It’s never over. It never stops hurting. I’m never immune.
One of the definitive moments of the feature film, “Sex and the City,” shows protagonist Carrie Bradshaw entering the large closet of her would-be new apartment. As the lights flicker on, she takes in the size of it (really, it’s ginormous) and imagines all of the designer shoes she will fill it with.
I cringe whenever I watch that scene, as much as I love that film (can you say, “guilty pleasure”?).
Because I would never find enough “sexy” shoes to fill that closet with, even if I could afford them all.
Because the shoe industry has neglected to make shoes for women like me. Women with small feet. Women with spina bifida.
For me, an assertive invitation of “Let’s go shoe shopping” from Mami evokes feelings of being a lamb dragged off to the slaughterhouse.
I’ve been that girl— the one who has broken down in the size 5 aisle of Payless, or many a shoe store. Because they don’t carry anything smaller for me.
Indeed, some of my cutest “girly” shoes are in children’s sizes. And yes, they’re flats.
I can’t wear heels unless they are even. None of those stiletto-style heels or wedges— even the shortest heels will have me teetering off-balance within seconds of standing.
As I visit shopping malls and see signs indicating accessible entrances and restrooms, and ramps conveniently placed across from accessible parking areas, I am reminded of how far we’ve come as a society that is striving to welcome people with spina bifida and other disorders.
As I scour the ladies’ footwear section of any major department store, I am cruelly reminded of how far we still need to go.
Indeed, I think my gender makes things worse for me as a shoe consumer. Men can get away with wearing more comfortable shoes, and even dress shoes don’t have heels. In fact, they could probably get away with wearing the same pair of shoes for a week straight, and no one would be the wiser.
The entire culture of being a woman in the 21st century is centered around footwear. “I don’t know if I have shoes that will match this outfit!” “Let’s go shoe shopping this weekend.” “Oh, my shoes are killing me, and I didn’t bring rescue shoes.”
Guess what? Your “rescue shoes” are what I would wear to a social function. For me, there is no such thing as rescue shoes, because I cannot wear the shoes you need so badly to be rescued from.
I can recall so many occasions on which I’ve attended parties with girlfriends. Near the end of the night, they are complaining about their shoes. “God, my shoes are KILLING me, Laurita! You are so lucky you get to use that wheelchair. Can I borrow it?”
No, you may not borrow my chair, because it is not a one-time deal. With this wheelchair, (which I use often for events, especially when I have to resort to wearing uncomfortable boots to match an outfit) comes a lifetime of regret. A lifetime of envy, resentment, and anger, because I cannot wear the shoes that are killing you right now. Because I wasn’t granted the luxury of being able to wear strappy heels that I will remove in less than two hours to dance barefoot on the dance floor after my feet have blistered.
Because as much as I hate to admit it, especially to myself, I LOVE the shoes that every woman loves— the strappy, shiny heels that you seem to glide effortlessly in, while I stumble clumsily in my flat boots.
Because Fate long ago decided that I do not get to live the Carrie Bradshaw fantasy for one lousy night, because that’s life.
Oh, your shoes are killing you? Then by all means, be my guest and remove them. You know what? They’re killing me, too.
MacbethPhoto.com My life consists of many awesome events…and many funny photos!
Yes, I know. That’s quite the inflammatory title.
This is a topic I’ve been reflecting on for a long time. I’ve read many articles and posts on both sides of this argument. I’ve read posts from adults with spina bifida, and parents of children with spina bifida, who say that spina bifida doesn’t define them.
I’ve also seen the other side of the coin, from parents who say that, indeed, spina bifida defines their children.
One of the most interesting arguments I’ve heard for the latter point of view is from my friend, Mary Evelyn. Even when I don’t agree with her perspective 100 percent, she always manages to make a very sound, introspective and rational case. I can’t help but agree with her on this– to a certain degree.
To be sure, even now, in writing this, I am on the fence on this subject.
Mary Evelyn, and all of those who agree with her, is right. To a certain extent, spina bifida will always define me and my life. It’s an integral part of who and what I am. I will never be able to shrug off the years, nay, decades, of how spina bifida has molded me into the person I am. The adult I am.
But there is another side of this coin, I ardently believe, that deserves equal inspection. There are moments, even days, when I don’t feel like I have spina bifida.
Do you know what I’m talking about? Whether you have spina bifida or not, perhaps you can relate.
I’m talking about those moments when I’m getting ready to go out, and I’m putting the finishing touches on my outfit– my earrings, my eyeliner, etc. I glance at myself in the full-length mirror, and I see…a beautiful woman. Not “a woman with spina bifida.” Not “a woman who has had several brain surgeries.” Not “a woman who is now struggling with lower back pain on a daily basis.” Not “a woman who has to self-cath every three hours in order to live.”
Just…a beautiful woman.
When I’m out with my closest girlfriends, and having a glass of sangria or a cup of coffee, it’s not the woman with spina bifida they are out with. It’s the blogger, the social media consultant, the coffeeholic (more often than not), the grammar nazi who is constantly editing other people’s words as well as her own (I seriously can’t help it!).
Other times, it’s the flirt (sometimes) who wants to get that cute server’s attention, or the wise counselor, when a girlfriend is struggling with a problem (I’m really obsessed with analyzing everyone’s problems, including my own!), or the goofball.
In fact, when I’m among my closest friends, spina bifida is a topic that is introduced very rarely. I think, by this point, most of them acknowledge it in passing, the way you would acknowledge a person’s eye or hair color, or stature.
I’m also just as protective of my friends as they are of me…sometimes I’m the “older sister,” and sometimes they are. It just depends on the situation.
That isn’t to say that I feel ashamed of having spina bifida…but it does make me uncomfortable to be around people who barely know me and already feel the need to pepper me with a dozen questions I might not feel like answering at a networking event. Sometimes, I’ve made an unconscious decision to remove that particular hat for the evening…and that’s okay. I feel entitled to that.
I’ll always be an advocate for the spina bifida cause. That won’t change anytime soon, I’m pretty sure. I’m committed to it, because I understand it.
But if I paused to dwell on spina bifida every day, every moment, every second when I’m getting dressed or putting on makeup, or picking out my earrings…well, then, I’d never make it out the door on time.
When you’re going through life, struggling to keep up with everything that’s going on with you, around you, it can be a real challenge sometimes to remember why you “do what you do.”
Three years and eight months ago, I had the opportunity to meet my new musical “idol,” contemporary jazz singer and songwriter, Spencer Day. I was simply overjoyed to meet him, and I honestly never thought much would happen after that.
I couldn’t have been more wrong.
Since our initial encounter in Clearwater for a jazz festival, after which we talked at length and I briefed him on my campaign for raising awareness of spina bifida, we have remained connected. He knows I’m moving forward, deciding what the next step will be for this cause, and he wants to be there to support it, in any way he can.
Several months ago, the opportunity arose for me to be involved in helping his career, by collaborating with his fan club and promoting events, music, and Spencer’s latest projects on different social media channels.
Out of all the work I’ve done thus far in my life– including past jobs– few things have been as rewarding for me as the experience of being a part of Spencer’s Fan Club Social Media Team. We started as a motley crew, an assortment of people who clearly share a common interest– an enthusiasm for Spencer Day’s music.
About a month ago, a crazy, random idea popped into my head: Hey, guys, why don’t we host a Twitter party for Spencer?
It seemed like a harebrained project to take on, considering I’m always on the go, and everyone is busy during the holidays. But we decided to do it.
Yesterday evening, I hosted, along with Spencer as our guest of honor, a Twitter chat with many of Spencer’s biggest fans, in addition to quite a few people who are new to Spencer’s music. The conversation was lively, informal, and very funny at times! Attendees were encouraged to ask Spencer anything– and they did, and he responded. 😉
As I sipped on my coffee (in my pajamas!) while trying to keep up with the conversation thread, I marveled that such an awesome cyber event could be pulled off in such a short window of time. I also couldn’t help but feel gratitude toward all of the people who participated– even if only for a few minutes during their busy evening.
As a social media consultant, the number of “impressions” or “pageviews” matters. It’s a measurement of quantifiable success, and it’s the most “tangible” evidence of whether or not an online event was a success.
As a person, however, I realized that shouldn’t matter to me.
What mattered is that everywhere I looked in my Twitter feed, I could see familiar “faces,” avatars and usernames of my friends, some bloggers, some non-bloggers, who showed up in support of me– and in support of Spencer.
We also got to reward some of Spencer’s fans and followers! We gave away 5 copies of Spencer’s latest album, “The Mystery of You,” as well as 6 digital copies of Spencer’s holiday album, “If Christmas Doesn’t Kill Me.” It was so rewarding to make people happy by sharing his music!
The report I generated afterwards showed that, in the past week, the hashtag #SpencerDay has had over 1.8 million impressions. That’s not bad at all, considering how many holiday/Christmas parties, family gatherings, business events, and other commitments everyone has going on during this season, that make it difficult to participate in online events.
For a social media consultant, those 1.8 million impressions are the definition of success.
For me, however, it’s those familiar faces, the “avatars” I know so well, that made me feel like a winner.
I’m truly blessed to have so many people who genuinely support and “get” what I do. Even my parents, who years ago found the words “blog” and “Tweet” intimidating, pitched in by Tweeting and making sure I had a hot mug of coffee to help me stay alert. 😉
Yes, it’s true– there are people who might measure success in different ways– by monetary earnings, job promotions, or how many conference speaking gigs they landed in a year.
That’s all good and enticing. (Hey, who wouldn’t want all that?!)
But sitting at my laptop, Tweeting furiously and watching as the stream flowed constantly with new comments, questions, and retweets from people both familiar and unfamiliar, I couldn’t help but feel like the luckiest girl in the world.
Thank you, from the bottom of my grateful heart, to all of you who joined, shared, Tweeted, promoted, and encouraged. Thanks to all of you who had the most awesome things to say about Spencer’s music, whether it was the first song you’d heard or if you’ve been a longtime listener.
Thanks for being there anytime I’ve wondered if I could do something. Thanks for lifting me up.
Thanks, above all, for helping me to keep my perspective.
If you aren’t already following Spencer, please do so here:
As my body and mind seeks to recover from all the fun and excitement of Hispanicize 2012, and I work to keep up with the connections I’ve made, I’m finding a lot of merit in my idea of compartmentalizing my experiences into separate posts. The truth is, I honestly couldn’t consolidate it all into one blog post if I tried.
So alas, here’s the second installment of my Hispanicize 2012 series!
On the first official day of the conference, Tuesday, April 10th, it was very exciting to begin seeing friends from all over the country pouring into the JW Marriott Marquis. I reconnected with many old friends from LATISM, NAHJ, and also from many local organizations I’m familiar with.
One especially interesting session I started the day off with was with Carla Briceño of Bixal and Lillam Acosta Sánchez of nacersano.org, the Latino outreach branch of March of Dimes. I had the honor of being a co-panelist with Lilliam at LATISM 2011 in November. The information they gave during the session really highlighted key ways that organizations, whether non-profit or not, can engage with the Latino community and get their message across effectively using online channels.
During the panel, Lilliam actually called on me to explain folic acid’s role in helping to prevent spina bifida! It caught me completely off-guard. Fortunately for me, I can talk about this, even in my sleep. 😉
Then I was distracted by coming across even more of my cronies– Cristy Clavijo-Kish, Libby Juliá-Vázquez, Lynn Ponder, Fernando Rodríguez, Andy Checo, and a new acquaintance, Albert Collazo (Albert and I became fast friends, though!).
Perhaps one of the most invaluable things for me was being able to personally thank the people who made it possible for me to attend Hispanicize. I loved meeting Katherine Johnson!
Ever since we met during BlogHer ’10 in New York City, Blanca Stella Mejía and I have been like blogger besties! To say that she has been an inspiration, a mentor and like a sister to me would be a vast understatement. She has been one of the most supportive people for me in the social media world, and offline, she’s the best!
Blanca was one of the first blogueras to interview me for her own blog, MiCaminar.com. She, Jeannette Kaplun of Todobebé, and Maria De Los Angeles of Sex and the Beach are no doubt my best friends in South Florida!
The next part of my day was spent cruisin’ around in a Chevy Volt, which is an electric-powered car. It will use electric power for the first 40 miles, then the battery takes over. The Chevy Landmark Tour was one of the most clever features of Hispanicize 2012, as it took attendees on not only a scenic tour of Downtown Miami, but it also engaged all the senses.
From the moment my parents and I jumped into the Chevy Volt, it was a pretty smooth ride!
I was quite fascinated by some of the Chevy Volt’s high-tech features.
The tour took us to the Little Havana area to see the Cuban Memorial Plaza, where cubanos who had been exiled from Cuba and who fought in the Bay of Pigs invasion are remembered with reverence.
During my excursion in Little Havana, I got to meet a group of Cubans who are protesting the the incarceration of political prisoners in their native land.
Even if my interaction with them was very brief, I felt the energy of their cause, and it certainly ignited a fire in my activist’s heart.
But visiting Little Havana wasn’t all politics and patriotism. I saw a few more great sights and grabbed a bite at the famous Café Versailles.
No visit to the most famous Cuban neighborhood in Miami would be complete without a little Latino flavor! The tour stopped at Café Versailles– where tour participants were treated to coladas (tiny shots of espresso) and croquetas– both staples in the Miami diet!
Thanks so much, Chevy, for the awesome! memories!
There’s much, much more to come soon on Holdin’ Out for a Hero about Hispanicize, including a review of my panel discussion, Blogging for a Cause, with Lisa Quiñones Fontánez, Eliana Tardío Hurtado, and Chantilly Patiño. Keep checking back for updates, and don’t forget to also visit Espresso con Leche for bilingual content and more photos!