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.
We want to hear your story. Become a Mighty contributor here.
Photo by contributor.