Interview with Eric Miller, founder of Candlelight Concert for Epilepsy Awareness

By: Eric Miller 

Hello Eric! I’m so glad to have you for such a special interview.    

Thank you Mandy. And thank you for all the work you do in terms of blogging, Facebooking and raising awareness. It’s truly wonderful and inspirational.

Thank you, Eric. That means a lot to me. So I understand that your wife, Carolina, passed away in August due to SUDEP. How have you been coping? What have you been doing since then?   

 Since Carolina’s passing, I’ve really thrown myself into working on this special event in her honor.  It’s certainly a difficult and tragic thing to be torn in half like that.  And so I’ve diligently been working to raise awareness about epilepsy and specifically SUDEP in the hopes that no one else would ever experience such an immense and tragic loss. 

 Almost immediately after Carolina’s passing, I reached out the Epilepsy Foundation of New Jersey to begin work on this project.  I thought it was a positive way to direct the tempest of emotions I was feeling and help me along in the grieving process. And for a greater good beyond my own grieving process in terms of awareness and fundraising for the Epilepsy Foundation.

From what I’ve seen in pictures, Carolina was such a beautiful woman. Can you tell us a little bit more about her?   

Thank you, she most certainly was.  It’s always my pleasure to talk about Carolina. She was truly an amazing and beautiful person in just about any measure you could imagine. She grew up in Brazil, earned her law degree and was a practicing member of the Sao Paulo Bar Association. She was intelligent, compassionate and very close with her family and friends. Carolina was the kind of spirit that filled the room. She loved travel and adventure. She was courageous with a willingness to try just about everything. Carolina was colorful and vibrant in every way – her dress, her hair, her language, her smile and the way she embraced life. And, she always, always looked glamorous. And without effort.  I truly was the luckiest guy alive.

Now, how long did Carolina actually suffer from Epilepsy?   

She was diagnosed while in Brazil as a teenager.  She didn’t have very frequent episodes.  Maybe one every few years at the most.  Her neurologist in Brazil had her on medication that she took daily to stave off any triggers.

When did she first admit to you that she had Epilepsy? What was it like hearing this news?   

Carolina was pretty guarded about her epilepsy because of the stigma far too often associated with it.  I was fortunate in that she told me very early into our relationship – fortunate in that she trusted me with this.  Many of her close friends were not aware.  My reaction was simply that I took it in stride.  It didn’t in any way alter her in my eyes – she was amazing regardless.  I took it as something we’d live with, together.  It was never an issue in any way.

Was the Epilepsy a constant struggle for Carolina? 

Carolina had seizures just every once in a while.  In fact, during our marriage she only had two with one being the awfully fatal one.

And what was it like being married to someone who has Epilepsy?  

 I never saw her in that light. To me she was simply Carolina and that was part of the package. Again, in my view it was simply something we’d live with. As far as the day-to-day part of it, when you’re in a partnership like that, you do get into taking care of each other. Without question because that’s simply what you do. In this case I would often remind her about her medication. For example, if we were travelling, I’d be sure to remind her to bring her medication.

Did you do work for Epilepsy or SUDEP before Carolina passed away, or was she your inspiration to start?   

She was definitely my inspiration to start.  And the inspiration to continue.

Tell me a little about your Candlelight Concert for Epilepsy Awareness?

The Candlelight Concert for Epilepsy Awareness came about because I’ve done some minor work in the music business – booking shows, artists, etc.  When Carolina passed away, I wanted to not only make a donation to the Epilepsy Foundation, but to put my skills and resources to work in raising awareness and funds. A simple donation seemed inadequate in honoring Carolina. So I reached out the Epilepsy Foundation of New Jersey, went in and sat with them and told them my idea.   

The idea was a combination of both personal and public reasons. Personally, it’s a night to honor Carolina.  Most of the artists on the lineup were selected for very specific and personal reasons relating to her and our relationship. For example, Dan Reed is a friend of ours, and he played at our wedding reception in the US. We saw Corey Glover on the first Valentine’s Day we shared as a married couple. Mary Fahl, we saw at a very intimate house concert. And so on.   

Publicly, it’s an event to raise funds and awareness for the Epilepsy Foundation. The venue is the Patriots Theater in Trenton, NJ.  A venue where Carolina and I once saw a show.  It’s an old theater that holds about 1,800 people. I’m working tirelessly to promote this event and to raise as much for the Epilepsy Foundation as possible. Personally, I feel it’ll be a success regardless because I’m confident her spirit will be in the room, smiling at her friends and family.

I see that Dan Reed is actually going to perform “Candlelight” for you at the event? I understand that song had a very special meaning to you and Carolina.   

Most certainly.  Dan Reed is someone who’ve I’d done some work with in terms of booking shows for him.  As part of that, he’s occasionally spent time at our home.  On one particular visit, I remember Carolina going out of her way to make him a “home-cooked meal.”  As she recognized the life of a working musician is often spent on the road and away from family and home-cooking.  

 This particular song brings back a very specific memory for me – Carolina and I were watching Dan at a club in New York.  Dan was performing Candlelight solo on piano.  I remember so vividly holding Carolina’s hand and having one of those moments of looking into each other’s eyes.  I remember the feeling as if it were timeless.  So when I began working on this event, Dan was one of the very first artists I had reached out to.  He accepted the invitation to honor his friend Carolina without hesitation.  In fact, he’ll be travelling from Prague just to do this show.  Along with his band, who are coming from Seattle, Turkey, Portland and all parts of the globe. Such an honor.

Additionally, the song has such an inspirational message with such lyrics as “throw away all of your fears/oceans calling for your tears/you’re not in this fight alone.” I couldn’t think of better words to help fight the stigmatization surrounding Epilepsy.  I played the song for my friends at the Epilepsy Foundation of New Jersey and they fell in love with it immediately. The fact that the Epilepsy Foundation logo resembles a candle flame is really a serendipitous bonus. Again, it’s a mixture of the personal reason (my memory of watching Dan perform this with Carolina’s hand in mine) and the public reason because no one is in this fight alone.

(Mandy's Note: Please take a minute to listen to this powerful song by Dan Reed.)

If you could reach out and give some advice to other people going through the loss of a special loved one due to Epilepsy/SUDEP, what would that be?  

 This is very tough because I believe everyone grieves in their own way and pace.  In my case, I do my best to really savor the time I had with Carolina. In our short time together, we lived a lot of life.  And for that I am eternally grateful.  I’d maybe suggest something similar to anyone going through a similar loss.  Really focus on the quality and value the time you did have. Very tough to do as I can attest, but I try to use that as a guidepost in my grieving process. I also believe that celebrating her life does more to honor her than mourning her death and would offer that sentiment to anyone in my position.

Is there any other special message that you would like to share with the world?   

In terms of Epilepsy awareness and SUDEP, the most important thing I can think to say is that it’s never too soon to learn more.  It’s never too soon to engage the Epilepsy Foundation and utilize their resources.  It’s never too soon to find a support group.  It’s never too soon for any of these things.  Today is critical because you never know if you have a tomorrow.  It can never be too soon, it can only be too late.

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To learn more about the event, donate, participate, or even attend, please follow this link to the Candlelight Concert for Epilepsy Awareness's official website. All proceeds benefit the Epilepsy Foundation!

Buy tickets NOW for this event happening Saturday, March 24th, 2012 at HERE!