“There is no way to describe the pain – sometimes I want to cut off the body part that is hurting just to make it stop. I have sickle cell anemia, an inherited genetic blood disorder where the blood cells change shape. Normal blood cells look like full moons, but sickle cells look like half moons. That’s why it is called sickle cell. The average blood cell lives about 120 days, but sickle cells die in 10 to 20 days, leaving a shortage of blood cells. That’s the anemia part, where the body doesn’t get enough blood or oxygen, causing pain and fatigue. Sickle cell disease runs in my family. I have a unique form, but I am 34 and have lived longer than my mother, brother, and sister.
In addition to sickle cell, I have a bone disease that made me severely bow-legged as a child. I could barely walk and was often in a wheelchair. I was 11 when I had my first surgery. I still have the teddy bear my mama gave me before my surgery – she died soon after that. After the surgery, I had to walk all over again. When I finally healed and was back to normal, the disease returned. I had the surgeries and learned to walk once more.
I was living in Prichard with my dad. I was angry about my mother’s death and what was happening to me, and I fought a lot. Dad had been a mounted police officer and constable, and he moved us to the country for a better life and better schools. I had horses and more privilege. I did well in school, and my attitude improved. I was 17 and a senior in high school when my dad’s diabetes got worse and he started missing more and more work. I came home from school one day, and learned that we had 24 hours to vacate the premises. Dad had gotten behind on the rent and bills and lost everything. We slept a few nights in Dad’s truck; I didn’t understand how things got that bad.
We stayed with friends, family, and a pastor, and I often slept on the floor so Dad could have the bed. I was so close to graduating, and I was depressed about having to hide what was happening. Later I went to college at Bishop State while working two jobs. I became the breadwinner, and it was ripping my soul apart. I was serious about school and wanted to transfer to the University of South Alabama. I got my scholarships, grants, and housing together, then my dad asked if I was going to leave him. I couldn’t do that to him, so I put my life on hold to care for him. I was shy, overweight, insecure, and bullied a lot. I needed to process everything I felt, so I started writing about my life and found my voice. I wrote poems and a few creative nonfiction short stories – a few were published. My major was social work, but I changed to English.
When I finally went to South, I felt like an outsider. After my dad and I became homeless, my life spiraled, and I let go of everything he taught me; people told me I was a little ‘too hood.’ After a book discussion in an American novel class, a guy told me, ‘You don’t add anything to the class conversation, so you shouldn’t say anything.’ It was my first year at South, and that broke me. I was always considered intelligent, so his words made me feel like I was trash. It stayed with me and still hurts.
My father passed away during exams, and there was no one to depend on but myself. I lost weight because I didn’t have food. I didn’t know what to do, but I survived. I also realized it was time to get back to the person my father raised me to be. They say I dressed too ghetto, but I also won writing scholarships, spoke eloquently and became an English tutor. People couldn’t understand how I could do both and were quick to make false correlations. What about my dress says that I couldn’t be educated? I went to grad school and became a teacher’s assistant. I was a good TA, but it didn’t pay much. I worked multiple jobs, and my health started going down.
At the beginning of this year, I became a social worker. After all I had been through with illness, homelessness, and death, it is my dream job to help other kids going through the same thing so they feel less alone. I wasn’t feeling well when I went to a spring social worker conference in Birmingham. They wanted to admit me into the hospital, but I didn’t have time. I went home and back to work. About a month ago, doctors said I had a mass on my left lung. They are waiting on another CT scan and are being cautious because surgeries are tough with my blood issues; I could easily die. I was shocked about the possibility of cancer because my appointment was for pain and losing vision when my body goes into crisis.
I have been in the hospital a lot the past month, but I don’t have the luxury of staying there. I discharge myself and return to work, but then go back to the hospital a day later. I discharged myself this week, and there was an eviction letter when I got home. I talked with my landlord, and they are working with me. I am worried about my car being repossessed, because I won’t be able to go to work.
Over time, I have dealt with blindness, deafness, difficult blood transfusions, multiple infections, and many other complications. I have okay days, bad days, or worse days. I am so lucky to have friends who encourage me, but it is also hard that all of my family has passed away. When I am reminded that I have lived longer than the rest of my family, I also know I am a ticking time bomb. There is a new gene editing treatment at UAB, and I am waiting to hear back from that.
I am 34 and getting sicker as time goes on. It angers me because I keep making the right decisions and doing my best, but life keeps pushing me backwards. Sometimes I thought I wouldn’t make it out of the hospital. Would the people that I love know that I love them? Was I kind enough? Was I gentle enough? Was I a good person? Did they understand that I fought as hard as I could?
This disease is unfair, but I want people to know that I tried my best and gave life everything I had. I tried to help others, even when I had nothing to give.
Looking in the mirror, I see weakness, but I am beginning to realize that I am much stronger than I give myself credit for. I am still here working toward the future and making a difference. I want to look back and know I helped someone.”
(Here is the link to the GoFundMe set up to help James through this time and to keep his apartment and his car: https://www.gofundme.com/f/james-from-losing-everything?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer)
James’ father, Jimmie Craig. Photo courtesy of James Craig