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.

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.

 

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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. 

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.

 

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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.