How Cerebral Palsy Has Made Me 'No Stranger to the Fight'

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To me, growing up with spastic cerebral palsy was like looking in a rear view mirror: things always seemed closer than they actually were. And to me, that was OK because as long as I got to where I needed to be at the end of the day, that was all that mattered. It wasn’t until after I graduated high school in 2001 that things shifted. I felt “stuck” and left behind all at once. But now at almost 35 years old, life has taught me a lot.

Pema Chodron, once said,“Nothing ever goes away until it has taught us what we need to know.” And while cerebral palsy was and is a life-long lesson in itself, having CP has taught me several lessons. One recurring one was is about true, genuine friendship. Like anything in life I go through cycles and changes, but when I care for someone, I give them all of me. It has been seven years now since I came to the painful conclusion that most people don’t deserve all of you. And that it is never about how many friends you have, but rather the true quality of those friends.

Anita Krizzan once said, “When it hurts, observe life — it’s trying to teach you something.” I firmly believe people will always show you who they really are. All you have to do is be willing to pay attention. The power of prayer is another lesson I have come to lean on.

I believe nothing forges your soul in hope like the power of prayer, and our prayers and pleas are being heard. My life motto has always been, “If God brings you to it, he will bring you through it.” And while I still do not know exactly why he brings my family and me through these trials, I know my family’s strength will be forged from a strong, bendable but not breakable faith. Not only in him, but in our family as a whole.

Which now brings me to the next lesson I have learned. The strength in a simple smile. We’ve all heard that a smile can turn someone’s day around, right? Well, despite being in immense pain every day, both my mother and my baby sister have taught me that the most beautiful thing a person can do is to smile through it all.

Right now my dad, the strong, gentle man all animals and children gravitate towards, is facing a battle that we as a family are still attempting to navigate. The world of cancer. Thus my new reason for crying a little harder, and praying so incredibly hard. If I could take down every star in the sky with my name on it that represents every single wish I have ever made in my 34 years on this earth as a “trade-off” for my dad and I not have to face this new battle, I would without question hand over every single wish. But since I can’t, I pray, cry and pray harder than the last time. I believe God and every single angel is guiding my dad and our family through this very real and at times surreal journey known as cancer.

My next lesson is that simple acts of kindness truly do mean the most. After my dad’s diagnosis, we made the choice as a family to let family and friends know what was going on via social media, and of course by phone. But the moment my family posted on social media about the new challenge we were facing, people we hadn’t spoken to or seen in years reached out immediately with well wishes, prayers, cards, offers to help, and so on. Which brings me to my next lesson.

Positive thoughts and positive vibes do make a tremendous difference. I saw this firsthand when my dad reconnected with my godfather after letting the years pile up between them. I have also seen my dad become more reflective when it comes to sharing memories of the past. He is more in tune with how precious memories can be. I truly believe that could be a hidden gift to someone who finds themselves battling the beast. I have never seen my father’s spirits shine brighter than when the outpouring of love and support began to flow in.

Music does so much more than heal and speak for us when words simply fail. My father, sister, and I have been major music enthusiasts — rock and metal in particular. Since my dad’s diagnosis, we have been taken that love for music to heart, posting a chemo countdown to Instagram, tagging songs and bands that have brought us strength. One of my father’s favorite songs is “How Do You Love?” by the rock band Shinedown. My personal favorite song by the band is called “Outcast” — in particular, one line of the song. “Don’t you know I broke the mold? Like a hammer to a landmine.”

In my experience, when you’re born into adversity from the beginning, you don’t know how not to survive, to fight. I think that’s what I love about music, and the connection it has with its fans. They’re there pulling for us when life throws us into the mosh pit. That was certainly the case with my dad’s newest journey. Several bands we love have reached out to my dad, sending their well wishes to him, including the lead singer of the metal band Hellyeah, Chad Grey. That message came the day after my dad’s first chemo treatment.

I have always been the type of person to always see the brighter side of every situation. My dad’s diagnosis and the chronic pain my mom, sister and I go through is no different. Yes, I have what I like to call “CP moments.” But I do not dwell in them because CP is something I will always have. You can’t cure it, but you can find ways to live with it. And while I understand there are some who hope for a cure someday, I do not. Instead, I hope for acceptance, more opportunities for growth and education that can be carried through into adulthood, rather than stopped the moment we turn 18.

That’s the biggest eye-opening lesson CP has taught me. Society tends to assume every disability comes in its own box and can fit in anywhere. That the limited resources they offer adults with any disability, not just CP, are good enough. We’re often not seen as productive members of society, just as a number on a chart.

I am 1 in 17 million people who have CP, and I am not my disability; my disability is only a part of me. Just like any able-bodied person who is fighting to overcome something in their lives, I am no stranger to the fight. The only difference is that I got the jump start to fight for myself and what I want earlier than most.

Lastly, please remember that a child with a disability will eventually become an adult with an disability. And we would like to be considered as such. As someone who still struggles to navigate the real world as an adult rather than a child, it brings a whole new meaning to the saying, “sink or swim.” Not every Nemo with a short fin will go on a great adventure to find his or her way home again — but not every clownfish should be counted out because they have a short fin. Or have people assume that if they sink to the bottom, they don’t deserve to be swimming with the rest.

We all have fought for something or someone we love. And that includes ourselves at one point or another. Every person with a disability, invisible or not, should be treated like the rest of society. Because after all, no one is a stranger to the fight.

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This Coach Turned His Experience With Disability Into His Life's Work

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A new documentary chronicles the life of a coach whose career path some might find unexpected.

Mike Stella was diagnosed with cerebral palsy as a child. His parents were told he would never walk or go to college, but he was determined to not just walk but push his body to be as strong as it could be. He ran and played football in high school and now holds a Master’s degree.

Stella didn’t always feel successful or welcomed in the fitness world — growing up, he was often cut from teams at school because of his disability. “I can’t tell you how many times I’ve failed” competing against able-bodied athletes, he says in the film (below). But then he was drawn to the weight room, a place where he could compete against himself. He wanted to understand his own body, but in the process he discovered his passion for coaching other athletes.

“Coach Stella,” a short film directed by C49 in partnership with TruEnergy sports drinks, shows Stella demonstrating his philosophy that “training begins but never ends” as he mentors young athletes. He discusses the importance of developing trust between coaches and athletes and how skills and qualities developed through training can carry over to other aspects of his students’ lives. He hopes the lessons he teaches will serve his athletes as they move forward to college and beyond.

Along with the rest of his exercise regimen, Stella regularly practices grasping items and writing with his right hand, which is affected by his disability. He believes his cerebral palsy helps him demonstrate that all athletes have challenges to overcome.

“They don’t necessarily have my disability, but everyone has a disability,” Stella says.

“Coach Stella” is free to watch on Vimeo. For more information on Mike Stella or to sign up for online or in-person coaching, visit Stella Strength.

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To the Lady Who Assumed I Was Comfortable With My Disability

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To the lady who assumed I was comfortable with having cerebral palsy and content in my own skin, I have this to say…

Living with my disability has given me a lot of ups and downs. Some days I am confident, other days I am angry, and then there are the days where I just cry, asking God “why me?” I haven’t quite mastered what it means to be a person with a physical disability, and I believe I never will because I am constantly discovering new things about myself. But what I can say for sure is that at some point, whether they have a disability or not, just about everyone has struggled with being comfortable in their own skin.

My willingness to open up about this came about after attending a conference focused on people with disabilities and employment, where I was honored to sit on the panel and discuss my experience. Afterward, I attended a tour of the facility where the conference took place. While waiting for the tour to start, I found myself in a conversation about people with disabilities being comfortable in our skin. A lady then proceeded to say to me, “I know you’re comfortable in your skin,” to which I replied, “Sometimes I am not.”

She seemed a bit taken aback by my response. It was as if she assumed I would be comfortable having my disability. She just looked at me with bright eyes and smiled, and then told me she has a daughter who has cerebral palsy.

I am slowly beginning to believe God created me this way for a reason, and it has taken me some time to become comfortable in my skin. If I am being honest, I’m not completely there. I have goals, dreams, and fears. My fears tend to surface a lot more than my goals or dreams. Like the fear of meeting new people, whether it be platonic or dating, and having to feel as if I should explain my disability each time. Or if I’m traveling, having to make sure the facility is wheelchair accessible. Or explaining to my 7 and 9-year-old cousins why sometimes people may stare at me and that they shouldn’t feel upset or sad about it. And I struggle with the fear of feeling vulnerable, sharing a part of myself for all to read and provide their opinions if they choose to do so — like I am doing now.

It takes time to get to a place of peace and understanding, of knowing that having a disability isn’t the end of the world. It just means you have to do things a bit differently. One of the things I’ve noticed recently that I haven’t seen in past years is that more people with disabilities are sharing their stories and getting out to see all that the world has to offer. There’s no longer as much of a disconnect, or feeling of not being accepted or having things accessible. Granted, nothing is perfect and we still have a ways to go, but I see progress being made.

So to the lady who assumed I was comfortable in my own skin, comfortable with having a disability, I say thank you — because you helped me to openly face something I have had difficulty with expressing out loud.

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The Warrior Who Defends Me in My Life With Cerebral Palsy

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I am 41 years old and I have moderate spastic diplegia cerebral palsy. Today, I want to raise awareness for all disabilities. I believe that awareness of all disabilities needs to be brought to today’s society. Let’s talk!

My story begins in 1976 as an adopted child whose parents were unfamiliar with my diagnosis of CP at 11 months old.  Think about hearing the words, “Your daughter will never walk and will most likely be ‘confined to a wheelchair’ her entire life.” That was a harsh reality for my parents.  Sadly, there were family members who told my parents to give me back to the adoption agency and get a “normal” child.

My parents couldn’t possibly have been be prepared for the struggles that lay ahead. There were multiple surgeries, countless physical and occupational therapy sessions, and constant doctor appointments. Additionally, there were the costly schools and equipment I needed to maneuver through my challenges. I distinctly remember those years of tears and being pulled in a red wagon in the halls of the most prestigious children’s hospitals because I couldn’t walk. I definitely know my parents weren’t expecting this, but they persevered with love, compassion and determination!

Through their advocacy, they did everything they could to ensure that I had the best life possible. I am eternally grateful for them and everything they have done for me. Some of my most prominent memories were of my Dad and his ongoing support. He was my warrior! He was always there to encourage me, challenge me, and defend me. I distinctly recall as a child all the cousins playing together. No one ever said, “Oh well, Richelle can’t do that!”  When needed, my dad stepped in and explained that they all needed to adapt so I could participate. I always knew I was different, but I don’t remember being left out of any activities because my dad, my warrior, ensured I was always included.

Inclusion can be rough and often seen as an insurmountable challenge. Activities, such a birthday parties and going to the park, can be stressful for the parents of a child with a disability. As children, we often aren’t aware of how much our parents protect us and make decisions on our behalf. It isn’t until we are adults that we can fully appreciate their sacrifices and selflessness.

As a preteen to a young adult I was bullied, ridiculed and shunned.  It hurt and made me realize my differences in a more grown-up way. I managed to work through it all because I had my trusted warrior by my side. I also feel that my “movie star” smile helped me through some of those rough moments. I truly believe every experience shaped me into the person I am today. Am I different? Yes, and I embrace my differences. I turned my fear into a self-motivation tool for success.

Do people judge me? Every day. Although it’s none of my business what others think of me. I live my truth. I am a daughter, a friend, an advocate, and even a warrior myself because that’s who my dad taught me to be. The words “Never give up,” “Keep fighting,” and “You’ll thank me when you’re older” continue to inspire me each day. Truthfully, all this time he was my warrior, and I was his. We are a fearless, strong, and determined team. Now is the time to embrace who we are and work as a united front. Together we are stronger. We are all warriors.

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What I Would Tell My Younger Self With Cerebral Palsy, by Age

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Having CP has been a lifelong journey. As I look back, there are so many experiences because of it that have shaped my young life. In hindsight, it’s easy to say, “If only I could go back in time and tell my younger self this!” or, “If only I knew then what I know now!” Having cerebral palsy has given me the opportunity to live and learn in so many ways and at every age. If I could give the younger Annie pieces of advice, here’s what I would tell her: 

Age 4: You rock that butterfly brace, girly!

Age 6: Trust your mom and dad. Even when you’re scared in the doctor’s office or are frustrated by physical therapy. They love you so much and they will always have your best interest at heart. Be brave, kiddo.

Age 8: When your classmates ask questions, just remember they are being curious. You are allowed to share as much or as little about your leg as you want. Be kind no matter what.

Age 10: Keep dancing. Keep playing softball. Keep doing what you love.  Always remember that putting your whole heart into what you do is so much more important than how fast you can run or how well you can tap your feet!

Age 12: Phys. Ed is so overrated.

Age 13: Not everyone you meet will understand your story. Adults and children alike will be critical and small-minded. You’re allowed to cry it out. Don’t ever forget that your ability and determination is beautiful. These are the years that are making your skin a little thicker and your heart a little stronger!

Age 16:  Please don’t be so hard on yourself! You spend so much time wondering if your best is good enough. Spoiler alert: It is. Enjoy every minute of your time in the theater and doing what you love. Your happiness on the stage overpowers your limp in the best possible way.

Age 17:  In a few years, you will look back and understand how much this time of your life has shaped the person you are. Cerebral palsy is such an important part of your heart and soul and is nothing to be ashamed of. Your story will take you to some beautiful places and your dreams will come true. Stay strong. And please don’t forget how loved you are.

Age 18: By now you can start to see how your body is affected by spasticity and aging. It’s new and it’s frustrating. One day at a time, Annie. And if that’s too much, take it one hour at a time. Or 10 minutes at a time. Be patient with your body and soul. You got this.
Age 20: So, you had an iced coffee at 9 p.m. so you could finish studying for that midterm… and now you can’t fall asleep. Hint: this may be a good time to stretch.
Age 21: Don’t fear the future. CP, career, life; it will all work out. 
 
Age 22 (and beyond): Wherever your life takes you, remember that little girl with the butterfly brace. The girl who ran hard on the softball field even when the rest of her team ran faster. Remember the self-conscious teenager who learned so much about herself on the high school stage. Remember being in your college dorm on the days when your leg hurt so much that you’d rather stay in bed but pushed through and kept studying. Do it all for her. Follow your dreams and make yourself proud.

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Thanks to You, Cerebral Palsy

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Dear Cerebral Palsy,

Although you are and have always been a part of me, I’ve worked hard to make certain I don’t allow you to consume my life. If I am honest, it has been a rather difficult process. Let’s start from the beginning, though.

In the beginning, I was not sure what to think of you. I did not know where this journey with a disability would take me. I would not describe this feeling as distaste, but more of an uncertain path. I did not come to expect what I would learn about this world, even in my very first years. People can be cruel. I do not know the reasoning for this. Maybe people just do not understand what they cannot imagine dealing with.

Whatever the reason, I can say that my first taste of discrimination at the age of 7 would leave me frozen with fear and with an unfortunate understanding that this would not be an easy journey. I was first introduced to the pain this would inflict when my teacher referred to me as “an old lady” and constantly poked fun at my wheelchair in front of the entire class. I would leave school embarrassed and crying because I was absolutely and utterly humiliated.

My parents attended conference after conference with this woman to absolve my hurt. Unfortunately, nothing was done, even though my parents were extremely persistent. I am not going to say their efforts failed, but rather, it was an act of carelessness on the part of the school. If anything positive at all came from these instances, it would be that it prepared for me what was to come in terms of bullying and feeling like a burden to others.

It was far from over once I left elementary school. The bullying and teasing would continue into my high school years. The differences you presented me with were a big deal. To be completely honest, I can only chalk these feelings up to a lack of diversity training in and outside of the home.

You have caused me to feel emptiness and enter the darkest nooks of depression. I believe God knew what He was doing when He made me this way. I just didn’t understand and often asked myself why I was chosen to lead the rather challenging life of a disabled person. This left me feeling soulless and almost as if I was at the end of my rope. Nevertheless, the angel on my shoulder thankfully kept me headstrong and grounded.

My wonderful friends and family taught me that I was valued. It was through their never-ending encouragement that I came to terms with you. I decided I was going to live with you, and I was going to present myself with confidence and zeal. I was not going to let your involuntary movements and difficult challenges take over my life, no matter how hard you may try. I was going to no longer let the negative aspects of you consume my illuminated spirit!

I am happy to say that you have allowed me to carry this outgoing and positive attitude for many years. In fact, I am often commended for always smiling no matter what you are putting me through. I sometimes fake a smile because you can really push my buttons, but for the most part, I am an extremely happy and outgoing person.

Though, I cannot help but notice that our relationship has become rather “rocky” as of late. You are pushing me to my limits with chronic aches and pains. You make me scream and cry out of frustration. You wear me down with the spasticity. I know when you are angry with me because you sure do know how to put pressure on every muscle in my body! I want to fall over from exhaustion during the day, because you push me until I cannot take it anymore. You have caused me to rely on medicine to feel better as well. We visit the doctor’s office a lot more than we used to. However, also thanks to you, I no longer fear my general practitioner. In fact, I now love him because he gives me medicines to cope with your pain — so thank you for that.

Despite all of this, I love you. I love you because you make me who I am. I love you because you give me an individualistic and introspective view on life that I would not have otherwise. I love you because you give me an opportunity to teach people not only how to live with a challenge, but to do so confidently. You are a small gift in a huge and opportunistic world.

Love,

Karla
xoxo

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