 My story begins on November 19, 1985, when I was 11 years old. I was a very healthy and active youngster before everything happened. I was always on the go, always outside playing street hockey with the other kids in the neighbourhood. I was the one who was always knocking on your door asking if your kid could come out and play - and if you said no I'd come back five minutes later and ask again. I was the local organizer, the street leader.
That day, I was at the arena playing in a league hockey game. I was quite good at hockey in those days. The game had just started, and I had scored a goal in the first 58 seconds of play. I skated to the bench after my shift, sat down, and then it happened.
Suddenly, something was very wrong with me. I went back out on the ice, but I couldn't even stand up. I crawled back to the bench. My dad came over to see what was the matter. I looked at him and tried to speak, but all that came out of my mouth was a garbled jumble of sounds.
My dad thought I just needed air, and he dragged me outside. I couldn't walk. I couldn't talk. I couldn't feel anything on the right side of my body. I was 11 years old and I had no idea what was happening to me. It was terrifying. I was taken by ambulance to the hospital, where they did a CAT scan on my brain. I was upset and extremely agitated - apparently I put up quite a ruckus. I was taken from there to Sick Children's Hospital. I remember trying to point to my right side and make my mother understand that I couldn't feel anything there, but my words came out as a scrambled slur.
The next thing I remember is briefly waking up alone in a dark, scary room convinced that I was dying, before conking out again. That was the surgical recovery room, and although I didn't know any of this at the time, I had just been operated on for a brain aneurysm- a ruptured blood vessel in my brain. The brain surgery had been to suction up all the leaked blood and close the open blood vessels. Both the left temporal and parietal lobes of my brain had been affected.
My next memory is my 9-year-old sister Daniela trying to wake me up, and my uncle's voice saying, "Bug him!" It was two days after the hockey game. I was in a hospital bed and I could feel a bandage wrapped around my head like a turban. My family still remembers the emotion they felt when I spoke my first, sleepy words: "Lell (my sister's pet name), leave me alone."
Although I could talk (sort of), I couldn't walk, and the right side of my body remained paralyzed. It's called hemiparesis-paralysis affecting one side of the body- and it was damage caused by the ruptured aneurysm in my brain. One minute I had been a completely healthy and happy 11 year old, and the next, BOOM, I'd had a stroke. The doctors said the aneurysm must have been something I was born with. The stroke was a shock to my family that is hard to describe.
I stayed in Sick Kids Hospital for a month and received physiotherapy, speech therapy, as well as other kinds of therapy. My recovery began. The doctors couldn't believe I was able to walk out of the hospital after only four weeks – dragging my feet but upright and on my own steam. They called me a "miracle child". But there was a long way to go.
I spent eight more months as an outpatient at the Hugh McMillan Centre, where I gradually improved. But my right side was permanently weakened, my ability to learn, even my personality had been affected, and my life had changed forever.
During this time I was very close with my mom, who was very protective of me. Both my parents were devastated. I remember my dad being out in the corridor, kicking the doors of the hospital elevator in frustration.
After the stroke I was put on the anticonvulsant drug Tegretol, and I took my pills for a year without incident. One year to the day after that fateful hockey game I had my first seizure: a big grand mal (tonic clonic) seizure, which lasted about 15 minutes. I was 12 years old.
 Sadly enough, my family had not been prepared for seizures. Although I was on anticonvulsant medication, the hospital had not provided my parents with so much as a pamphlet about epilepsy or how to handle seizures. (That's why the educational role of the Epilepsy Association is so important).
The seizure happened at breakfast. I fell down, unconscious, and began convulsing. My mother didn't know what to do. My grandmother was screaming... she thought I was going to die. My uncle picked me up and carried me out of the kitchen, accidentally banging my head against the wall on the way. Then he tried to hold me down to stop the seizure: all the wrong things to do. I was taken back to Sick Children's Hospital by ambulance and slept for eight hours straight.
From the age of 12 until I was 16 I had three more grand mal seizures. The final one occurred after a homeopathic doctor (consulted by my mother) had taken me off Tegretol. My dad still didn't know the proper epilepsy first aid, and he put his fingers in my mouth during the seizure. Afterwards, he couldn't feel his fingers for six months!
During these years I was having a lot of auras–simple partial seizures-at night. The sad part was, at the time I didn't know that these were seizures, and neither did my parents. I would run into their bedroom overcome with fear, or with the feeling I was going to throw up. Sometimes I was unresponsive when they asked me questions. I was considered to be acting like a baby. Not until I came to the Epilepsy Association years later did I learn that these were indeed seizures.
At age 16 I went back on Tegretol and the seizures have been controlled ever since. Two years after my last seizure, I was able to get my driver's license.
I'm not the kind of person to sit on my butt and give up. I'm a very stubborn, very determined person. After the stroke, I wanted to get right back into my former activities, and was soon rounding up my friends and playing back out on the street. I tried to return to ice hockey - a lot of my self esteem had been tied up with my hockey skills –but because of the hemiparesis, I was never much good at it again.
Once my friends thought they would test my claim that I couldn't feel anything on my right side. Behind my back, they burnt my right shoulder. I didn't even notice. To this day, although I can hold things in my right hand, I can't use it to manipulate anything. I use my left side for just about everything I do.
Other changes have resulted as well. The damage to my left temporal lobe has caused me to have problems with aggression, impulsivity and nervousness. My family tells me that I am not the same calm person I was before the stroke. I also developed Attention Deficit Disorder (ADD) and learning problems.
But I have always believed that there is nothing that I can't do if I put my mind to it. I was not expected to finish high school- in fact, nothing much was expected of me after the aneurysm. But I never gave up. I learned to scuba dive and to drive a motorcycle. I worked in my father's construction business and went onto dangerous construction sites (behind his back). I took risks and did dangerous things. After what I had gone through, I had no fear of death. Still don't.
I went through a period where I felt very sorry for myself. "Pull up your bootstraps," they say. "Don't feel sorry for yourself'. I did "pull up my bootstraps". But what if I had failed at it? How would I be feeling about myself then?
I believe that people with disabilities do need to assert themselves. But you also need a little bit of time and sympathetic support. Society doesn't sympathize very much with the person with a disability. Only support services like Epilepsy Toronto offer that. That gives you strength, and from there you can progress your own pace.
I am an Italian-Canadian, and many people from my culture - like other people out there - are ignorant about epilepsy. Some of them still think a seizure means you are possessed by the devil. My mother was very careful to explain to my grandmother that my epilepsy was neurological. My attitude is, let me go and see whether or not it's the devil. I believe you should think for yourself.
In my culture, the emphasis is on strength-physical strength, mental toughness. It's considered bad to be weak. We are motivated through fear of being "less than" those who are strong. So I was motivated.
But the cultural belief is that if you have epilepsy or any kind of disability, you won't accomplish very much. Academically, no one expects anything of you. No one ever said to me: "I can see you becoming great". This is disempowering to people who have disabilities.
My parents didn't push me at all in high school, and I took advantage of that and didn't work very hard. But then I spent a year "freezing my butt off” working construction in the winter and decided that I had to go back to school and make something of myself I went to college, then to university to study social work.
School wasn't easy for me. Learning disorders from the stroke meant I had to work much harder than anybody else. It would take me 20 hours to finish something that my classmates could complete in two. I'm 25 years old now, and I will graduate this year with my university degree in social work. I have made it my mission to educate people - be it about epilepsy, racism, or any topic where there is a lot of ignorance. I also want to help people. That is the reason I have gone into social work. My family tells me I am like my grandfather. Or perhaps I get the desire to be a helper because of what I went through.
Last year I did my social work school placement at Epilepsy Toronto, counselling people with seizures. Counselling gives me a lot of satisfaction, especially when I've been through the same type of thing as the person I'm talking to. Then it doesn't seem like a job at all.
Bringing epilepsy out of the shadows is very important. People need to be educated about seizure disorders, just like I did, in order to understand. There is a lot of ignorance out there. Recently my dad said, "After what you've been through in your life, it's unbelievable what you've become." People with disabilities need a positive belief system. They need others who can envision them doing great things to tell them: "You can do anything you put your mind to. "
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