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What I Want Allies to Know on World Cerebral Palsy Day

This year, October 5, 2016 is World Cerebral Palsy Day: a day that brings awareness to the most common developmental disability in babies. Cerebral palsy affects 17 million people worldwide; that evens out to approximately one in every 323 babies diagnosed with this non-progressive neurological condition caused by brain damage in utero or shortly after birth.

I am the one in 323. I am a part of the 17 million people, who are not just young children, as we grow and age with this disability.

People have asked me what it is like for me to live with cerebral palsy. First, they should be aware that everyone who has CP is different, and our disability affects us in a variety of ways. For me personally, CP affects the left side of my body and not the right. My body is almost always at constant “war,” or a state of discontinuity with my brain. Because of the damage to its motor cortex, my brain is constantly firing signals to the muscles of the left side of my body, causing them to be tense and never truly relaxed. The medical term for this tension and rigidity is muscle spasticity.

Spastic cerebral palsy is the most common type of CP, and coincidentally the form I have. Most people with CP (myself included) exert about 3 times more energy (this multiple can vary depending on the activity) on daily tasks that people often take for granted or do not think about. Because of this, I live with chronic pain and fatigue in the left side of my body, causing me to overcompensate using my right side. I can walk, but I’ll be the first one to joke with you that my gait pattern is not always the prettiest. I receive comments often asking if I am hurt, usually when someone sees me at a bad (fatiguing) time of my day. I’d like people to know that I really do appreciate genuine concern, but I am used to the pain, so it is nothing new or bothersome to me.

The fine motor skills in my left hand and wrist are significantly weakened. It took me so much longer to learn how to accomplish seemingly easy (to others) tasks like tying shoes or buttoning clothes. I spent years in occupational therapy, but these activities are truthfully still difficult at times and I like to avoid them to save some energy. Because of CP, I never lost my Moro (startle) reflex that typically-developing babies lose at around 9 months of age. I am 21 years old, and my body will still tense up and squirm at unexpected loud noises or unforeseen touch. I choose to laugh at it now and let it figuratively roll off my back.

People sometimes ask me if I would cure my CP if I could. Of course, there is no cure, but if there was, I would politely decline the offer. Most people with CP (I cannot speak for all, of course), including myself, are accustomed to our lives the way they are. We adapt to our surroundings on a daily basis and know how to function on our own terms. I am used to the way my body works, and although you may feel pity towards someone like me, I am perfectly OK with my imperfect body.

I hope today is a day of reflection for not only those of us who live with cerebral palsy, but for everyone. Please reflect on the way you treat others, and carry out your actions with kindness, and not with malice or pity towards others.

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