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.
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.
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 anysituation. 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 whatwe 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.
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 willalwaysdefine 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.
*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 committedto it, because Iunderstandit.
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.
Hispanicize 2014 took place in Miami from April 1st through 4th, and this year, the organizers stepped it up by demonstrating that philanthropy is alive and well within the Latino community and beyond.
On March 31st, I attended Social Media for Social Good Training for Non-Profits Serving Latino & Multicultural Communities, a half-day, pre-conference event, sponsored by Florida Blue and open to professionals involved with nonprofit organizations.
The presenters were Alex de Carvalho, founder of Social Media Club of South Florida, as well as Regional Development Director at Constant Contact; Katherine Doble, publisher of Los Tweens and Teens and president of Siren Marketing; and Maricela Cueva, vice president of VPE PR.
The topics covered ranged from strategies for E-mail marketing to the most effective platforms and methods for engaging potential cause supporters using social media.
I personally found the training interesting and engaging, and it was packed with lots of resources for nonprofits and individuals alike.
For this cause blogger, one of the most awesome moments of the conference was witnessing Cuban bloguera Yoani Sánchez receive a Latinovator award for her courage and relentlessness in informing the global public on what is going on in Cuba.
The writer and activist has been arrested several times, even beaten, for speaking up.
I was honored and privileged to have the opportunity to meet her last year, when she came to Orlando to speak at my alma mater, Valencia College. After she was interviewed at the Latinovator Luncheon, I got to attend the press conference and ask her a question! What an amazing opportunity. I was thrilled.
I couldn’t believe that Yoani Sánchez remembered me from the Valencia event! I imagine she meets hundreds of new people every week.
Attending the Positive Impact Awards was yet another amazing opportunity to see social good up, close, and personal. It was also a wonderful time to pay tribute to many awesome Latinos who are making a huge difference in our communities– and in the world.
I’m very proud to know Hispanicize Founder & CEO Manny Ruiz, and call him mi hermano. Congrats, Manny, on being given the key to the city of Miami!
By far, one of the most emotional moments during the Positive Impact Awards was seeing Hispanicize’s own Founder & CEO, Manny Ruiz, be surprised onstage by being presented with the key to the city of Miami by none other than the Mayor of the City of Miami, Tomás P. Regalado.
I actually had tears in my eyes, watching Manny choke up as he thanked everyone for their support. 😉
Manny Ruiz gets emotional upon being awarded the key to the City of Miami. Love it!
Even early on in the evening, on the red carpet, I was able to say hello to a few familiar faces…including this one:
Oh, you know, just hanging out with my friend Edward James Olmos!
I was so thrilled that actor Edward James Olmos remembered me from last year, when I attended the premiere of “Filly Brown” during Hispanicize! Eeek!
But that wasn’t my only “geek-out” moment of the night. For reals. Yolanda Pagán, whose late husband Louis Pagán inspired the Positive Impact Awards, and I sort of improvised and tag-teamed that evening during the red carpet. It was a really sweet moment as I watched her glide gracefully from interview to interview and from photo op to photo op! Yoli and I have become very close friends ever since we met during Hispanicize last year, and I felt Blessed and honored to witness this shining moment for her.
Well, Yoli came over to me during the red carpet madness, and straight-up told me:
“Maria Hinojosa,” Yoli repeated. “She wants to meet you.”
“Why?” I muttered breathlessly.
“Are you seriously asking that question?” Yoli countered.
Well…yes I am! But, no matter. When veteran, award-winning journalist Maria Hinojosa asks to meet you, you ask when and where!
So, I dashed over to where Maria Hinojosa was being photographed and fawned over. Then, she notices me.
Then, she addresses me.
She said she really wanted to meet me, and that I was an amazing blogger or something like that, but, truth be told, as is the cruel irony in most situations that you should have been taping– I remember very little of what was actually said because of how shockedI was. Understandably.
But I dorecall the million-dollar-moment, as I was basking in my 30 seconds of glory, Yoli watching me the entire time with a huge grin on her face.
Manny walked over to us (to formally introduce me to Maria, I imagine) and puts his hand on my shoulder and says to Maria (I mean, are we on first-name-basis now!?):
“Laurita is one of the best bloggers in the country.” By this point, I’m fighting back the tears.
And then Maria totally says, pointedly, to Manny:
“I know! That’s why I wanted to meet her!”
By then, whether I was still breathing was questionable. I think I had a pulse, though, because my heart was racing.
Maria and me. New besties? Here’s hoping! 😉
George Torres, founder of the Positive Impact Awards, Yolanda “Yoli” Pagán, wife of Louis Pagán, and Manny Ruiz pay tribute to Louis’ legacy. (Doesn’t she look stunning?)
Some of the Positive Impact Awards honorees share their moment of triumph onstage.
I fear I’ve already made this post too long, but I have to share about the panel I spoke on, on Friday! My dear friend and hermano, George Torres, a.k.a., “Urban Jíbaro,” asked me to speak on a panel titled “Hispanic Social Media for Social Good: Corporate Best Practices.”
I have been fortunate to be a part of several dynamic panel discussions these past few years, and this one was no exception! Despite being the last day of the conference, and people showing up– *ahem*– at “Latino time” (there were parties every night!), I feel we had an amazing chemistry among our group, and we were able to engage with our audience members.
The best part was being able to tell my story, and hearing everyone else’s personal journeys through social good! I’ll be honest– I came away from this panel learning a lot!
With Yolanda “Yoli” Pagán, who is now one of BFFs! I can’t tell you how grateful I am for your support, encouragement, and many pep talks before and during Hispanicize! 😉
With my longtime amiga, Alsy Acevedo of Catholic Relief Services, Anadel Alberti of Lanugo, and Yoli. Thanks so much, ladies, for supporting me and attending my panel! 😉
Later that day, after I recovered my nerves from speaking, I ran into Matt Wallaert, a behavioral scientist who works with Bing. He wanted to talk to me and introduce me to a group of young students with ASPIRA of Florida that he brought to Hispanicize, so that I could encourage them. Needless to say, I was at a total loss as to what to say to these kids! I have no idea how to foster and nurture young minds; I don’t know what you’re supposed to say to encourage them!
Well, when I saw Matt and a young friend of his, Chantal, they told me that they had attended my panel and that it was great! Matt had walked in with his group of students to watch/hear us! I was so incredibly moved by their show of support, and I realized that, when it comes to the next generation, all you have to really do is be there for them.
The week of Hispanicize was both too long and too fast. There were so many things I would have liked to do but didn’t have the time or energy to do. There’s just so much! That’s why I’m dedicating several posts, here, on Espresso con Leche, and on my hypeorlando blog, to covering everything I can.
By far, the most inspiring and uplifting moments of Hispanicize this year were the ones related to social good. Of course, it feels great to give, and it also feels wonderful to connect with others who are passionate about philanthropy within the social media space.
The best part of using social media for social good is that “the buck doesn’t stop here.” The donation or Tweet that you make, the photo you instagram, the blog post you publish about a cause can have so many impressions and can be shared so many times. Social media knows no boundaries or limits. Social media exists so that we can push our stories out beyond the natural, physical scope of older media channels.
And this week, I got to connect and reconnect with so many others who feel passionate about doing just that!
A hearty shout-out to the following sponsors:
Florida Blue, who sponsored the Social Media for Social Good Training for Non-profits Serving Latino and Multicultural Communities training
3M, who sponsored the Positive Impact Awards, this year’s signature event, in addition to sponsoring and participating on our panel, Hispanic Social Media for Social Good: Corporate Best Practices.
Toyota Latino for being my sponsor during Hispanicize, and for inviting me to sit at their table during the Positive Impact Awards! I have so much more content to share about you guys, but for now I’ll say that you have truly demonstrated your commitment to social good in every initiative and program you design for consumers. Thanks for taking me under your wings! 😉
“You must be the change you wish to see in the world.”
Today is Giving Tuesday, a movement for social good that is taking social media outlets by storm.
Thousands and thousands of people are sharing ways in which we can allgive back to great causes.
I don’t wish to add to the cacophony of causes by asking you to donate to this or that. Instead, I want to give all of you— even those with limited funds some tips on how you can support a friend or loved one who has spina bifida, or who lives with someone who has spina bifida (caregivers need support, too!)
So, read on for some musts and must-nots.
1. Don’t exclude us from social gatherings.
I remember how painful it was growing up, and the teen years were just as awkward as my early years. It hurt me deeply when I found out some of my girlfriends were hanging out and choosing not to invite me. The reason? They thought I might bring my mom along. Although it wasn’t true at all, it still hurt.My so-called friends didn’t think I was independent enough to attend a social function on my own, without my parents at my side.
If you have a friend with spina bifida, ask them what hobbies or activities they enjoy. Invite him or her to your next outing. If you have any doubts as to what their capabilities or limitations are, ask,but never assume.
2. Ask us for help or advice when you need it.
Believe me.This can actually be one of the greatest gifts you will give someone with spina bifida. Many of us with spina bifida are so tired of being “helped” all the time, and many times people won’t approach us to ask a simple favor out of fear that we won’t be able to help, or we’re too “burdened” by our lives. That, if you ask me, is an even greater burden.
So, go ahead and ask! The worst possible thing we could say to you is “no.” 😉
You might even find that we have a lotto offer and give to others.
3. Don’t tell us about every medical studyyou’ve read about pertaining to spina bifida!
No, seriously. We don’t want to hear it. Especially if it involves the prevention of spina bifida, medical research is based on a lot of different variables, and while your intentions may be noble, mentioning something like this can sound like you’re trying to “fix us.” Most people with spina bifida go through countless surgeries and hospitalizations, and often have different therapies to learn to maximize their potential, physically. Many times, if there is a procedure we can benefit from, chances are it’s already making the rounds in online support forums for families with spina bifida!
4. Don’t tell us God will heal us, or that there’s a reason we have spina bifida.
I’m a deeply religious and spiritual person, and I have my firm beliefs. I personally do believe things happen for a reason, but if you’re saying this to me after I tell you about spina bifida, you’ll come off like a total jerk. Does that mean God chose for me to deal with spina bifida? Maybe. Then again, there are a lot of great things in my life that have come from having spina bifida, and also, a lot of great things that don’t have absolutely anythingto do with that.
Still, neverput us on pedestals because of having spina bifida. That’s just…creepy.
5. We’re not sheltered. You can talk to us about…anything.
I don’t know wherethis crazy misconception was born that people with spina bifida aren’t exposed to certain things– like sex, alcohol, rock n’ roll, the rise and fall of Communism, and Miley’s infamous twerkfest.
We’re human. We read the tabloids from time to time, usually in the bathroom, just like you do.
And we also like to party. Hey, you can’t expect us to sit around and watch C-SPAN all day, right? (Fun as it sounds.)
What’s more, many of us have graduated high school, or even college or grad school. We like to talk. And I love Google and Wikipedia! So, even if I don’t understand what you’re talking about, give me about 30 seconds with my phone to impress you. 😉
Oh, and we also have brag-worthy lives filled with riches and diamonds and yachts and filthy-rich-jetsetting, so make sure not to hog the entire conversation. 😉
Hopefully that sheds a little light on some basic things you can do to keep someone with spina bifida in your life. (Yes, we grow tired of being overlooked, just like you would!) The most important thing to remember is that our lives don’t revolve around having spina bifida.There are so many facets of our lives, and many of them are similar to yours.
“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.
Whenever I return from a conference, I suffer from Chronic Recap Deficit Syndrome (CRDS). Yep. That’s in addition to spina bifida!
What is CRDS? It is usually characterized by one or more of the following symptoms:
(1) Panic or anxiety when logging into my blog dashboard
(2) Feelings of inadequacy when reading other bloggers’ recap posts
(3) Frustration (maybe even cursing) while uploading photos
(4) General unease or distress at not being able to summarize events adequately
I’ll admit– here and now– that I live with CRDS. And while there is certainly no cure,I’ve come up with a way to make my life (and yours as the reader) easier: make a list. So, without further ado, here’s my list of the Top 12 Hispanicize 2013 Moments (in no particular order of preference)!
1. The Sherwin-Williams #SWpintura Downtown Miami Design District Tour
At the Grand Opening of a new Sherwin-Williams store in Miami! #SWpintura
Yes, I know I recapped this already, but I can’t help but mention again how awesome this tour of Miami was. We got to see the part of Miami most people don’t think of when they think of this beautifully diverse, energetic city. So at the risk of sounding repetitive– it rocked.
2. Dinner with #ToyotaLatino representatives, bloggers, and communicators in the automotive industry Javier Moreno has been a great friend since 2011. I was absolutely thrilled when he put his faith in me and asked me to be the official correspondent at Hispanicize for Toyota Latino!
To me, it was just an incredible honor to be invited to be a correspondent, so I hardly imagined what Toyota had waiting for me– a multi-course dinner at OLA Miami, one of the trendiest spots in Miami Beach! The restaurant is located inside Sanctuary Hotel, and in it, you can enjoy the Latin American flavors created by renowned Chef Horacio Rivadero.
Oh là là!
Clockwise from top left: Marlin tacos made a very tasty appetizer; Toyota pulled out all the stops by presenting us each with a goody bag; we also get to each take home a coaster; the Chocolate Cigar, very popular at OLA, was the perfect ending to a delicious, sophisticated meal; dinner kicked off with an assortment of tantalizing and upscale Latin appetizers.
Goodies!! Ah, yes, please note: the scarf I’m wearing is part of my “welcome gift” from Toyota Latino! #Spoiled 😉
My very dear friend, Javier Moreno, Assistant Manager of Corporate Communications at Toyota Motor North America, Inc. He’s the one who made this experience possible for me! Thank you sooo much! I owe you a few. 😉
The very first Latina blogger I ever met– and to this day, one of my absolute favorites! Jeannette Kaplun is a beloved friend and “big sister.”
Besides, the amazing food, drinks, and atmosphere at OLA, my favorite aspect of the evening was being able to engage in candid, casual, unscripted conversation with people I normally would not dine with!
I was completely taken by surprise when I found out I’d be sitting next to Jorge Bernal, Entertainment Anchor on “Al Rojo Vivo” on Telemundo, and host of “Tu Mañana LIVE!” on Sirius XM. I’ve been wanting to meet him for quite some time– and here he was, inches away from me! 😉
Sharing a special moment with Jorge Bernalof Telemundo’s “Al Rojo Vivo” during the Toyota dinner. Thanks, Toyota!
Over dinner, we were able to learn about some Toyota’s social initiatives. Toyota is currently focusing on growing programs in the following areas: education, environment,and safety. (To learn more about all of these programs, please visit the Toyota In Action blog.)
The bloggers and communicators were able to express our own ideas and opinions on a variety of topics, and basically outline what matters to us. The stories we shared ran the entire gamut of hilarious, moving, compelling, and informative.
There was definitely an underlying current at the dinner table– a desire to effect social change. I will always be grateful to my friends at Toyotafor making this all possible!
(From left to right: Javier Moreno, Álvaro Castillo, Heather López (seated), me (seated), Javier Mota, Jorge Bernal (seated), Jeannette Kaplun, and Janice Lusky-Greenspan. Photo courtesy of Jeannette Kaplun of Hispana Global.
There are more photos to come on Espresso con Leche, plus an interview with Javier Mota of “Autos 0-60” on Sirius XM Radio Channel 146! Thank you so much, Javier, for interviewing Javier Moreno and myself!
3. Attending a private screening of “Filly Brown” and chatting with the cast during an exclusive Q&A session, followed by an after-party at The Stage!
Yep. This actually happened.
And yep. He really is that awesome. What a classy, fun guy!
Earlier in the day, I had a *totally chance encounter* with Lou Diamond Phillips in the lobby! We weren’t even at the screening yet! Of course, I never miss an opportunity to talk to celebs about The Cause.
The stars of “Filly Brown” and the Director/Writer/Producer, Youssef Delara, held a Q&A session immediately following the film screening.
With Gina Rodríguez, star of “Filly Brown,” during the after-party at The Stage. She is super sweet– and crazy talented!
Lou Diamond Phillips tore it up with “Knock, Knock, Knockin’ on Heaven’s Door.” Oh, yes, he did!
4. The Adelante Movement
One of my absolute favorite moments was meeting longtime online friend DanPérez— blogger, filmmaker, philanthropist, and “all-around nice guy.” Words can’t express what finally meeting him meant to me! Love you, hermano!
I know many people will think the Adelante Movement is just for women, but I know at least several guys who were “man enough” to stick around for this spectacular experience! One of them is my very good longtime friend Dan Pérez, who I got to meet(finally!)for the first time during Hispanicize. That moment was priceless to me! Getting to share it with our mutual hermano, Juan Alanis of Juan of Words, made it all the more special.
Familia. I love these boys so much!
Clockwise from top right: With NHLI founder Maria Elena Toraño; with Rita Moreno of “West Side Story” fame; with Charo, the “Cuchi Cuchi” girl; Nely Galán interviews Charo onstage; with Nely Galán.
5. Hanging out with and interviewing Los Tweens!
What can I say about Los Tweens? Founders Cristy Clavijo-Kish and Katherine Dobleare doing such a fabulous job of raising kids who are at once socially conscious and aware of their own potential. They are now “paying it forward” with their work for Los Tweens, where they share advice, tips, and stories with other multicultural parents of children ages 7-12.
Of course, being raised by blogger parents, the youngsters want to get in on the fun, too! That’s why Cristy and Katherine have created My.LosTweens.com, a safe place where tweens can interact and share their own experiences, traditions, interests, etc.
Here’s a really cool video that I did with Maddy, Sophia, and Olivia!
Thanks so much, Los Tweens! I hope to someday host your Girl Scouts troop in Orlando.
Maddy, Olivia, Sophia, and Cristy (the twins’ mom) from Los Tweens. (Where’s Katherine?
6. Connecting with Sonia Velasquez.
Oftentimes, I’ll attend a conference, anticipating to run into a friend, and we’ll always miss each other, or only see each other once, in passing.
I metSonia Velasquez on Monday, when my family arrived in Miami, and she was the guest of honor during the Sherwin-Williams #SWpintura event. I feel blessed to say I saw her every day until I left on Sunday! We were able to have real, honest conversations, soul-to-soul. There are a lot of people I’ve known for several years. Few people actually talk to me on a soul level like Sonia did– within hours of us knowing each other.
Sonia Velasquez and me. This woman has a heart of gold. So Blessed to now call her a friend!
Her advocacy work for AIDS and domestic violence causes, in addition to her job as host of Extreme Makeover: Home Edition Latin America, make her one of the people I was most looking forward to meeting! And…it was just icing on the cake that she joined my “Blogs with a Cause” panel.”
I want to be just like Sonia when I grow up! 😉
Sonia and me by the pool, catching some rays of sunshine– just minutes before I caught a few too many!
7. Emilio Estefan.
I remember maybe about four or five years ago, being in Miami on vacation with Papi and Mami, taking one of those cliché boat tours where they point out all the mansions of the city’s hottest celebs.
We saw Emilio and Gloria Estefan’s house. I bet the extent of my thoughts was, “Must be nice.” 😉
And then, years later, this happened…
Emilio and me. Gloria was right– eventually the rhythm IS going to get you!
OMG. I’m in the Target #SeHablaMúsica Lounge and Emilio Estefan is hugging me. As Mami takes our picture, he says, “You’re small, just like Gloria.”
OMG. Emilio just drew a comparison between his wife and me. He’s comparing me to Gloria, the Gloria!
What a friendly, classy, awesome gentleman. I will never forget this moment!
8. The McDonald’s “Me Encanta” Yacht Party!
What happens on the boat, stays on the boat– and on Twitter, on Facebook, on Instagram, on Foursquare, on Tumblr– and if you hit the photo booths, they give you a copy to take home! 😉
The McDonald’s #MeEncanta Yacht Party for Bloggers and Journalists, celebrating the Chicken McWrap, was, hands-down, the most fun one can have on the water!
We were treated to drinks, hors d’oeuvres, the best party music, and a floating dance floor (you know, ’cause it’s a boat) for several hours!
9. Carlos Ponce
Let me say that again. Carlos. Ponce. Man, it felt good saying that! 😉
Right before Carlos took the stage to accept his Latinovator award and be interviewed onstage, my friends Vanessa Smith and Janice Lusky Greenspanintercepted him and I got to meet him!
I just handed Carlos Ponce my business card. Carlos has my card. Heck– he has my number. Call me, maybe? 😉
Okay, so I gave him my elevator pitch about The Cause. This was really when I was supposed to sing a few bars of one of his songs and persuade him to let me be a back-up singer for him!
10. The “Blogs with a Cause” panel.
There’s nothing I can say about the panel I moderated without practically bursting into tears. Um, not practically. Actually. Because organizing this session, coordinating with the girls, and actually connecting with them in person was one of the most spiritually enriching experiences of my life! I can honestly say I went to Miami barely knowing these women, and I left with four new best friends.
Denisse, Debbie, Teresa and Sonia– I owe you an overwhelming debt of gratitude for your commitment and your enthusiasm in joining the panel. When Manny asked me to “put together a panel” for Hispanicize, I thought it would be easier to master underwater basket-weaving rather than find a group of at least three people who not only were passionate about a cause, but were fluent in distributing their message across social platforms. Together, Manny and I foundfour.
As they each elaborated on their respective causes and initiatives, and as I asked them questions, I couldn’t help but be in humble awe at the magic that was unfolding. Here were four women from different corners of the U.S. with very different projects, coming together for a common purpose: to educate the public about very urgent, pressing issues in our diverse society.
We also got some wonderful questions from the audience. They went straight to the point– they each wanted to know how they, in turn, could effect change in the world using social media. We discussed how some of them are balancing their “day jobs” with their labor of love, and how we can make money while advocating for a worthy cause, too.
I think the best compliment we received after our panel was from people who friended us on Facebook immediately following our session! We were very grateful to meet people who wanted to connect with us right away.
What we need is a name for this group! Unfortunately, The A-Team, the Powerpuff Girls and Charlie’s Angels are all taken.
Those who attended the session enjoyed the wisdom of these four dynamos for about an hour. But the bond that was formed among the five of us will last a lifetime.
I love you ladies. ♥
11. Meeting Janice.
You know when you have one of those moments of clarity when you just met someone, and realize that you were meant to meet all along? I had one of those moments during Hispanicize, and it wasn’t when I met Carlos, Emilio, Edward, or any of those other celebrities.
It was when I met Janice Lusky Greenspanof PRecise Communications. To call her friendly, sisterly, or even motherly at times (because I definitely needed that!), all seems inadequate. Although I’ve attended plenty of conferences in the past, in different capacities, I had never been treated quite like therock starI felt like during Hispanicize.
Janice looked out for me on behalf of Toyota Latino, and was such a fabulous facilitator of opportunities. Whenever or wherever there was someone to meet, or an event or session I absolutely needed to attend, there was Janice, making sure I didn’t miss out. I feel incredibly humbled and honored to have connected with you on such a personal level. The mofongo is on me when you come visit me! 😉
12. Honorary Mention: The Sunburn
By now, most of my friends have seen on Facebook The Epic Sunburn that literally handicapped me from doing anything other than surfing the Internet in my pajamas for about four days after returning from Miami!
Vanessa Smith and I don’t always use the best judgment when we hang out together, and we spent a long time in direct sunlight on the pool deck after the conference was over.
Great times with one of my besties! It was totally worth it, hermana. 😉
Ouch. Consider this an unofficial PSA for protecting your skin against the sun!
Mercifully, as soon as I posted a photo of my badly-burned back and shoulders (although the arms and legs were burned, too), I immediately received comments from friends, with tips and homemade remedies I could use. Literally, all of these products lived in our kitchen!
Mami had just a little too much fun mixing a potato salad on my shoulders!
The Human Salad Bar. On my shoulders: orange blossom honey, apple cider vinegar, dijon mustard, redskin potato peels. Yum.
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. 😉
Good angels are fallible … they sin every day and fall from Heaven like flies.
Anatole France, The Revolt of the Angels
Sorry, but I couldn’t resist beginning a post about “sin” and “angels” with something like that! 😉
After two weeks of getting back into the swing of things, and getting the hang of my new job, it’s finally time to get down to business and talk about what really happened in Vegas. Sure, you know all about the fabulous hotel I stayed at, and the awesome team from Vitapath Genetics that made it all possible for me.
With Dr. Timothy Brei, developmental pediatrician and SBA's Medical Director. He has spina bifida too, and meeting him, a medical doctor with SB, was by far one of my proudest moments! :)
So, without further ado, here are some of the highlights from the sessions I attended to get informed. While I have dealt with a plethora of physical and physiological secondary conditions related to spina bifida throughout my life, I was particularly interested in listening to what the researchers had to say about the transition to adult-centered health care in people with spina bifida, as well as psychosocial outcomes in this population.
*Health Issues for Latinos with Spina Bifida
Mark A. Canfield, Ph.D., is the Co-Principal Investigator for the Texas Center of the National Birth Defects Prevention Study. He is also the manager of Birth Defects Epidemiology and Surveillance Branch at the Texas Department of State Health Services.
There are 50.4 million Hispanics in the U.S. By the year 2050, Latinos are expected to form 30 percent of the U.S. population.
Where you are born can influence whether or not you have a child with spina bifida.
The Texas Pregnancy Risk Assessment Monitoring System (PRAMS) was a survey that analyzed pregnancy outcomes for mother and child between 2002 and 2010 based on several variables, such as maternal smoking, the mother not taking a multivitamin daily, and maternal obesity.
Another study analyzed awareness and use of folic acid by moms who have had a neural tube defect-affected pregnancy before. Results showed that more white, English-speaking mothers used folic acid than Hispanic, English-speaking or Hispanic, Spanish-speaking moms did.
Latino parents of children with spina bifida tend to report less satisfaction as parents and they also perceive their kids as more vulnerable.
Parents born in either Mexico or Central America are more likely to have a child with spina bifida than their Hispanic, U.S.-born counterparts.
Dr. Canfield concluded that: relative to whites, Latinos are only at a “moderately elevated risk” of having a child with spina bifida; Latinos are at greater risk if one or both parents is foreign-born; Latinos are less likely to be exposed to smoke, one of the risk factors; they are less likely to take supplements; and they are more likely to be obese.
Morning view from the the 43rd floor of the Cosmopolitan Hotel, where I was staying!
*Family and Psychosocial Concepts and Concerns in Spina Bifida
Dr. Grayson Holmbeck stated that children with spina bifida that come from a low socioeconomic status have a higher risk of developing behavior problems and problems with social adjustments.
Girls with spina bifida are at high-risk for social difficulties and a negative physical self-perception.
In the development of independence and autonomy, boys with spina bifida tend to lag behind the girls.
Children with spina bifida tend to develop more effectively if they have many positive social experiences.
Between the ages of 8 and 13, kids with spina bifida tend to have a very limited understanding of hydrocephalus, of the purpose of their shunts, and how it works. However, they do tend to know exactly where their shunts are located.
In early adolescence, there tends to be a shift in responsibility for catheterization. Usually, by age 13, the child becomes fully responsible for self-cathing.
There tends to be a shared responsibility in the bowel management routine between parent and child in early adolescence.
The results of Dr. Holmbeck’s research indicate that factors associated with success as an adult with spina bifida include high socioeconomic status, a high level of intrinsic motivation, and less interference from the mother.
Families in the study sample with a child with spina bifida tended to be less cohesive, and the children with spina bifida were more passive in their interactions with the family.
The sample of adolescents without spina bifida who matured early demonstrated more family conflict than those without spina bifida.
One possible hypothesis that might explain why there seems to be less conflict is that families with a child with spina bifida tend to respond less to changes during puberty.
There is evidence that maternal overprotection negatively affects children with spina bifida.
Maternal criticism was predictive of depression symptoms in the sample of youth with spina bifida.
During the study, researchers asked to observe youth with spina bifida while interacting with a friend of their choice. The majority stated that they didn’t have good friends or they chose a sibling or cousin.
Social function varies in children with spina bifida. In many cases, when a child with spina bifida nominated a peer as “best friend,” that nomination wasn’t reciprocated.
Researchers conclude that it’s critical to study young people with spina bifida during adolescence. The psychological problems are just as important as the physiological ones.
Also, children with spina bifida with a low I.Q. tend to have more parental interference.
Attendees listen intently during one of the World Congress sessions.
*Medical Issues and Preventable Conditions Among Adults with Spina Bifida
Adults with spina bifida and urinary incontinence are .77 times less likely to be sexually active.
There is no distinction in satisfaction with life between men and women who are sexually active and those who aren’t.
The majority of adults with spina bifida without hydrocephalus in the study began dating at 18 years of age. In adults with spina bifida and hydrocephalus, the age at which they began dating was typically 21.
Only 38 percent of men and 54 percent of women with spina bifida had been adequately informed by their doctors about sexuality.
Doctors were advised during the presentation to be professional when discussing sexuality with their patients, and not to assume that the patient knows as much as they do.
Researchers concluded that there isn’t much research or information about young adults with spina bifida and sexuality.
This next part was by far the most harrowing portion of the educational sessions. In this part of the seminar, attendees learned just how high the death rate is among adults with spina bifida who are admitted to the hospital with one disease or injury and end up contracting another disease or obtaining another injury.
Several disease and conditions studied include urinary tract infections, complications related to surgery, pneumonia, and infections due to ulcers.
The vast majority of deaths analyzed in this study were due to sepsis.
In the 65+ group, the majority of deaths were due to stroke.
7.2 percent of the hospitalizations in the study were due to UTIs; about 2 percent were due to bacterial pneumonia.
The UPMC Wellness Center is dedicated to helping prevent these complications.
The speakers conclude that if we don’t take the initiative to prevent these complications, we should prepare ourselves for the reality that 1/3 of patients will be re-hospitalized and 1/3 of them will die.
Dr. Irene Dietz is a pediatrician specializing in developmental behavioral health and neurodevelopmental disabilities. She's awesome. :)
*Transition to Adult Health Care
Many adults with spina bifida reported that they want to take charge of their own health care.
Many adults with spina bifida say they “like” being the ones that deal with the health insurance companies.
Using peer mentors and greeters allow transitioning young adults to talk to other teens about their needs and concerns.
Feedback from teens indicates teens prefer when they can contact doctors directly themselves, instead of doctors talking directly with parents.
They appreciate having someone to talk to who has been through the transition process.
Transition is defined in part as the point at which the individual begins to manage their own care of the chronic condition.
Role negotiation with the parents over issues such as incontinence makes it a particularly stressful time for young adults.
The social implications of living with a “disability” and the potential for bowel or bladder accidents can make the transition period even more challenging.
Conclusions included: “Healthcare providers working with YASB transitioning to adulthood need to reinforce the importance of increasing self-efficacy in order to positively influence health competence. Future research should investigate the relationship between perceived health competency and self management.”
With Cindy Brownstein, SBA's President & CEO, and Christopher Vance, SBA's Director of Development and organizer of this event.
*Hal Pote Memorial Lecture (given in memory of the late Hal Pote, who founded the Spina Bifida Foundation in 1987 and passed away in 2007)
Father-son published author team, Scott T. Price and Pat Price, shared lessons about the innate goodness of human nature while traveling cross-country, interviewing everyday people for their book, Looking for Goodwill. These two were among the most inspiring people I met during World Congress. There doesn’t seem to be an ounce of negativity in them, and you can tell by listening to their stories that they consciously seek out the best in everyone they come across. Scott and Pat traveled almost an entire year, visiting each state, and searching for the best that America had to offer.
Scott and Pat shared anecdotes from their book about how they interviewed strangers at random about the good things they have done. Each stranger they came across was handed $10 and they asked him/her to do something “good” with it. The gentlemen also read aloud to us letters they have received so far from the strangers telling them what they did with the money. Their responses show that many of them made life-changing impacts on other strangers.
This father-son initiative to interview strangers across the country, and inspire them to do good for others, truly inspired me in a very “Pay It Forward” fashion. Pat and Scott are a remarkable example of how people both inside and outside of the spina bifida community are all capable of effecting positive change.
I truly hope my adventures in Las Vegas did more than simply create lasting memories for me. I hope this opportunity for me serves as yet another opportunity to educate people about spina bifida and maybe even give people within the spina bifida community a better insight of what exactly it is that we’re all fighting for.
I met so many amazing people who are equally committed to the spina bifida cause– meaning both prevention and quality of life. Certainly, these were all “angels,” each in their own way. I am forever grateful to each individual I came across during that week.
I cannot thank VitaPath Genetics enough for offering me this experience of a lifetime! If you’re not already signed up for the Spina Bifida Genetics Research Study, please do so, as either a mom of someone with spina bifida, or as a control group mom. (Adults with spina bifida– be sure to let your moms know about this!)