Newsletter #1 - The Joy of the Fight

My stroke in April 2021 ushered in an unprecedented era of creativity, introspection, and personal growth.

This is the piece that started it all, written in the hospital in Mission Viejo, a short essay titled “The Joy of the Fight.”

The Joy of the Fight

I realized I was in a fight about two or three weeks into my hospital stay, around the same time I realized life wasn’t fair.

Prior to my stroke, I was a young, ambitious 20-year-old college student at UC Irvine. I had friends, passions, dreams, and too many aspirations. I loved the warmth of the sun on my skin walking to class, I looked forward to blueberry pancakes in the cafeteria every Friday, and I had been meeting with Spanish speakers over the Internet for weekly conversations to try and become fluent.

An AVM is what the doctors called it – an arteriovenous malformation – a tangled mess of blood vessels in my brain that decided to rupture one day and take my happiness, my plans, and my livelihood along with it. In an instant, as the bleeding spread through my brain, I was forced to part with my friends, the Anteatery’s delicious pancakes, and my language learning passion – plus the friends it had given me.

I remember the moment I found out my brain had been compromised from within by such a vicious attacker.

I lay in the gurney, cold and uncomfortable, blinded by the bright fluorescent lights of the hospital above.

Confronted with such an unjust enemy, I realized I had no choice but to fight. To fight for who I once was.

I suddenly understood the Protestant work ethic, the idea that after Martin Luther showed that religious works and ceremonies were meaningless towards one’s salvation, Protestants who suddenly felt lost and powerless wanted to be able to do something about their lives. 

With the stable foundations of their faith suddenly removed, they wanted to feel like there was something tangible they could do to work towards salvation. 

Nobody wanted to be labeled a sinner at birth and be left powerless to change their outcome. If showing up to church each weekend — which had worked for centuries — wasn’t enough, they needed something else to lean on, something they could actually do to change their fate.

As a result, they clung to the one stable foothold they could find, the one certainty in their lives: their jobs and their work. It was something they could be sure of, and by showing up and putting in the work each day, they felt that they were, effectively, able to do something about their destiny. Their blood,  sweat, and tears served as a sign that they were doing good in the world — that they didn’t deserve to go to hell.

Suddenly faced with the unfairness of life, dealt to me by an unexpected stroke rather than a reinterpretation of the Bible, I also wanted to be able to do something about it. I didn’t want to be that 20-year-old kid, who, after having a stroke, was fated to lie in a hospital bed for the rest of his life.

I realized one thing I could do about my situation, instead of fully committing to a 9-to-5, was to fight back in my own way. To fight for who I once was.

Because I wanted to be the young, hungry 20-year-old student, not the weak, bed-ridden hospital patient with my left side paralyzed, surrounded by feeding tubes and IVs, my life governed by therapy sessions, pre-prepared meals, and whatever my dad felt like letting me do that day.

I wanted to be a normal 20-year-old kid again. Or at least, to do things other 20-year-old kids my age were did doing.

Last I checked, normal 20-year-olds didn’t get strokes, or spend all their time lying in hospital beds.

I wanted to lie sprawled on the couch one more time, watching my housemates run game after game of Super Smash Bros. Ultimate, instead of sprawling out on my hospital bed, my back aching from pressure sores, staring fearfully at the six large pill capsules sitting in front of me — my daily medications. A painful needle injection in my stomach would come later, I knew — Lovenox, the blood thinner doctors had prescribed for me.

I wanted to stick my feet in the sand at Corona Del Mar State Beach one more time, letting the cool water run between my toes, instead of propping my numb, lifeless left foot up on a pillow every night, shaking it to dispel the numbness and tingling I felt every few hours that meant sensation was returning to my leg.

I wanted to slump over at my desk one last time, fending off my drooping eyelids until the end of one more Zoom lecture, instead of slumping over my meal tray, exhausted from physical therapy, cursing as I struggled to cut my steak and peel my bananas with only my right hand,

I wanted a way to fight back. To fight for the old me. I wanted to be a normal kid again.

In order to fight, I would pour all of my time and effort into my recovery and my daily therapy sessions, always giving it my all, hoping to show my AVM that it would take more than a stroke to stop me and convince myself that there were still things in life worth living for — and a reason to haul myself out of bed each morning.

Fighting was basically all I could do. I had a lot of pent up anger at the world that had let me have a stroke, with nowhere to direct it, a well-rested brain, and a lot of free time.

Fighting was also a way for me to combat the feelings I had when I saw my nurses walking around, bending over, and lifting up my meal trays right in front of me — all things I could’ve easily done a month ago but couldn’t do now. Or when I would struggle to put on or take off my shirt for an eternity and then watch my dad or a nurse do it for me in a couple of seconds.

These were all things I could have easily done before. But all I could do now was slouch in my hospital bed, gawking at all the doctors and nurses who walked in, answering with a painful “I’m well” to every “How are you?” I was woken up by. How truthful my response was, I’m not sure.

I continued the fight day in and day out. As my physical therapist Anthony kept telling me, my recovery was now my full-time job.

I began to treat it like one. I felt like I was putting in overtime.

I woke up each morning with a vengeance, swung my legs off the bed with slightly more oomph than before, and kept going for a few minutes more during therapy, long after my buttocks and back muscles, weak and atrophied after a month of lying in bed, began to complain.

I waged war on my stroke in any way I could. Sometimes I even chewed my food harder to show it who was boss, just to feel like I was still in control of something in my life.

“Take that,” I thought, grinding my teeth together unnecessarily hard over strands of roast beef. “My name is Mingjia Wang, I’m twenty years old, and when I get out of here, I will return stronger than ever.”

But not every eating experience was just as pleasant. Somehow, breakfast was the worst part of each day.

The bleeding in the brain had gifted me with many swallowing problems. The mechanics of swallowing are some of the body’s most complex, and the stroke had left me with tongue and throat weakness and numerous swallowing issues.

As a result, I had to chew each bite 50 times before I could safely swallow it.

And I usually took minutes between each bite, thanks to the tasteless nature of the slushy scrambled eggs, salty sausage, and papery pancakes they served every morning.

Both of these things, put together, meant that I had a lot of time every morning to contemplate my unfortunate situation.

Sitting alone in my room, slumped in my wheelchair, I stabbed at my mushy scrambled eggs.

I could hear the sounds of the hospital outside my door: the beeping of blood pressure machines, ongoing therapy sessions, the coughing of other patients, nurses gossiping about their patients, a hospital-wide loudspeaker system that broadcast depressing messages throughout each day. Code stroke, ER bed number 11. Code stroke, ER bed number 11. Code trauma, tier one, red, it rang.

I took another bite of my food, tired and  miserable.

Here I was, a sophomore in college, sitting by myself in a hospital room.

I had had a stroke, my left side couldn’t move,  and I had daily headaches.

I had to call for help to use the toilet. My only other option was a urinal — a small, water bottle-sized plastic container for me to pee into that took a surprising amount of mental concentration and aim.

Other people my age were probably outside playing basketball, getting food with their friends, or in class, pursuing their passions.

Over hard, flavorless bacon and beef that tasted like cardboard, I asked the world why it had chosen me, of all people, to have an AVM and a stroke. Why I had to waste my life away in a room like this. Why I couldn’t just live my life like other kids my age.

But even while having such depressing thoughts, I realized one positive thing: The most joyful part of my hospital stay — much like any battle — were the victories. About a month in, they started to pour in. They were small, but they were numerous, and they felt so good. They started when I had a feeding tube removed from my nose, continued when I went from failing a swallowing evaluation to eating real, solid food again, and multiplied once more after I walked 20+ feet with the help of parallel bars and a walker. With each victory, my eyes welled with tears, and I struggled to find the words to describe my joy.

“Fuck yeah,” I remember uttering under my breath while lying in bed. With each win, it felt like things were slowly becoming right in the world again.

It suddenly began to make sense. Life had given me the ultimate gratification set-up. After having my stroke, after I had lost everything, the only thing left for me to do was win.

I became addicted to winning. It was too easy. I was overcome with joy.

Some of my most joyful victories:

May 25th, 11:20am: I walk more than 20 feet, aided by parallel bars and a walker.

May 28th, 7:00pm: My left arm, after remaining dormant for a month, begins to move again.

I wanted to live in this world, a world where I was only allowed to win, not a world where random twenty-year-olds could have everything stripped from them in an instant by blood vessels rupturing in their brains.

It was the world I had known before, for the first nineteen years of my life.

And as I navigated this new, unfair world, I began to realize that fighting, surprisingly, involved a lot of waiting. I probably spent ninety percent of my time waiting for care packages and reinforcements to aid in the fight.

Especially when my energy and motivation were down in the dumps, and I needed visits and visitors to provide a morale boost. 

These visitors, my friends and housemates, were the reinforcements, and the snacks and gifts they brought were the care packages that reinvigorated me and motivated me to continue the fight.

They cheered me up completely, and I spent the time in between visits waiting and counting the days left until the next one.

If it was 10 in the morning and a housemate was coming at 5 p.m., I would lie in bed calculating what the next seven hours entailed. My inner monologue went something like: So I have to make it through speech therapy at 11, lunch is coming at noon, and there’s physical therapy at 2:45. Ugh. Why can’t five o’clock come any faster?

And if it was Saturday and I knew my mom was coming back next Saturday, I would spend the next seven days trying to find ways to warp time, to make Saturday come faster. 

I spammed the nurse call button to ask what day it was, surprising nurses who sprinted into my room thinking there was an emergency by saying, “Hey. I have a question. Is it Thursday yet?”

Indeed, the entire hospital stay helped me realize one thing: I was nothing without my friends and family.

Each time they visited, I was an energetic,  charming, and funny young man. “The recovery’s going really well,” I would always tell my visitors, giving them a lopsided smile.

But whenever they left, I was a distraught and lonely mess. 

So I’d like to give credit to everyone — all the friends, club members, housemates, therapists, patient care technicians, and nurses — who, without asking for anything in return, came to visit me, comforted me, brought me food and feed me, changed my soiled sheets, entertained me, and lent a helping hand to a skinny, exhausted Asian kid engaged in a fierce battle.

“My favorite part of my job,” one of my nurses told me one day, “is seeing my patients get better.”

 It seemed like all the other hospital staff shared that sentiment, from the neurosurgeons who performed a life-saving craniectomy on me during my first days at the hospital, to the speech and physical therapists who fought with me in their own ways, leading me through therapy session after therapy session intended to wake up my sleeping left side and help me walk and move again.

But And I am forever grateful that my friends, family, and hospital caretakers woke up one day and decided to march into battle with me. I would not be writing this if it weren’t for them.

One of my favorite gifts was a poster from a club I’m in at school, filled with “get well soon” messages, shared memories, and inside jokes.

It provided some much-needed comfort and support In the early days of the fight, and I felt like I had to continue fighting — and win — to return the favor.

The funny thing is, although the fight kept me motivated, it wasn’t a very fair one.

The battles felt childish, almost pointless. I struggled with things that would’ve been easy before my stroke.

Lying in bed, as I tried to wiggle my left arm and leg, it felt like I was yelling at deaf people. “Please, just fucking move,” I screamed at my left elbow. It continued to sit there, unmoving, much like my left foot.

I felt like Sisyphus climbing his hill, only the hill kept growing taller and was always just a millimeter beyond my reach.

 Every time my left leg moved, I felt tears forming. “It’s like an old friend has come back to me,” I remember telling my physical therapist.

Although my left leg was a longtime friend, it’s a shame it wasn’t a great conversation partner, which I sorely lacked.

Because, during my hospital stay, I grew to love talking.

Each day, I talked more than I ever had before, to anybody who listen. My sharp, dry sense of humor was on full display.

I feel truly sorry for the nurses and patient care technicians who were unlucky enough to respond to my statements and found themselves dragged into long conversations filled with bad jokes, self-deprecating humor, and incessant questions about nursing.

But each time I projected my gravely, worn-out voice into the empty space in the room, I felt like I was being heard.

“You’re pretty funny,” a therapist said to me one day.

“I know,” I responded.

“Have you always been a driven person?”

“Yeah, man. For the first half of high school, before I got my driver’s license, I was being driven all the time,” I quipped.

The therapist chuckled.

 I realized that was all I really wanted. To be heard, to be acknowledged, to know that people recognized my fight, and that I wasn’t battling silently or alone.

The first few weeks, where I felt frustrated, helpless, and alone, were some of the worst.

But they quickly came to pass, and the anger, discomfort, and exasperation gave way to victories and jubilation.

In the midst of all the victories, I also grew to love walking. Each step I took, with or without a walker, brought me closer to my old life.

With my therapist at my side, I took a deep breath, then stepped through with my left foot, placing the heel gently on the ground.

Straightening my left knee, I forced my left buttock backwards, feeling the stretch in my hamstring.

I transitioned the weight from my heel to my toe, moving my right leg forward to complete the step.

Walking was purposeful and methodical, and it just made sense, which I couldn’t say about a lot of other things in my life during my hospital stay.

Weeks ago, I had decided to fight, because it was the only thing I could do.

Turns out, it was the right choice.

Munching on my hospital food, I smiled.

I had won the fight.