Imagine being a child, and having to watch the few friends you have playing outside because you’re not allowed to join them. Imagine not being allowed to go to your friend’s slumber party when everyone else gets to go, and not because you’ve been naughty, just because you are YOU. Imagine not being allowed to go swimming, and definitely not being allowed to eat anything anywhere without careful scrutiny and parental approval. Why not? Because of the ‘Don’ts.’ Oh, how silly of me, of course you haven’t heard about the Don’ts – they are the set of rules that formed the four walls of my childhood prison. At least that’s how I saw them. Let me enumerate them for you:
– Don’t expose yourself to cold temperatures (whether natural or via air-conditioning) because cold will cause your red blood cells to sickle and form blood clots and then you’ll have terrible pains. Let’s just say, in terms of fashion, sweaters were definitely ‘in’ all year round for me. And in the Harmattan season (which is the cold, dry and dusty season in Nigeria) I definitely had the whole ‘Eskimo’ look going on – which was pretty difficult to pull off because we wore school uniforms, and mine was a knee-length full-skirted short-sleeved white dress, with a belt at the waist. So I had to wear a couple layers of clothing under the dress, a couple more on top of the dress, plus a hat, gloves, leggings, socks and sandals – no boots allowed. Needless to say, I turned quite a few heads in that outfit, but I couldn’t care less. The bottom-line was: avoid the cold at all costs!
– Don’t expose yourself to the sun for too long because intense heat could make you dizzy and you could faint; plus the heat would make you sweat, which could lead to dehydration and then you could fall into a crisis. Inevitably, my umbrella served me more as a parasol and my water flask was virtually an extension of my arm! Especially because we (my brother and I) weren’t allowed to drink just any water anywhere, no sir! Only water that was boiled and filtered under the most hygienic conditions – where else? In my mom’s kitchen of course! :) (Drinking tap water or any water of unsatisfactory sources could lead to skin rashes or even typhoid fever. Sadly, I speak from personal experience – children will be children no matter what.) Anyhow, dehydration was a definite no, no. I remember when I was about eleven years old – my brother and I were in secondary school then; (my sister was already in university) and we would walk home from school. The weather was so hot sometimes we’d sweat so much that by the time the sweat evaporated, it literally crystallized into tiny white granules on our faces! No kidding. The first time it happened I thought we were disintegrating or something worse (forgive my overactive imagination), but my brother (brave soul that he was) simply scratched some of the granules off his face, tasted them, and declared the verdict: there was no need to panic, we would live – they were just granules of salt! Much to my relief, he was right.
– Don’t expose yourself to dust because you could get a respiratory infection and ultimately end up in a crisis. Now, this Don’t may seem easy to adhere to until you take into account the fact that I grew up in Northern Nigeria, where there’s an extremely dusty (and cold) Harmattan/dry season for about six MONTHS of the year. In the peak of this season, walk around outdoors for a few minutes and one could literally see the dust in your hair, eyebrows, eyelashes, everywhere! Our house had to be dusted from ceiling to floor daily. So, when going to school, my infamous costume included a scarf tied around my nose and mouth. By the way, this was necessary because my secondary school was large, and had a lot of wide, open spaces. (As a matter of fact in the six years I attended, I never actually saw all four walls of the school!) Boy was I glad when I finally graduated from secondary school! Anyway, back to the Don’ts.
– Don’t engage in any excessive physical exertion like strenuous exercises, any sport activities or even walking long distances and/or doing anything that’ll quickly wear you out physically, because a short time afterwards, you’d be experiencing pains in whatever body part you strained. Now this was the Don’t I disliked the most. I come from a naturally strong and athletic family – my dad was in the military and he did a lot of sports, my mom ran marathons, my aunt played soccer, my sister used to march in school parades, and so on. As you can imagine, I pushed this particular Don’t to the limits whenever I could. I remember running a 100-meter-race in primary school, and placing fourth. Oh boy, by the time I got to the finish line I was breathing so hard I thought my lungs would serve me quit notice right then! But I was also grinning from ear-to-ear – thoroughly proud of myself. Sadly my happiness was short-lived because by the time I got home, I was hurting badly. (Oh yeah, by the time I was in my teens you couldn’t pay me to run, I’d learned that lesson the hard way.) I also love to dance, that’s something else that’s natural in my family – we’ve got rhythm. So as a child I would dance to my favourite songs in my room and I paid for that often enough that I eventually learned to be content with being the cheering section while others danced!
– Definitely, don’t hang around anybody with any kind of contagious illness such as a cold, flu or cough, because your immune system is not so strong and you’ll almost certainly catch the cold, flu or cough which could ultimately lead you into a crisis. (For the same reason, don’t use any public facilities and don’t ever share personal items with anyone; i.e. towels, bed sheets, clothing, cups/cutlery, etc.) Ahh yes, I remember an incident that happened when I was about age ten: My mom had to travel so she bundled me off to go stay at her friend’s place for a few days. (My dad was a frequent traveller and usually away on trips, and this was one of those times.) Unfortunately, in my new temporary residence, one of my mom’s friend’s children was just getting over the chicken pox, and a few days later when my mom returned and came to take me home, she found me running a fever. Not many days after that, you could’ve mistaken my brother and I for cousins of Casper-the-friendly-ghost, because my mom had covered us from head to toe in some good old-fashioned calamine lotion. Yes indeed, I had caught the chicken pox, and generously given it to my brother too. (Well, seeing as I’d already had regular measles at age 5 and German measles a couple years later, and I have skin that scars easily and permanently, I was beginning to visualize my family and friends adding “spotty” to the numerous nicknames I already had. And no, I will not tell you what those nicknames were, that’s classified information! :)
Okay, I remember another incident growing up. I’m not sure who took my siblings and I (because it definitely wasn’t my mom) but we went swimming at a hotel or park, I forget where exactly. I should say we went floating because we couldn’t swim! Nevertheless, if you’ve been paying attention you know swimming should definitely be out of the question because it involves at least three Don’ts – cold weather, physical exertion and a public facility – in this case. Anyway, when we were done, whoever took us got us dressed and shipped us off home, neglecting to make us take showers when we got out of the pool. Since we didn’t know any better, we happily went home and later on, off to bed. The next morning, however, I woke up and discovered I couldn’t open my eyes. I mean, I was awake, but for some reason my eyelids were glued shut. Being the drama queen that I am, it only took about five seconds before I had alerted my family and they came rushing into my room to find out the reason for all the commotion. To cut a long story short, someone eventually got a towel and warm soapy water and carefully, wiped away at the sticky substance around my eyes until I finally opened them only to discover that my brother had shared a similar fate. What was the root of the problem? It would appear it was a reaction to the chemicals in the pool water. Let’s just say from then on, my mom ensured my wardrobe was missing swimwear, and for once, I did not complain!)
– And most of all, by any means necessary, don’t let any mosquitoes bite you because you could get malaria, which means your already low blood level will go even lower and inevitably, you’re in a major crisis. Once again, this was easier said than done. I remind you, I grew up in Nigeria, where mosquitoes seem to be of the opinion that they are a man’s best friend – an opinion they formed probably because we begin ‘clapping’ as soon as they show up .Well of course this meant all windows had to have net screens, and the house had to be sprayed with insecticide every evening, add a mosquito net over my bed, and we’re good to go. Now, when it comes to mosquitoes, you cannot be too careful. Although not all mosquitoes carry malaria parasites, and therefore not all their bites are infectious, the mosquitoes do not wear a sign on their heads to tell you which ones are carrying malaria parasites and which are not. (Furthermore, even if they did, they’re so small you wouldn’t be able to read it!) Seriously though, Malaria is bad enough to bring down a strong, healthy person, let alone someone with an already compromised immune system. Despite all these precautions, if I told you I could count the number of times I had malaria growing up I’d be lying. It seemed to me that at least one of those insufferable mosquitoes always seemed to find a way past all the nets. (And don’t you underestimate their intelligence even for a second. They’re also patient enough to wait for the opportune moment, such as, when you have to get out of bed to go to the bathroom. I can just see it now…you speedily lift up your mosquito net just enough to dash out of bed and then drop it right back in place. The mosquito, having quietly observed this from her duty-post, calmly flies over and waits by the net, while you’re relieving yourself; such that as you return to repeat the process and get back into bed, alas, the mosquito who is much smaller and quicker, joins you – obviously sensing your need for company since you’ll be up all night!)
Anyway, are you beginning to get the picture? Don’t, Don’t Don’t! The list went on and on and on… (Actually, in addition to cold, dehydration, infection, and stress, pain crises in sickle cell disease can also be triggered by the menstrual cycle, and alcohol consumption. I can testify to the former, but have wisely avoided the latter completely!)
Being a regular teenage girl is difficult enough what with having to juggle parents, periods, pimples and, of course, peer-pressure, but in my case, I had one more ‘P‘ thrown into that mix – you got it – PAIN! One particular experience comes to mind at this point in time. I remember it quite vividly…
I woke up mid-morning on a cold October day in 1994 d I could tell this was going to be a loooong day. Rise and Shine! Let me rephrase that – in this case, it was ‘Rise and Whine!‘ because I felt as though every last bone in my hips and legs had just been shattered.
The Year: 1994
The Place: My Mom’s Bedroom
The Event: You Got It – Another Crisis
I clenched my teeth in order not to scream the house down, and slowly pulled my legs up so my knees were bent and my feet were flat on the bed and then I discovered it. At first I thought I was seeing things (which wouldn’t surprise me, this level of pain could render anyone delusional) so I closed my eyes and re-opened them. Nope, it was still there – unbelievable. So I yelled “Mo-mmy!” and immediately my mom came dashing into the room. I promptly informed her the following: “Mommy look, one leg has grown longer than the other.” At first, I’m quite certain she thought I was suffering from pain-induced dementia, (who could blame her) but indulging me she took a closer look and after a thorough inspection confirmed my suspicions. In fact, believe it or not, the femur or thigh bone in my left thigh had ‘grown’ an inch and a half longer than that of my right thigh, overnight. (As I learned later on, this is not a unique occurrence in sickle cell patients. In fact some ‘sicklers’, as they are commonly called, become deformed because of the severe trauma that their bodies repeatedly go through during these ‘crisis’ episodes.) Well, at the time of this event I didn’t know all this, so it just looked like magic to me. Yesterday I went to sleep with equal-length legs, today I wake up and I see one leg longer than the other. Incredible. So what happened next? Of course we were off to the hospital where I was promptly hooked up to ‘drips’ (as intravenous fluids are popularly called in Nigeria) and also given very strong pain-relievers. For two weeks my legs felt like they belonged to someone or something else and after the pain was gone, there was the process of learning to walk properly all over again. (Needless to say all this time as is usual in crises, I was missing school, which meant TONS of make-up assignments and tests waiting for me when I returned.) By the time I was able to return to school, I began to have severe backaches because I was walking on uneven legs. This led to may having to carry a special chair with me to school in order to give my back proper support…as if I didn’t already have enough reasons for my schoolmates to make fun of me.
Jump ahead two or three years and discover the long-term complication – because I’d been walking imbalanced, my spine had become curved, a condition known as scoliosis (I had right lumbar scoliosis to be precise), and this caused severe pains in my spine and hip joints. It was the whole nine yards, medically speaking – traveling out of state with my mom to go see orthopedic specialists, waiting in long lines of sick people, being poked, prodded, and otherwise examined, while in pain by the way – and the solution? I had to have two pairs of special (and might I say very unattractive) slippers made with the sole of the right foot about an inch and a half thicker than that of the left – a shoe raise – which I wore for about a year and, subsequently, quit wearing because I came to the conclusion that life is way too short to spend it walking around in ugly shoes!”
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'Incarceration' and 'Teen Troubles' are excerpts from Chapter 4 of the non-fiction book ‘Yellow Eyes Gone White! An Inspiring Journey of Triumph over Sickle Cell Disease" by Lady InspiroLogos (Ifueko Fex Ogbomo).
To purchase the book: http://bookstore.dorrancepublishing.com/yellow-eyes-gone-white/