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.

© 2014, Laurita. All rights reserved.

14 thoughts on “I Don’t Always Have Spina Bifida

  1. Laurita, great post with a fabo picture. It’s also a reminder that we can either let our circumstances define us (or say to hell with them) and chart our own course. My circumstance was growing up gay in a small southern town, but being gay is such a small part of who I am. P.S. When are we having sangria?! :)

    • Mi amor!!! Gracias mil. It means the WORLD to me to have your love, support, and encouragement. You’re absolutely right. Sometimes others ONLY see our circumstances, or even WE only see them. I just know that when I met you and Edwin, it was like soul mates. Fireworks. Cheesy violin music. I think subconsciously, I KNEW I had just met two people who would understand me right off the bat.

      And it’s been absolutely true ever since.

      As for the sangria, love, anytime you want!!

      Te quiero mucho,

      Laurita

  2. Love the photos as they really shine on your funny side. I hear you re: this post. If we were words listed in the dictionary, the term, “spina bifida” would be the last aspect listed regarding our definition. Do I make sense? We grammar cops got to stick together always. Hugs!

    • Um, yeah!! When you talk “dictionaries” to me, you TOTALLY make sense!! I’m glad you “got” that. :)

      I guess, in a way, it’s up to US to determine how others will define us…by our actions and our own personalities.

      Love you, Carolyn!!

      –LTC 😉

  3. Very well written article. You are right in that SB does define those who have it and yet is not (and should not be) the ONLY thing that does.

  4. This was very well written, heartfelt, and refreshing. Both of my children have spina Bifida and there is only so much we can teach them and protect them from out in the world. I wish I knew how to keep that positivity going with my daughter. She is turning ten and things are getting harder with the diapers in school and cathing and whatnot. But what I’ve chosen to tell my children is that they are not victims. They are survivors and they are stronger than they will ever realize! Thank you for this!

    • Thank you SO MUCH, Mandy, for sharing your heart with me!! That truly encouraged me. Please, tell your children that I’ve been there…with the incontinence issues, the embarrassment of not feeling like you’re “potty trained” when you’re entering middle, even high school.

      But it gets better. I promise you that! And you’re absolutely an amazing mom for letting your kids know they are NOT victims. Maybe they have been targeted by a blunt, discriminatory society that only sees in black and white, but you’re right, they’re survivors.

      Plus, you know, that whole bit about nice guys finishing last is absolutely true.

      Hugs, and please feel free to stay in touch!

      Laurita :)

  5. Laurita, you’re a beautiful young lady making a positive difference in so many people’s lives. You share your gifts with family, friends, colleagues, and the world. Fabulous photos, amiga!

    • Thanks, mi hermana! Love you soooo much, and love that you see the “real me.” That’s so important to me, to be seen for who I am, not “what I have.”

      I also think it’s important that we each share our gifts with the world! Thanks so much for Blessing me!!

      Laurita :)

  6. Laurita, I came across your blog the other day and I have to say it’s great, and your writing is exceptional. Your article on how Spina Bifida does and does not define the individual who has it, is spot on. As a 44 year old, having Spina Bifida has made me the person that I am today. Looking forward to future posts on your blog. I’ve recently started to blog about my journey with Spina Bifida.
    http://iammorethanjustdamagedgoods.com/
    Best Regards
    Chad

  7. Hi Laurita,
    When our daughter Amelia becomes old enough to read and understand your blog I want her to know that she too can own her SB. Your confidence really shines through and shows us there is a lot bright days ahead even with all the unknowns of SB. I just don’t want to rush my baby girl growing up! She’ll be 4 in November. Thanks Andy, Melissa & Amelia

  8. Laurita……this is my very first time posting about my spina bifida. You and your most recent post struck a powerful cord in me. Overwhelmed with emotions at the moment in the realization of how relatable it is to me.

    I am an adult woman with spina bifida and significantly older than you.
    I have lived my entire life never allowing my disability to define me.

    Over last few months I have had more physical challenges than usual. Reading your article and writing to you is important. I am starting a new chapter in my life and exploring what is next.

    Helping others and utilizing all the knowledge and tools I have acquired is where I will begin. Thank you very much and I will continue. Alicia

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