Blissful Ignorance, Miserable Clarity
I almost envy my younger self…almost. He was always kind, optimistic, forgiving. Even when he was in danger he’d find the courage to pull through. I always said that I disliked him, who I was back then. I always said that he made a lot of stupid decisions, was naïve and dumb…but he was a kid. Nowadays, I still do and say a lot of stupid things that I think even he would shake his head at. In fact I think the only true difference between us two is childhood innocence, or as I like to call it, blissful ignorance. It’s amazing how powerful that actually is though; just how much, simple childhood innocence could change the mindset and context of any given situation. There’s not a single better example of how drastic that difference is than the times I’ve almost died.
When you grow up with Sickle Cell Disease, life can throw a lot of complications at you: physical pain, emotional pain, always being sick with something because your immune system is terrible, always being on some sort of medication, always being restricted to where you can go and what you can do. All of this because the moment you get fatigued in the slightest you’ve opened the door to a world of pain (Mayo Clinic, 2018). The most relevant thing in my case is a lower than normal blood count. As you can imagine it’s pretty important to not have that but that’s just how it has worked throughout most of my life. The average hemoglobin count is 13.5 to 17.5 grams per deciliter. I thought that sounded nice, the first time I heard it. I wonder what it feels like to have that… I think my benchmark count in my entire life is probably 12, and just having that much nearly killed me as well. My average blood count is 7 – 10 and it’s one heck of a balancing act trying to keep it there. There’s a couple points leeway with messing it up but there’s a difference between a couple points and so many points that you need to be rushed to the emergency room. This has only happened to me twice so far but even though both situations were essentially the exact same, the effect both experiences had on me differs greatly.
I can vaguely remember the first time. I was actually 9 years old. I remember getting up in the same sky blue cubicle I called a bedroom and eating the same breakfast I always ate (and still eat). Buttered bread with jelly, not the most creative meal but it worked. Everything that morning was pretty much following the routine. I slowly got ready for another “meh” day of middle school and my mom yelled at me to do it faster. Something like “Mason hurry up” or some other variation of the sort. However, I was not into it at all. I had an unusually strong level of indifference towards school or towards anything that day, really. The day before was about the same, no energy, no intrigue, nothing. I just felt abnormally sleepy. When I told mom about this she decided we should go to the medical lab and take a blood test to be sure everything was ok. We were overdue on the monthly visit anyway. As such we detoured to the hospital called Medical Associates. Even as a kid I never liked that place. Its walls were some sort of sickly yellow and the atmosphere was bleak. Hospitals in general were always so depressing. Always crowded with people, a lot of them in horrible condition, looking scared or saddened. The whole place is freezing cold and smells like an ironic combination of medicine and death. It didn’t help that all I usually did here was wait to get my skin mauled by a needle before I was dropped off at school to get my soul mauled by boredom. I always gave trouble during these tests as well. I always blamed them for being incompetent enough to miss the obvious vein staring them in the face three times in a row. Regardless, a couple vampire bites later and I was shipped off to Hummingbird Elementary School to learn more about math or something. It’s been so long I don’t even remember all of the classes I took there. The campus was of a decent size, just enough for kids to play in it and for them to cram as many classrooms in one 2 story building as possible. However, because of that architectural decision, one obstacle remained in front of me. One that I usually had no issue scaling but at that moment, staring it in the face, I dreaded. Stairs…what necessary evil those are. I struggled my way up the spiral staircase with the weight on my shoulders getting heavier the more I climbed. It felt like I was going up a mountain and my school bag felt like it was a sack of rocks. What is up with this, I thought to myself, why is it so heavy? With my trek completed I got into class and sat down. I struggled to pay attention to the lessons. I didn’t think much of it because that just happened to me sometimes and I usually caught a second wind halfway through the day anyway. However, it didn’t take more than 30 minutes of me trying to keep my eyes open before I was called out of the classroom by the principal and rushed into a taxi. At that point I had no idea what was going on. I recall mom being in the car with me but apart from that nothing. I had absolutely no idea what was happening nor did I have the energy to really care. Now that I wasn’t obliged to stay awake in class, I just fell asleep. When I woke up we were back a Medical Associates and I was in a wheelchair being wheeled to a part of the hospital I had no recollection of ever being before. The entire admission process was a hectic mess to me. I was just being rushed from room to room in a wheelchair while mom signed things and people talked about stuff I didn’t understand. You could have told me they were speaking Japanese and I’d believed you. What they were saying was way too complicated for me to understand back then and I was way too tired to attempt to do it.
“Mason’s @%$*& is _&@#$$I &&*0% –“
“D&#( of birth? Any &^%*#()*&? Do you have in#$%@!^*”
“He will __ (#@*% IVs.”
“What *$$%# blood type? O-&^%*$#?”
Something I actually caught on to was that I apparently had a hemoglobin count of 3.6. I may have been a child, but I knew basic math and 4 points under average did not sound good. They decided to stick another needle in me except this time they let it stay in there and connected it to a bag of what looked like regular old water. I believe my past self would have thought this as some sort of cruel and unusual punishment.I was escorted to my hospital room and my mom stuck around with the nurse to check in and basically get me settled into what would be my new accommodations. It had a TV so…good enough for me I guess. Everything else was not noteworthy. Bland white and pale blue walls, an in-room bathroom, and a bed…like machine. At least I got a window. After everything was pretty much set in stone my mom left to go find blood donors. Unluckily for everybody I have one of the rarest blood types of all time, O-negative…perfect (Thrombocyte, 2018). I realize that during all of this, I had every reason to be concerned, but I wasn’t. I didn’t have the energy to be scared about this and, fatigue-induced indifference aside, I genuinely believed I’d be ok. I trusted mom would be able to save me. I believed God was by my side the entire time. Honestly, the only thing I really wanted was to go home and play video games like normal. With nothing much to do, I laid in my hospital bed and slept.
Fast forward 11 years to the early morning of December 20th, 2017. There was only darkness…peaceful darkness. Then, out of the darkness a boy cloaked in white light with his heart out for display shone through. The light was blinding. The light was cold. The light went out. I woke up in cold sweat, shivering, convulsing even. I started to panic and made my way towards the bathroom. I got off my bed and landed on my feet, still vibrating with the force of an earthquake. At this point I assume that walking so much as 30 feet down a hallway took the same amount of effort it would take to climbing Mt. Kilimanjaro. Right foot, left foot, darkness, right foot, left foot, a fire, right foot, left foot a blizzard. I could barely focus; in fact, I could barely breathe. I sat down shaking violently for minutes, waiting anxiously until the tremors subsided. After that I felt extremely weak and my anxiety was at an all-time high. “What the f— was that,” I asked myself, as if I had the means to even interpret whatever nonsensical nightmare I just experienced. I decided that I would get back into my bed, try and get however little amount of sleep I could and move on but once I reemerged from my slumber, not much of anything really changed. I still felt like a broken rag doll, but this time I could see the blue of my bedroom walls due to sun having risen. I took this as a sign that I should probably inform my mother as to what was happening and once that happened we decided to make our way to the medical lab once again. This time however we didn’t stop at Medical Associates. At some point in time during life we got sick of those people botching stuff up taking 500 years to do basically anything. So, we went to another hospital, and just forwarded the lab results to my doctor later. The new place was a lot more polished…but also twice as cold. White walls, couches in the waiting room (albeit a very small one), glossy tiles. The place was so shiny you’d think everything was made of glass or pearls or something, with the exception for some rather unfitting brown wooden doors. Taking the blood test was as easy as getting in and out. Over a decade of doing the same thing repeatedly makes you a professional I guess. I didn’t feel like a pro at anything at the time though; for some reason I could drastically feel the lack of energy I had. It reminded me of the incident almost a decade prior. I didn’t just feel unusually tired; I felt physically drained. Moving too fast made me feel dizzy and I couldn’t move very fast in the first place. After taking the blood test and leaving the hospital we made our way back home but just like a decade ago it didn’t take long after reaching our destination before we got a call to turn right back around. 3.87 hemoglobin count, almost exactly like the first time. Medical associates got an upgrade this time around. Repainted a couple years ago, the walls evolved from a sickly pale yellow to more of a slightly less sickly green. Also, for some reason the outside walls were some ungodly combination of pink and blue which…well let’s not talk about that, it’s not important. As I was being admitted into the hospital I was acutely aware that my life was in danger this time around. I wasn’t just more self-aware, I was aware of everything. All of a sudden, I could sense the tension in the air. On top of that people started asking less questions to my mom and more to me. I could understand all the legal and financial jargon being tossed around about me. The amount of money this was going to cost was all too real. Speaking of which, I have no idea if this was how they acted a decade ago but these people admitting me into the hospital came off as rude and scatterbrained. There’s one person trying to get mom to pay money for the hospital stay and stuff before I even got in the room. Meanwhile, another is trying to stick the needle in me needed for the transfusion and yelling at me not to move when in reality, I could barely bother to spend the energy to move my arm and she’s just waving the needle around like some sort of magic wand. After I got into the room I’d be staying in, which was practically more of the same except now the TV was a flat-screen (yay technological advancements), things started to sink in. I could see the expression on my mom’s face as she paced around my hospital room making calls, trying frantically to find someone in the country who could donate O negative blood for me to live. I could hear members of my family on the phone and the deep-rooted concern in their voices. Suddenly, I could tell that everyone was worried about my well-being and as such, so was I. I was no longer shielded by youth. I couldn’t just fall asleep and wait for this to pass and for me to be saved. I was an adult and an active participant in all of this and because of that, everything got a lot more difficult.
10 years ago, I spent most of my time in this situation either being asleep or being bored. Most of the depressing and worrisome details happened behind the scenes. For example, I learned that my mom was practically out in the streets with my aunt asking people their blood types, when she was not calling people (also asking for blood types). In the end they found out a parent of one of my classmates worked for the British Army and through her (and one of my mom’s friends) I was able to get 2 pints of blood to sustain me. The stress and effort my family must have gone through to find those is something I can’t even imagine now but back then they just came in with the packet of blood practically being delivered to me on a silver platter. Last December, though, I could tell what was happening as it happened in front of my eyes. I was always getting live updates, in fact I wanted to be updated as it was my life in the balance. I was always awake, even if most of the time I was just watching TV, so anything that happened, I was awake for. On top of that the nurses talked to me about everything that they were going to do, so I understood everything that was happening to me (fortunately they were a lot more reasonable than the receptionists). It felt like there were so many more steps to every procedure this time around. When I was a kid doing this, things just ran on autopilot. In fact, the same day I was admitted into the hospital back then was the same day I came out. Everything was smooth sailing. The second time around was anything but smooth. I spent 3 whole days in there because the blood bank didn’t want to work during the holidays. In all honesty finding donors this time was a cinch, my family came prepared. That doesn’t mean anything if the people in charge of whether the blood can be used decides they want to be lazy. Yeah let’s just let people die on Christmas, who cares right? I don’t think I’ve ever spent an overnight in a hospital before but all of a sudden, I spend 3 days in a row. Each day seemed to be slower than the last. It was bizarre. Every day seemed to have its own highlight as well. Day 1 I got admitted into the thing in the first place. Day 2 I managed to get the first 2 pints of blood into my body. However, the first pint basically was poured into my system instead of drip fed and the resulting reaction in my body essentially made me relive the nightmare I had, that sent me here in the first place. You don’t know terror until your entire body starts convulsing, your lungs stop acting like lungs and you feel bodily fluid sloshing around your body in a frenzied panic. Meanwhile, I guess to make up for that mistake, they made the second pint of blood feed into me at the pace of molasses…in slow motion. 8 hours, staring at blood dripping at a painfully slow rate for 8 whole hours. Also, did I mention I wasn’t allowed to move my left arm because the position of my hand actually affects the transfusion process? Yeah, such a fun time. What a load of nonsense. Day 3 was the last pint I needed to get back to full health and the last day I would spend in that dreaded room. None of this was a pleasant experience.
Finally, I feel it important to note that when I was a kid, there were not many visitors. There was my mom, my aunt, my dad and that was about it. These are the people I expected to see; I would be concerned if they weren’t around. I mean I lived with my mom, she was always at my side, and my aunt was literally down the street from me, so I felt like she was always around. My Dad didn’t live anywhere near me but if anything, bad happened to me he’d come down in a heartbeat regardless. I’ve heard him freak out about much less. I still remember having to reassure him that I was alright all those years ago. He took off work, came into my hospital room to visit me and even stayed around to make sure I was ok. I think he felt back then that I should have been more worried. Nowadays I think he may have had a point. The second time around he didn’t live in Belize anymore but that didn’t stop him from freaking out about my condition over the phone. I’ve never seen such a combination of concern and anger. However, I understood where it was coming from this time. It probably didn’t help that no one kept him updated. He found out from my brother, who found out from his girlfriend who found out from who knows who. I was only in the hospital a couple of hours and the news of my condition swept the entire country. Do not underestimate the power of social media. Unfortunately, it also scared not only my dad but just about everyone else in my life than I had not personally updated about my condition, so they were all blasting my phone asking what the heck was going on. A lot of my family and friends kept my line busy throughout the first day. And if it wasn’t my phone, it was in real life. A lot of people visited me in the hospital to see how things were going once they heard the news. Some of them I knew, but there were quite a few I did not recognize, or I didn’t expect to see. There were so many people on my Dad’s side of the family tree who were genuinely concerned for my well-being and seeing them there in front of me was just bizarre. A lot of the time their existence isn’t even on my mind because I’m just not that close to them, but they found me that important to take the time out of their schedules to visit me, in some cases more than once over the three days. It was touching, honestly. I think the most eye-opening visit was one I could have never expected. On the second day I was in there, a young lady showed up looking for me. Her face only seemed vaguely familiar yet I could not remember if I’d ever seen her in my life. She told me and my mom that she heard about the news over Facebook and wanted to help me out. It turns out she also had O negative blood, so she went down to the blood bank and willingly gave up a pint, one that we sorely needed. I didn’t know who this woman was, but she was giving me blood. Why? Well, it turns out that she was the sister of one of my old middle school classmates from 10 whole years ago. To even further up the irony, that classmate was a huge bully. When I was a kid I despised him but now he was just as worried about me as everyone else. Her sister even said that he wanted to be here with her. I couldn’t even imagine that happening. Someone I didn’t even want to look at a decade ago wanting to see me as I lay on a gurney? I mean it’s not like I’m the type of person to hold 10 year-long grudges; the stuff between him and I was water under the bridge a long time ago. I just couldn’t even imagine the scenario properly in my head. I didn’t even know what he looked like. It made me wonder if I was really this cared for. Not that I didn’t feel loved back then. In fact, before the day was out the first time I was in this whole mess I had gotten a box filled with get well soon cards from my entire class at school. Literally every single person. I’m sure it was something they were forced to do but even then, I could feel the sincerity in so many of the cards, especially the ones from my best friends. To this day I couldn’t ask for better. I still remember how loved I felt reading all of them and to be honest I’m sure they’re still around this house somewhere, but really, cards don’t hold a candle to hugs.
If there’s anything I learned from this reminiscing, it’s that with age, nothing is perceived the same way. In my youth I was blissfully unaware of so many things and completely indifferent to others. At age 20, all of a sudden everything is real and solid, and it felt as if I was hit by a truck. I could empathize with all the people around me and read the tension in the room with ease. The impermanence of my life is a fact that constantly made its way out of my subconscious to torment me. It was a much more disturbing experience compared to me fainting in a taxi, then getting hooked up to a bag of blood and watching TV until I fell asleep while people, time and important details just moved around me. On one hand, I miss my youth but on the other hand I feel like I needed this wake-up call. Maybe I needed to view that situation from a different angle. I know that I learned so much more about myself the second time around. So even though reality may be a little bit scary, it is better than hiding behind ignorance.
Mayo Clinic. (2018). Sickle cell anemia – Symptoms and causes. [online] Available at: https://www.mayoclinic.org/diseases-conditions/sickle-cell-anemia/symptoms-causes/syc-20355876 [Accessed 19 Mar. 2018].
Thrombocyte. (2018). 10 O Negative Blood Type Facts. [online] Available at: http://www.thrombocyte.com/o-negative-blood-type-facts/ [Accessed 19 Mar. 2018].
