Navigating My First Day of College With Cerebral Palsy

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Waking up on the first day of college at the end of January last year, my stomach was a complete ball of butterflies. I was rushing around my room pulling clothes out to put on, putting on makeup and getting my shoes. I had spent the past week getting my books and buying school supplies. The night before, I spent the evening putting binders, notebooks and textbooks in my backpack. I assembled my pencil case. The last thing I grabbed was my computer. I was ready… I thought.

I got to school and saw it was minimally paved from the snow storm a few days earlier. Knowing my balance was already altered by my heavy backpack, I took a deep breath and carefully took off for my first class of the day. I went to class, began to put my things away and realized that I could no longer get my tight left arm into the backpack strap. I didn’t have time to let my arm go in slowly. I had to meet with my professor about accommodations for the semester.

The rest of the day was filled with navigating the campus, my second class and meetings, all while lugging my 25-pound backpack on one shoulder. At the end of the day, my back and knees were killing me. Only the right side of my body had been supporting my backpack, while all the rest of my muscles had been trying to make sure I could walk without falling. Finally, I was home and could recover for the next day.

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The Importance of Teaching Your Children About Disability

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I have mild spastic diplegic cerebral palsy. This means it mostly affects my legs. When I was small I did not realize I was any different from anyone else. My family never treated me differently, and I knew I had CP. When I would get upset over things I could not do, my Nana would tell me she believes God gave everyone something that made them special, and CP was mine.

When I started school, I was in only mainstream classes. No one else had a disability of any kind, and suddenly CP was not what made me special because these kids did not understand. They made fun of the way I walk and complained about how slow I was. They thought my legs were broken because of my AFO braces. I was excluded a lot from recess; no one wanted to play with me because I couldn’t keep up.

Luckily I had a few friends who looked past all, and I am grateful that I found them. But I started to feel very alone and that no one else was like me, so I tried to blend in. This went on through fourth grade. The major event that changed everything was field day that year. I left school that day in tears. No kid wanted me on their team because they did not want to lose.

I felt so alone in this world, but after some thought I realized they didn’t understand and I hadn’t tried to help them understand. I had been trying to fit in and had never explained about my CP. I started opening up and speaking about why I was different. I made my Facebook page A Stairway to the Stars: Heaven’s Journey With CP shortly after that, and with the help of Charisse Hogan, Richelle Heath and many friends I met through Facebook I came to accept that it’s OK to be different.

I now use my page as well as #CPDreamTeam t-shirts, pageants and community events in an effort to help the world understand how important it is to teach your kids about difference and disability and to let other kids like me know they aren’t alone. I pray my efforts will in some way prevent some of them from going through the things I have gone through. I believe if we were all meant to be the same, God would have made us all the same — but how boring would that be? Never be afraid to be you, and always be willing to share your story, because you never know who it may help!

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Why I Go the Extra Mile in My Life With Cerebral Palsy

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As a child with cerebral palsy, it was questionable whether or not I would ever ride a regular two-wheel bike. At the age of 8 I was riding a regular bike with one training wheel. My physical and occupational therapist made it a goal to have me ride a two-wheel bike.

In my wildest dreams, I never thought I would take a bike ride like this…

I like to bike ride, but to me, riding in a big city has always seemed a bit overwhelming. In fact everything about tourist areas in big cities is overwhelming. I haven’t been to New York City, so therefore I am awarding San Francisco as the most overwhelming city I’ve ever visited. Fortunately, the bike lanes were very well marked. The traffic, people and hills were an adrenaline rush for me.  The prettiest thing I remember was looking across the way after we rode up a hill. The ocean, landscaping and city skyline were just fantastic.

Part of this journey was 1.7 miles going across the Golden Gate Bridge. Without hesitation, I knew this was going to be something that absolutely terrified me!

My cerebral palsy has caused vision issues and lack of depth perception. I’m unable to go down stairs if it’s an open staircase. Due to a prism I requested in my glasses, I’m sort of able to stand in one spot when I am up high in a wide open area. However, bridges, mountain cliffs and seats at the top of sports stadiums are scary for me. Last week I described these concerns to the eye doctor and she confirmed that it sounds like I have poor depth perception and will need an evaluation by an optometrist to see if I need vision therapy.

But my motto is the Eleanor Roosevelt quote “Do one thing every day that scares you.” Would the San Francisco traffic and hills alone have done the trick? Yes! This is probably why it is difficult for me and those who know me well to realize I actually do have a physical disability. My perseverance outweighs any physical challenges I may have.

The ride across the bridge was 1.7 miles to get across, and it felt longer. The hills to the bridge on the San Francisco side (south end) were two to five stories high by my estimate.  The wind and traffic on the bridge made the entire experience loud. The good news is there was a very large bike/walking lane with large railings on each side. I could see an opening at the bottom of the railing with ocean water underneath… I wasn’t a fan. So, I decided to look forward as much as possible and just keep pedaling. Going around each pillar was windy and had a few people standing around looking at the sights. I walked my bike around but did not stop or look over the edge. Looking back at the experience now, this may be my only regret.

After I passed the first pillar, I almost had tears in my eyes and my stomach was so nervous. I told my friend just to keep on going. I do remember looking forward and seeing the second pillar ahead of me, and that was very beautiful. By the time we had gotten around the second pillar, I began to smile! I stood with my bike close to the pillar and had my friend take a picture of me. It is kind of hard to tell I am on the Golden Gate Bridge, but I wasn’t in the mood to move.

By the time I got off the bridge, I had a smile on my face but still a very nervous stomach. I explained to my friend that I seriously did not want to travel across the bridge again to get back to the bike shop. We rode a little under three miles, mainly down hill through Sausalito. Then with hundreds of other tourists, we returned back to San Francisco on a ferry boat.

As I have shared my story with friends, I have realized how many people I have inspired to try something new that scares them.

Many people may think that because of my disability, I should be more cautious and take care of my needs. I feel that because of my disability and challenges, I should always go the extra mile to live the fullest life possible!

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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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