The Chosen One 戦士👑
I recently started writing about living with my health condition and ways it has/had an effect on me. My reservations on speaking about it publicly was really about the stigma associated with the disease and not because of me having a complex or feeling some sort of shame about it. I hate a pity party so i just avoid the outing entirely. Just a handful of family members and people i assume have sense and feel comfortable enough telling actually know this about me. It’s neither a big secret nor a great discovery. In Nigeria alone, there is an estimated number of about 300,000 babies born each year with severe hemoglobin disorders and sickle cell takes a larger part of the statistic.
I am deep in thought today and i have fragments of memories and thoughts in no particular order. Epiphanies and situations where this aspect of myself i want to share has affected me in some way and altered my perspective and approach to life so bare with me if it’s a little all over the place….
I remember growing up being very aware of my predicament but not having the bandwidth to explain what it was and how it made me feel to friends and family. For the most part, it was bottled in and i lacked the appropriate tools for expression at the time. People in school just knew this guy doesn’t talk much and keeps to himself, doesn’t do any sporting activities, is excluded from mass punishments oftentimes 😅, fell really sick during exams and doesn’t necessarily enjoy stressful situations in life lol. They sometimes attributed my quietness to being someone with a shy disposition which was also true to a certain extent but i just never felt like i belonged if that makes any sense. All I knew was pain and a vicious cycle of highs and lows.
I wouldn’t call it pretense but I had developed a threshold for pain from early on and knew how to keep it cool even if I was going through excruciating pain. You’d have to pay really close attention to know something was wrong with me. I’d usually wait till I got home and then have a physical then mental breakdown. Habitually, never in front of my guys when presented with these circumstances. I’m not the biggest fan of pity. Empathy i can understand but pity, i find oddly condescending.
I have this memory from my earlier years in Uni where i was speaking to an acquaintance and somehow sickle cell came up and he told me his father had the disease. Unknowingly to him, he changed my life in ways he couldn’t even recognize. Prior to hearing this, my existence was completely dictated by limiting beliefs, misconceptions and ignorant train of thoughts about this disease that were picked up and sometimes even self-imposed as a result of misinformed research and just by gauging peoples reactions, their judgements, how they treat me when they somehow find out, listening to and seeing the experiences of other warriors like myself who lost the battle in the end. Now someone has come into my life, my room! to tell me he has a whole father who’s perfectly healthy, living a fulfilled life with not so much struggle and pain? 🤔. you mean I’m really not going to die before i turn 25 (I thought to myself…. on several occasions)
Here I am at 30 and it feels so surreal. — I’m alive and healthy, feeling at my best, feeling like I’m just peaking and it’s an amazing feeling!
I could have died a couple of times you know? As selfish as it sounds, I have even begged for death at the height of certain crisis because it seemed like a better outcome than whatever pain i must have been feeling at the time. Sometimes i wish i could actually explain what the pain feels like. I wish i could transfer the pain sometimes😅, I wish there was a gauge or meter ranging from a pinch to a gunshot wound, to your bones being snapped in half and other painful experiences you could actually weigh this experience against because it might seem exaggerated just giving a verbal description.
I’m also reminiscing about a period in my life when i had to be at the sickle cell centre a lot to run some tests and try out some new medications.
This experience opened my eyes to the reality of pain and suffering not just the warriors go through but their parents also. I met a single mother of 3 at the centre with one of her children and we got to talking a bit and she’s sharing with me how she’s lost a child already and she has 3 left who all happen to live with this disease and how painful and helpless she felt seeing her 3 children in severe pains. That just made me think of my mother and how she must feel sometimes. The woman was hurt about not being able to afford the medications we need daily to survive and honestly, we just started crying together and i somehow convinced her that her children would be alright, i told her my age at the time and how the experience was from the perspective of someone who’s older and has some years of experience being a warrior lol. i do hope her kids are doing alright!. The sickle cell centre exposed me to the pain and complications other warriors go through ranging from blood clots, anemia, addiction to opioids (which i have experienced and will write about someday) to organ failure in some cases and that just gave me a sense of gratitude for my situation and also fortified my will to live and keep it moving, reaffirmed my being here for a reason and the urgency to really discover what my contribution would be in the grand scheme of things.
Since i put myself out there (Somewhat), i have been able to connect with other warriors (directly and indirectly) who have helped me put things in perspective by their being vocal and advocating for people who live with this disease. seeing them do things i never in my life thought was practical for any warrior. Although sickle cell varies in types and severity so not one glove can fit all. Nonetheless, i saw my people doing things i thought was impossible. For example going gym 💪🏾. Believe it or not, i always thought it was a recipe for going into full crisis mode but a beautiful warrior i follow on Instagram actively goes gym and paces herself. Yes! she does have the inevitable crisis now and then but seeing her going back to hit the gym when she’s well and keeping the momentum going actually lit me up and gave me so much inspiration to leap out of this box of mine.
If she can do it, what then is my excuse? i mean, i am a runner already and i have found a way to be consistent for almost two years so i can hack this don’t you reckon?
It’s officially been a little over two months of being consistent in the gym for me and my gosh, i feel so great; I didn’t know i could actually do the things I’m doing 😭. The ceiling I had unknowingly placed on myself all these years are shattering before my eyes and it’s been an exhilarating experience. So much more i could be doing, could have done but i bought into the narrative of this disease being limiting in many aspects of life.
“Thank God we don’t look like what we go through”…
That’s how i feel about my life. Super grateful i don’t look like what this disease feels like. Grateful for a support system of family (my mom especially) friends that keep me sane and grounded when the lows hit, the medical practitioners from the military doctors who took care of me when i was younger to the matrons and nurses that showed me nothing but patience (get it? 😂….I'm actually hilarious istg). Most especially, i am grateful to myself for being resilient and embodying the true qualities of a warrior in situations that required just that.
Its been a rollercoaster of motions ranging from the apex of elation to the nadir of depression, pain and misery that’s left me with the choice of either using it as fuel to my burning hot fire or really just a means to excuse and/or justify my resignation in different areas of life i might have felt shortchanged. But through it all, a warrior in every sense of the word! There isn’t another.
Breath of fresh air, Happy Birthday Midé🎈
I never was big on celebrating birthdays, i mean my parents threw parties for me and all that fun stuff when i was younger but as soon as the decision was mine to make, i really did not care to do anything(Just buy me video games and gadgets 😅) and you can understand where such jadedness might have stemmed from if you're following.
Right now it feels like i just exhaled after holding my breath in for 30 years. That’s the best way i can describe how i feel. I feel ALIVE, in the best shape of my life, on top of my game physically, mentally, emotionally, spiritually (I'm working on). Things fall into place for me, the universe is on my side and it’s probably the most secure i have felt in my life. It feels like a first birthday to me you know? I'm sure y’all about to flame my ass with the 30+ jokes too loool. I’m really just about to turn it up a notch and its been a long time coming. Undoubtedly, i am one of the chosen, here for a reason! I may not have figured what it is exactly but i definitely am headed in the right direction and these entries will serve as a recall at some point in the nearest future and im going to be so stoked coming back to see these words of mine manifested into a beautiful reality.
You can donate to the Sickle Cell Foundation Nigeria or get involved right here
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