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.

11223537_1032845593471332_6071060363305602142_n

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.

On Sitting Alone at a Starbucks on a Sunday

 

 

Unknown-1

Let me preface this post by stating that I rarely eat alone. Or drink alone. Or think alone. In fact, I usually hate being alone. In any situation. More often than not, being “alone” to me, means listening to my Pandora stations or binge-watching videos on YouTube. Even reading by myself is difficult to do.

 

But, today I found myself drinking a latte at Starbucks. Alone. Don’t misinterpret me. I needed this “alone time,” badly. I needed time to think and feel and wallow and assess and reassess and analyze and reflect. The thing is, the longer I sat at that Starbucks alone, yet surrounded by strangers, the more I realized I have been doing this to myself in many ways for a very long time. A very long time. 

 

I’m not an introvert, and I’ve known all my life that I thrive when being surrounded by people who love and support me, and who enjoy working with me.
So, what happened? Well, what usually happens? Life situations change, or people change. Or in my case, it seemed like both. At some point, as fiercely as I loved the people in my life (and I have the innate capacity to love fiercely and loyally), I realized I have long outgrown the dire need of acting like a 21-year-old. Why? Well, for starters, I just turned 29. My interests, though much the same as before, have evolved. I have evolved. 
 
I have long prided myself on purposefully seeking out friends who share my somewhat sophisticated, even precocious interests. I have always enjoyed spending time with the “grown ups,” and even as an adult, it pains me to say that I am quite often afraid of seeking out my peers. Perhaps it’s just “only-child syndrome.” Or, perhaps not.
So, the invites would come, and I’d turn them down out of cowardice or pure lack of interest in said activity. But the more invites I turned down, the less the invites came, and pretty soon, I began to feel isolated and ostracized. My closest “friends” felt more like strangers, and it made every single one of my attempts to communicate with them feel more like a confrontation.

 

It was then that I began to see it. Weekend after weekend of events I was not invited to. Social activities in my social circle I was excluded from. Friends who had been like family turning their backs on me.

 

I started feeling like I was back in grade school, or in high school, during those incredibly painful and humiliating years of ostracism and exclusion. As much as I’d like to say that I’m older and wiser now, and that I know better than to get caught up in the petty toxicity of social media, I wasn’t above it. I’m still not.

 

No matter how many times I would reach out to my friends, they would not reciprocate. My own invitations, my own attempts at repairing a grossly misunderstood rift, went callously ignored. And it’s nothing I hadn’t experienced before in my life, since early childhood.

 

It hurt. It bled. And whenever I would think I was already numb, another weekend would pass and the tears would begin to flow all over again.

 

Now, with open eyes and a heavy heart, I truly realize what was so simply yet accurately expressed in the film “The Jane Austen Book Club”: High school’s never over. 
 
Just because I quickly grew tired of the partying and booming music of my twenty-something peers, doesn’t mean I grew tired of them. 

 

But to my chagrin, I guess I’m still that girl. That girl who is forgotten when the sleepovers are planned. That girl who isn’t invited on road trips or to house parties or even Sunday brunches. That girl who has all but given up and now spends her weekends praying and spending time with those who truly adore her– her parents.

 

That girl who wants to change the world but can’t seem to find anyone to have coffee with on a Friday afternoon.

 

That girl, I see, has been proverbially sitting alone at a Starbucks on a Sunday all her life. Waiting. Hoping. Crying. Grieving.

 

The irony of it all is, this girl is often the envy of others who follow her Facebook page and complain about what a fabulous life she has.

 

I suppose since we tend to post about what we do and not what we don’t do, it’s an all-too-simple mistake to make.

 

Yes, I know I have an amazingly encouraging extended network– family and friends that live in other cities, other states, other countries even. Some, I have only met on social media! Sadly, most of these people are too far away for me to invite to lunch (or coffee!), but I will never stop appreciating their unconditional support and love. And yet, I still feel alone. 

 

That girl who is sitting by herself at the Starbucks, staring at a nearly-empty, now cold cup of coffee, is tired of waiting. She picks it up, throws it in the trash, and walks on.

 

The numbness has closed in on her once more. For now. But it’ll be back.

It’s never over. It never stops hurting. I’m never immune.

 

 

Your Shoes are Killing Me

 

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.

 

Shoes

One of the few pairs of shoes in my closet that have short heels. I wore this outfit to a vintage-themed event. When I posted this as my profile pic a while back, I received compliments on my cute pose. Little does anyone probably realize I am grasping at the tree to keep from stumbling.

 

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. 

My Actual Letter to the Mother who Aborted her Baby with Spina Bifida

 

A note to my readers: 

Recently, I received an E-mail from a mom who contacted me for advice. She had a pregnancy affected by spina bifida, and at the recommendation of her doctor— she chose to abort. In addition, she wanted my advice on how NOT to have another baby with spina bifida. As you might have read in my previous post, I felt the entire gamut of negative emotions upon opening and reading that E-mail— anger, sadness, judgment towards her, and just an overall sense of melancholy that seemed to pervade my emotions for several days. 

In a desperate attempt to sort out my thoughts, I took to the only place I felt I could safely share my heart— this blog

 

CamelMeme

 

 

The backlash was almost immediate. I expected there would be pro-choice advocates (I am still very much on the fence in the abortion debate— so don’t ask me) who would argue that she acted on her rights. Really, I anticipated that. 

What I didn’t expect was the anger and vitriol that spewed, even from moms of children with spina bifida who know me personally. I was accused of not being a good advocate because a good advocate “doesn’t think of her own feelings.” 

How is it even possible to do that!? I could never put my own feelings aside, for it was my own feelings that helped me become an advocate for the spina bifida community. It is my emotions that fuel my passion for activism and education. I could never turn off my emotions. That is just absurd. 

However, I also was not prepared for the outpouring of love, support, and encouragement from many friends and followers who applauded my article. They felt it was a good tribute to how many parents of kids with spina bifida— and adults with SB, especially— feel when they come across stories like these. I will be forever grateful especially for these people, for they buoyed my spirits up during one of the most challenging times I’ve encountered in my 5+ years of blogging. 

What a difference four days makes! 

After a few days away from the circus (really, it was ridiculous!) I decided to finally reply to this woman with a clear head and lighter heart. I’ve also been physically sick with various illnesses which have had me very preoccupied. 

So, without further ado, this is what I actually said to her— verbatim, raw, uncut, no edits. And it was from the heart. 

 

Dear _____________,

Thank you so much for contacting me. I can’t imagine how difficult it must be to contact someone with spina bifida after losing a baby with spina bifida.

First, let me say I am very saddened and sorry for your loss. However you lose a baby, it is heartbreaking and it must be so difficult. I admit, upon first reading your E-mail, I was quick to judge you. I felt angry that you did not want to have a baby with the condition that I have, as if having spina bifida means that my life is not worth living. This is why I did not answer you immediately. But after much thought, crying, and praying, I have come to realize that there are many like you who do not have the information they need to make this decision. I know for a fact that many doctors put pressure on mothers to have an abortion when spina bifida is diagnosed.

I have lived with spina bifida my whole life, but I have never been a mother, so of course, my advice is based on what I know from having spina bifida myself.

But, I receive many E-mails from mothers who are pregnant with a baby with spina bifida, and many who have children with spina bifida.

Let me start by saying that there is no way to guarantee that you won’t have another child with spina bifida. Nobody can promise you that.

Sadly, there has not been much research or information about spina bifida until recently. Honestly, the only way to guarantee that you won’t have a baby with any disorder or disease is to not get pregnant. A B-vitamin called folic acid has been shown in recent years to help prevent a child from having spina bifida, but even if you take it as recommended by a doctor, it only works about 70 percent of the time. So, that is not going to promise you a baby without spina bifida.

Here is the link to some information about folic acid published by the March of Dimes, a wonderful organization that helps prevent birth defects and support families of children affected by birth defects: http://www.marchofdimes.org/pregnancy/folic-acid.aspx

Finally, because you seem very determined to not have a baby with spina bifida, the final piece of advice I can think of offering you is this: if, by chance, you do end up having another baby with spina bifida, please know that it is NOT a death sentence, or a tragedy. 

I have met many, many families who have children born like me, with spina bifida, and who, like me, grow up to be happy, successful, even healthy adults. Yes, they sometimes go through many surgeries or other medical complications, but most can grow up happy and make friends, and as adults, get jobs, go to school, and even get married and have their own families. I have played with many children with spina bifida I have met through these families, and they are absolutely beautiful and precious, and very smart and active.

It is possible to have spina bifida and live a happy, healthy life. 

I work as a blogger, writer, and social media professional. My work has taken me to different places, as I am often invited to speak at events and conferences around the United States. I have connected with adults with spina bifida and families all over the world who reach out to me for advice or simply to know that someone else understands.

I do not mean to say that I never get sick or feel pain, because I do. I have had 19 surgeries and many, many hospital visits. My family has been through a lot, and it is not easy. Pain is a part of life, and even “healthy” children will get sick, get hurt, and suffer at some point. Every parent feels their job is to take away their child’s pain, but like my parents have done with me, their job is to stand by me, to hold my hand when I am having a hard time. They are my best friends and love me so much.

So please don’t think that having spina bifida means I have had a horrible life. Thank God, I live a wonderful life and I feel grateful for every minute of it.

I hope this serves to encourage you, no matter what doctors say, no matter what others say to you, to be the best mom you can be for your child, whether he or she has spina bifida or not.

That’s all you can really do.

 

May God Bless you and please contact me if you want to talk some more. I am here.

Laurita

 

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.

 

Mami_me_crawling

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

 

1398934_10100702767825013_1036425815_o

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. 

 

Loveurselfpic

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 ♥

The Sad Truth About ‘Selfies’ #NaturalDay

Disclosure: This post is not sponsored. I will not receive any compensation for writing/publishing this post. I am writing it of my own free will. All ideas and opinions are my own.

 

I’ve had a lot to say lately on the societal front. And I mean, a LOT. It’s no secret that I’ve always had my major gripes with society, and who can blame me? As a young, naïve, kindergarten kid, it was society that informed me that I was different, and not in a way that would be deemed “acceptable.”

It was children in our society that bullied, taunted, and tormented me, and it was parents of those children in our society that stood by idly, shrugging their shoulders, and letting it happen, while my parents made desperate phone call after phone call to plead on my behalf that they talk to their cruel kids. 

But maybe– just maybe, this wasn’t entirely their fault. Because other parents maybe stood idly by while this happened to them as they were growing up. They learned that some kids are just “born different,” and it’s okay to stand by while they get helplessly picked on because of something in their physical appearance. 

I’ve made some incredible friends in the past four years of being a blogger and online activist. Last night, while flipping channels absentmindedly, I grew bored and decided to join the #NaturalDay Twitter party, hosted by my awesome friend, Nadia Jones, of Justice Jonesie and the Niche Parent Network.

The party’s guest of honor was Sanah Jivani, a girl with an unbelievably remarkable story that I’m ashamed to say I’d never heard of until yesterday.

Sanah was diagnosed as a little girl with a rare disorder that caused her to lose her hair gradually. By the time she was in middle school, which is such a critical time in the human development process, she had lost it all.

The target of teasing and bullying, she decided to take a bold step– she took to YouTube and filmed a short video of her removing her wig.

It went viral. She received many supportive and encouraging messages, and she had found her calling. 

Sanah launched a project called “Natural Day” for today, February 13th. The purpose is to get everyone to go without makeup, wigs, or embellishments for one day. The request is simple, but it sends a strong resounding message about who we’ve become as a society. 

We are all smoke and mirrors. On instagram, we are all about filters. 

It’s sad to realize that, in an age so obsessed with “the selfie,” most of these self-portraits are actually staged– with lots of makeup, perfect lighting, and carefully-coiffed hair. Rarely is there any actual spontaneity in these images. And, as a result, rarely is there ever any truth. 

Watching Sanah’s brutally honest video, I can’t help but wonder what my friend Carly Findlay, an Australian blogger and badass appearance activist, would have to say about this topic. She has spent her entire life living with a condition that she can’t hide from.

In a way that might not be obvious to most, I’ve done something very similar with my body– I’ve tried to hide it. I’m reflecting on a post I wrote in 2011, Standing on My Own Two Feet, which I found excruciatingly difficult to write. 

I remember sitting at my laptop, eyes wide and wary, hands cold and clammy, as I hit “publish.” I remember refreshing my Facebook page what seemed like a million times as supportive comments pouring in.

I remember my eyes welling up with tears as I realized that people love me and accept me for who I am.

I remember feeling vindicated. 

So, for Sanah and so many others, here’s my own selfie. No makeup, hair slightly “done” but nonetheless in disarray. No smoke or mirrors– just me. 

 

 

NaturalDay

 

 

Who knows? If Sanah can do this– reveal her true self, little by little, maybe I can, too. 

 

I never go out without makeup on my face, so for me, let’s just say this is a good first step in the right direction.

Be sure to post your own selfies and videos without makeup and with natural hair today, using the hashtag #NaturalDay! And follow my girl Sanah on Twitter @SanahJivani.

We may be a society that is saturated with images of New York Fashion Week models that are rail-thin and wear excessive makeup and high heels, but we’re all human and we can grow. (To that end, did you see this awesome article in HuffPo about the first woman with a ‘physical disability’ to strut the NYFW runway? Check it out!)

Yes, these are all baby steps, and it’ll take a heck of a lot more than just a selfie or two to change long-held standards of “beauty.” But that’s what’s so fabulous about the internet.

It only has to start with one. 

 

For more of my thoughts on beauty and self-worth, please read “The Woman in the Mirror,” my post on the BlogHer ’12 Fashion Show, which I participated in as a model, as well as “Standing on my Own Two Feet,” which was chosen for BlogHer’s Voices of the Year in 2012. 

 

Love,

Laurita ♥

 

 

My Sin of Omission

DuctTape

 

Yeah, it’s been a while, to say the least.

I spent the last few hours posting photos, status updates, and responding to Tweets about an event I attended in Orlando, and which I plan to write about on my other blog.

Earlier tonight, I put on my casual-dress-professional-cold-weather attire and was present at an exclusive preview tasting at a chocolatier.

I sipped great wine, ate fine chocolate, and mingled with friends, old and new.

We exchanged lighthearted conversation about our blogs, and weighed in on other recent events many of us have attended.

I exchanged hugs, social kisses, and sincere thanks to the people who hosted and invited me.

And I did it all with the utmost sincerity. Of that, you can be sure. 

No one knew that, for about a week, I’ve been dealing with a persistent, painful bladder infection that has me cringing every time I pee (a.k.a. “self-cath,” but whatevs. Peeing is peeing.).

No one probably imagined that, every night for the past three nights, severe bladder cramps have kept me up late and have almost brought me to tears. (Well, not really close to tears– but only because I have a pretty high threshold for pain. I’ve grown “accustomed” to it, if that’s even possible.) 

No one could have known that, just this afternoon, I was on the phone several times with my urologist’s nurse, scheduling what will be my first appointment in years with him. I’ve been in a urology limbo of sorts, because he is a pediatric urologist, and while technically, he is supposed to see patients until they turn 21, I am a “special case,” because I have spina bifida and an augmented bladder. He performed my bladder augmentation surgery– my most invasive and dangerous procedure to date– when I was 10, and I trust him with my life. 

Indeed, no one, save for my parents, would have known any of this, because, simply put, I haven’t talked about it. 

And why would I talk about it?

Since the holidays, I’ve been to numerous blogger events, celebrated birthdays, weekday happy hours, workshops, and the like.

My posts on Facebook have often been the trigger for playful, harmless jealousy. Friends often comment, wishing they had my life. From what I usually post on my Facebook profile, I can’t say that I blame them. By all accounts, I seem to lead a pretty fabulous life. 

I’ve got news for you, though.

Everyone omits on Facebook. 

Yep, that’s right. From the bitchiest posts to the statuses that are downright inspiring, we are all guilty of carefully vetting and considering the content that we post on our social media profiles. 

Why would anyone assume I am an exception? 

In fact, if anyone has good reason to filter her output, it’s me. 

Because my girlfriends don’t want to hear during our ladies’ night out about how my urine stinks of ammonia and looks as murky as swamp water.

Because, as bloggers, while we all over-share to an extent, no one wants to hear at a professional gathering of social media influencers how Miralax isn’t doing the trick for me just yet.

Because, God forbid I should choose the joyful family Christmas dinner in Puerto Rico as the venue for disclosing how I’ve totally slacked off on my neurosurgery stuff and am now desperate to schedule a follow-up with my neuro to find out the results of my MRI, which I had done before the holidays.

Because God forbid I be more human than people can actually bear. 

Unsurprisingly, the issues I just described above (and many more) are very common topics of discussion on many of the private online groups and forums I’m a part of that pertain to life with spina bifida.

You might find it odd, but I actually don’t share too much in these groups. Don’t get me wrong– I’m eternally grateful for the love and support many of these people show me and others with spina bifida. I’ve forged many great friendships with parents of children with SB, and with adults with SB, all over the world.

I guess that I don’t feel the need to share everything about the spina bifida part of my life with them. Heck, they majored in this, as did I!

But I want to share it with you. 

And I want to be able to share honestly and openly with you– without any of the following responses that I’m dreading right now, and that I always dread:

1. Pity. Please, absolutely NO “I’m sorry you have spina bifida” talk. It makes me feel as if you believe that living with spina bifida is pitiful and shameful. And trust me– I don’t need that. 

2. Discomfort, awkwardness, squeamishness. I’m sorry if I slip up during lunch and casually mention I have to go cath. Usually I say “pee,” but occasionally I will slip up and make some allusion to the fact that I use a plastic tube to urinate. Obviously, I overlooked the fact that you are not as used to this as I am, and any remark that you make along the lines of “ew” and the like will only make you come across as a jerk. Please, grow up and get over yourself. Call me when your pee is prettier than mine.

3. Holy talk. You know what I mean here. I consider myself to be a religious/spiritual person with my own faith and personal relationship with the Creator. And if you say you’ll pray for me, I’ll gladly accept your prayers, good vibes, etc. But please don’t attempt to make yourself feel better about my ailment by saying that “everything happens for a reason.” It’ll upset me, and will only serve to make me wonder why this “everything” doesn’t seem to be happening to you. 

Simply put– I don’t expect everyone in my life to relate to my struggles, anymore than you might expect me to relate to all of yours. If you can’t relate to the situation, that’s perfectly fine. I think admitting you can’t understand what it’s like, is actually the first step towards putting yourself in another person’s shoes.

The ugly truth about life is that permanent chronic conditions like spina bifida can’t be cured, anymore than you can bring your deceased loved one back from the dead or force the cast of F•R•I•E•N•D•S to do a reunion.

It’s just not going to happen like that.

We all go through difficult, challenging, brutal stuff. So from here on out, I promise to try to level with you. I’ll try to be honest.

Are you willing to try to listen?

 

“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.”   –Albert Camus 

 

Turning My Most Painful Memory Into Triumph

mmvs_fb_1A

“Yes, the past can hurt, but the way I see it, you either run from it, or learn from it.”
—Rafiki, “The Lion King”

School should have been one of the happiest periods of my life. Instead, it was the source of my deepest pain—even now as an adult. I remember the taunts and jeers in the cafeteria. ”Cripple!” “Retard!” I remember trying to keep up with the others in P.E.

“Run, Forrest, run!”

In high school, I was accepted into the theatre magnet program at my school, a big deal for me. I was passionate about acting. For a while, I was part of a group of kids who were different—creative, outgoing, often misunderstood. We all got along. My ever-doting parents always welcomed all my classmates at my birthday parties. In fact, I became “known” for my house parties.

But by the time I was planning my Sweet 16 party my social life had taken a drastic downturn. I made a list of all the upperclassmen in the hopes that, by inviting them to my party, they’d accept me. A week later, no one would look me in the eye or talk to me.

I was devastated.

To read more, click here.