Inspirational Epilepsy Stories: Alan Faneca
The Epsy team sat down with Pro-Football Hall of Famer Alan Faneca to discuss his career, including the Super Bowl win and his life with epilepsy. Read more about the former guard for the Pittsburgh Steelers below.
How the epilepsy story started
I was over at my great grandparents house for Christmas Eve, it was a relaxed evening and I went to bed like any other Christmas Eve. I woke up in the night disoriented, I was crying and upset. My family calmed me down but it kept happening through the night - then it was Christmas morning and I just moved on from it. Then I had more events like this, so my parents started investigating with doctors, which led to us finding the medication and dosage that worked for me. I am very fortunate and live seizure free - but I’m conscious of never missing a dose, if I miss two medications then I definitely would be on the borderline of having a seizure straight away.
Was it a shock that your neurologist gave you the all clear to play football?
My diagnosis started with my GP, then we found our way to a neurologist. I went through lots of tests; CT scans, MRIs and EEGs which was a lot of poking and prodding to understand what was happening. The neurologist came to the conclusion that it was epilepsy and I was experiencing complex partial seizures.
They tracked the spot in my EEG where it originated from, then I was put on the path to finding the right medication and dosage, which took a while to find. I take it three times a day, although as I’ve grown older it becomes more difficult to remember when other things pop up with family, and events.
My first reaction was “what does this mean to me?” I'm still this high school kid, my mum’s checking up on me all the time - even in the shower! We had a list of questions to go through with my doctor and once we were at a good place, we asked about playing sports and specifically football with epilepsy. My epileptologist had no hesitation to say I could play! Now I’m a father, my daughter Annabelle has a rare type of epilepsy called Sturge-Weber syndrome - with my own experience I had the knowledge to help her, she's had it since she's 1 - now she's a teenager and it's hard to give her the space!
Do you think epilepsy made you a better player?
Having epilepsy definitely gave me more of an appreciation of what I’m able to do, particularly for things I may have been taking for granted before. I have this ability now to absorb things, and appreciate it and take in life - which is a much more enjoyable process.
Learn more: 4 NFL players with epilepsy
What are your personal highlights from your career?
The easiest one is winning the Super Bowl in 2006! I've got a picture of me with the Super Bowl trophy, when I look at that picture I’m instantly right back in that moment - it’s hands down the most amazing memory. One of the most exciting things was being able to do what I love in front of like 80.000 screaming people - not everyone gets to do that in their day job!
On the other hand, one funny story came in college, Louisiana State University. I remember there was this one game where we beat the top team at the time. We were jumping around celebrating and we jumped up to give each other a bear hug, then suddenly we were under this huge pile of students and all we could do was just stare at each other. It felt like we couldn't breathe but we couldn’t get out either!
How did you react to being inducted into the Pro Football Hall of Fame?
It was awesome, it was amazing. I've been nominated for a couple of years, I was waiting for it to happen. For me personally, it’s right up there with winning the Super Bowl, but it’s just a little different. Throughout my life I was always a goal setter, I didn't realize I was until I actually made it! It’s amazing to have this lifelong goal and be able pull it off.
This year it was a bit different, normally, we don't find out until the Super Bowl, this year due to COVID we knew ahead of time. To celebrate we had our close friends who are in our bubble come over and celebrate, but I had to sit on this news which was hard. I started calling friends before the announcement and they were calling everybody else to tell them.
Is it difficult to discuss epilepsy as a man?
When I first discovered I had epilepsy I had a great core group of people around me. I was always open and sharing my condition - my friends knew and I didn't keep it from them. It made sense to me to be open about my condition because being open about it helped me. Whenever people would ask questions I’d always say 'I’m completely cool!' they would be dumbfounded and think “well, I guess Alan's okay, I'm just going to go on and not worry about him”.
Whenever I speak to kids with epilepsy, I share my funny experiences - as when you are young you want to be a normal kid and are worried about having these embarrassing moments in front of people. One time in particular I had a seizure and I ended up walking to school in my pajamas - this big guy just turned up to school in his pajamas, my friends told me and then I went home, got changed and came back. Being able to share those moments helps kids to know that they shouldn’t feel embarrassed about these moments, I know that would've helped me at that age.
Read more: Talking about men and epilepsy
What does raising awareness of epilepsy mean to you?
It's important to me because it helps to take the stigma away - having something or someone else to point to other than the seizures or experiences people see in movies. Epilepsy is a part of us, but it's not who we are! It's something we have but not who we are.
What was it like going from living with epilepsy to caring for a child with seizures?
It was scary, very scary. Her seizures are anything from staring off blankly to convulsing, when she's 1 years old she can't speak for herself, but because I have it I know how it feels - I know she's tired after a seizure. She's doing great now, we are working towards 7 years of being seizure free. With her school and teachers we made sure that seizure safety training and knowledge was in place, as it helps to clear everything up and makes us more at ease.
Read more: 5 tips when caring for a child with epilepsy
What would your advice be to someone who has recently been diagnosed?
For caregivers, I would say just be there for them and help them through the good and the bad times. They're gonna have moments they just want to talk.
For someone experiencing epilepsy themselves, I would say stay the course, stick with the doctor's that work for you, it's not the end or the beginning, it's the path, the path you're on!
What has your life post retirement involved?
After I retired I knew I didn't need to be 320 pounds the rest of my life, I lost 100 pounds in a year. I did a lot more cardio and ran a marathon, scratched that off the bucket list. Now I do a couple of business things, and I talk publicly about epilepsy. Our new business tries to help businesses stay open through COVID. My brother in law has been in and out of business over the past year - so we decided to do it after quarantine. It's not a big money maker but we are doing something to give back to the community.
Otherwise I have gotten into woodwork, and my on and off love again with the guitar - they keep me busy, they're my passions! I also get to spend lots more time with my family.
Finally, after securing his seventh Super Bowl, is Tom Brady the greatest NFL player ever?
He will definitely go down as the most decorated! He has the longevity as a quarterback because he is untouched unlike other positions but he's done a great job to keep his body in shape and keep going.