I was 7 years old when I had my first attack. The accusations swarmed my head: “Stop pretending,” “you just want attention,” “you’re being over dramatic.” I head for my school’s office. My back hurts more than any pain I have ever experienced. My eyes are flooding, but I break through the tears and manage to ask to call home. My mom’s panic beamed through the phone. “Just try to relax, hold it in if you can.” My dad drives past our home and pulls the car up to the Detroit Medical Center’s emergency drop-off zone. There they got the nurses to assess my pain. “Can you rank your pain from one to 10? One is OK and 10 is bad.” “It’s an 11!” As if ambivalent to my response, they place an I.V. in me and take some blood from me. Then I was stuck waiting for the results.
Three hours later … The doctors brought proof of the pain they now believed I had because they saw it in my blood tests. “She has sickle cell anemia. Her hemoglobin is lower than average, and her white blood cell count is high. It’s a chronic disorder,” again acting as if I were not there. I feel I am no longer a 7-year-old girl but rather an object— like a computer my parents brought in for repair, only to find out I was permanently damaged. Then I am trapped.
So I walk around the hospital with the I.V. in my arm and push the machine that is connected to it. Several doctors consult with me. A psychologist interviews me to make sure I am “handling my chronic illness.” A physical therapist helps me move around after my pain becomes “manageable.” A physician checks in on me periodically and asks how my pain is. There are also several nurses on rotation. They come in, write their names for me, sometimes give me more medicine, but always move on to the next patient. It all feels like an assembly line. I am just another part in line for a repair that is only going to fix me temporarily.
After the doctors do all they can to make my pain “manageable,” I am finally released. Yet the sickle cell attacks come back sporadically. One minute I feel fine and the next I scream with pain. “Be strong,” my parents say, “so we don’t have to take you back to the hospital.” I tried with all my might to “hold it in” and avoid confinement. But the pain is stronger than I am. There is a red, angry wave pulsing through my body. It forces itself through the channels meant only for my blood without care or hesitation. It is a bully. It pushes itself through my veins, and wherever it passes, the pain follows.
The house shakes with my pain. It tears my family apart and wreaks havoc wherever I am. It is not biased. It does not discriminate. It does not care that I am “just a little Muslim girl from Nigeria,” as my parents would say. It does not care if I am well-mannered or if I misbehave. It does not care if I am at school, a friend’s house or at home. It frightens my parents and fills them with worry. Yet, no one can understand how I feel. They want me to stop expressing my pain. But I cannot stop. It is a force out of my control. I try to explain to them but I have lost my biggest means of communication.
I open my mouth to attempt to form words but the pain chokes them. My larynx is gone and in its place is a broken tape recorder. “My dearest daughter, please stop screaming, the neighbors will hear you and think something bad is happening.” I wonder why expressing my pain is such a “bad” thing. At school, I was given the chance to express myself through art. So I took a piece of cardboard and used a black sharpie to highlight its imperfections. My art teacher looked at it with confusion but did not question my creation. I looked at it with awe. I felt that I had just created something beautiful out of the cardboard’s pain and hoped I could do the same with my own.
I struggle to feel good when I am in pain, however. I try to cry and kick the pain out of me, but those actions do nothing. My parents tell me to “just pray,” and that “Allah does not give someone what they cannot handle.” But I feel that God has forsaken me; that my pain was His way of punishing me; that for some reason unknown to me, God was upset with me. I find it hard to pray in so much pain. Even when I did pray, the pain came back. Even while praying, the pain persisted. Even after praying, the pain did not disappear.
However, I managed to stay out of the hospital for a while; seven years, to be exact. But I was not pain free. I just stayed at home. I sometimes missed school because the pain was too much. My mom did her best to soothe me, but there was only so much she could do. I had to learn how to manage my pain. Over the years, it became more tolerable. I realized what I would have called an 11 back when I was 7 years old was now an eight. I got better at suppressing my pain and muting my screams. No one knew I had a “chronic disorder” unless I told them. I only conveyed that fact when I was in pain.
I was 14 years old the second time I was admitted to the hospital. I was doing so well in school. It was nearing the end of my freshmen year, and so far I had straight A’s. I suppose the stress of finals was getting to me. The doctors told me stress could cause “sickle cell attacks.” Well I guess my back really felt the stress. While in the hospital, I was restless. I could not help but feel surrounded and restricted by the machines. I wanted nothing more than to be released as soon as possible so I could return to school. I thought it was normal to desire to be back in school, so I was surprised to find out that the girl in the next room was begging to stay in the hospital. I could not imagine why she did not want to go back to school. My nurse told me I was special and that most of the other sickle cell patients prefer to stay in the hospital than return to school. No one had ever referred to my pain as special. Until then I thought I was the only one who had to deal with such pain. I felt fortunate to be so motivated in school and thought that maybe God had not forsaken me after all. I became proud of my pain and my ability to not let it define who I am, even though the pain still came back.
I was 16 years old the third time I was stuck in the hospital. It was the second semester of my junior year of high school and enrollment in the Early College of Macomb Program. It allowed me to take college classes in high school. I loved my medical terminology class. Ironically, just as we were learning about the Latin word for “back,” the pain struck again. Unfortunately, I went in for back pain and came out with another. I left the hospital with an inflated arm. The nurse tried to tell me a “sickle cell crisis” had caused my arm pain, but I knew better. By then I was adept at noticing the variances in my pain. I could feel the difference between a “crisis,” and pain caused by something else. I felt empowered to at least be able to distinguish my pains.
Eventually the feeling I had was justified. The truth was my I.V. had not been inserted correctly. The fluids that were supposed to go into my veins were trapped between my skin and connective tissues. No wonder my arm felt like a small pencil jammed with lead three times its size. Later, I was told a nurse suspected it was my I.V., but the other nurse did not want to “inconvenience” me by changing it. I was infuriated by their use of that word. For so long, I had felt my pain and I were just nuisances that no one wanted to know or knew how to deal with. I do not think I would have been able to handle that situation without my reclaimed faith in God or if my mom had not been there with me. Then I thought my pain was making me stronger and more sensitive to the pain of others. I stopped thinking God had forsaken me and started to believe my “chronic disorder” was giving me insight into something society cannot understand without having experienced it: pain.
I was 18 years old the fourth time I found myself sleeping in the hospital. I had just finished my senior year. It was summer time. I was preparing to go away to college— to the University of Michigan. Then my leg started. I do not know what caused it. All I knew at the time was that I could not use my leg. Even the slightest pressure on my leg caused excruciating pain. This time my parents took me to Beaumont. The doctors had recommended I get a blood transfusion. It was not the first time doctors have made this suggestion, but, for some reason, this time I took the offer. It was horrifying. My body was afflicted by the invasion of some foreigner’s blood and was so furious that it spiked a fever. I started praying and the fever went down. I was finally discharged from the hospital a few days before freshmen orientation.
I was frustrated at orientation. My leg had not fully recuperated, and I still had a slight limp. I did my best to hide it. I pretended I was not in pain. I blamed myself for being unable to catch up with the other students and struggling to climb the stairs. I told myself it was best I did not tell anyone because I did not want special treatment. Even when I attempted to tell someone, I did not ask them to do anything.
For so long I have tried to communicate my pain and my needs, but I get aggravated trying to figure out when and how to do so. Some of my friends’ parents got upset with me when I got sick while at their house, if I had not warned them of my “chronic disorder” beforehand. Others would look at me with confusion and disbelief. Worst of all, the majority of the people I told, shortly forgot I ever mentioned it. I felt small, like I could not win with this “disease.” I felt that the few that actually remembered just took pity on me — that they looked down on me as the helpless, little, Black girl with sickle cell anemia. I gave up trying and convinced myself no one was listening to me anyway. I felt like a phone stuck on mute. My attempts were as pitiful as an ant trying to make its presence known to a human. At the time, I had let society label my own pain as a “bad” thing.
I did not lose hope, though. I had good grades. I did not misbehave. I decided that since my pain was unbiased I would be too. I believed Allah had put me on this Earth and given me this pain for a reason. I turned my pain into my motivation to become a pediatric hematologist and decided nothing would stop me from reaching that goal because God was on my side. This optimism was slowly building up inside of me as I realized how fortunate I was and still am.
My mom further instilled hope in me by believing me. No matter how often, or how loud, I shouted with pain, she believed me. No matter what day it was, what time it was or what had to be done that day, she believed me. She said she saw it in my eyes; that they changed when I was in pain. She was the only one that could see the waves of my pain. She did not actually see pain in my eyes. Rather her belief in me allowed her to sympathize with me. She did not question me or my pain. She knew when she looked in my eyes.
I continued to learn how to deal with my pain, but my biggest lesson came from English 124.002: Contemporary Disability Narratives. I entered the class hoping to write science or medicine-focused papers, but instead I composed identity-focused essays that addressed the problems with socially constructed ideals of normality. I went from taking science classes that attempted to define what it means to be human to taking an English class that emphasized the ambiguity of humanity. I uncovered meaning behind my own identities and proclaimed myself as disabled.
Claiming this new identity made me realize that expressing my pain was not a “bad” thing. Rather, the word itself is problematic. It assumes and makes necessary a comparison of something good. Now, as a writer and an activist, I know both of those words are socially constructed. Society has decided that feeling pain is “bad” and insisted that feeling no pain at all is better, as if that were even possible. When confronted with the idea of pain, society has deemed visible, measurable pain as the only authentic pain. When pain does not fall into the acceptable categories, it has made blaming the individual for their own pain an appropriate response. I disagree. I believe that pain is part of being human, and how we experience pain is part of what makes us all unique.
While writing this personal narrative, I had to face critiques from people who could not relate to my experiences with pain. They tried to tell me what events in my narrative were insignificant. I struggled to explain to them why all the events I chose to discuss are relevant to my story. However, I believe that I should not have to justify my experiences or help people understand my pain. I hope that someday I will be a part of a society in which anyone can express their pain without others passing judgment. Society needs to stop trying to objectify, palate and label my pain.
I have reclaimed my own disability narrative and I will continue to share my story. My pain is not going to go away. The attacks will come back and the pain with them. I have expected this fact, though. I find it comforting that at least my pain does not discriminate against me like most of society does. Pain is not biased. It inflicts us all, just differently, and most of us are afraid to express it. I do not expect society to do much, but I do expect people to ask, or at least hesitate, before they proceed to label me and my pain. I’m not asking for much. If only society could make a minute cultural change and bother to be considerate or at least believe me, even though it cannot possibly understand my pain.