Events & News


Epilepsy Star: Mary Holtz

This issue we are featuring an incredible epilepsy star who has been working to raise epilepsy and seizure disorders awareness for years.  She has singlehandedly put together massive teams of walkers for local and the national epilepsy walk and fund raised like nobody’s business. 

How did you first react when you were diagnosed with epilepsy and what challenges did you face?

I was diagnosed 25 years ago after brain surgery.  Honestly what they said that day sounded so very scary but I was still recovering from brain surgery and I don't think I completely understood what it meant to have epilepsy.  It was a very different time then, illnesses and diseases were not discussed.   My main goal at that time was to be able to return to school for my senior year and get my drivers license.  In the beginning just making it through an entire day of school was a challenge,  all the medicine made it very difficult to concentrate, it made me so tired.  I had a seizure in school one morning and it really scared everyone in my class including my teacher.  When I was able to return to school it was a new challenge a lot of my friends were afraid of me.  It was like I had to show them I was still the same person I always was that seizures were something I had but I was still the same person. 

Did you ever feel the need to hide your epilepsy or did you make it a habit to tell others? How did they react typically?

Yes at one point in my life I did hide my seizures.  I was already very limited on where I could apply for a job.  I couldnt drive so if I couldn't get there by  public transportation or by walking I couldn't even apply. I had been honest on several interviews and when I was honest and told them I had epilepsy the whole interview would change and they wouldn't hire me.  The first interview where I didn't tell them about my epilepsy I got hired.  So for a long time I wouldn't tell anyone,     I only told people if they witnessed a seizure because then I had to.  Some people reacted well, usually followed by the question what does that mean or what is epilepsy?  Some said "you don't look sick".   Others didn't react as well, as if seizures made me a different person or it scared them and they would disappear out of my life.

What have you been doing in the epilepsy community and why?

I do a lot in the epilepsy community now.  I participate in 3 walks a year to raise money and most of all raise epilepsy awareness. I'm  always on  the search for new team members  .  If you are reading this join Team NEREG !!!  I participate in purple day on March 26 every year and I paint purple pumpkins in October.   I also do a lot of knitting for our DC purple raffle and  have recruited some  great friends who knit for me so we can have even more prizes.  Most of all I talk about Epilepsy.  So many people are afraid of Epilepsy and there are still so many horrible myths about it, the only way to change that thought process is to Educate people. 

How was the experience of walking in Washington, DC and of being a team captain this year?

Walking in DC is always an amazing day.  My first year was my favorite.  That's the day I  really realized I wasn't  all alone in the fight for a cure.  Every year is great but that first year was really amazing.  They always have so much information and you really realize what a difference you can make.  Its great to know that you are not alone in the fight against Epilepsy. 

I'm thankful for the great team that I had.  I can't take credit for any of the work that went into fundraising for that walk.  I'm sorry to say a short time after I said I would be team captain my father passed away.  It was one of the worst times of my life.  I'm so very thankful for the fundraising efforts that my team put forth because they know how much my epilepsy walks and raising epilepsy awareness mean to me.  I can't even put into words the gratitude and love that I have for each and everyone of my team members.  A captain is only as good as their team members and I hold that statement to be very true.

What are your plans to raise epilepsy awareness in the future?

I plan to continue participating in all the events in which I currently participate.  Who knows, maybe even add some new ones.   Still searching for that million dollar fundraising idea.   Most of all I plan  to educate as many people as I can along the way.  I have seen so many positive changes in the world when it comes to epilepsy.  25 years really isn't that long of a time but it was so very different when I was diagnosed.  No one talked about it, you were really made to feel you had to hide it, they had no programs or conferences, nor was it talked about in schools.  You really felt all alone.  All that has changed and that's a great achievement in the fight against epilepsy.  I like to think I helped make a difference somewhere in those 25 years of change.  So most of all I will continue to talk about it and wear my "Ask Me About Epilepsy"  t-shirt proudly.     

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