I Know Why Babies Cry: A Deconstruction (BMT to Post Day 8)

Being born hurts.

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Being born again, if I had to bet from personal experience, probably hurts more. I can’t tell you for sure — I don’t remember the first time — but that within itself is probably an affirmation. The remembering part makes the second time worse my default; as does the self-awareness and cognizant thought. Babies have nothing to strip away. A twenty-year-old person has much something to deconstruct.

I’ve never realized how the world is so much of everything at once; how nothing makes much sense. With a single breath, we put ourselves into the world; eventually into the outside. A wonderful, terrifying place. But at first, we are everything possible — the excitement for potential. All of everything; so is everything else. The lights are bright; the air is fast. Heat and cold are twin siblings with equally terrifying results. Most food is dangerous. Moving a limb takes more energy than you have; your own weight is heavier than what you can muster. Crawling across the floor is an accomplishment. Getting out of bed is a feat; every morning you wake up with a cry and a groan. Not because it hurts, but because you have to do it again. Every second of every day is dictated by something — always protective. You are never left alone — even if you are physically alone in a room someone else is present. You spend most of your time half naked in front of other people and the other half wearing clothing that, if you suddenly dropped to the floor, would still be appropriate attire. Anyway, being born again is hard.

 

Over the course of the last 30 days, I have watched my body degenerate from the inside out and begin to reform itself. While I knew that getting a bone marrow transplant would be a transformation, I underestimated what it could mean. The possibility of total deconstruction; from one blood type to another. From an uncureable autoimmune disorder to a brand new beginning.

But before I could begin, it had to be taken away.

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The process of deconstruction of my body was slow; fast if you think about it relation to the 20 years of life it stripped away. I shaved my head two weeks before transplant admission to give myself time to adjust. For me, that was symbolic beginning. Once I was admitted to the hospital, I began to watch myself wither, simply because I was there. From the beginning, there were bumps in the road. The procedure to put in my medication port was stalled for the entire first day; with me being taken into surgery at past 9pm at night after 24 hours without food. The first time I saw myself in the mirror, it felt as if something else had been taken away — visually, I’d crossed into hospitalization. There was no going back.

The days that followed were an adjustment period, with new medications everyday and a schedule of therapists. Everyday my limbs felt a little heavier; my thighs and calves shrinking into sticks. My fingers trembled and writing with a pen became more difficult. The first time the nurses gave me chemotherapy, I cried because I knew what it was and not because it hurt. Knowing, once again, that I was crossing a benchmark into something that I could reverse as long as I lived. From that point on, Chemotherapy went easily for me, despite my liver throwing a giant fit in the middle and some slight nausea. In transplant world, chemotherapy is considered the easy part. The side effects typically don’t settle in until after the day transplant.

My second birthday was extremely anti-climactic, but meaningful. By the stem cells were finally delivered at 11:30pm at night, we’d been waiting in anticipation for hours. Finally, the nurse practitioner brought the bag in and set it in my hands.

“What does it feel like?” My partner asked, gently holding my hand. My parents stood against the wall, holding both of my siblings on Facetime. Here was the moment I’d imagined for months. The moment that was supposed to give me years. Day zero.

“It feels like… the rest of my life, I think.” I sniffled.

Like, everything and nothing. All at once.

I laid back on the bed and watched carefully as the red in the bad got closer and closer to my chest in the tube; disappearing under my skin. I don’t know how long the infusion lasted, although I do know that I got about twice the average number of stem cells for a transfusion (which ended up being significant later on). What I can tell you for certain, though, is that I have now felt what it is to be the physical embodiment of nothing and everything at once, and that it is spectacularly terrifying and wonderful, because now the only place to go is forward.

Over the course of the next two days, the side effects of the chemotherapy began to set in. The rims of my mouth began to shrink. Within a week I could no longer drink, and, although I never lost the ability to eat, I lost my sense of taste completely. I could feel my innards of my stomach whenever I moved; sores forming in my intestines. In order to keep myself off of IV nutrition, I started forcing myself to eat only protein and immediately took dairy, all sugar, high sodium, all caffeine or special drinks, and salt out of my diet. This left me with hard boiled eggs, cheerios, and the occasional popsicle as my entire dining menu, although not being able to taste anything ended up benefiting me in the long run. Any time I felt my mouth start to form a sore I immediately sucked down two popsicles and brushed my teeth. Despite the fact that I couldn’t drink (anything liquid was immediately turned into acid in my stomach and tried to escape) I figured out that semi-liquids didn’t cause me as as much pain (going in and out). As you can imagine, going to the bathroom quickly became a 20 minute process of which I spent most of my time trying to figure out where, exactly, the blood was coming from this time and why, exactly, my stomach had decided to purge it’s entirety. Or even why, exactly, it hurt as much as it did (and then of course, there were lots of questions about what, on earth, was that and should I be concerned about it?). I was hooked up to an IV pole constantly — all medication given IV. I had a little bright green button for pain that I pushed occasionally that pushed morphine. My blood work tanked, starting around day +2 post transplant. We expected it to stay there for two weeks minimum.

This is what life was like for me at the brink of nothing. No blood type; no immune system. To be absolutely empty except what’s going on in your head. It’s an odd place; to wake up in the morning and know that you’ve got nothing left — but to feel as though you are so much. To feel love and intimacy with others without touch. To know that there is so much of the world without sight. To have faith without the ability to explain.

For the last five years, I’ve often felt split into pieces. I’ve been depressed and anxious; spiritually split in a million directions. My world has felt like quick sand; a forrest on fire with relentless speed. But in that room, for the first time, I felt the opposite. Like all of those little pieces fit together at last and I was staring at the result in the mirror every morning. There, at my lowest possible physical point, all of the pieces of myself felt clicked into place. Perhaps because my body wasn’t there anymore for it to matter. Perhaps it was the lack of distraction. Perhaps because I realized that I didn’t need it like I thought I did. Perhaps because when you look in the mirror like that, you realize that somehow — despite the utter nothingness your body has suddenly become — you are still somehow there in your entirety as well.

I was whole. I am whole. Everything at once.