by Funmilayo Akinpelu
June 19 was World Sickle Cell Day. This is the day each year that awareness is raised about the menace of sickle cell disease (SCD), a genetic condition which robs red blood cells of their rounded form and leaves most of them sickle-shaped, like clustered crescent moons. What this does is leave an SCD carrier replete with sticky, unfit cells that die every 10 - 12 days, so that only a few healthy red blood cells are suitable for carrying oxygen around the body. The presence of sickly, malformed red blood cells causes the blood to constantly clot, leading to anemia and episodes of pain called vaso-occlusive crises (VOCs). Because sickle cell disorder is not like a gust of wind or a storm that sweeps its victim away in a rush, but is an inherited, lifelong genetic mutation, lots of people with the disorder refer to themselves as warriors rather than survivors. I am a warrior. What this means is that, from my childhood to the present, I have had to contend with recurring bone and joint pains, bodily anomalies, delayed growth, regular fatigue, jaundice, hemolysis and associated health complications such as ulcers, acute chest syndrome and infections that come with having misshapen red blood cells.
Despite being a global health challenge, sickle cell as a disorder is largely unrecognized and under-researched, not to mention the stigma and preconceived misconceptions that surround the disorder. The most popular misconceptions are built around claims that sickle cell carriers mostly come from sub-Saharan Africa and are bound to die prematurely. Although there are elements of truth to these, the racial-cum-geopolitical territoriality accorded to SCD is contestable, and although there is still no remedy for the disorder (bone marrow transplantation/stem cell transplants are currently the most viable curative measures), people with SCD can live longer if given proper care and treatment. June 19 was designated by the United Nations as World Sickle Cell Day in order to better inform the world’s population about this highly misunderstood health condition.
However, this year on June 19, the world was caught up in the throes of a larger crisis: COVID-19. The possible susceptibility of people with pre-existing conditions such as SCD to COVID-19 played a part in spurring what turned out to be vibrant advocacy and outreach as online posters inscribed with catchy slogans about sickle cell spread across social media the entire day. The revved-up World SCD day activities on June 19 were uplifting and refreshing. But as I took time to reflect on this day from an experiential perspective, I was overwhelmed by how the day meant much more than simply a time to raise banners; it was, for me, emblematic of a commemoration of lived life, of love and loving, and especially, a celebration of connection and connectivity, socialization and sociability, of friends and friendships fostered from a distance during the previous C-19-riddled months. This might come as a surprise, given the fact that the ongoing global pandemic is mostly associated with isolation, solitariness, boundaries, barriers, socio-political adversities, educational setbacks and the general anxiety that erupts in the wake of an invisible enemy gone “viral.”
It's true that the tendency of SCD warriors to be introverted (or even depressed) made the lockdown hit not as hard for the first few weeks. To put it mildly, I was quite chill about being indoors. Like a number of students, I spent my time sleeping, eating, binge-watching, struggling with writing papers and being productive, but still, I was in my element. Subsequently, though, I began to adjust to certain affectations that paradoxically made me start relishing the sparse human presence I could still access either through online connection, or physical relations/correspondence from a distance at the Residence Centre. Something about having to maintain eye contact with classmates and lecturers on Zoom or Teams during lectures made it impossible for my eyes to dart around as they would in an in-person class. To keep my restless mind from wandering, I would affix my attention to facial features, and I found it quite fascinating to observe the distinct trademarks that had erstwhile gone unnoticed due to my constantly wandering eyes. The rugged passageways, hallways and common kitchens became hot spots for casual rendezvous where students – including myself – relaxingly stayed several feet apart while making small talk and answering random questions like “What have you been up to lately? How is your thesis going? What is it going to be after CEU? You know, we should hang out sometime after things return to normal”. Hence, in a paradoxical twist, a casual sort of intimacy was engendered between me and several students by means of these impromptu short conversations. Being “stuck” at the RC with students who, for some reason, could not go home and having to watch them from afar as they navigated their way around studying, writing their theses, cooking regularly, wearing comfortable home clothes while strolling around the dorm, engaging in sports and simply living their lives closed a sort of affinity gap that had been wide open before the lockdown or social distancing. This made me realize just how much real friendship and togetherness had been drowned in the pre-C19 rush hours and the amount of communication signals I had lost to a sea of faces, voices and rapid motions.
Also, it was interesting to see the CEU Residence Center Facebook page and other CEU-related social media accounts fill up with amusing content, ranging from rants and agitated complaints to funny comments and words of encouragement from fellow students and staff members. In April, however, I was jolted out of my already comfortable lockdown routine after my body caved to a series of crises for several weeks. Inadvertently, I knew this episode was going to be different from the times when I would simply drag my pained body to a hospital or the medical center or, if I was physically incapable, relieve the pain with analgesics after which I usually returned to my usual daily activities. For one, I had run out of drugs and was experiencing several complications alongside the usual pain I was accustomed to. Consequently, I had to seek help from pals and “neighbors” whose phones I used to put calls through to the medical center as well as close friends who had to help with feeding needs.
At first, I was uncomfortable with how vulnerable this made me feel; having to rely on others during crisis periods was something I thought I had grown out of. But I later came to embrace this vulnerability, as I appreciated the goodness in consciously finding myself deriving comfort from the concern and help of others: there was the envelope containing drugs slipped beneath my door by CEU HR staff members, the phone calls from CEU’s doctor and the affection from friends who dropped by to say hi, bringing along with them lots of love, good company and food items as well. I was amazed by just how much I had missed the homeliness that came with the vulnerably of letting others into your life, especially during difficult times. I had forgotten how to let myself be deeply loved, and I craved that feeling once more. So, I began to open up to any one I felt safe enough to talk to, chatting friends and family up or having Zoom meetings just to talk about challenges with writing papers, my protracted health crises, and my depressive mental state of mind. And believe me, it was freeing.
As the lockdown eased and the restrictions became less rigid in the following months, the Residence Center became agog with small nightly hangouts, food gatherings, light-hearted chit-chats, and this stimulated within me the desire to live life as I know it to the fullest. Either online or in the Residence Center, I had begun to learn to approach every courteous exchange through eyes constantly brimming with fascination, and began to find reasons to want to know more about the people around me beyond mere academic information like “So, what thesis topic are you working on? What department? 2-year or 1-year student? Oh, PhD, I see...” On June 19, even as I spoke openly about SCD on social media, it was such a pleasure seeing friends take time to join the conversation, either by engaging in assertive polemics about globally-oriented social and medical biases that have characterized sickle cell narratives, reposting online contents, using SCD-related hashtags like #knowyourgenotype, #EndSickleCell, debunking misconceived facts, or simply shouting out to me and other sickle cell warriors all over the world.
While the significance of these concerted actions might have been lost on me on a normal day when I am rushing between classes and crowded spaces, the quietude of being cloistered in near-aloneness made me realize the enormous importance of having friends who are interested in sharing my peculiar SCD experiences with me even during such a troubling period as this. As it is, spending time closeted or pretty much consciously observing social distancing has resulted in my knowing the worth of a hello said from afar, and allowed me to discover the gravity of a sincere smile, the gift of boisterous laughter, the beauty of natural ambience or surrounding humming noises, as well as to rediscover the preciousness of human contacts. It is within the locus of spatial exclusiveness that I have discovered that the best of relationships need not be cultivated through facetious facial contacts that can easily be blighted by superficial politeness and attempts at political correctness, but through the earnest motivation to genuinely share meals, memories and moments prompted by the initial incidental occurrence of sharing silences. I cannot deny that the ongoing pandemic still raging in several countries does feel like a gloomy, dark sky, but I must acknowledge that this gloomy, dark sky is peopled with a constellation of beautiful, glimmering stars that have been a comforting wonder to behold, even to a girl like me with crescent moons flowing in her veins.