I have Pemphigus Vulgaris, to go in details of all that pemphigus means will require another post. But for the meantime, just know that it is a very painful and misunderstood disease. Before the Re:Write conference, I had just lost my third job because of this disease. After months and months of trying to pull myself together and beat the pain, I still remember tearfully calling in to work saying, “I don’t think I’ll ever be back, but thank you for trying to wait on me.” When I hung up that day I sobbed and cried out to God from the depths of a darkness that had begun to swallow me since 6 years ago when I found out that my life would never be the same.
But I had tried, oh I had tried so hard to blend in with everyone else. I had to work ten times as hard to keep up with the average person because my body was always holding me back. Throughout college, I overachieved mentally on the books and studying because knowledge was the only thing my disease could not take from me.
I’ve lost jobs, countless chances to hang out with friends, and many days when I couldn’t even get out of bed I found myself alone with me, God, and my writing.
And so I wrote.
I poured my heart into poetry and finished my second novel. The pain had spread through my body to my fingers and I only stopped writing when my fingers cramped from the pain. It was in the midst of this darkness that various people started trying to give me their own advice for how I should live. “Just get a job you don’t like.” “You’re strong, so you’ll be okay.” “You’re the most positive person I know!”
Every time I tried to share my pain, my darkness, I got a clichéd answer as tears ran down my face. You see, my disease cannot be seen by others, it is an invisible monster that attacks me from the inside out. And eventually, I stopped trying to share at all. I sank inside of myself, angry at people for not being there, for not checking on me. Angry at God for my suffering and not being able to live a “normal” life. Angry at myself from all the times people told me if I just had a little more faith, God would have healed me by now.
But then, quiet hopes began to get whispered into my life again. Medical bills that I had no way of paying, getting paid off. God constantly providing for me, although I’ve had no income to speak of since July of 2014. Winning a scholarship to the Re:Write conference, being provided with the funds to go. Self-doubt flooded my mind and I thought, how can I survive in a car trip for 22 hours to get to Austin, Texas? What right do I have to even go there?
My family and my boyfriend encouraged me to go, and somehow I knew this would be another turning point in my life and I went. Joint pain and all, pemphigus and all, I survived the car trip and when I got to the conference, I was surrounded by so much love, hope, peace and joy. I found there were so many people like me, and every single person at that conference that I was able to listen to and share with, they saw me. They really saw me. They were me and I was them, from the published famous writers to the writers who were just starting out as I was.
I could speak openly of my pain, of my darkness, of my fears, of my dreams and hopes. And they would all listen patiently, and respond in kind. As I listened to the speakers, one by one, they addressed every single battle that I had been going through recently, because they had gone through the battle too. They understood. They had beat the darkness, and when it still came to torment them, they beat it again. I rediscovered my identity in Christ and now I know, that I am perfect just the way I am. I’m more grateful than ever for the constant support that I received from my parents, my boyfriend, and my sister who were there for me day in and day out over all the years of my battle. They too, were a wonderful gift from God to me.
I never needed to be like everyone else. My health was never a requirement to serve him. My pain had never gone unseen by him. Every day of my struggle, he was there with me. As I cried out in anger, he held me. When I cried myself to sleep from the pain, he was there. He had never left my side. And I returned to his side, fully and completely reborn. Understanding the complete depth of his love for me, just as I am.
I am at peace.
Because now I know, it’s okay to suffer. As Mary DeMuth, one of the speakers at Re:Write, said:
“Nothing significant in the kingdom of God ever happens unless death occurs. After death comes resurrection.”
I have had deaths of so many things in my life, my plans, what I thought was success, my dream of being super healthy and having no pain or signs of pemphigus. A steady pay check that I could depend on, when really, all I needed to depend on was Jesus. Miracle after miracle has happened, and he has shown me multiple times over my life that he will never fail me. So yes, for now, I am still in pain. I don’t know what will come next, but that’s okay.
I know that I am a writer, and so, I will write.