Submission #1: Broken Genes, Healed Identity

NF2 doesn’t define who I am, but it shapes my experiences and sets limitations I must learn to thrive within. The only way I’m able to face this hard and often very physically painful life is hand in hand with Jesus Christ. However, this deeply ingrained faith raises difficult questions. As a Christian with a genetic disorder, I struggle to hold two seemingly opposing truths inside of me: I am fundamentally flawed, and I am made in the image of God.

 

As a type A, high-achieving, empath, I’ve always been drawn to pray for other people. I think Richard Foster said it best, “If we truly love people, we will desire for them far more than it is within our power to give them, and this leads us to prayer.” When coming to God on behalf of someone with a sickness manifesting in their body, I will often pray, “Lord, let their body come back into alignment with your original and perfect design for it.” Cancer is a mutation. Broken bones, aneurysms, and failed organs are all distortions of a creator God’s design.

 

While I find it very easy to pray with confidence for others and expect God to move, I struggle to have the same degree of faith when praying for myself. This is the effect of God’s silence to many, many pleas for healing. One day, I stepped out with trembling faith to pray this same prayer I’ve prayed over so many others over me and my genetic condition. When God answered, I found that I preferred His silence.

 

“Lord, let my body come into alignment with your original and perfect design for it.”

 

“It is.”

 

It felt like a throat punch.

 

The words of Psalm 139 flooded into my mind, “For you created my inmost being; you knit me together in my mother’s womb.” This scripture had once felt comforting. It now felt like a curse. My disease is genetic. When He knit my DNA together in my mother’s womb, He left out the protein that would stop tumors made of nerve cells from forming. He created me, and He created me this way.

 

His answer wasn’t what I wanted. I didn’t want to be designed this way. I did not see this work as “wonderful”. “All the days ordained for me were written in your book before one of them came to be....” He picked this painful path for me.

 

Theologically, I should be honored that the creator of the universe answered me at all; that the one who is infinite, eternal, and unchangeable is mindful of me. “I preferred your silence,” was my honest answer. Hypocritical, since I’d often been so frustrated with His silence. I could feel his presence as I battered Him with tearful, pained pleas. How many times had I screamed, “Take it from me!” and been met with silence?

 

Sometimes God just sits silently with us in our suffering for the same reason the dearest friend just holds you without offering advice or platitudes: no answer or truth will comfort you in the moment of your deepest pain. It isn’t indifference that makes Him silent; it’s empathy. He knows “why” won’t soothe, but His presence does. Peace you can’t explain. The ensuing calm never makes sense.

 

I know that having hearing loss has made me a better listener because I have to give people my full attention to understand them. I know that chronic pain has given me empathy for all forms of suffering. Suffering is the great equalizer; its causes are unique but its effects are universal. I know that my physical weakness has made me more intellectually developed, self-aware, and contemplative. I know that my outward tumors, these glaring imperfections, have kept me from focusing on small imperfections that eat away at so many women. I am objectively a kinder, more spiritual, and deeper person because of NF2.

 

When I’m facing yet another surgery, feeling isolated, or in incredible amounts of pain, I’d like to trade all my hard-won perspective to be healthy, able-bodied, and less limited. But could I, as I am now, actually stand who I would have become on an easier path? Someone who spends more time contemplating my next remark than listening, someone unable to empathize with suffering, someone impulsive, simultaneously vain and consumed by insecurity about negligible flaws. I can see this healthy, unlimited version of myself in all her shallowness, striving after pointless things.

 

While I don’t much care for non-genetic-divergent me, I wish there was an easier won version of who I’ve become. If given the choice, I would choose the vapid version of myself in exchange for being able to hear clearly, to live without debilitating shocks of nerve pain, and to erase the tumors pimpling my skin. But I don’t get to choose. God chose for me. He chose for me to become something better than what I am naturally.

 

When I think “made in the image of God”, I think beautiful, creative, intelligent, and capable. These things are true. But Jesus was also meek, made weak, and brought low. He suffered more than I ever would; I wasn’t being asked to bear anything God Himself wasn’t willing to bear. But while Jesus was fully man, He was also fully God, and He bore it without sin. I am 100% human, and therefore 100% fallible.

 

In the process of suffering, I’ve developed both character and insecurity, healthy and unhealthy coping mechanisms, and in my worst pain, I’ve treated the people who love me most with coldness, shortness, and rudeness. If this is how I treat the people who, even in their own flawed and often unhelpful ways, are trying to help me, it shows me how far I would fall short of saying, “Father forgive them for they know not what they do,” over the very ones who caused my suffering. But Jesus did.

 

People aren’t turned into saints just because we suffer. This implies that suffering is special. Suffering is normal. Because we aren’t saints, just flawed and broken people going through hard things, none of us (if honest) would choose suffering for the sake of “character development”, if offered the chance. However, the choice we are offered is this: how will you respond? And so, somewhere between faith and resignation, I utter the words, “Not my will but yours be done.”

 

Being made in the image of God doesn’t look how I hoped, but removing God from the equation is no comfort. In a world without God, I am a failure in the evolutionary process. A blight on the gene pool that should (and will) naturally self-eliminate. A world without God, even a God who doesn’t answer me how I’d like, is worse. With God, I am a beloved daughter both made in His image and being made into His image as I am crucified along with Christ. I am what the world would call weak, but He uses the weak things of this world to confound the strong. I’ve asked for healing, and He answered; He healed my identity.

 

While I’d prefer that He take NF2 from me, I will instead give it back to Him to use as He will. Honoring Him not just as my savior, but as my Lord, I ask, “God, metamorphosize me and mobilize me to love others the way you love, with empathy.”

 

By Corrinn