As the Benadryl dripped into my veins, euphoria set in. My pupils widened as warmth flowed through my body. I felt as though I was suspended in air … in time … as my neurologist’s words played over and over in my head: “I spoke with a retired specialist at Georgetown University regarding your case. I am concerned that you may not recover if you relapse. We must resume the Remicade infusions indefinitely.”
A relapse? I cannot relapse!
After losing my way, I have recreated myself, personally and professionally. Relapse? I have to be in New York next week for my first live interview at Sirius XM Satellite to promote my second novel, “The Darkest Shade of Blue.” This was not a part of my plan!
I held myself together until the doctor walked out of the room, ashamed for him to see me fall apart. Silently I prayed and asked God to order my steps, to send me a sign that this was His will and not my own. But I couldn’t help thinking: Why me, God? Why am I one of only three percent of individuals who have Neurosarcoidosis, the rarest form of Sarcoidosis?
Neurosarcoidosis is a chronic disease of the central nervous system, which encompasses the brain, spinal cord and optic nerves. How would I manage this for the rest of my life? I had been doing so well! That is, until I could no longer ignore the symptoms of a flareup that could lead to a relapse. A relapse could come in the form of a stroke, loss of vision or, ultimately, death. My chest tightened as I thought of how I tried to ignore the signs, pushing through the pain each day despite the fact that I could barely walk. It had become more and more difficult to hide that I was on the verge of a relapse.
My mother noticed immediately. I saw the worry on her face as she told me that I was stumbling and needed to rest. I tried to calm her fears by shaking it off as merely “overextending myself.” But It was more than that. When I could scarcely get out of bed that morning. she rushed me to the doctor’s office. My neurologist administered a high-dose, anti-inflammatory medication until my infusion could be approved. I was overcome with sadness as I thought of the long -term effects of indefinite infusions and the toll it would take on my body. I exhaled when I thought of how God had carried me thus far. Surely, His will is paramount over mine. This is nothing but God.
Within days, the anti-inflammatory medication lessened the pain. As a friend drove me to New York, I sat in the back seat and prayed before reviewing my talking points for my satellite radio appearance. I could not afford to stay overnight, but there I was, on my way to New York for two thirty-minute interviews. God had opened this door and there was no way I was not going to walk through it. I am in awe of how God is giving me more than what I could imagine. He has lined people up in my life that I never would have met on my own. The words of my eighth -grade teacher, who is still a mentor, echo in my head: Everyone cannot go where God is taking you. My eyes tear up as I ponder my sister’s question: Have you given yourself time to enjoy this moment?I realized that I had not, but that moment came as soon as I was being whisked through the halls of Sirius XM Satellite Radio in Manhattan.
My publicist had sent me an itinerary for the day that I’d only briefly scanned until I could give it my undivided attention. Only now did I realize that I was scheduled as a guest on “The Karen Hunter Show.” Karen Hunter is a Pulitzer Prize winning journalist, award-winning author and book publisher. I was even more blown away when I read the bio of my second host, Dr. LaJoyce Brookshire, a naturopathic doctor and pastor. She is also the author who novelized the classic African American film Soul Food, written by George Tillman Jr. I felt like a little girl as they embraced me with the warmth of any one of my aunties.
Still, I was anxious as they introduced me as an “out” LGBTQ author and advocate. There I was, on a national satellite radio show, talking about mylife. I felt obligated to reiterate that this was just my story. Often, the voices of queer people of color are stifled. But why shouldn’t queer people of color get to share our stories? We have hopes, dreams and fears just like everyone else. I took a deep breath and settled in. My answers flowed as they asked questions about living my authentic life as an out lesbian.
When faced with the question of why I am so vocal about my sexuality, I reaffirm that I am more than my sexuality. I am a child of God. I am a daughter, a mother, a grandmother. I am a survivor and overcomer of this rare disease. I am a veteran who proudly served my country … in silence. I refuse to be silent anymore. I am a little girl from Asbury Park, New Jersey, who became everything everyone said I could not become. I shudder at the label of “role model.” And yet, studies show that LGBTQ youth who have positive and reaffirming mentors are less likely to attempt suicide.
I don’t know what or who God is preparing me for, but I will continue to surrender to His will and not my own. Here I am, Lord.
Monika M. Pickett is an LBGTQ activist; and the author of PRETTY BOY BLUE and THE DARKEST SHADE OF BLUE. Please visit her at www.monikampickett.com