I remember that first trip to the hospital. We had to go to Moncton, New Brunswick, from Prince Edward Island to see my father. I remember my mom telling me that Dad had to get a hole put in his head, where doctors could insert a tube into his brain. This seemed odd at the time, but that feeling was compounded when I entered the hospital room. My Dad laid there, locked in a bed. Tubes, IVs, and several invasive machines were keeping him alive. I was terrified, but my mother encouraged me to get close. I looked into my father's glassed-over eyes, and he couldn't even look down. I stuck my tiny thumb in his hand, and it took every ounce of his strength just to squeeze it.
It's fucked up to think that this is one of the earliest memories I have of my Dad. It's the one that gave me nightmares, and the one that constantly forced me to reexamine my ability to love and connect. Growing up with a disabled parent had me constantly torn between the world I was in and the world I thought I deserved. This culminated in resentment that took years to shake, and is still something I deal with every day—even though I know I shouldn't.
I was seven when my father suffered a massive stroke. I remember him being wheeled out of the house and into an ambulance early one summer morning. Or so I thought. My mom tells me I was sleeping throughout the whole ordeal. That's the thing about childhood trauma—it fucks with your head. I had anger issues and nightmares, and routinely blamed my father for his own condition.
Reactions like this are typical. Kids have a tendency to displace their emotions onto easier targets. I wanted people to feel the pain I felt, and my hostility seemed to calm my nerves.
The nightmares were a different story. I had to sleep in my mother's room for a full year after my father had his stroke. I had one reoccurring nightmare, always on a rink, playing hockey. The goalie on the other team was gigantic, and wanted to fight me. It always ended the same: I'd get pumped at center ice. An embarrassingly Canadian recurring nightmare.
My father is paralyzed on the entire right side of his body. That means his right leg is permanently stuck straight like a two-by-four and his right hand is permanently a closed fist. You have to peel back his fingers just to cut the nails—they're almost impossible to move, and it stinks like stale flesh. His balance is almost entirely gone, so he needs a cane to walk. Accommodating his physical disabilities is a daily battle. One that he wears well. His walking cane has basically become a Gopher pick-up stick, as he uses it to close doors, open cabinets, and extend his reach.
He also lost much of his language skills. The first phrase he uttered after the stroke was "22Y." To this day, I haven't figured out what he meant. His vocabulary is limited to a weird word salad for any given situation. The words he loves include: "Good," "thank you," "too bad," "me," "you," "stop it," and "hard talking." There is more to it than that, but those are the favorites. Communication is always an entertaining struggle. Phone calls don't usually last more than 30 seconds, and when my dad is done, he just hangs up, with a "bye-bye" and no warning—it's actually baller as fuck.
His short-term memory is shoddy. He often can't remember where he put something. Somehow his long term memory was unaffected. He still loves to sing the theme to the 1966 Batman TV show, although he really just hums the tune, and says na-na-na-na-na-na nat-man. (He does his best.)
Growing up with this eccentric "broken" man hasn't been easy for my two brothers and I. When we were young, the three of us were vicious towards our father. It started when we were told that our dad's penis was black and blue after his stroke. I didn't understand what that meant, but thought it was funny. My brothers and I would punch him in the crotch, just to keep it that way. We'd lash out at him and call him "retard" or "22Y," and find any way to hurt him with words. We used to piss on his bed when he was at church. We hid his walking cane at any point that we could. We'd ride his wheelchair off jumps and down hills. We basically did whatever we could to make his life a living hell. This all seemed pretty funny to us when we were younger.
He was easy to victimize because I couldn't remember who he was before. He felt like a stranger limping around my house.
We lived off of disability checks. In Prince Edward Island, the Canada Pension Plan now provides up to $1,264.59 [£623.84] plus $234.87 [£115.86] per child. As per the CPP, the disability benefit is not designed to pay for such things as medications and devices. You're told to contact your province if you need financial assistance. My father needs a handful of different pills each day to stay alive, and PEI deemed us ineligible for any further benefits. So that support was often hardly enough to get us through the month, and we were living disability check-to-check. I can remember being told we were going to have a tough weekend, because something went wrong and the money wasn't going in the bank until Monday. This taught us the value of what he had. Kraft Dinner and hot dogs were my favorite foods growing up.
You need to appreciate someone just for being there. A disabled dad is better than an absent one. That much I know. But, living with a person who requires constant care makes you very aware of your own compassion. You need to be selfless and patient. These attributes took time for me to develop. I started to realize that this man, introduced to me as my father, would need help to get back on his feet.
It took ten years before I cared about that. I was becoming an adult and I wanted to talk about my world outlook, I wanted to be challenged by my father, and I wanted desperately to know if my anxiety and drinking was hereditary or just my general shittiness.
From what I know now, my father used to be an angry person himself, not too compassionate, and certainly not patient—he embodied selfishness. Today, however, he's kindhearted, patient, and filled to the brim with love. He mows the lawn; he does the dishes and the laundry. Despite his condition, he's never putting himself first. In fact, he now lives for others. You can see it with our dogs. They depend on him. He feeds them, he walks them, and he depends on them. Pet therapy is a real and wonderful thing.
You'd think somewhere during all this that friends or family would come in to help. They did at first, but they never stuck it out. I was always left wondering when the cavalry was coming back but, and as it turns out, they never did, and they never would.
I still deal with the anger some days. It's inevitable. I try to remember that above all else, I still have a strong father, who's determined to be part of my life. I used to disown him, thinking he was broken, but I now realize he's more complete than ever.
I'll never really know who he was. I'm not overly concerned about that anymore. No amount of recovery will bring the old him back, despite people's condescending comments on "how far he's come." I had to let go of all this to cope with my reality. I don't need to know what came before.
Turns out, as you look around most people don't have the "typical" family structure. We don't often talk about disability, but about 3.8 million Canadians (13.7 percent) reported having a disability in 2012. Most people affected by disability are afraid to admit that it bothers them. But it's OK to ask for help, it's OK to think the whole ordeal is strange, and it's certainly OK to be angry. But, it's important to not let anger empower your relationship with a disabled person. Instead, seek help, talk to people, and admit defeat. Learn from their example, because if life knocks you down, you can pick yourself back up again, even if you have to learn how to do it, in the process.
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