Crafted In Imperfection

My grace is sufficient for you, for my power is made perfect in weakness. ~1 Corinthians 12:9

Disruption. Abnormality. Unknowns. New normal. Sounds like the coronavirus pandemic, doesn’t it? And yet, that’s not what I’m referring to. Long before the pandemic, these terms described people like me: disabled people. The ones who have known and lived in a “new normal” not for a few months out of our lives, but for all of our lives.

And what typifies the life of someone with a disability? I have cerebral palsy. But I must confess I cannot answer the question. That is to say: I know my own life and the struggles that I experienced, but I cannot speak for the blind or deaf. I cannot speak for those who are autistic. I can’t even speak for most people with my own disability, because there are many different, more severe and more mild forms of cerebral palsy than I have. Therefore, I do not pretend to speak for anyone else, my only hope is that in shedding light on my own struggles, my story might embolden others to open up about theirs.

How Cerebral Palsy Physically Affects Me

When I was born, it was not immediately known that I had cerebral palsy. It would be as I began to do typical baby tasks, like grabbing a rattle, crawling, or hitting at things, that it was noticeable: I wasn’t using my right side so much. I fell a lot more than other babies too, because I couldn’t balance as well sitting up. So, I was taken to a doctor and scanned: he discovered I had a hole in the left side of my brain. For those of you who don’t know, the left hemisphere of the brain controls the right side of your body, and thus my right side is affected. I have spastic hemiplegia, a form of cerebral palsy that affects the muscles and coordination of one hemisphere of the body.

In my case, this meant that only the left side of my body is fully functional. I can write, move heavy objects, draw, you name it—but only with my left side. My right hemisphere is another story. I lack nerves for coordination in my right arm and leg, and I lack most of the strength of my left side, lacking the ability to carry even half of the weight that my left can do. To put this in perspective, I have had to work out for years to maintain strength and to try to ease the issues related to my right side. But my left and right are so uneven, I can lift a 35 lbs. dumbbell with my left arm if I haven’t worked out in a while, whereas my right side can barely take 15 lbs.—and it is usually ideal to max at 10 lbs. just starting out.

Nor can I respond automatically to things the way most people do. Many of us might take for granted moving a cup from one place to another. Simple task, right? No. It actually takes a significant amount of strength and coordination in your arms and hands. You (the proverbial you) might not think about it because many of us just do it as if it were nothing. But I can only do it with my left side. Lifting a cup with my right hand means I have to be very deliberate and careful, or else I might drop it. I lack wrist strength, and I might also spill the contents of the cup easily. An effect of cerebral palsy is that the messages from my brain to my limbs get confused. Whatever my left side does, my right tries to imitate, which also works the other way around. Thus, if I carry a thin plastic water bottle in my right hand, and my hand tries to imitate my left, the constant struggle of keeping steady means that I might crush the bottle in my hand.

For eleven years of my life, I could not walk correctly. In my right leg, I was used to walking entirely on my toes, and while I could walk with my foot flat on the ground, this required me to consciously think about what I was doing—so I didn’t usually walk that way. I tripped up pretty easily. When it became clear that I needed surgery, I was taken to Shiners’ Hospitals in Greenville, where it was discovered that the arch in my foot was collapsing, so I needed a new bone in my foot to maintain the arch. The only way to help me walk heel to toe was to cut and stretch my heel cord.

Me using a walker. This would’ve been about three weeks after I returned home.

Nine years after my surgery, my walking gait is not perfect. I still occasionally trip up, but I can walk heel to toe. Still, every so often I get a sharp pain in my arch, one that can last for as short as a few seconds or as long as a few minutes.

Lastly, the Moro reflex. Most people call it the startle reflex, and you’d probably think of it as that reflex that a baby’s limbs get for a short time after birth. That is true. But for someone with cerebral palsy, it doesn’t go away. For me, this meant that after birth, my right side still reacted to various loud or sudden noises. More rarely my right arm will just jolt randomly. This is a common trait of those affected by cerebral palsy.  

How Cerebral Palsy Affects My Life

Many of you might now be asking how cerebral palsy affects my life. As in, how does it affect me as a person? My daily interactions? How does it affect me mentally, emotionally, and spiritually?

While I have described my cerebral palsy in such stark terms, my disability is not obvious. If I didn’t tell you that I have cerebral palsy, you probably wouldn’t know. This is a blessing in some ways and a curse in others. Mine is not so obvious that people would constantly ask about it. And yet, it is noticeable. I am a very clumsy person and can be easily fatigued by physical exertion. Much of this is related to cerebral palsy.

These are the kinds of things that people notice. Being clumsy and tired. And to them, it seems normal. Especially for the fatigue, it’s easy for people to attribute it to the fact that I’m short and skinny. It’s the other way around, though. I’m actually small because of cerebral palsy: as I matured physically, the right side grew at a slower rate, in effect causing the rest of my body slow down with it.

Physical activity of any kind requires a lot more from me than is normally expected. Playing sports, going to the gym, running, and carrying large objects to and fro exhaust me greatly. But while that is ordinary for most people, it is also ordinary to build endurance. I burn out.

Recall the difference each arm has in weightlifting: My body contends with itself. The strength and speed of my left hemisphere is that of a normal human being, while that of my right doesn’t even equal half. So when I play a game with friends or exercise, I constantly grapple with the fact that I need to find a happy medium. Where that medium cannot be found, my left side overcompensates for my right, bearing weight or picking up speed that my right lacks. On top of that, I found out not too long ago that I am naturally right dominant, which means that my right side seeks to guide and control all the actions it lacks the ability to do. As you might imagine, this causes a great deal of physical exertion. Oftentimes the only way to get through a given task is to determine to do it, however hard it is or however slow I will be doing it.

 This is not to say that I don’t improve or haven’t, but after a period of time, it could be an hour, a day, or three weeks, I need a complete reset. Usually that means resting for a much longer period of time than the actual activity. It doesn’t just burn me out for that one thing either. It burns me out for every daily activity, and I usually wind up doing nothing.

 Most of the time my insecurities about cerebral palsy come out at these moments. It’s when I’m too weak to actually continue. People I know think that I am a strong person through it all. I don’t mean to brag, because my only point in saying that is to point out that I am not a strong person. I’ve had my fair share of breaking down, feeling like I can’t do it anymore. I try to soldier through, but I just can’t do it. I’ve asked the question “Why me?” too many times to count. Wondering why God made me this way, and especially earlier in life, wondering if He even cares. Or now that my faith is more firm, begging Him to give me the strength to keep going.

How The Gospel Relates To My Story

But that begs yet another question: is God in all of this? To which I would ask another question: How are disabilities thought of in Scripture? Interestingly, in the Jewish tradition before Christ, disabilities were considered punishment for sin, a part of what is known as retribution theology. This type of theology says that if something bad happens to you, you or someone related to you must have sinned. This is also the same type of theology that the Book of Job spends more time than any other biblical book refuting.

One of my favorite Scriptures, one which I often call the “disabled person’s Scripture,” deals with this very thing. This is the story from John in chapter 9:1-3. His disciples, informed by retribution theology, see a man born blind. They ask Jesus,

“Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not this man that sinned, or his parents, but that the works of God might be displayed in him.” [Emphasis added]

Now see what Jesus says here. No, the man did not sin. Nobody sinned to cause that. He was blind, he was disabled, to show God’s works. To glorify the God of Heaven. This man was blind that Jesus might mark him and redeem him for Himself, that others might also look at his miraculous story and believe in the Lord. This man would be used to bring others into eternal life.

And why don’t we go a little further? Jacob who is representative of all believers, is interestingly disabled by God Himself as a way of marking Jacob as His own. Genesis 32:24-29:

 And Jacob was left alone. And a man wrestled with him until the breaking of the day. When the man saw that he did not prevail against Jacob, he touched his hip socket, and Jacob’s hip was put out of joint as he wrestled with him. Then he said, “Let me go, for the day has broken.” But Jacob said, “I will not let you go unless you bless me.” And he said to him, “What is your name?” And he said, “Jacob.” Then he said, “Your name shall no longer be called Jacob, but Israel, for you have striven with God and with men, and have prevailed.” Then Jacob asked him, “Please tell me your name.” But he said, “Why is it that you ask my name?” And there he blessed him.” [Emphasis added]

See what God did there? He disabled Jacob, and then He blessed him. God had chosen Jacob for a higher calling, just as He did the blind man. He marked them. When I consider these Scriptures, this is how I view my cerebral palsy. God has marked me. He is saying, “Micah, I love you and have chosen you as an instrument to spread My message to others.” It would be foolish to think that this “imperfection” in my life was not already known by God. He knows it, He created me that way, and it is His way of saying to me that while I am a sinner in a broken world, He has marked me for His work. To those of my readers who might also be disabled, this is how I would challenge you to think of your own disabilities. God has marked you, calling you to Himself

Is it hard living with a disability? Oh yeah, I never denied that. To show how hard it is, think about what joy the blind man felt when he could finally see. Disabilities are hard. I have often struggle with mine and felt hindered by it. Sometimes I feel like I lack the strength for it. But that’s the point. I can’t be strong. Only God is. 1 Corinthians 12:9, But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” This was Paul, talking about a physical affliction literally given him by God. But Paul goes further: “Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.” Paul boasts in his weakness because it shows God’s strength.

In other words, I do not have to be strong. You do not have to be strong. It is God’s strength that covers us. This is a comforting fact. All the more comforting when we see how God works through the disabled to accomplish His mission. He has chosen each of us for a higher calling, in the same way that He calls all humanity. And that is the hope that I am guided by.

The Conclusion Of The Matter

It is not rare for me to ponder the fact that I have cerebral palsy. I look at people without disabilities and I think, Wow, what if that was me? Having lived with cerebral palsy my entire life, it’s hard to imagine life without it. And yet many times, I ask the question, Why me? And why indeed? What is God’s purpose in crafting me imperfectly? I could have been formed like anyone else. But that’s not His point. All human beings were born to glorify God. If God’s power is made perfect in weakness, then He makes me weak so that His power can be shown as perfect. In the same way, He marks the disabled community for Himself. While disabilities are difficult, it by no means suggests that we are alone. Rather, it proves the existence of a God preparing us to serve Him in His eternal glory.

Published by Micah Carnes

Just a man who loves God and wants people to know Him. The transformative power of Jesus Christ is truly wonderous to behold.

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