30 Days of Thanks Day 3: BraVa!

Three years ago I submitted my first memoir essay for BraVa! BraVa!, a fundraiser for the YWCA of the Greater Capital Region, is a night of memoir about the place of bras in our lives.

Started by my friend and teacher Marion Roach Smith, BraVa! meets a need in our community. Women who escape domestic violence often do so with just the clothes on their back. More than 1000 bras have been gathered for women since BraVa! began in 2015. The next time you are shopping for a new bra, buy one for yourself and then buy one for a local charity.

I am grateful for the opportunity to share my writing in such a supportive and welcoming community. I am honored and humbled to have been selected to read again this year.

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Image of blank computer keyboard with the words "BIG DATA" resting on the keys.

I Still Don’t Like This

A year and a half ago, my friend Crystal and I wrote guest posts for our respective blogs about an experiment we conducted on social media. You can read her original post on my blog here, and my post can be found on her blog here.

Both Crystal and I stopped using the “like” button on Facebook to see if we noticed a change in our news feed, or perhaps a change in how we interacted with social media. I have not gone back to using the “like” button since we began our experiment in August 2015. For a year and a half, if I have enjoyed, or disliked, or had a reaction to something in my news feed, I have taken the time to write a comment. Or, I have simply scrolled on by if I felt no real need to comment at all.

This change caused me to be more intentional with social media. Instead of my use of Facebook serving as a giant time suck, I now go to the site with the intent to catch up on what my friends and family are doing. I can’t stop using the site since my employment responsibilities include managing two Facebook pages, and I also help administer my Rotary Club’s Facebook page. Last year, I agreed to help serve as a volunteer moderator for the Disability Visibility Project Facebook page. Do I spend more time on Facebook than I probably should? Yes, but I view the site as a tool which can help me maintain connections to friends and family when I might not have time for a phone call and I am too much of an extrovert to give it up.

Then last week my friend Tonia shared an article about Big Data which I read with interest. The article, which was originally published in Das Magazin, described how political campaigns use psychometrics (sometimes called psychographics) for “innovative political marketing.” Now more than ever, it is easier for companies to use a person’s digital footprint to predict how that person will act in a given situation. I don’t claim to understand all the research, but it makes sense that data gleaned from a person’s social media feed or digital activity can be used to make predictions about that person.

For example, if you were to look at my “saved” files on Facebook (which I use to bookmark articles I want to read when I have time), you would find articles from the Washington Post, New York Times, The Guardian, and several websites for media outlets such as PBS, NBC News, and ABC (Australia, not America). You would also see blog posts related to writing and crochet, and many disability blogs. A scan of my saved articles indicate about fifty percent of them relate to disability, twenty-five percent relate to writing, and the rest are a mix of articles about crochet, baking, musical theater and dealing with grief.

Based on just this information (remember, I have not provided any “likes” to analyze), one can fairly accurately predict I pursue writing, and that either I have a disability myself or am very active in disability circles. My hobbies (baking, crochet, and musical theater) are apparent. It’s no wonder that ads for Broadway HD show up with regularity in my news feed!

But, how are all those data points used by others? What else do I see because of assumptions made by analysis of my digital footprint? Which articles are placed in my view based on my social media activity? Would it change if my online behavior changed? I will admit, I never noticed a significant change in what I saw on Facebook once I stopped using the “like,” yet it’s possible there was a difference I just didn’t observe.

Do I think I have some semblance of privacy because I choose not to use the “like” button? Of course not. My smartphone acts as a transmitter, giving apps various information such as my location, how often I travel certain routes, what I search for on Google, and how often I win or lose at Words with Friends. Sure, I could opt out of using my phone as often or restrict certain apps to gain more privacy. But I use my phone to help me manage my personal assistant staff which limits my ability to disconnect.

For now, I will continue to steer free of the “like” button. I will also probably stop taking online quizzes – because how many times do I really need to prove I am an extroverted word geek who has a vast knowledge of show tunes? I think I’ve provided enough evidence of this to Big Data, especially since I just aced the “name the musical movie from one screen shot” quiz.

The Will to Write

Two years ago, when I started this blog, I felt guilty calling myself a writer. I worried people would laugh at me, not take me seriously. I had to talk myself up each and every time I hit “publish” and put my work out into the world.

Fast forward two years to this September. I started a new memoir writing class with my friend and mentor Marion Roach Smith. I committed to finally working, really working, on the book – the book I promised my late sister Mary Jane I would write. I wrote daily, sharing my work each month with the others in my class. Finally I felt comfortable saying the words, “I am a writer!”

Confession time: I haven’t written in two weeks. Life has a way of changing the best laid plans. At least, it always seems to happen to me.

My beloved father passed away on December 14th, giving me a healthy dose of perspective just as I was starting to get mired in pre-holiday stress. In an instant, I went from “How will I ever get the rest of my cookies done?” to “How will I get home to Mom and my sisters?”

After the funeral, the family gatherings, the tears and the laughter, there was still Christmas. And work. And life. And a book still waiting to be written.

That is how it happens. We gather with loved ones to offer comfort and share memories. Then, we return to our new normal and try to make our grieving selves fit back into our prior routines.

Somehow, I never manage to fit.

When my sister Mary Jane passed away five years ago today, I learned how easy it was for me to cultivate a relationship with grief. At the time, I wasn’t aware it was what I was doing. Now, I recognize the listlessness and lack of focus.

I am on vacation this week. Once again, my sister Caroline has agreed to let me crash at her house for the week. It was supposed to be a week of writing, crochet and relaxation.

Every day this week I have sat to write, and nothing has come. Well-meaning friends have offered me encouragement. Just journal. Write to a prompt. Set a timer and write for just ten minutes.

I started this post two days ago. Today, because I made Mary Jane a promise and I always try to keep my promises, I am finishing something – anything – just to say I am writing.

I know enough to know that I need to listen to myself when I don’t have the will to write. It is fine to take a break, to grieve, to allow myself to retreat and take a respite.

The trick is to not encourage myself to stay in that dark place, to not allow my voice to dwell in the grief and sadness in my heart. Even though I may want to sit and mourn, I know how easy it is to become mired in the sorrow and not move forward towards the goal.

I am a writer. It is what I do to help process the world around me. I think in words, stringing thoughts together in my head whenever I have moments to myself. When I don’t write, I feel like part of me is not fully functioning.

My goal today was to write a post and get it up – no matter how long, even if I think it’s crap. My goal tomorrow is to write 750 words about my experiences as a former poster child.

Goals are good. They provide focus when you feel lost. They can be modified when life throws you curves. Sharing goals helps me remain accountable. Hence, I state them here so I know someone else is aware of my plan.

I’m not thinking beyond this week. I’ll spend the next few days playing with my sister’s dogs and crocheting in front of the fireplace.

But come next week, I’ll write again. Because I am a writer. And writers write.

Unruly Underwire

Last month, I took part in the 2nd Annual Brava! This event is a fundraiser for the YWCA of the Greater Capital Region. The evening features local writers performing readings on the subject of brassiers in their lives. I read my essay “Just the Bra for This” last year, and was honored to have another essay selected by the jury for this year’s successful event. Thanks to my sister Sandy, who was also one of this year’s featured writers, you can watch a video of me reading this essay.

Yes, this is a true story. Yes, I still talk to Don and he knows I shared the story publicly. I know I am not the only wheelchair user who has had odd things stuck in her wheels. Since I shared this video on my Facebook page, friends have shared their stories of underwear, hair ties, socks – you name it – stuck in their wheels. To my knowledge, I am the only one with an unruly underwire though.

Unruly Underwire

My longest romantic relationship started because I was being held hostage by a bra.

When Don first called in late September 2001 to ask me on a date, I was using a lightweight manual wheelchair. It had removable armrests, swing-away footrests and weighed less than 22 pounds. It was everything I wanted and needed from a wheelchair at the time.

The only part of the chair I didn’t love was the front wheel, or caster, mount. My front casters were four inches in diameter, held in place with a fork mount allowing them to spin and rotate easily, too easily. Things were always getting caught in them – hair, yarn, string, even fake cobwebs at Halloween.

I don’t really know how it happened. I was sitting in my bedroom, sorting laundry when the phone rang. The basket tumbled off my lap as I dashed across the floor to grab the cordless headset. Don said hello as I backed up to collect the wrinkled shirts and pants now on the floor around me.

Except, I didn’t move. My front wheel was stuck, not rotating, not turning, nothing. I almost flipped backwards as I uselessly struggled to reverse my chair off the pile of clothes. Looking down I realized something was wedged into the caster fork, through the front wheel.

My pink underwire bra, a favorite because of the fit, color and comfort, had somehow become twisted up inside the wheel. The wire itself, which had been threatening to come loose from its casing for weeks, was now wedged across the wheel, effectively locking it. My attempts to move and turn had simply lodged the bra firmly in place, preventing any wheel movement whatsoever.

I sat listening to Don, wondering how to bring this up in conversation. How exactly do you tell a male stranger that you are held hostage by a bra? A bright pink bra?

Um, excuse me Don. You don’t seem like a psychopath, and I’d like to talk to you, but there is a bra stuck in my wheelchair so now’s not the best time for us to have our first conversation.

Yeah – to pull that off without scaring a guy obviously flirting with me, who is interested in me, and who called me? As a rule, men didn’t often pursue me, so I was not going to jeopardize a potential romantic connection just because of an unruly underwire!

I continued to talk with Don as I frantically tried to come up with a strategy to set me free. All my adult life, I have joked with friends that living with disability has made me a female MacGyver, the TV hero who could get himself out of any sticky situation. Put me in a tough spot with very few resources, and I can problem solve my way through just about anything. But try as I might, I could not release the bra from the wheel. I twisted and contorted my body, bending forward, trying to pull the strap to move the wire while still maintaining a grip on the phone.

Yes, I love visiting bookstores.

I grabbed a pen off my dresser and attempted to push the bra out through the hole in the wheel.

No, I haven’t been to the new Barnes and Noble.

I leaned over the opposite way to take weight off the wheel praying to get it to spin freely, all the while making what I hoped were appropriate responses and encouraging remarks to Don.

Coffee on Sunday? I think that sounds great!

After an hour I realized the only way to liberate myself was to sacrifice the pink underwire and just cut the bra loose. I could see my scissors on the desk next to my bed, four feet away. Somehow, I had to get them.

So, I removed an armrest and used it to push the laundry basket across the floor to the desk. Turning a dirty pair of pants into a lasso, I tossed one pant leg over to the desk. The pants and the scissors slid and after four attempts, fell into the laundry basket. I dragged the basket containing the coveted scissors back to me with the chair armrest.

Snipping the offending undergarment into multiple pieces, I laughed in vindication. I wheeled backwards, taking in the tattered pink satin scraps scattered on the floor like cotton candy confetti. I wielded my shears in victory as I tossed the misshapen underwire into the trash.

MacGyver’s got nothin’ on me.

30 Days of Thanks Day 18 – Guest Post by Debbie Simorte

My guest today is Debbie Simorte. I found Debbie’s blog, Writing the Life Chaotic, when I joined my first online writing group two years ago. Whenever I need a laugh, I turn to Debbie’s writing. Often, my comments in response to her posts are variations of, ‘So – you’ve seen my small town in action?!’ Debbie’s honest critique of my own writing has made me try new ways of expressing humor while crafting a story. I am grateful Debbie agreed to share a post for my 30 Days of Thanks series. I hope you will take the time to explore her blog or her Facebook page after you read this post.

Starting Over

I’ve had to start over more times than I can count.

As I reflect on those times, although the circumstances were always different, the one constant was that women pulled me from the weeds and helped me through.

Some were already friends, some were mere acquaintances. Sandy Scott was a stranger.

We met at a community center where our preschool-age daughters were taking free dance lessons. We’d slip outside for a break after hearing the same Raffi song for the umpteenth time, and Sandy would excitedly tell me about getting licensed for her home daycare.

I’d been in Seattle for a year, unable to find work, broke, car-less, living with three other adults in order to pay low rent. Back then you snail-mailed resumes and hit the streets to apply for jobs. I could no longer even pay a sitter for a few hours so I could look for work.

I’m not the first woman to find herself in this situation after an abusive marriage—but dang!—freed from one trap only to land in another. One night at dance class, Sandy said, “I’m picking Jess up in the morning, and you are job hunting. I’ll have her back in time for dinner.”

She did this until I landed a job. Then she refused pay for a full month so I could drag a little farther from the weeds.

I’m thankful for all women who lift each other up, and today I’m particularly grateful for Sandy. I think she may have been the first person to say, “Just pay it forward,” and I do, because I remember.

I also remember the grand finale of our girls’ first dance recital. The little ballerinas formed a circle, took each other’s hands, and danced round and round to a song titled “Make New Friends (But Keep the Old).”

Make new friends,

But keep the old,

One is silver,

And the other gold.

A circle’s round

It has no end

That’s how long

I’m gonna be your friend.

 

Thanks for inviting this memory, and for your friendship, Denise.