parental disability

Illustration by Joaquin Kunkel

Disability: Thoughts from the Sidelines

There’s nothing quite as harrowing as teaching the alphabet to the person who taught you how to speak.

Oct 1, 2016

There are two types of cold in hospitals.
There’s the unforgiving air conditioning that hits you in the face as you enter through the automatic glass doors. It blasts from the sterile vents in corridors, through colorless lobbies and into crowded wards. It creeps up the leg of your school uniform’s unflattering grey trousers and burrows itself into your clammy skin. You shiver and wrap your garment of choice slightly tighter around you, making a mental note one more time to bring an extra sweater on your next visit — not that you remembered to bring one the last 52 times you were here.
There’s cold. And then there’s the intensive care unit.
You step in, and everything immediately shrivels up. Sounds vaporize. Colors stagnate. Your skin scrambles to turn itself inside out. Even the shivers seem to want to escape into a warmer body.
Rows upon rows of silent wards stretch as far as your bespectacled eyes can see, each with eight beds, sardined carelessly next to each other. You avoid eye contact with numerous haggard faces and blank stares. The few visitors float. Breaths become sighs.
And to your right, in the second to last ward, you recognize the bed number, the sheets. Oh, and the smell.
You recognize every single detail, everything but the face, even though you try so hard to remind yourself of how he used to look, for the last 52 times you were here.
A nurse walks past and pauses, smiling at you sympathetically. You stare back blankly, because you’re still too young to understand what sympathy looks like. To you, she just looks like a nice lady.
She comes around the bed and leans over, locking eyes with the vacant irises that float aimlessly in his eye sockets.
“Your son’s right here, Mr. Chan,” she whispers in Cantonese with a wistful smile.

There are three types of strokes: ischemic — a consequence of a blood clot, haemorrhagic — resulting from a ruptured blood vessel and transient ischemic attack — a result of a temporary blood clot. Ischemic strokes and transient ischemic attacks are the most common, contributing to almost 90 percent of all stroke cases, while haemorrhagic strokes have a higher fatality rate, claiming the lives of 40 percent of stroke patients, 66 percent of whom would suffer from permanent neurological deficit.
My father had a haemorrhagic stroke when I was 11 years old, when an aneurysm ruptured deep at the base of his brain. Doctors said that given the type of stroke and the location of the rupture, the survival rate was 10 percent at best. Of those who survived it, 70 percent would never regain consciousness. 20 percent would be bedridden for the rest of their lives.
I don’t remember when I learned all of these facts, but I do vaguely remember my mother frantically collecting health pamphlets, grotesquely coloured and illustrated with nameless silhouettes and cartoonish organs. It seemed at the time that the person my father used to be had simply disappeared into an ever-growing pile of books, online articles, newspaper cuttings and handwritten notes. As we learned more and more about who he had become, we forgot more and more about who he used to be.
My father was a rebellious child, running around in a small town in China with a gang of children at his side. He was always perceptive and outspoken, celebrating his quick wit as captain of the debate team in high school. Never having attended college, he pored over books and newspapers and loved discussing everything from Chinese history to Latin American politics. He loved traveling, and spent many business trips exploring different cities in China. He also made sure that my brother and I saw as much of the world as we could, taking us on trips abroad whenever he could manage to squeeze in another vacation.
He used to be so many things. But I could barely remember who he was every day I visited him. The stroke had robbed him of his ability to speak and move, and had contorted his face into a permanent frown. But we could still see the despair, the humility and the anger in his eyes as we wiped his body, brushed his teeth, taught him how to speak and changed his diapers. He used to be so many things, and now he was at the mercy of his family. Even as a young boy, I felt the grotesque irony of his situation.
There’s nothing quite as harrowing as teaching the alphabet to the person who taught you how to speak.
Thick-headedness has always run in the family, and one day my father chose to demonstrate this. He decided that he would rather die than sit in a wheelchair, and so he insisted on learning how to walk.
Doctors poured in to advise against it. His best friends knelt in front of him, begging that he use the electric wheelchair. He, however, was done with being an invalid. He was tired of relying on other people.
“There is nothing more heartbreaking than having your freedom taken away,” he told me afterwards.
Nobody was able to change his mind, so we placed him in intensive physiotherapy and wished for the best. He struggled, he fell, he unsuccessfully got up, fell again and struggled some more. With every step, we saw the excruciating physical and mental pain he experienced.
The hopelessness of a bystander — being unable to relieve a loved one in pain — is perhaps one of the most draining emotions that exists.
Months passed, and to the surprise and admiration of everybody, he began to be able to hobble around with a cane. He began pushing himself further, walking as much as he could. We lived on the sixth floor at the time, and every other day I would join him on his stair exercises, watching and listening as he groaned and huffed with every single step. One flight of stairs would take us 15 minutes, and by the end his entire shirt would be soaked. He complained time and again, sure, but never did I once see him take a break. He trained arduously and regularly, until he felt confident enough to start appearing in public.
But nothing could prepare him — or us — for the looks.
Just with a simple ruptured blood vessel, my father became an outcast. The stroke had left his entire right side paralyzed, and his arm and leg were permanently crooked, the latter of which he had to swing around for every step he took. People stared at his strange walk with questioning eyes, or simply avoided interaction altogether. Children hid behind parents. A hush followed him wherever he went, as if people were afraid to make any noise in his presence. The prideful man that my father was, he looked on as if nothing was different, but I knew that inside he felt overwhelming shame and disgust towards himself.
I am ashamed to admit that my younger self was angry at him, angry that he could not be normal, angry that I was now the kid with the disabled dad. For many years I could not forgive him for what he had done to me; I resented him for who he had become. I resented the many eyes boring into my head as I helped him undo his fly in public restrooms, or as I slowly walked by his side in a crowded mall, or as I wiped drool off his face as he spoke. I resented the whispers and thoughts of onlookers, and pictured them in a carnival tent, applauding and jeering as the circus freaks put on a show. I resented his tantrums and my mother’s passive aggressiveness toward him and myself. I resented my schoolmates whom I never considered as close friends. They would speak of weekend excursions and after school activities with their parents as I listened in silence, biting my tongue in anguish.
Most importantly, I resented being me. My younger self wanted to live a normal life, where all I ever thought of was what classes I took, what friends to grab lunch with, what girls I liked. Instead, I learned about muscle tension, haemorrhagic strokes and painkillers. I learned how to use a manual sphygmomanometer, how to read an MRI scan, how to best catch a falling adult. All of this information became routine for me, as family conversations never veered far from my father’s health updates. It wasn’t long before I lost sight of who I was, because every minute of our existence was now in relation to my father’s wellbeing. And so, in a bout of prolonged exhaustion, I gave up being me. This led to destructive thoughts and behaviour, some of which have left ugly scars today.
This November marks the eleventh year since the stroke.
The road to rehabilitation, healing and understanding is long and winding — much like this article — and I would be lying if I told you I knew where it led. Hell, I’m only halfway done with this road. But the part that I have walked has been quite the journey.
I wish I could tell you everything I learned in those 11 years, but that could easily be an entire book.
Instead, as a parting thought, I would like to share one last anecdote about my father.
Months after learning how to walk, my father decided to visit his old office, which was located on the 28th floor of a nondescript office building somewhere in Hong Kong. The elevators of the office building regularly got stuck, but nobody seemed to mind the waiting time. As my father walked toward the elevator with me and my mother, he stared at his reflection in the elevator door for a brief second. Eyeing himself up and down, he turned around to look at me.
“We’re taking the stairs,” he asserted. My mother was livid, but my father was determined.
So we took the stairs.
It took us almost two hours, and when we got to his office, he received a standing ovation. He just smiled, sat down and started to chat with one of his employees.
Now that’s pretty cold. Like, intensive care unit cold.
Garreth Chan is a contributing writer. Email him at
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