Self-Love

How My Deadly Sickness Forced Me To Dream Unapologetically

On December 11, 2015 at 6pm, I graduated from the University of South Florida. Hours before, I languished on the backseat of my father’s car as he drove the four hours to Tampa. I doctored myself so I’d be well enough to make it across that stage. I had gone to the Sickle Cell clinic almost everyday for two weeks in hopes of avoiding hospitalization. I avoided the hospital, but the pain never quite subsided. So there I was in borderline severe pain feeling extremely nauseous, laid out in the backseat trying to stay hydrated to prevent the pain from worsening.

sicklecell

When the university’s president began her introductions, she shared the stories of some extraordinary circumstances under which graduates in attendance had overcome to be in the auditorium on that day. She calls my name. While applying for graduation, I included a part of my story in the application. I spoke about how I had been hospitalized two to three times every month in the last year and a half of trying to finish my degree. I shared that despite that, I won a scholarship and got to study Swahili in East Africa and the scholarship I received was a highly coveted $20,000 national scholarship. Most of my time at USF I maintained a 3.90 GPA. I won the Dr. Martin Luther King Jr. scholarship and a $5,000 scholarship from an organization in Miami.

What I didn’t share in my graduation application was that I was unable to complete my semester abroad in East Africa because I fell severely ill while overseas and had to be rushed back home to have emergency surgery. My lungs had filled up with liquid that somehow became jellied and the surgeon literally had to scrape it out. After the surgery, I had three tubes draining the remaining fluid from my chest. I had over twenty blood transfusions in the span of about three weeks. The muscles in my feet begin to atrophy because I was unable to walk. My fourth week in the hospital, my hemoglobin had dropped severely and I was again on the cusp of death. I needed a blood transfusion or I was going to die. There was no question about that. I refused the blood because I desperately wanted to go home, but my condition worsened quickly. That evening my mother called me in tears and begged me to take the blood. I told the nurse and within the hour they began setting up to prepare for the transfusion. When the nurse came back with the blood, I felt myself fading. The entire room seemed to be covered by clouds and unreal. The feeling was familiar to me because I knew I was on the verge of passing and I had experienced it before. I will always remember that night because it was the night of the presidential election and the nurse’s husband called after it was announced that Obama had won. I was discharged about a week or so after, but I returned soon and spent another two weeks there. When I got home again I was so depressed. I felt like I’d never smile again. I swore I’d never be happy again. I was always in pain. I was so uncomfortable. Trying to find a comfortable position to sleep in was impossible. And I was constantly exhausted.

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About a year later, I applied for re-entry and moved back to Tampa to finish my degree. I did alright for sometime, but I began to have severe pain in my hips. I took a trip to the Bahamas for my 25th birthday and the day after I got back, I asked my friend to take me to the hospital. I have since been suffering from aseptic necrosis, which is the death of bone tissue due to disruption of the blood supply. It was the most painful episode I’d ever had. Usually all my crisis are a 10 out of 10 on a pain scale, but this? I had never encountered before. The doctor ordered the standard dose of medication used to treat Sickle Cell pain crises and stood there in shock as he saw the nurse administer the pain medicine to no avail. I had literally been screaming in pain. These are the types of crisis that have been most frequent since then. This is what I attempted to ward off so I could walk across the stage. Even though I was in pain. Even though it took me seven years. Surgery. Hospitalizations. Blood transfusions. Avascular necrosis. Through it all I maintained above average grades, volunteered, did an internship, was active on campus, and in the community. I even started working on a thesis paper my mentor told me was that of a PhD level student.

That has been my dream for years. To be Dr. Alecia Belnavis. Professor of African American Studies. But sometimes as a disabled, poor Black first generation college graduate and immigrant it is hard to dream. Somedays I think about how hard it was for me to simply finish my Bachelors. I have been struggling trying to figure out–like any recent college graduate–what I want to do, but the added difficulty of having Sickle Cell is disheartening on my best days. My friends have been trying to convince me for a few years now to publish a book of my poetry. I have been apprehensive. Most of my writing is–as I’m sure anyone could imagine–dark. 

My work is dark. Painful. Brutally honest. Sometimes I wonder how I survived. How am I still here? My friend Jasmine Bailey from elementary school passed away a few years ago. She was the only other person I knew with Sickle Cell. We often looked around the hospital ward together pointing to the fact that we were always significantly older than the other patients. My uncle died from Sickle Cell in Jamaica at 26. I was convinced that I’d never make it to see this age. I am still baffled, because I don’t understand what I’m still doing here and what I am supposed to make of it. The sensation is quite inexplicable. Daunting. Terrifying.

sickle

However, I will continue to dream. To be happy. To enjoy this time in my life. I am eternally grateful to my friends and my parents for always giving me a reason to be here. I’ve spent the last few years trying focus on loving myself and find the things about life that keep me encouraged. I want to buy a home. I want to get that PhD. Last year I realized just how much I love traveling. I want to be an activist. I want to be a professor. I want to be an amazing writer and poet like the next Audre Lorde or Toni Morrison. I want to love and be loved deeply. I want to grow. I want to be spiritually connected. I want to be a photographer. I want to be a painter. I want to make enough beauty in my life to help me get through. I have spent a year and a half working on loving myself and accepting these hard truths about my life and what it means to live it freely, honestly, and deliberately.

Throughout the years I have had a number of severe episodes of depressions because of the constant pain and hospitalization. One night, I was really at my wits end. Sad. Frustrated. And tired. So tired. I happened to be watching television and it was a biography of Maya Angelou the subsequent episode was about Oprah. These women’s stories gave me strength and I dug deep to find the courage to survive and now to share my story in hopes of encouraging someone else. Anytime I’ve shared bits and pieces of my experiences, I am met with outpourings of love and it means the world to me. What I’ve shared is a fraction of what I have endured. People often tell me I look too nice to be sick. I laugh. Thinking you want me to be sick and look sick too? Never! My survival depends on me being deliberate about living and thriving. I must remind myself to be the rose that grew from concrete and the flower that blossoms with no sun. This year I intend to do nothing but dream.


alecia

“I found god in myself and I loved her; I loved her fiercely.”
– Ntozake Shange

 

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5 Comment

  1. Reply
    D
    July 29, 2016 at 5:26 am

    Hello there, what a great piece of writing. You are your own Shero, that’s epic. Thanks for sharing your story of courage, and I do hope you get to publish your poetry. Stay inspired.

  2. Reply
    Christina
    August 5, 2016 at 7:45 pm

    I’ve known you for so long, but every time you share I am surprised. How you handle it all, I don’t know. But you are beautiful. Your story is beautiful and strong. Keep sharing! You help me each time and I know you help others. And write that book Dr. Belnavis!

    1. Reply
      candicemccoy420
      August 6, 2016 at 3:53 pm

      I totally missed the last line lol sorry!

  3. Reply
    Neppy
    August 6, 2016 at 3:51 pm

    Yours is the kind of beauty and power that can only come through extreme adversity. You are a woman who has, and is, changing the world every moment you are here. How privileged we are to be (even a small) part of your journey. When we reflect on your everyday-struggle, your grace, your passion, your art, your beauty, and your words– it becomes impossible not to see that we are in the presence of greatness Dr. Belnavis. You are blazing a trail for so many people. Your presence here is paramount for our generation, and the next. Keep teaching teacher. Much Love, Light, and Healing

  4. Reply
    Jae
    August 9, 2016 at 10:20 pm

    Cool article! Very inspiring. I do have a question about you trip to Africa. Did you have any complications while flying? I’m going to Asia (and out of the country) for the first time. I am EXTREMELY nervous about flying because I have no idea how it will affect my scd. I have already been to the doctor and they have cleared me to go but informed me of the risks involved. I know I shouldn’t live in fear but right now it’s getting the better of me, to the point where I am considering canceling the trip. Any advice will be greatly appreciated.

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