I don’t want a cure all I want is awareness

As a woman with cerebral palsy, people often ask me, “have you ever thought about what life would be like if you were just cured of cerebral palsy,” and, ” do you even want a cure for cerebral palsy?”

My answer always remains the same, “no.”

I just want more awareness of cerebral palsy because let’s be honest, I love the way my body is formed, and I love the way God made me.

Yes, I must admit there are days where I become frustrated with my cerebral palsy like anybody would.  I think the most frustrating part for me is, a 22-year-old woman, seeing all of my friends live on their own and be independent.

I can’t necessarily do things without having the obstacle in front of me first like for example I always dreamt of moving up to the mountains and living in Tennessee. The reality is, I cannot do that because I would always need 24-hour care. So I need to live close to my family so that dream could never become a reality without me having to go the extra mile.

I’m not saying that I hate my life, but a lot of the times I wish that people would become more aware of cerebral palsy and what it brings to the world and understand our daily lives from our point of views.

I wish for Cerebral Palsy awareness month that the President of the United States would light the white house green for all the 17 million people globally that have Cerebral Palsy.

I wish people would not only go green for St. Patrick day, but they would go green for the 31 days we have in March for all the 17 million people with Cerebral Palsy out there.

I wish people would become more educated on what Cerebral Palsy is and what it entails. Part of teaching about Cerebral Palsy hits home for me because my biological father was not in my life until I was 18. Years ago we reconnected, but I found my relationship with him to be very difficult because he doesn’t have an understanding of how my Cerebral Palsy came about. He always says, “Your legs broke when you were a baby that’s why you’re handicapped.”

At first, I would get irritated and upset that he didn’t even acknowledge the fact that my condition has a name. For the fact that my legs are not broken, I just have low muscle tone throughout my whole body.

But then I got to thinking you can’t help what somebody doesn’t know. The best thing you can do is educate and bring awareness to it.  So that way when you go to bed at night, you go to bed knowing that you did your best to make people aware of your daily life.

When it comes to finding a cure, I say let’s worry about that after we start to see more outreach about cerebral palsy awareness. To the point where we can walk into a store in March, and they have T-shirts that say, “cerebral palsy awareness,” and, “go green,” or they have positive commercials about it.

Instead of the sad ones that law firms put together for parents with children with cerebral palsy to sue the hospitals if they feel their child’s cerebral palsy was caused by neglect.

Yes to some extent it does bring cerebral palsy awareness, and it makes people aware, but it doesn’t make people aware of the positive things. It doesn’t make people aware of the greatness that we all can do as a world phenomenon. Together we are one.

Tylia Flores
Tylia Flores is a 22-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination.

To the One Who Says I’m Too Good at Goodbyes

As we were in the middle of the calculated dance of a heated argument, strategizing our premeditated words to hurt the other, you told me that all I know how to do is say goodbye. That I don’t really give others a second chance. You had mentioned several instances in my life in which you thought that I had clearly turned people away and said goodbye. You told me how you thought that was cruel and heartless.

I’m too good at goodbyes. 

You brought up a time when I was in high school. How a dear friend had hurt me very deeply, and how, two years after going our separate ways, that old friend had came up to me one day and apologized. You claimed that when that old friend apologized to me, I still couldn’t forgive her because I would rather just “cut people off” from my life. While you got most of the story correct, I did not tell that old friend that I did not forgive her; instead, I told her that I did forgive her but would need time to get over all of the hurt and lost trust.

After our intense exchange, your words haunted me. I thought about it more and more.

I’m too good at goodbyes.

Was I really the type of person that just walked away from everything? Was that really the only thing that I know how to do? Did I just let go of every relationship when I thought it wasn’t going to work?

As I thought about it and analyzed the various events from my life, I thought that, perhaps, there might be some truth to what you said. Looking at my life under a microscope, I had realized that there were several people that I did say goodbye too. But I think the most enlightening thing for me was that I realized, more than anything else,  that it was a defense mechanism.

Not to excuse the behavior, if I really truly am too good at goodbyes. I have seen a lot of heartbreak and sadness in my life. There have been many people that have left my life. From losing my aunt and my grandpa, and my sister walking away from my life. To the group of friends that turned on me in my first year of high school and told everyone that they “kicked me out of the group,” and the friends who turned against me after I stood up against a teacher in high school and they all began to bully me, to the several people that hurt me in college, to the (negatively) changing relationship with a very close relative and the numerous hurtful things that have been said against me. While I in no way want to just jump to saying that I was just an innocent victim in all of this, I just know that I have seen a lot of this hurt before, and each time I just stop the hurt before it gets to be too much.

In fact, just recently, a favorite artist of mine, Sam Smith, released a song that deals specifically with this topic. He talks about how he is “too good at goodbyes.” In his song, Smith talks about how he doesn’t get too close to people, even when they mean a lot to him, just in case they “leave [him] in the dirt.” And just like me — who had a person tell me that they thought that I was being cruel and heartless — Smith replies to the individual who thinks he’s being “heartless” and “cold” that he’s just “protecting [his] innocence” and “[his] soul.”

When I listened to Smith’s words, I realized how completely true they are. Just like Smith, I, too, want to be able to be close to people and have meaningful relationships, but am too hesitant about the potential hurt. When that hurt comes, I quickly try to dispel it before I ultimately become too hurt, so like Smith, it’ll lead to fewer tears and, perhaps, the “quicker [those] tears [will] dry.”

So if this person is right, if I am too good at goodbyes, then I don’t ever mean it to hurt the person; I think it’s just me trying to save myself from another heartbreak. Because while I put up a strong exterior, inside I am easily hurt. I think it’s just my heart kicking into a flight response because it doesn’t know if it can handle it; and if I remove myself from the situation sooner rather than later, it allows my heart to take care of damage control quickly.

And I realize that this is no way to live. I shouldn’t be afraid of getting too close to people just because I’m afraid of getting hurt, or letting go of a relationship too quickly because, again, I am afraid of getting hurt. It’s merely the defense mechanism my heart has adopted so it can prevent any hurt.

But I don’t want to be like this. And I know that I will have to try to find a way to reverse this natural response that my heart always turns to. So, to the one who says that I am too good at goodbyes, maybe you are right. Maybe it’s time to change.

Emily Veith
Emily has her bachelor's degree in Political Science, and has always believed in helping and serving others. She wants to make the world a better place, and aspires to be a politician someday to do just that. She is an old soul who loves Frank Sinatra, Dean Martin and Glenn Miller. When she isn't writing about imperative news- and political-related, she can be found attempting new recipes, playing her guitar or reading a good mystery book.

Turning Vulnerability Into Beauty

Our greatest triumphs arise out of our greatest struggles.  The struggles that you’ve faced throughout your lives, whether past or present, can be difficult to share, but choosing to open up about the challenges you’ve faced can become a defining moment, a moment of triumph.  My life journey has been marked with struggles, but one of the most profound moments in my life occurred because I chose to remain completely honest and open about one of the most challenging periods in my life.

I stood at the back of the classroom, my slender figure nearly obscuring the poem I had written.  “Come up front” said my professor, gently.  “Share what you’ve written.”  I was nervous, reluctant, afraid.  This poem was the most personal piece I had written in my life.  What would my class think?  Would everyone judge me for writing something that proved I wasn’t always happy?  I slowly removed my poem from the back wall and trudged to the front of the class.

If you were to tell me two years ago, when I was struggling to share a project with my counseling psychology class, that I’d now be openly sharing my life’s challenges with others, I don’t think I would have believed you.  Why not?

The simple answer is that I have a drive for perfection and I used to have an overwhelming desire to avoid exposing any vulnerability.  I have been a perfectionist for years.  I’m constantly striving to achieve, and no one would accuse me of setting my personal standards too low.  Two years ago, however, I realized one of the most detrimental consequences of perfectionism.

I fear showing weakness.  I fear opening up.  I fear letting others in.  I fear vulnerability.

For my counseling psychology class, everyone had to create and present some kind of expressive art project on an assigned topic.  I chose healing as my topic, because I wanted to push myself to speak on something vulnerable.  I drew on one of the most difficult experiences of my time in college as inspiration, and I vowed to listen to my professor, who told us not to censor ourselves.  As the words poured out of my soul and onto the paper, I felt a profound sense of freedom I had never experienced.  I gradually felt lighter and lighter, as if the weight of life was removed from my body.  The day I feared, however, loomed in my mind.  I would actually have to share this.  My thoughts, my feelings, my struggles. 

I longed to hold the struggles and sadness inside, to keep all of my problems ensconced in the serene, protective chambers of my heart.  But I strove to embrace the challenges I’ve faced, to grow as a person, to gain a new perspective on life.  So I shared.  The tremor in my voice dissipated as I realized that my class cared about my words.  They understood.  The class clapped after I finished the poem, and I realized then that I had succeeded in something that was very difficult for me.  Towards the end of class, one of my classmates told me my poem was beautiful.  I was surprised and touched by her words, but in that moment, a powerful thought struck me.  I have the power to turn vulnerability into beauty.

You’ve had times in your life when you’ve felt burdened by the weight of your struggles.  You’ve wondered if others will judge you for what you’ve been through.  However, when you open up and invite people into your world, you will forge powerful connections with them, connections that can never be severed. You will feel the lightness of freedom, the freedom to be yourself.  By embracing the vulnerable parts of your life, you’re embracing your story.  Your story is valuable, and it deserves to be shared.   Sharing your story provides you with the opportunity to encourage and inspire others.  Don’t be afraid to take down the walls you’ve built up, brick by brick.  It won’t happen overnight, and at times it will be difficult, but eventually, you’ll successfully embrace the challenges you’ve faced and gain a new perspective on life.  You’ll disclose personal, seemingly imperfect parts of your life to others, you’ll find understanding and unconditional acceptance in return, and you’ll learn about yourself throughout your life journey.  Most importantly, you’ll turn your vulnerability into beauty.  Always remember that you are powerful.  You have the power to turn vulnerability into beauty.

 

Kelly is an avid writer and mental health and disability advocate with a focus on personal growth. She is passionate about using her life experiences to help others. Her ultimate goal is to make a difference in the world -- no matter how small. When she is not writing or educating others about life with disability and mental illness, Kelly can be found listening to music and cuddling her cat.

Running on Empty

The last drops of hair spray in the bottle. The two teaspoons of milk but you need a tablespoon. The I don’t think I have enough gas to make it to the gas station so I’m just going to coast down the hill in neutral and cross my fingers that I make it oh please oh please oh please.

I’m feeling stretched thin; like the hairtie that’s barely any elastic but it’s the only tie you have so you twist it up anyway and pray your hair stays kind of thin. I’ve read the platitudes. “You can’t drink from an empty cup.” or “You have to secure your own oxygen mask before you can help others.” Those sound wonderful, but words won’t fulfill my responsibilities. Memes don’t make phone calls and quotes can’t bake cakes.

I feel guilty for complaining. My life is rich and full. However, it feels like everyone needed something this last month. I managed, but now I need some November Me Time. I’m an open wound that’s trying to heal but someone needs that band-aid so here you go. No really, take it, I’ll be fine. (But I’m not. I’m kind of sore right now.)

I’ve lived under the impression that I’m not allowed to be tired or frustrated or finished. I have a lot of toppers in my life – the kind of people who will one-up your statement as soon as you try to express something that’s been on your mind. This leads to me not sharing what’s really bothering me, or allowing myself to put down the load it feels like I’m carrying alone. I know I’m allowed to have and own my feelings; my surroundings make it burdensome.

Trust me, I know I’m not alone. I have a support system and they are wonderful. I have everything I need and I appreciate what I have. I’m not complaining about anything important even though we’re all allowed to sometimes. I know I don’t need to explain why the cookies pissed me off. (They were SO EXPENSIVE. Who wants to pay a dollar for a freakin cookie?) I know what I’m experiencing is a result of things that could be categorized in “first world problems”. Acknowledging this doesn’t make my cup any fuller or my fat pants stretch any farther.

There are plenty of things I know will help. I love Yoga, but I’m tired. I like to crochet, but after dinner all I want to do is sleep. I have a stack of books I’ve been itching to read, but as soon as I open one, my eyes start to shut. I know what I need to do, I just have to do it.

But it’s ok to complain sometimes. This was my chance and I took it. So often when someone just wants to get something off their chest, we are quick to offer advice or a fix. I don’t want advice. I just wanted to vent. I’m tired. I’ll be back on my feet soon because I have to be. Thanksgiving isn’t going to Thank itself and Christmas with all the extra pressure is right around the corner. This was an important reminder to myself to feel what you’re feeling in the moment, ride the wave, and let it go. I won’t be permanently tired. This too shall pass. I’ll be full up again in no time, and I’ll be extra aware of my response when someone needs me to listen. I’ll look for the clues that tell me they just wanted me to hold something for them for a little while, or if they need me to carry it for them.

But first, I’m going to take a nap.

Karen Padden
Karen, Queen of the Paddens and first of her name. Teacher, Baker, Petter of Cats, Multiple Sneezer and Crocheter of Wubbies. Believes in kindness, always.

My Face Rings A Bell

Remember getting the chickenpox when you were a kid? I vividly remember huge, quarter sized spots that were so itchy my mom put socks on my hands. I was six years old and out of school for a week. Frank, my brother, had them too, but his were milder. We each took up one end of the couch and watched WNEP’s afternoon movies – it was Beach Blanket Bingo week. In between features the local network ran gerbil races. Chickenpox seems like a rite of passage in kids; a topic of conversation even. A badge of honor.

I didn’t know at the time the chickenpox virus would stay dormant in my system, but a few weeks ago, it manifested itself as Shingles in my left ear. It’s common. It happens; but it’s not much fun. The fun started when the pain subsided and the Bell’s Palsy set in. The shingles paralyzed the nerve and the muscles temporarily froze. I had a friend with it some years ago so I knew it would be just a matter of time before it started working again. I didn’t panic. What could I do? My facial muscles were out of my control – literally.

After the shingles rash stopped being contagious, I returned to work with my half-working face. I wasn’t in pain and I was happy to be back with my students and friends. However, I looked like a female Harvey Dent. I was a walking tragedy/comedy mask. We started making a list of words I couldn’t say and I would practice saying them but end up cracking up laughing. Boneless Pizza. Zepplin. Brown Puppies. Flabbergasted. Imagine Mushmouth from Fat Albert. Or Popeye. Or Droopy Dog. I’m a pirate with a speech impediment. What is Roger Rabbit was your English Teacher? Exactly.

None of these details are worth the story. The extraordinary thing to me is how other people are reacting. The concern is lovely, but over and over again I’m hearing, “I can’t believe you’re still laughing at all this.” “You have such a good attitude.” “I would be miserable if I were you.”

I don’t find what I’m dealing with particularly noteworthy. It doesn’t require bravery, it requires patience. I’m not going to die, and I’m not in any danger. My friends who are battling cancer and fighting back with untraditional therapies? They’re the brave ones. I just look weird. Having to tape my eye shut at night is just awkward, but I’m not losing any sleep over it. I use a straw to drink and take small bites to eat, but I’m fine.

Why not have a good laugh? It’s supposed to be the best medicine, right? If I can spread a little more light around this world with my crooked smile then that’s a win in my book. For my kids, it’s also an important lesson in perspective. I’m not going to sweat the small stuff; this Bell’s Palsy is small stuff. I do an awesome Edward G. Robinson impression too, you should see it.

Karen Padden
Karen, Queen of the Paddens and first of her name. Teacher, Baker, Petter of Cats, Multiple Sneezer and Crocheter of Wubbies. Believes in kindness, always.