Mike Simmel's epilepsy story
Between the ages of 2-6 years old I experienced tonic clonic seizures. I would walk somewhere and just drop to the floor, my parents would set up picnics on the floor with plastic cutlery, as I couldn’t sit at the table in case I’d hit my head. This was in the early 80’s, and it was hard as there was limited information on epilepsy and it was really difficult to access the little that did exist.
I was slower than a lot of my friends and I was placed in a special education gym class. My passion for basketball started when my dad gave me a basketball and built a court in our yard, he said 'let's see if it helps you with your coordination’. I dribbled everywhere I went - I even slept with my basketball! From there I played in high school and college, I was a 3-year varsity star, I became a ball boy for the NY Knicks and joined the Harlem Wizards in my senior year of college.
One time, I was walking to Biology class and I had a seizure at the top of a 30-step staircase, then at college and through my adult life I’ve had tonic-clonic seizures that were really bad at times. It’s tough on families but it's so important for caregivers to be there for their kids. I’m so blessed with my family.
Read more: 5 tips when caring for a child with epilepsy
Experience of discrimination
When I was 16 I was at an elite basketball camp in Trenton, New Jersey. I was going to take a shower and then the next thing I knew I was laying on the ground and there were paramedics telling me that I have to go to hospital. The camp leader called my dad and said I couldn’t be at camp, my dad said if you remove him we will sue you. Low and behold, they called my dad back and they said I can stay at camp. Everyone looked at me a little differently at camp but I dealt with the jeers.
At 24 I was playing professional basketball, in my first TV interview I didn't mention epilepsy, then when I saw it I thought 'why didn't I mention my epilepsy?' I'm someone they can look up to, and people can use me as someone to relate to. If I can help just one person, then that’s good.
Tell us about your experience of playing basketball with epilepsy
It is fun but tough with epilepsy. At college my epilepsy was not under control, I was having seizures a couple of times a year. but I've now been seizure free for 11 years. There were times I was with the Harlem Wizards and I was scared that I would have a seizure.
Playing professionally was fantastic. I got to see some really cool places and share the love of the game of basketball! With the Wizards - it's entertainment basketball, I also would do a halftime show. It was a lot of work but it was so much fun, I was showing them what I have. I played my first game ever with the Wizards in my last year in College. I played my first ever game at my local high school and the last game ever was in that same local high school. I knew that was when I wanted to call it quits. I said 'listen I really have arrived with Bounce Out the Stigma but right now i want to move on and focus on this'. It was a stepping stone to do great things.
What is Bounce Out the Stigma?
I played with the Harlem Wizards from 2001 to 2014 and I started Bounce Out the Stigma in 2005. I always wanted to use my platform to help kids. Our first Summer Camp had only 18 kids and we did everything with them, we had a great time. In 2006, we partnered with the Epilepsy Foundation of New Jersey for seven years and were in three counties of New Jersey. When I retired from the Wizards in 2014, I took the program on full-time. So far the Project has worked with NBA Teams and the League on many special needs initiatives, and was named 2019 Jr NBA Program of the Year amongst many other accolades. We have had Basketball Camps and Clinics in 25 states.
Bounce Out the Stigma is a basketball camp for children with disabilities to help with sensory awareness, coordination and motor skills. It is the most unique camp in the country! After the week is over we play 'Show me what you got' by Jay Z, the kids come out individually and show us something they learned with the basketball. The energy is just non-stop, it's moments like that you want to bottle up and bring everywhere. At the end, we have an awards ceremony, each kid gets an award and we say how they've grown throughout the week. Playing professionally was great, but running these camps is what I love. I still do the fun tricks, but I want to use my platform to say 'Look. I have epilepsy but it doesn't define me'
In my career I’ve worked for the NY Knicks as a ball boy, played for the Harlem Wizards, won the Prestigious Ten Outstanding Young Americans Award (TOYA), been named a Kentucky Colonel; been given a Commendation and Citation from the state of New Jersey; also been given a special citation by the state of Philadelphia; and honored by the New York Knicks and much more! But the thing I’m most proud of is when a kid comes up to me and gives me a big hug because I’ve helped them or their parents. The greatest gift of all is giving these kids confidence, there is no can't, you can do what you want. All dreams are possible, so many people tell them no and we just try to tell them YES, you can do it. So far the project has reached a couple of thousand children, but we want to help millions of kids - that’s my next goal!!
Is there still an epilepsy stigma?
I think there are limitations, it's not as bad as it was but there still aren’t enough people talking about it. People just think it's someone dropping to the floor and shaking. But there are so many different types of seizures. The stigmas people have attached to the condition, they just don't understand. There's more information and coverage out there now than when I was a kid. When I was at camp nobody knew anything. You now have all these different organizations out there getting the word out! We’ve got to do an even better job, as 1 in 26 will have epilepsy in their lifetime. That’s a pretty amazing reality!
Men talking about their epilepsy
I think like with anything else, men feel the stigma - almost like they don't wanna say anything. They think their job might be on the line or it’ll hold them back from what they want to do in life. There are lots of famous people that have epilepsy but they don't step up and say it. When I was younger I'd feel sad about it, if someone famous would have spoken about it - it would’ve made me feel better. Alan Faneca is a great example, for him to step up and talk about his epilepsy, is so great.
Read more: Talking about men and epilepsy
What would your message be to someone who has recently been diagnosed?
I would just tell them 'epilepsy does not define you, you define yourself and your own limits’. it's not who you are. You have to believe in yourself and work hard, don't let anyone tell you you can't do it, because you can!'
I think it's really important to have that support network - especially for kids. I've been very lucky to have a supportive family, who check if I’ve taken my medications and such. Still at 43, my mum asks if I’ve taken my medication! You have to have a good support mechanism. Your parents love you and they want to help you - don't press them if they're pressing on you, they are doing it out of love.
Learn more: How to find epilepsy support groups?
