By Founder, CEO and President
Bruno Fiacco
On a very personal level and matter, an intellectual one, my father did take me on skiing and fishing trips along with my uncles, many, which was very fun. That was until ten years of age once diagnosed with Epilepsy. It was quite difficult taking care of me, worried, and I do not blame him for the choice because I would have done the same.
NOTE: At the bottom of this blog is a video of an example of a seizure that I had while filming my first AHFE video with my wife and Co-Founder, Michelle. Please do not watch it if you feel like you can't handle seeing an actual seizure. However, you will better understand what I go through daily and why a cure is needed for this disorder.
And this occurred in 1990, in 5th grade when I fell back from a cheap computer class chair, waking up in hospital, totally naked under a white hospital gown. I was told by this doctor that it was a sleeper from birth, something that I had never been told before. My future nightmares did prove the point including my first pediatric neurologist who was so strict to her pediatric policy (whatever that policy of hers actually was), it was similar to stepping into a court room to see Judge Judy Sheindlin, but a much angrier version and they looked very alike. A neurologist is supposed to be sympathetic, therapeutic-like along with plenty of insight, except this one was just crazy on all levels, it was a freak show every time we went to see her (and by we, I mean my parents as well).
I recall being a faint, and I don’t recall much. I was laid down on a bed or couch, sort of out for the count, until I was able to rise again, like a mummy almost, and from that hospital visit I was never looked at the same way, from schoolmates, family or friends. But I was not an outcast.
Playing outdoor sports, my brother Chis was always there to stop whatever game, basketball and street hockey mostly, and my friends always understood because I was never shy about the condition. But Chis wasn’t always there.
Playing baseball in our neighborhood Little League became a challenge as well, not so much in fielding because I did play most positions, infield and out, catcher even, which I enjoyed. while not being able to touch the ball with my bat it was quite embarrassing swinging high or low, to early or late, left or right, and it was a reason that I know now more than before never touching the ball with my bat. My mechanics weren’t quite working properly as all the other teammates were and I didn’t know the reason. This turned me into what people call “A Bench Warmer”. Chris on the other hand was better than I in every sport, and for that time I could never understand the issue as I do today.
Soccer in my grammar school wasn’t any different. As much as I could kick the ball as well as others, learning from backyard or street practice with my father and friends, once games began (and I did go to every single practice) my teammates, as if you wished to call them, not once ever passed me the ball. So, I figured if they aren’t going to pas me the ball, why not try to have it kicked to me, as in playing the goalie. Again though, our coach didn’t like me very much in any possible position, keeping me behind the line for the entire game, as you would call “A Side Liner”. My mother and father showed up for every game, whichever sport, to basically just watch their boy sit or stand, I sometimes embarrassed, while waiting to be sent in. My parents, and others as well, had some harsh words for our soccer coach because he was quite “The Jerk” as many liked to say.
And I was bullied for some time until High school where I had many new friends, but I never let one idiot ever beat me down or cause me any further issues than the one that I was pursuing and nor should you.
After some time, after school street hockey began to take a toll on me in my late teen years so I again chose the position of the goalie. Now, at about 18yrs old, my friends and I began to turn our roller blades into ice skates. Very easy and like each other we had our parents fish out $100.00 for the Minor League Ice Hockey Team which worked very well for everyone, but myself because when the new year started I was very unable to play. The tickets being non-refundable caused my parents to get angry at me (nobody’s rich).
So, from 20 to 30 it was biking and local gyms that I started at 15yrs once it opened around our home corner, and has paid off til’ these days and the same distance from work when a NYSC opened its doors while working solely for a job of and for insurance by Empire to cover my immense amount of hospital and medical bills that went through the roof, still today.
My job for the most part, although early in my working years I had my boss lend me his couch when he found me asleep, on my desk, and of course angry most of the time, but did have an open heart for the affected. For a word of advice; Always keep a slip from the medical tube, from the medication you are on to guarantee your boss from firing you before being sued for equal opportunity employment due to:
Dizziness.
Drowsiness.
Sleepiness.
I enjoyed speed walking, jogging with some running along the Little Neck Bay shore closest to home finding myself faster then the rest on foot or pedals. My job in Manhattan ran along the Hudson River where I always enjoyed an afternoon or after work walks staring into the beautiful skyline.
At 30 I had no choice but to be put on disability with a 15yr resume of work from Social Security and a disability program payment at the end of every month. It isn’t much, but its something just to get by.
From 20 to today I chose my neurologist myself due to my parent’s foolish choices, all that I disliked until a found a team at NYU and the FACES (Finding A Cure for Epilepsy and Seizures) program which at the time included Dr. Ruben Kuzniecky who is currently part of North Well Health and The Dream Fund. An organization which my A Hero for Epileptic’s organization is this year a part of.
My life isn’t what some people believe it to be today just because I sit at home, reading, working and studying for an organization and an epileptic blog page under my own name that I began 4yrs ago for epileptic individuals like myself who wish to learn about seizures to my own horrors. This current epileptic news which is not anywhere else to be found (And I haven’t ever read a blog to date other than my own, especially to epileptics needs and wants) I wish to change and raise awareness of Epilepsy world-wide.
But epileptic lives like my own have a tremendous amount of pain and struggles with many close to death and battles just to stay alive for others in need.
What epilepsy does sometimes, besides discontinuing a person from ever driving a car, a piece of machinery that serves no real person’s purpose (as most solely think) is your entire past life away, present and sometimes future from ever being able to walk in the house or out. I’m not speaking about being paralyzed or wheelchaired, but not able to make a move without a parent or caretaker’s assistance or guide.
Just from moving one muscle in your hand, people raise their heads and begin to wonder why?
Just ask my pooch, Sammy, who can never catch any sleep with his eyes always on me, neck up, legs jumping ready to call for help when its needed.
That’s just life, as many say, but its also the sadness when speaking about epilepsy to epileptics from an epileptic’s life story true point of view.
Being that as it is, most people have Netflix these days, or ways of sharing accounts with others. Growing up in the 1980’s, there is a Netflix original series which hits home more then you would like your home to get hit. But for those of you who are still confused by not knowing or having a vivid reference mainly because you have or haven’t ever seen a seizure before, it’s what happens on the inside of us rather than the outside, while yes, an epileptic shaking, quivering on the cold ground, foaming at the mouth may scare you to high heavens running away from an incident that needed helping, I like referring that to Your Highway to Hell.
This is best understood by trying to show the world what epilepsy is like.
It is the best way of explaining what a seizure is, what a seizure does and how seizures hibernate in our epileptic brains like the monster that hibernates and grows bigger, stronger and meaner, like the monster that lives in The Upside-Down, unable to kill, from Matt and Ross Duffer’s Stranger Things.
I resembled the character of Steve Harrington, played by Joe Keery, with the wacky hairdo and mullet that I had sitting in class while putting pencils in it (what would you like me to say, some classes were boring, most actually), but I was not the bad-ass kid that Steve Harrington portrays in Season 1 with stupid unworthy friends. I was the Steve Harrington in Season 2. The Steve Harrington who is now all alone in the world while trying to understand the inevitable, and can’t find the right girl of his dreams because those days are over for Harrington.