In Case You Are Jealous of My Friday Night

People often comment on my Facebook posts (especially fellow ladies!) saying what a fabulous life I have. They see me gliding from event to event, effortlessly, cozying up to public figures and instagramming delicious food (and coffee drinks)!

I don’t blame you all for commenting, or even feeling a twinge of jealousy or resentment. It’s natural, and to be completely honest, the same thing goes through my mind when I’m instagram- or Facebook-stalking my friends and colleagues.

But, do you want the brutally honest truth? Because here it is.

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There’s A LOT that gets filtered out of my life when I post on social media. Like, a hell of a lot. When I publish a photo of me in a gorgeous dress with my hair and makeup flawlessly done at an event enjoying the company of others, here’s what you don’t see:

You don’t see/hear the laughably-inevitable meltdown/pity-party two hours earlier about not being able to wear the shoes all my other girl peers are wearing (heels, stilettos, etc.).

You don’t see the panic attack I’m having as I’m rushing to make it out the door on time and have to stop and raid every drawer in the house for urinary catheters. Since they are delivered and I need a doctor’s prescription, it’s not like I can waltz into a public restroom with a few quarters and get a catheter out of a dispenser. (But you can easily find tampons or condoms, no doubt!)

You don’t see the frustration I feel when trying to find the perfect purse to match my outfit— that is, one that is sleek enough to carry easily but that will fit at least 5 catheters (because when your LIFE depends on using a plastic tube every three hours, there’s no room for guesstimating. Better to overestimate than…God forbid. And if I have an infection…forget it.)

You don’t see me up all night with indigestion because my digestive tract is much slower than everyone else’s. That expensive dinner I had cost me a good night’s sleep.

But most of all, you don’t see the struggle it is as I try my best to “fit in” (say what you will about being an individual, but don’t kid yourself— EVERYONE wants to fit in) while treading the delicate balance of staying “healthy” (whatever that means, because I haven’t felt “healthy” in many years) and being able to breathe easy and have some semblance of a social life.

That all being said, I know how truly fortunate I am. I have opportunities that many of my peers with spina bifida do not. I don’t lose sight of that.

But, today is Friday. Tonight, God willing, I actually am going out on a Friday night alone (a rare occurrence!) to attend a social / professional function. Just a while ago, I got off the phone after talking to my medical supply provider and my urologist’s office back-to-back. It feels like I am constantly having to negotiate how important a life-saving product is to me. Negotiate how many times a day I am allowed to pee. Can you imagine having your visits to the bathroom regulated? These are questions I actually get from my doctor’s office. (They will actually insist I drink more water, and then ask me why I use so many catheters!)

Not to mention my private medical insurance, which makes me jump through bureaucratic hoops just to be able to receive these bare necessities.

I don’t want to be calculating. I don’t want to be counting catheters. I don’t want to leave half of my meal untouched because I’m afraid of indigestion. I don’t want to walk into the place and immediately scan where the bathrooms are. I don’t want to wonder where I’ll park my wheelchair.

Tonight, I just want to act my age, and know that I’ve earned it. Tonight, I don’t just want to LIVE, I want to feel ALIVE, and know that my posts on social media actually reflect the fabulous reality.

To the Woman who Aborted Her Baby with Spina Bifida

 

Dear Woman,

First off, let me say that I am not writing this on an impulse. In fact, I have given this a lot of thought and have decided to give this situation a “grace period” in which I could cool off, reflect, cry, pray, gain perspective from others in your situation, and allow myself enough time in which to answer you without anger or bitterness.

Of course, this time has allowed me to be more merciful and fair to you. But please know that I needed this time as much as you did. It’s not easy to for me to process my emotions about an issue that is so personal to me.

But, you E-mailed me asking for advice and answers. After choosing to terminate your pregnancy of a child with spina bifida, you want my advice, my insight, my wisdom, on how to have a “healthy” baby.

How’s this?

I have nothing to offer you. No advice, no answers, no wisdom, no tips, no magic crystal ball to predict what your next child will be like. 

My first instinct, upon reading your E-mail to me, was to hate you. After all, you managed to break down wall after wall of cautious, precarious illusion of self-esteem that I have spent 28 years painstakingly building. And for 28 years, it has worked for me.

 

Mami_baby

My Mami when she was about eight months pregnant with me. I am my parents’ only child.

 

When I first began blogging five years ago, I was moved by the many moms who contacted me. Most have had children with spina bifida, and some were pregnant with a baby with spina bifida, and wanted advice on how to handle the birth of a child with “special needs.” Or maybe they wanted solidarity; just the notion of knowing someone else out there in cyberspace can relate. I was elated at the idea of being able to help these women; give them a glimmer of hope for what the future held for their children. I offered them my friendship and unconditional support, and in return, I have been rewarded many times over by their reciprocity, their encouragement in my difficult times, and their genuine happiness at my triumphs.

Then I opened your E-mail. It’s as if five years’ worth of fortresses of support and encouragement from these moms and little white lies I told myself quickly eroded around me. I was exposed. Vulnerable. You shattered my illusion of invincibility.

I built a community of support and encouragement, of sharing knowledge along with the good, the bad, and the ugly about spina bifida. Women all over the world contact me to thank me for simply sharing my story, trivial as it may seem to many. Because the story of my normal yet fulfilling life gives them hope. It helps them to know their children can aspire to this.

And yet, I cannot help you, because you aborted your baby. You cut the common thread we would have shared. Now all I see is a large, dark chasm between us, because I am nothing like you. 

No, I am that child with spina bifida, the one you chose to abort. I look in the mirror, and I see the life that was discarded because it wasn’t deemed worthy of living.

And you ask me for advice because you don’t want your next baby to turn out like me.

And I am angry beyond words. Because in spite of all I have accomplished in my life, no one wants to have a child like me.

Not even my own mother would have wanted that. But she did.

 

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I was about 18 months old in this picture. Whether or not Mami envisioned having a baby with spina bifida, she and I have always been thick as thieves.

 

And that, plain and simple, is what frightens me the most. That maybe, just maybe, your story and my mother’s are not all that different. You each won the lottery that no one wants to win.

I wish you well…and maybe next time, take a second glance at your lottery ticket.

I Don’t Always Have Spina Bifida

 

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Photo courtesy Macbeth Photography: 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!).

 

Grammar

 

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.

 

Goats*That awkward moment* at Disney when you can’t figure out why the goats love you so much…and later on you find the bag of edamame in your purse. -_-

 

 

 

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.

The Power of Self-Acceptance Begins with You #loveurself

 

Disclosure: I was given a #loveurself T-shirt for participating in this campaign. I will not be compensated for publishing this post. All ideas and opinions are my own. 

 

There are moments when I’m looking at myself in the mirror and I don’t like what I see. In fact, I hate it. So much that I need to look away. It’s agonizing. 

What’s very difficult for me to remember during moments like these– is that I’m not alone. 

I’m pretty certain everyone has had moments like these, whether we choose to admit it or not.

What I also neglect to recall is that I am so much more than what is being reflected in the mirror. I am a person, a young woman, filled with potential, drive, passion, conviction, intelligence, humor, wit, compassion– and hope. 

 

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What do you see when you look at yourself in the mirror? Do you see any of those qualities? 

 When I was invited to participate in a fashion show at BlogHer 2010, I was forced to confront these questions myself. I confess, it provoked some tears when I thought of how often I was loathing my appearance.

I had written about this issue some time earlier here, about a subject that is still very painful for me to talk about.

Indeed, I find it very ironic whenever I receive compliments about my looks, because, while there are often times when I am admiring my appearance, a lot of my insecurities stem from this very same aspect.

I mean, where the hell was this pep talk when I was having a b*tch fit at Ross while trying on shoes that I knew I couldn’t walk in?

Yeah. That. 

This is why I felt compelled to join the #loveurself campaign. One of my deepest desires in sharing my personal stories is to encourage others to stop giving others power over their psyches. I know full well just how much headspace I’ve rented, free of charge, to these immature people who probably have a hard time facing themselves. 

As an adult, I feel I’ve been able to let go of at least some of this self-imposed, self-hatred. I’m not in high school anymore, and I don’t feel the everyday social pressures of having to face my peers everyday.

Instead, now I get to socialize– both online and off– with a wide variety of friends of different ages, genders, and stages in life. Many are parents or even grandparents, and have a lot of sage advice and encouragement to offer me.

I feel that it makes a huge difference to be surrounded by people who have achieved a level of maturity that sadly, many of your high school peers never will. That’s a hard lesson I’ve had to learn, especially when I always felt compelled to believe my peers. It’s one thing to know that someone is wrong– it’s an entirely different thing to actually believe it.

The truth is, I think I’ll always have a struggle whenever I look at myself in the mirror. It’s nearly impossible to erase all of the scars of years of teasing, bullying, and emotional abuse from mean-spirited classmates.

But my hope is that, in writing about this topic, and in publishing it, I’m taking that power back. 

I’m so done with giving others power over my self-image, because it’s supposed to be a personal thing, and a positive thing.

The journey towards healing is rocky and tumultuous. Nevertheless, it must start somewhere. 

And this looks like a pretty good place to start.

 

Love,

Laurita ♥

10 Things About Me That Might Shock You

Okay, I really, really didn’t want to have to do this. Don’t get me wrong– I think some people’s naiveté is so gosh darn cute!

But lately, I’ve seen an onslaught of “disability is so-frickin’-inspiring” stories that have made me roll my eyes and, sometimes, want to log out of my computer for a while. :(

So, whether you’re ready for it or not, here’s the truth– the brutal truth. Granted, some of it may upset you, but I’m okay with that.

 

1. I don’t cry myself to sleep at night, lamenting that I have spina bifida. 

I hate to break it to you, but most nights, I crash into bed and sleep, non-stop, for eight hours or so, after either blogging till the wee hours of the morning, or watching a funny video or doing something else that helps me unwind. So do many of my non-spina bifida peers.

 

2.  I drink. 

Yep. I don’t mean the “stumbling-out-of-Walgreens-at-3-a.m.-after-buying-a-cart-full-of-junk-food-and-tuna-fish” drinking, but yes, I drink socially. I always drink with trusted friends, or family members around. I never put myself in situations where the person I’m riding with has been drinking. That’s just not cool.

 

3. I don’t just automatically become BFFs with everyone who has spina bifida, like me. 

It just doesn’t work that way. I love connecting with others with spina bifida, of course, and many people do befriend me after visiting my blog. But I don’t necessarily “click” with everyone who has spina bifida, and that’s fine. It would be like saying, “all Latinos have to get along,” or “all African-Americans have to get along.” Are you kidding me? What century is this?

 

4. I have many friends who don’t have what is perceived as a “disability,” and we have a great time together. 

I’ve been blessed to meet people at so many different events and conferences. Most of them have very different characteristics, and you can’t lump them into one category. I love that! When I meet people for the first time who only know me through blogging/social media circles, I am often struck by how insignificant my “disability” is to them. It’s because they met me online first, without seeing the wheelchair or other things that people might otherwise see first. They value me for my qualities, and I value them for theirs. We have intellectual conversations. We have inside jokes. We have a true bond.

 

Coffee = Bliss. :)

 

5. While romantic love would be nice, I don’t necessarily seek out people “just like me” as potential partners. 

Yep, it’s true. Believe it! I don’t aspire to a “matchy-matchy” relationship where my partner has spina bifida just like me. I look at intellect, personality, common interests and future goals as criteria for potential partners, and not their physical abilities/disabilities. I expect the same from a potential partner, too. I don’t want to be disqualified because of a perceived “disability.” It’s always a mystery why certain couples are attracted to each other. I don’t think I’m supposed to question why “some opposites attract” and others don’t. Please, don’t question me, either.

 

6. I can open doors, tie my own shoes, go to the bathroom on my own, fix myself a sandwich, etc. etc. 

While my cooking abilities are still questionable (LOL!), I do a lot of things for myself, on my own. And I’m still learning. Aren’t we all?

 

7. I can probably out-spell and out-edit you, or anyone you know. 

Writing is my thing. Spelling and grammar are also “my things,” I suppose. Name the time and place. Chuck Norris and I will be waiting.

 

8. I use a wheelchair part-time, when needed. And hardly ever inside the house. But I can dance like nobody’s business. 

I’m not talking Gangnam Style here, but I like to think I can salsa dance circles around most people. 😀

 

9. I suck at giving directions. No seriously, I can’t find my way out of a paper bag. 

During road trips where my father asks me to read a map, I usually toss the map away and reach for Google Maps on my iPhone. Siri is becoming my best friend, a.k.a. navigational device.

 

10. I don’t just think about the spina bifida cause 24-7. There are so many wonderful causes that deserve my attention. 

I love social good, and I have a feeling that I live for social good. Whether it’s through a blog post, a Tweet, a Facebook update, or a donation, I enjoy supporting many different causes. I feel strongly about supporting LGBT rights, charities that give to the poor, the homeless, the hungry, and organizations that help children and adults with different chronic conditions. I think social media provides us with some of the best tools ever to support and spread the word about great causes. It’s awesome, because social media makes it easy for us, so we don’t have to choose just one cause to throw all our support to.

 

 **Bonus Tip/Fact: If you ever need a favor from me, try bribing me with coffee.

Nine times out of 10, it works. And the other 10 percent of the time is unaccounted for. I just made it up. 😉

 

 

Have “The Talk” With Girls About Self-Esteem

Self-esteem is sort of a bizarre topic for me. Not that I don’t take it seriously, but that my own personal story of self-esteem is unevenly peppered with peaks and pitfalls. 

I think it’s safe to say I’ve written extensively here about my own self-image, first for the highly popular post Standing on My Own Two Feet, then a few months ago, right after I did the BlogHer ’12 Fashion Show.

Still, it seems to be a very sensitive topic for women, young and old, and I feel it’s a responsibility for adults like me to share personal stories like those linked above, in order to help defeat the pervasive notion that there is only one precise standard of beauty.

That’s why I’m especially proud to partner with Dove for what I believe is a truly inspired campaign!

Dove is leading a bilingual campaign called “Let’s Talk” (“Hablemos”) through their Web sites “Making Life Better” and “Vive Mejor.” The initiative offers tips and resources that might be helpful when talking to a young girl about self-esteem issues.

Why do I feel strongly about this campaign?

 

Well, the easy answer for me is that I’ve lived with self-esteem issues all my life, and am making it only because of a wonderful, solid support system.

But, don’t take my word for it. Instead, let’s look at some disturbing facts shared by Dove:

 

  • Six out of 10 girls will stop doing the things they love because they feel bad about their looks.
  • 72 percent of girls ages 10 to 17 feel “tremendous pressure” to be beautiful
  • Only 11 percent of girls ages 10 to 17 are comfortable using the word “beautiful” to describe themselves
  • When feeling bad about their physical appearance, more than 60 percent of girls globally (ages 15 to 17) will avoid normal daily activities, like “attending school, going to the doctor, or even giving their opinion.”

Say what?

Take it from someone who knows the pain all too well—this is unacceptable.

We have the responsibility, as a community, (and I mean “community” in a very broad sense! We’re all in this.) to let all young girls know just how strong, beautiful and smart they are—how capable they are. 

If we don’t act fast—we risk feeling the loss of this next generation of women in the STEM fields, in the arts, in sports, in politics—in everything.   

What is Dove doing about this?

 

Several big-name organizations that help girls have partnered with Dove, including Girl Scouts of the USA, Girls Inc., and Boys & Girls Clubs.

More than half of girls around the world say that their mother is their number one female role model. Moms can take this opportunity to talk to their daughters about beauty. According to Dove, something as simple as starting a conversation can make a difference in self-esteem.

“Let’s Talk” is also the theme of Dove Self-Esteem Weekend, which will take place October 5-7, across the nation. Dove’s partner organizations will be hosting events around the country. Wal-Mart stores will set up designated areas where women can stop by and share an encouraging message with girls.  

We can also do our part online by joining the conversation on Facebook and on Twitter by using the hashtag #DoveInspired.

Maybe my own turbulent childhood– filled with equal parts encouragement from my family, and ostracism from my peers– is the reason why I never hesitate to tell my young cousins, ages 10 and 8, just how beautiful they are and how proud I am of their accomplishments so far. This isn’t difficult for me to do, as I am very proud of them and love them.

I feel if I indulge them with praise and encouragement, have nothing to lose.

But we have everything to gain. 

 

**Disclosure: This post is sponsored by Dove and Latina Bloggers Connect and I will be compensated. All ideas and opinions are my own.