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.

A date with November.

Tonight, I saw her.

She paused… looking for a moment of peace.  Looking around she saw how leaves painted the ground, and how the gray branches reached into their winter poses.

Her breath was taken away by the sunset.

She’s the girl who wants to chase the sky.
 To grab the pieces and connect. She was in love with the sunbeams, clouds, moonlight, raindrops, and stars.

Night falls and frost begins to kiss the ground.

Hello November.

Amy Scott
Amy is on the great adventure of 40 and all that has come with it this year. From Atlantic City, NJ and raised in PA. She is venturing on life being unpredictable! She is one to find the positive. Adventurer and spontaneous travels are her thing. Fan of Alice in Wonderland, Will & Grace but first a mother. Writer. Photographer. One who is fierce, passionate and guilty of being a lover.

Embracing cerebral palsy

Living with cerebral palsy isn’t an easy task.  I often get asked, how do you live with such a hard condition?

The answer simple, you need to embrace your disability for
what it is. It is a daily part of how you live. Admittedly,  dealing with cerebral palsy as a child wasn’t easy, and it’s still not the easiest as a young woman when the world looks at you as a human being with a disability, you deal with a lot of stereotyping, discrimination and bullying.

How do I deal with them and how do I embrace my disability when some people may not see it as a beautiful thing or may not see it as something unique?

I just look in the mirror and say I am me, and nothing is going to change that and when people call me names or they don’t understand what cerebral palsy means I educate them to the best of my ability, and I say I’m proud of my disability in the way it forms me.

At first when I was younger, and I would go out in public with my mom, and people would be curious about my condition some people would point, and others would stare, and some people would just come up and say God bless you.

I hated it.

I wanted so badly to be normal like everyone else. As I got older, I realized that if I didn’t have my CP, then I wouldn’t be Tylia. I’ve decided to use my disability and my experience with it to educate people and inspire others. My hope is for others to embrace their disability regardless of if they have autism, ADHD, CP, etc.

You have to stop and embrace your disability, no matter what the outcome is

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.

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.

Advice from Meyer Wolfsheim

That name in the title might ring a bell. He is a character in F Scott Fitzgerald’s 1925 novel “The Great Gatsby”. Love it or hate it, the book is now standard curriculum in most American high schools.

Some are swept away by the romance, many are turned off by the callous heartlessness of characters who we want to be better, and even more are awed by the excesses of the 1920s. Others simply can’t stand the book – each has their own reason.

Do you remember Meyer Wolfsheim? He was the Mafia man who “fixed the 1919 World Series” and wore human molars on his tie and cufflinks. His most famous quote is a throwaway line from the end but it hits me like a punch in the gut every time I hear it.

“Let us learn to show our friendship for a man when he is alive and not wait until after he is dead.”

These words have been heavy on my mind lately. In the hours after the shooting in Las Vegas I frantically tried to get a hold of a friend who lives there. She was actually in Pennsylvania visiting the week prior but our schedules didn’t work out and I didn’t get to talk to her. I was frantic thinking that she might have been hurt or dead and I didn’t work hard enough to reconnect with her. Thank heavens I heard from her and she’s fine, but I couldn’t stop thinking about all the “What Ifs”.

I realized that I am ridiculously blessed with so many friends and family members and I don’t tell them enough how much I love them. I’m talking more than just a “Like” on Facebook or a quippy little text. Am I alone or have you too ever worried over something like this?

Like my GF in Las Vegas. She’s amazing. She works so hard and is so strong and funny. I admire her sense of humor. I love her zeal for travelling and Japan. I love her stories. We’ve been connected/disconnected/reconnected since I was 14. I value her so much and I don’t remember the last time I told her as such. We’re thousands of miles away but when we talk it’s like time and distance erase. She’s my sister from another mister.

And she’s not the only one. There’s my friend who I fight with over the title of “Worst Mother Ever.” My college spud who I’ve been playing Messenger tag with trying to make a date to get together. My work husband who bought me a bag of coffee supplies for when he sends a student down to my room with the big Batman coffee mug I bought him. My writer/fiber arts/songstress friend who I haven’t seen since August and that’s just a sin. I don’t tell these people enough how much I cherish them. How much I need their positivity and light in my life. A change needs to happen and it has to come from me. I don’t want to shuffle off this mortal coil (which isn’t going to be anytime soon, I hope) without letting my loved ones know the joy they bring me every damned day.

I want to take Meyer Wolfsheim’s advice and show them my friendship while we’re all here and not when it’s too late. I don’t know where I’m going to start; probably with a list and move on from there. Spreading love isn’t a chore, however. It will be an investment in affection. A polishing of the treasure in my life.

 

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.