This Week’s Rundown – Getting Back into the Game of Life

I think I long ago made it clear what type of person I am. I’m the kind of person who cannot be doing just one thing. If I do only one thing, it will not get done at all. I’d rather have ten things to keep me busy, and I can almost guarantee that they’ll be finished! Yeah I know– go figure.

This is where I’m happiest– that midpoint between “I’m happy and doing what I love” and “I’m ready to pull my hair out.”

Maybe it’s a general problem with staying motivated and focused on what I have to do. I have ADHD; I was diagnosed while in college while struggling with a class. I’ve heard a lot about ADHD among people with spina bifida, but I think it’s very rarely discussed in detail.  

But more about that in a future post, hopefully. If I get around to it, which is questionable.  

Here’s a quick list of some of the things I’ve been doing lately: 

 

  • Spending a LOT of time with a new group formed by my Church 

 

  • Organized the second outing for the young adults with Spina Bifida in my community 

 

 

  • Currently battling another UTI before it gets really bad (you know, “E.R. bad”)

 

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As you can see, much of my life is so typical of being a person with Spina Bifida. I am fighting to have a healthy social life, as well as have a healthy lifestyle in other areas. It’s tough. It’s hard work. It’s painful sometimes. But it’s worth all the effort when I accomplish something. 

During our outing with the young adults, the topic of depression came up at one point. I think my life is testimony to the healing power of having a social life, a solid, faith-based support system, and a devoted family. I honestly don’t know how I would live without any of these, now that I have them. Without them, issues like having a UTI would become a really big deal– the focus of my life. But fortunately, I’ve been very blessed now that it’s only a tiny fraction of my existence, and I can improve upon this. 

And I now know that, when I’m hanging out with friends in a lively environment (we went to Downtown Disney Marketplace in Orlando), it ceases to be a group of people with spina bifida, and it becomes simply a group of people challenging the struggles– and having a great time in the process. 

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Dear AirTran Airlines: I Have Spina Bifida, and I Am Healthy

Guest post by Sarah Mueller

 

And now, from the depths of the uncertainty that has been the Holdin’ Out for a Hero blogging schedule comes, indeed, an unprecedented announcement. While I’ve often toyed with the idea of featuring guest bloggers on this site, no one has stood out to me as a writer the way this first contributor has. I have known Sarah Mueller online for only a few short months, but already I can think of no better person to usher in this new era of Holdin’ Out. 

From now on, I’d like to periodically feature writers whose voices echo different aspects of life with spina bifida. I will not be limiting this to only people with spina bifida, as I firmly believe we are a “community” and not just a group of individuals. 

If anyone is interested in contributing to Holdin’ Out for a Hero, please E-mail me at laurita.tellado@gmail.com so that we can discuss some ground rules for posting. 


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Sarah Mueller, 24, lives in Wauwatosa, Wisconsin and has spina bifida. She holds a B.A. in Justice, focusing on advocacy, grassroots programs, criminal justice and pre-law, and a Certificate in Peacebuilding. She is now pursuing her M.S. in Thanatology. Sarah plans to focus her thesis on the “inherent ability of people with disabilities to persevere, adapt and grieve effectively.” In late 2012, she hopes to launch a disability-related company. 

 

My name is Sarah Mueller, age 24, hailing from Wauwatosa, Wisconsin.  I most recently chose to fly with you on round-trip, non-stop flights #215 and #212, March 10th & 16th,  2011 from Milwaukee, Wisconsin to Naples, Florida.  On this particular excursion I traveled alongside my mom; our combined tickets totaling approximately $756.00.  Though my flight from Milwaukee to Naples was uneventful, the return flight was quite the opposite, and I would like for you to know all about it. 

 Firstly, I would like to share that I have traveled via the air around fifty or so times in my short life, and have never once experienced an issue in purchasing exit-row seating on any airplane, with any airline—that is, until this most recent trip.  Not only was there an issue with being seated in the spots which had been purchased ahead of time, but the inner structure of this particular AirTran airbus was compromised.  To top it all off, several airline personnel were insensitive, prejudiced and downright ignorant… all issues/encounters which I find to be unacceptable, and marring to the reputation of AirTran Airlines. 

 It is important now to point out that I was born with a physical disability called Spina Bifida Myelomeningocele.  Its presence is obvious, but very seldom does it hinder living out my life as say a person without a disability might. It is unique to every person, but in my case is minimally cumbersome in travel, save wheelchair airport assistance which is provided to and through larger airports and TSA check points.  I do not regularly use a cane or wheelchair, and walk completely unassisted in most activities (this is not to say these should be defining qualities or matter exclusively, but it is my specific reality which I am explaining).  I live alone, drive without hand controls, attend graduate school, and engage in many common twenty-something activities.  Having Spina Bifida Myelomeningocele has never stopped me from living, let alone flying, nor has it ever previously precluded me from having a normal flying experience. 

That being said, an hour before I was to even board my home-bound flight from Naples to Milwaukee, I could tell something was different this time around.  AirTran personnel were incessantly eyeing me up at the gate—until I was finally approached by one that asked me where my final destination was.  Upon my reply, she looked confused, jotted down some notes, and simply walked away.  

Just as I am about to board the flight, my name is called by a Customer Service Agent for AirTran by the name of William Vincent, who seems bewildered by my seating arrangement on the airplane.  After verifying that I had indeed requested wheelchair service at Mitchell Airport in Milwaukee and paid for an exit seat, Mr. Vincent stated he would have to move me to another spot.  “Why?” I asked.  Said through condemning laughter, Mr. Vincent retorted: “Because, to sit in those seats you have to actually be healthy”.  At first I was caught off guard—confused, even.  However, the understanding and humiliation quickly set in. Keenly aware I was immensely disenchanted and bemused by his reply, gazing downward, he stated he would ‘do what he could’ to keep me in my pre-purchased seat, but that stewardesses would likely ‘make me move’.  

 And make me move they did. Though standard protocol was followed and I had been asked before lift-off if I were willing and able to assist in the event of an emergency (to which I had proudly replied “yes”), I quickly came to learn that believing in yourself and knowing your own abilities was simply not good enough for AirTran. It all of a sudden became my job to convince personnel, the FAA and your airline that I would most certainly be both capable of assisting and of value in the event of a crisis.  

Being so unexpectedly and repeatedly dehumanized, I failed in a second attempt to stand up for myself.  In what I considered a crushing blow to my ego, my mom and I were moved up one row to cramped seating which did little other than exacerbate chronic soreness in my joints—which is why we have always preferred spacious, exit seating to begin with.  The couple which had previously sat in our new seats had now been moved to our more expensive and comfortable spot, which they of course did not have to pay extra for as we had.  

Desperately trying to ignore the psychological injury I felt over the move request and actively attempting to hide my flushed cheeks, I began to get ‘comfortable’ in my new seat.  Right away I noticed I was now next to a dilapidated window which was partially dangling off the inner wall of the plane.  Charming.  Disgust rapidly returned full-steam, at which point I decided to snap a cell phone picture of the window, and began to look around for other anomalies near my new seat.  Without much effort, I found another: across from where we would have otherwise been sitting in the opposite exit row, sat a heavier family of three. The father in particular caused quite a scene.  For the duration of the flight he coughed, hacked, spit, drooled, and even dripped snot all over himself. 

This was the accepted picture of health which had surpassed me in seating accommodation rights?  My frustration and humiliation grew.  Though it is not my desire or intent to judge others as I have so unfairly been, I was undoubtedly bemused as to how this family’s health and collective ability had somehow appeared better, or more promising than my own.    

Many individuals with disabilities already have a deeply-embedded, shattered self-view—understandably so, given all the longstanding prejudice and misconception in Western culture.  But I knew I had been wronged.  I had been unfairly judged, perceived and consequently ‘dealt with’ by you, AirTran Airlines, and I was not about to let it go.  There have been far too many instances of disrespect brought about by airlines in recent years in relation to disability-related ignorance, and I was not about to be unfortunate incident # ___ .  A free ticket is not what I am after, nor will it appease me, quell or even assuage my dissatisfaction with your airline.  An apology would be appreciated—but change is what is truly expected.  Must we continually enforce sensitivity training, or can we simply begin to learn and understand that even in disability, there is great ability 

It is not my suggestion that every individual be evaluated with a fine tooth comb and given a physical examination upon purchasing a ticket for travel, but only that when a person states they can and will do something—believe them. If you will not judge the inherent ability of three heavier-set individuals, why must you question mine? Am I somehow less human than your other customers? Does the FAA negatively delineate individuals with disabilities in their guidelines and rules? If so, I’d like to be an agent of change. 

 AirTran Airlines, I have Spina Bifida…and I am healthy. Let me help you.

 

 

 


 

 

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This Week’s Rundown (Okay, not just this week’s)

Yes, I know. It’s kind of difficult to name a blog post “This Week’s Rundown” when it actually includes updates for the span of two weeks, and not just one. Duly noted. 

But, I’m constantly needing to adjust my internal settings due to my new “non-schedule.” The fact of the matter is, it’s anybody’s guess where I am or what I am doing on any given day. Whether it’s writing for Marquis or LATISM, or attending an event as an opportunity to promote Holdin’ Out for a Hero, it’s pretty unpredictable! That being said– I love it. 

Here’s a quick review of some of the things I’ve been up to since I last blogged here: 

  • I’ve been busy planning and organizing events for young adults with spina bifida in the Central Florida area! This is an exciting project that I’ve wanted to undertake for months, and I’m having fun getting started. My hope is that more people will get involved, and that we can really connect based on our shared experiences. 
  • There are a few letters that I’d like to send out soon. I’ll keep you posted when I send them, or if I receive replies!
  • There are also several different opportunities for which I think I could apply on behalf of Holdin’ Out for a Hero. I’m not going to discuss these in detail right now (I’m very superstitious!), but I can say that I hope and pray that God will allow some of these opportunities to come to pass for us. 
  • I’m signed up for several upcoming events as a volunteer. As always, I enjoy these opportunities to help out with other causes, but I also would welcome the chance to speak to others about Holdin’ Out and my mission for spina bifida awareness. 
  • I’m enjoying being part of the Board of Directors for the Spina Bifida Association of Central Florida. Also, I’m now Tweeting for them, and you can follow all our updates!

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And here’s just a random addendum. I’ve recently become obsessed with an incredible story I only learned about a few weeks ago. While watching the Academy Awards, I saw that actor James Franco was up for an Oscar (he didn’t win) for his remarkable portrayal of a real person. Aron Ralston is an avid hiker, climber and overall adventure-seeker who was trapped in a canyon for six days in Moab, Utah. His arm being crushed by a boulder that came loose when he descended the canyon, he eventually had to resort to amputating his own arm in order to free himself. Danny Boyle’s film “127 Hours” is the fairly accurate portrayal of what occurred during those lonely, desolate days. 

Sure, it has virtually nothing to do with spina bifida, but long before I began writing this blog, I was fascinated by bizarre stories of survival and human triumph in the face of extreme adversity, so I thought it share this. If you haven’t seen the “Dateline NBC” special on this story with Tom Brokaw, I highly recommend watching this before seeing the film. I’m definitely going to keep Aron Ralston in my mind whenever I feel tempted to complain about my circumstances. 

So that, in a nutshell, is what I’ve been up to– living life and searching for inspiration. I hope that your search for inspiration is successful, as well! 

 

–Love, 

Laura 

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This Week’s Rundown: Omnipresence Would Be Awesome!

If there is one universal truth that I’ve learned in the past, say, two years or so, it’s that human beings are only meant to take on so much. Granted, I don’t think anyone uses their potential to the max, but nowadays it seems that, in a fast-paced world where tasks are expected to be completed faster, and sent sooner, people are expected to be operating on all eight cylinders. 

That is precisely what I think is happening to me. Don’t worry, no one else is necessarily doing this to me; I’m trying to motivate myself to take on more challenging tasks, especially with promoting the spina bifida cause. 

This past weekend, I was able to attend different events at which I both helped out and generated awareness of spina bifida. Here are the Cliff’s Notes: 

 

  • Mami and I volunteered to help set up for United Cerebral Palsy’s annual gala, An Evening at the Palace. The list of regular attendees includes actress Cheryl Hines, who co-hosted the gala on Saturday. While poring over lists of volunteers as they checked in, I shared my mission with the other volunteers I worked with. UCP serves many children with spina bifida, so my words did not fall on deaf ears. 

 

  • Yesterday (Sunday), I attended the University of Central Florida’s annual KnightWalk for Babies, benefiting the March of Dimes. Some of you may recall I was invited last year by the ladies of UCF’s March of Dimes chapter to attend and distribute flyers about Holdin’ Out for a Hero. These girls were gracious enough to invite me back this year! So, back to the main campus I went, along with Mami and my friend, Vionet-Edith, both of whom helped me set up and distribute information. I was able to connect with some truly wonderful people who seemed genuinely interested in the cause! 

 

  • On Sunday afternoon, after spending a few hours at the Walk, I dashed over to a local hospital for the SBACFL board meeting. This was our second board meeting since the new board was elected in late November, and I was really excited to share with them how I had been promoting awareness of spina bifida. I even wore my “Spina Bifida Association of Central Florida” shirt to the Walk! 

 

  • Before leaving the hospital upon the meeting’s adjournment, I was able to spend a few precious moments with someone who has been my friend on Facebook and in the blogosphere for a while, but whom I had never met in person. Amanda Kern gave birth this past week to a baby boy named Chance. He has spina bifida. A photographer as well as a professor of graphic design at Valencia Community College, Amanda has been documenting her pregnancy via both photography and prose on her blog. Amanda has a very sincere, no-holds-barred, yet heartfelt writing style, and even endured heavy criticism during her pregnancy while she struggled to make the decision that would be best for her family and for Chance. I continue to lift the Kern family up in prayer as they hold a collective breath during each hardship, and rejoice in unison at each triumph. 

 

Despite its title, “Holdin’ Out for a Hero” is not about “heroes” in the figurative sense of the word that movies and television shows love to portray– it’s about real, everyday people, famous or not, making a difference. It’s about parents that are faced with the tough dilemmas of raising their families and also raising a child with special needs. It’s about faith and hope. It’s about not only “holdin’ out for a hero,” but striving to be one every day. 

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And yes– sometimes, it’s about longing to be in two places or more at once, and coming to terms with the limits of our human abilities. Whoever can overcome that is already on their way to being a “real hero.” I have to work on that! But hey– the cool part about being human is that, while I have to make an effort to get to each destination, I get to take God with me wherever I go. And, I feel I take all of you with me, too. 

 

Love, 

Laurita

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The Redemption of ABC

If you’ve been reading this blog lately, you might start to feel dizzy. I know I certainly feel like I’ve been catapulted into a whirlwind lifestyle of attending different functions during the day (or sometimes evening), and then blogging into the wee hours of the morning.

Last night, ABC’s “What Would You Do?” aired its highly-anticipated special episode in which all the winning scenarios submitted for their “How Would You Do It?” were portrayed by actors and, as usual on the show, the reactions and actions of bystanders were caught on camera. 

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One of the contest winners, Amy Saffell, has spina bifida. Saffell, a wheelchair user, submitted a scenario in which she is in a public place on her own, and a complete stranger tries persistently to “help” her without cause. 

According to Saffell, this is an all-too-common occurrence in her daily life, and she relished the opportunity to educate others about people with ‘disabilities.’ (I’ll let you know if the day arrives when I’m comfortable with removing the quotation marks.) 

Today I posted a blog entry on the Marquis Healthcare site in response to the episode segment. I live Tweeted during the entire episode, remarking not only on that particular segment which was toward the end of the program, but also on the other scenarios featured, which portray some critical issues that involve our basic human rights. 

Did you watch last night’s program? What did you think? I’m giving you all the chance to sound off, not here, but on my blog post for Marquis! Please share your thoughts and let me know if you could relate to Amy’s scenario. 

Also, please check out another recent blog post for Marquis, in which I criticized ABC’s portrayal of people living with spina bifida in an evening newscast. 

All in all, the episode was deeply thought-provoking– and made it very difficult to keep from yelling at the T.V. 

 

Hope you’re all having a fabulous week! 

 

Love, 

Laurita 

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This Week’s Rundown

Given the recent change of my pace in my life, I’ve decided it would be cool to publish at least a weekly post with some brief highlights of my happenings and whereabouts that are cause-related or blogger-related. 

Here are a few things (okay, more than a few things!) that have been taking place:

 

  • I just published my third blog post on the Marquis Healthcare site yesterday. (Thanks, Alyson!) I addressed some issues that come up whenever I use my wheelchair in public. Feel free to check it out and comment on any thoughts you might have on the matter.

 

  • My third blog post on the Latinos in Social Media site was published this morning. (Gracias, Elianne!) Check out my entry, which includes some important information on how to prevent strokes and stay heart-healthy. Again, feel free to contribute to the discussion by leaving a comment. 

 

  • Today, my good friend Christian Henríquez featured me on his online radio program, One Voice Radio. This was my second time on the show (check out the first!), and I was a guest along with Elizabeth Fernández, a former financial analyst who will soon be breaking into the non-profit sector with her own organization. Together we discussed the importance of having a father in the family, and the escalating issues affecting young people who have grown up without a dad. Since our 30-minute discussion only scratched the surface on this critical issue, there will most likely be a part-two of this episode coming up soon. I’ll keep you posted on my Facebook page and Twitter account! 

 

  • Next week, on the Marquis Healthcare blog, I will be writing about this Tuesday night’s episode of ABC’s “What Would You Do?” in which scenarios are staged and hidden cameras are used to demonstrate what everyday, average people do when faced with moral or ethical dilemmas. Tuesday’s episode is said to be featuring a young woman with spina bifida, so I will definitely be watching closely and then turning to the Marquis blog to discuss my take on the segment. Make sure to tune in on Tuesday, then visit the Marquis blog to sound off! 

 

  • Tonight, I will be attending the Valencia Foundation’s annual Donor Celebration as a guest! I have never attended this event, which honors the people who have donated money to scholarship funds for Valencia Community College (my first alma mater!), and make it possible for so many students to pursue their educational goals. I’ve been asked to participate as a speaker in a Q & A session with the college president, Dr. Sandy Shugart, whom I’ve had the pleasure of meeting in the past. It should be a fun, rewarding evening! 

 

  • Last, but not least, I wanted to mention that my last post on Holdin’ Out, has received nearly 7,000 views! Thanks so much for making this happen, and keep reading and sharing the link to my blog with everyone. When all is said and done, the mission of Holdin’ Out for a Hero has always been and will always be to raise public awareness of spina bifida. I couldn’t possibly do this without your generous support. 

 

Stay tuned for next week’s updates! 

 

Love, 

Laurita 🙂

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It Gets Better for Us, Too

First things first, okay? I’m not residing under a rock, thank you for asking! I’m sorry that I haven’t been updating much lately. It’s not that a lot hasn’t been going on that’s been worth reporting– quite the contrary. Way too much has been going on in my life that I’ve hardly found the time to breathe properly and reflect on it all. 

It all started a few weeks ago, during a particularly frustrating time in my as-of-yet short blogging career. My site layout just hasn’t been working for me, and I lack the geeky skills to change it without worrying that I’ll unintentionally erase everything. 

Shortly after all this, I received an E-mail from a woman named Alyson Flynn. She introduced herself, and told me she works for a company called Marquis Healthcare. She then, without much further ado, proceeded to tell me they were interested in hiring me part-time as a health blogger for their Web site! 

And here I was, genuinely concerned that, given all the recent technical glitches my site has experienced, that people might lose interest in this blog– and, in effect, this cause. 

I immediately contacted Alyson, and shortly thereafter was interviewed via conference call for the position. This past week, after a few initial conversations with Alyson, I published my very first post on their site. 

The topic of this post, which was managing and preventing urinary tract infections, was unfortunately inspired by a real-life incident in my personal life. For about two weeks, I was battling a severe UTI that was characterized by persistent, sharp bladder cramps. I ended up going to the E.R. this past Monday, and the experience left me wondering what I could really do to prevent this from happening again. 

But, like the lives of most people with spina bifida and most people in general, not everything has been pain, suffering, and negativity. Around the same time that I was being hired by Marquis, my good friends at LATISM were making plans for me, too! A week ago, I wrote my debut post as a health blogger, as well. For the specific interests of the LATISM organization, I am blogging about health issues as they relate to the Latino population. I couldn’t be happier, writing about what I love for the people that I love. In the past seven months or so, LATISM has been a beacon of hope and support for me, from finding sponsorship for my ticket to the BlogHer conference in August, to sharing my blog with others, to engaging me fully in socially-relevant conversations in which I am continually challenged to keep up with all the savvy blogger and marketing veterans. 

Through it all, attending Church, interacting with my family and interacting with friends who share my generally optimistic view of the world has helped me to keep hope alive, even in the moments when I would expect to become depressed. To my surprise, I didn’t really have the opportunity to get depressed when I started having that really bad UTI, because all the while I was “venting” my feelings with others (not in a whiny, negative way, but trying to resolve the problem). 

And that afternoon that I spent in the E.R., I experienced so much love and support from different people. I realized there are plenty of people who care about me. 

And, what’s more, they still care about this cause. 

That’s what I believe encouraged me to write about what has been the “pink elephant in the room” not only for people with spina bifida, but for many other demographics, as well– clinical depression. Today, I published a post on the topic for “Salud Saturday” on the LATISM site. Although the discussion is geared more toward Latinos, most of the resources I provided, such as the National Institutes of Mental Health site, apply to a broad variety of people, not just Latinos. 

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Portrait of a depressed man by Vincent Van Gogh, 1880

I will say this. Depression continues to be a silent, but deadly, disease. I know, because I am a survivor of it. Although I never attempted to physically harm myself, the emotions that I’ve experienced while in a bout of depression are harmful enough.

So, it’s critical to realize, once you recognize the symptoms, that you can’t go it alone– you’re not meant to. I got help, and I hope that, if you’re reading this and you’ve been through some of the same things I’ve been through, you’ll do right by yourself and get help, too. Because your life is worth it. And because it does, in fact, get better

I never encourage people to share information that they are not comfortable with disclosing, but if you have a personal experience you would like to share about depression, please leave a comment on this post. We always assume there’s no one in the world who “gets us.” We’ll never really know until we break the silence. 

 

Love, 

Laurita 

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