Possibly The Greatest Day of My Life

On Monday, August 31st, the day after my website went live and on Michelle’s sister Nicole’s birthday, it turned out to be one of the Possibly Greatest Days of my life. To start Michelle and I had contacted Nicole to wish her a happy birthday much earlier in the day and I had told Nicole to check out my new yet unfinished website. It’s because of this that at night Michelle and I got a very exciting late phone call. I was in the living room on the floor reading when Michelle walks in telling me that she had Nikki, her fiancé Chris and his brother from Colorado on the phone and wanted to speak to us. I said sure, what’s up? Nikki said that she had met a guy in a bar and that he wanted to speak to us so we said okay put him on, wondering what it could be. So he started to speak, said that he had just seen and read my new website and was asking if I was interested in working on a project for epilepsy awareness. I said okay, go on. He said that he was from Colorado and that his brother had invented the Charlotte’s Web medication for children and that he needed an adult living with Epilepsy, a bad case, to work with.

Michelle and I were both excited about it, she emailed him the next day and we planned to meet him that week since he was leaving back to Colorado on Saturday. When the phone conversation had ended, we received a text message from Nicole that read, meeting him had made her day. Now I never made anyone’s day before that I can recall, told Nikki that she was the first person to of ever made their day, not to mention on their birthday! So that made my heart stop and put tears in Michelle’s eyes.

Thursday came along, it was Labor Day weekend and Michelle had a half day off from work, came home and we had spent the next few hours in the city and awaited his appearance not knowing anything about this guy. We called Nikki and she said that he was a tall, white, blonde, well-built man and around our age. Her words! He arrived with his girlfriend as excited to see us as we him and well Nikki was right about his figure. So we got right into conversation about how he met Nicole, about our families, our backgrounds and mainly about epilepsy and his ideas on fighting against it and putting it to sleep forever!

We knew about Charlotte, the first child to have her epilepsy controlled. He and his girlfriend had said that something similar may help you after all of your years of suffering. Not my neurologist but his partner at NYU was already in with him, all he needed was my doctor’s approval before he could begin, but I told him that I was sure he would be all for it after all these years of trying to find me the right combination of meds. This test although would take a month of weening me off of one of my current meds and onto this… I said fine whatever you need me to do, I’ve been through enough already as well as falling off of my own couch just before getting picked up by a cab, showing him the mark on my forehead. So he said he will need to configure a medication for someone of your size and it may take up to a month. Michelle and I said we have no problem with that, get the dosage ready and when the time is right it’s a go.

I shook his hand during and after our conversation telling him that I didn’t think anybody cared this much about us epileptics. That you don’t see anything anywhere about it and that just got all four of us even more angry! We all smiled with the new found hope that we are all sure for it being a success.

So from one website and short story and one very special birthday girl, we may have found a solution!       

My Sister-In-Law Nicole and her fiancé Chris

When ALL that Epilepsy Started

 

For the first 9 years of my education I attended Our Lady of the Blessed Sacrament (OLBS) in Bayside, NY. This is a Roman Catholic School and church in my neighborhood. It was the 5th grade in 1990 that I had my first major seizure. I was in the computer room a few days before Christmas break when I frightened my teacher and classmates by falling backwards off my chair. I woke up in a hospital gown at North Shore (now LIJ) in Long Island and wondered what was wrong with me. From that point on, life has gotten more complicated and my health has yet to improve.

After OLBS, I chose to attend Holy Cross High School,  two blocks from my parent’s house. It was my first and second choices to go here. After I started, my 3 brothers followed each 2 years apart. After graduating, I went to St. Johns University (SJU) in Jamaica, Queens for two years finishing all of my core liberal arts classes, but did not find any major interesting. So I transferred to New York Institute of Technology (NYIT), the number one school in NY for Architecture! The reason for this choice was that if my father wouldn’t let me work with him in his business (wanted us all to get full educations) I went for the next best thing and found it very interesting and right up my alley. I enjoyed drawing and project building. This was a five year course and I did well, but I was up till 4a.m. drawing layouts and projects and my parents hated the lack of sleep that was taking a toll on me. Although I loved it, my parents were happy to see my neurologist pull me out after the first year. I hated that I couldn't attend and tried everything to get back into the program. After my first year working at the New York City Council of Carpenters (NYCCC) in NYC, I chose to go to night classes at NYIT in midtown Manhattan, but after the first semester I was pulled out AGAIN by my neurologist.

By this time I was very heart broken and decided to give up until I had another idea a few years later. I was accepted into Queens College majoring in Sports Nutrition, something I thought that I’d be good in because I was already athletic and at the time healthier. Unfortunately, I found it to be a bit too complicated for me. In 2014 Michelle and I tried once more at St. John’s University, I was accepted again with only a few classes left to take in Photography, but my major problem was that SJU was too expensive and if you are only taking one or two classes per semester rather than a full time schedule, you get no help from financial aid. 

My wife Michelle is a marketing professional for many Non-Profit and For-Profit’s she has worked for. She put herself through college at SJU with a Masters in Marketing Management and one day she will have a doctorate as well. If I had known her at the time, she would have helped me through whatever I needed done, but I was not catching her eye in the crowd as much back then. I would have truly appreciated that, but 17 years later since 1998 isn’t anyone’s fault. Who could predict their future in HS like they ask you? 21 years later from that question and my life is still in a backwards motion. Yes my answer was when I get older I want to be married with my own house, but still I find myself stuck on my parents couch as a child with disabilities galore.