Life with Cerebral Palsy: My Answers to Common Questions

The only disability

A couple weeks ago, as I was walking to class, I noticed a passerby eyeing me. It was not a concerning look, but a curious one. Then, he said: “If you don’t mind me asking, why do you walk that way?” I could tell he was quite careful in his word choice and behavior, rightfully so. I had no problem answering the question, but I fully understood his hesitation.

Most disabled people I know typically don’t have a problem answering those type of questions. In fact, they are welcomed and encouraged. I, for one, would rather have someone point blank ask about my disability, instead of staring at me with a glazed look of curiosity and with no answers to obvious questions they have. Today, I will answer some of the most common questions.

First and foremost, I was born with cerebral palsy. It is not a disease or an illness. It is most common among premature babies and twins. I was six weeks premature. At birth, I weighed two pounds and fit into the palm of my doctor’s hand. Truly, it is only with God’s strength that I am still alive today. Praise Him! No medical technology can detect a child will have CP. It happens within moments of birth, caused by a loss of oxygen and blood in the brain. Therefore, my brain has trouble fully connecting with my muscles, in order to operate efficiently.

As a result, my muscles are always tense and in pain. My disability will progressively get worse as I age. I have lived much of my life knowing that I will eventually be in a wheelchair, which somewhat excites me. I know God will use it for His glory. There are three types of CP. I have the most common—spastic. I am a hemiplegic spastic CP patient, which means only one side of body—the left—is fully affected. Only my left knee kicks in and only my left foot drags when I walk. It is different for everyone as to which side and how much is affected.

The spastic part also causes me to get scared quite easily at little things. However, that does not stop me from watching crime shows. I love the logic and suspense that comes with each episode, though I am sure my body would prefer otherwise. Sometimes, the spastic part of me is so strong that I will jump and freak out, even when someone warns me ahead of time.

Also, my muscles are tighter when the barometric pressure changes, thus why I know it is going to rain days before it is in the forecast. Nevertheless, the pain does not stop once the storm comes. The pain lasts throughout the storm as well, which can lead to some sleepless nights.

My disability is the main reason why I hate heights. There are many times I have trouble walking on flat ground; elevation does not need to be thrown into the mix. Growing up, I used to fall all the time. It embarrassed me and upset me.

Quite literally, I had to learn to walk twice. The first time I learned was the general, every day way any child learns how to walk. But, for me, I had to then learn again how to walk with my disability. There is a science behind walking with my disability, understanding my body and its signals. I had to read the signs and ways my body told me to slow down or to be more careful.

Many times, simply walking is a balancing act between my body and my mind. Thankfully, with time and practice through the years, I have not fallen as much. Using staircases is one of the scariest and most stressful moments for me. In those moments, I have little control of what my body may do. Therefore, I almost always have to use a railing or my husband for support.

As I have gotten older, I have grown to love my disability and God’s unique design for all creatures. Nevertheless, I have not always looked at my CP through Christ’s eyes. Stay tuned, next week, I will discuss the spiritual, emotional, and mental aspects of accepting who I am in Christ one step at a time. Literally.

Blessings,

Renata

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