crumbs abound, but I have also found pieces of toy plastic cars in my wheelchair, Halloween decorations tucked into crevices and undiscovered until May, and just the other day when my assistant Marianela swept around the sides of my chair, the contents of an industrial sized sandbox came spilling out.

I do enjoy cleanliness. But now, even when I’m showered and my hair is shiny, and I’m wearing things like deodorant and a bra, it’s still going to be a dicey situation. Because first of all, if I look down at my dress, I can see that Otto drooled all over it, and there’s something stuck to the side that looks suspiciously like a booger. But never mind all that, because it’s the chair itself. It’s dusty, and grimy from a life on the streets. More than one part looks as though it’s been chewed on. This chair, it’s seen things. I need to go to a local car wash and just cruise right through, until my ride is gleaming and I’m spitting out oversized brush bristles.

My wheelchair is extremely popular with preschoolers, most of whom enjoy pressing the button with the horn on it, even though it is the weakest and puniest honk you have ever heard. But it took me longer than it should have to realize that with that many four-year-old palms on my chair, I was probably carrying around a small village’s yearly allotment of influenza. I love kids, especially the ones my daughter has had the privilege of going to school with. That doesn’t mean I don’t know where their hands have been.

So that’s it. Today’s blog is an ode to that other 375 pounds that make me who I am presently. My filthy wheelchair, my savior, the bane of my existence. The place that is sometimes inexplicably a repository for pine needles. It’s cool, I’m not really complaining. At least my hair is clean, even if I do emanate a certain eau de fromage.

Please consider donating to ALS research. #whatwouldyougive

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6 thoughts on “The Unclean Machine

  1. Meg Macdonald

    Sarah, I went to high school with your Aunt Caroline. She has shared your blog posts and I started reading them in the last 6 months when I had speech problems and myriad medical tests. My mom, aunt, and cousin all died of ALS, so I had high anxiety about what it might be. Your posts helped me mentally prepare for my visit to the UCSF ALS clinic last week. On 6/29/16 I was diagnosed with Bulbar ALS, the day before my 56th birthday. I have a 15-year-old son and a supportive husband. Your writing is beautiful, supportive and inspiring. Thank you.

  2. Sarah Coglianese Post author

    Huge hugs to you, Meg. Thank you so much for posting, I’m really sorry about your diagnosis.

  3. Christi

    Meg, I love reading Sarah’s blog BC I relate so much to it since I lost my mom to ALS this May, she was 56. I just felt compelled to offer you my deepest condolences on all of your loss and now having my own worst fear come true for yourself. I don’t know your personal beliefs obviously but I want to say a prayer for you, for you and your family’s comfort. Thinking of you

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