What Epilepsy Means to Me: Connor Doran, America’s Got Talent Top 12 Indoor Kite Flier

I usually only catch one or two acts from the show, America’s Got Talent (not because I’m a television snob but because I’m busy watching my DVR which is full of NCIS, Dexter and Modern Family).

You’d think I would watch more of it since I’ve been a Howie Mandel fan since  his “Bobby’s World” days (I told you I wasn’t a television snob) when Rach and I would laugh and I’d try to mimic the Wisconsin accent of his mother (walking around the house saying, “Don'tcha know” in a funny voice always got a giggle from my daughter).

Even though I was a sporadic viewer of AGT, I somehow managed to catch the act of the kid who had been bullied, had epilepsy and did a beautiful act with indoor kite flying.  The kite flying was mesmerizing and this kid’s story was inspirational.  Connor Doran made it to the Top 12 a couple of years ago and continues to inspire with his kite flying act.

I’m very excited and honored that he took time out of his busy schedule to talk with me about his epilepsy.

Please meet Connor:  an America’s Got Talent Top 12 finalist, an Indoor Kite Flier and strong Epilepsy Advocate.

He’s also met Howie Mandel.

“Don’tcha know.”

Robert’s Sister:   When were you first diagnosed with epilepsy?  Was it a lengthy process to get diagnosed?   

 
I was diagnosed at age 4. I started having petit mal seizures just before my 4th birthday. I was blinking a lot, and staring and no one really knew what it was.  I was having 30 – 40 “episodes” a day.   My mom videotaped one of the episodes and took it to my regular doctor.  He sent me for an EEG and I had a seizure during the EEG.

 

For those of you unfamiliar, an Electroencephalography (EEG) is the recording of electrical activity along the scalp. EEG refers to the recording of the brain's spontaneous electrical activity over a short period of time, usually 20–40 minutes.

 

Robert’s Sister:  How did you feel when you were diagnosed?  

 

I was only 4, so I was too young to know what was happening.  I really did not have any feelings about it then. But as I got older, and my seizures came back at age 14, I was really scared, and worried.  I got nervous and depressed, and I started to develop OCD (Obsessive Compulsive Disorder).  

 

Robert’s Sister:  Did your family treat you differently after the diagnosis?  If so, how? 

 

Hi, Amy Doran, Connor’s Mom here.  I would like to answer this one as Connor has no memory of being treated differently by family. 

 

The truth is, his Dad and I worried all the time.  We became concerned about water, stairs, slides, any place where Connor could fall or get hurt.  We were on constant watch.  I think you truly understand what it means to be “on watch” when your child is diagnosed with epilepsy. We struggled to find answers, cures, reasons.  It was really tough. 

 

I am glad Connor has no memory of being treated differently because I suppose that means we did a pretty good job of hiding our own fears.  But it was a big change in all of our lives when Connor was diagnosed with epilepsy.

 

Robert’s Sister:  Did the kids at school treat you differently because you had epilepsy?

 

My family didn’t treat me differently, but my school did.  My peers treated me differently because the epilepsy caused anxiety for me which made me nervous about everything.  (Epilepsy induced anxiety).  The kids took advantage of that and would try to scare me. They made fun of me as well. It made me feel like a target . . the number one person to pick on, and be victimized.  

 

Robert’s Sister:  What treatments have you tried?   What has worked?  What hasn’t worked?  

After I was diagnosed with epilepsy at age 4, the doctors put me on Zarontin. It worked great for four years.   When I was 8, my seizures started up again and the doctors added Zonegran.  That made me sick. I was tired all the time, and having headaches. It also made me sleep walk.  I went off the Zonegran and my doctor added Topamax.  So I was taking Zarontin and Topamax. While it did not make me sick, it was not controlling my seizures. 

 

So I had to go off the Topamax, and they put me on Depakote and Zarontin.  That did not stop the seizures either.  We were getting pretty discouraged at this point. It had been a year and a half of trying new medications with no results. 

 

By this time, my mom and dad decided to take me to OHSU Doernbecher Children’s Hospital in Portland Oregon, to see a specialist named Dr. Roberts.  He recommended that we should try a Vagus Nerve Stimulator (VNS).  He wanted us to go to Mayo Clinic in Rochester, Minnesota, which is a top Neurological Center.  

 

I was only supposed to be there one day for a 24 hour EEG.  Five days later, I was still hooked up to the EEG and was really ready to go home to Oregon. They determined that I was not a good candidate for the Vagus Nerve Stimulator and decided the best treatment was to keep trying new meds.  They prescribed Lamictal on top of the Zarontin.  I had great results and no seizures for four years.

 

When I was 14 years old, the seizures came back, this time with grand mals, and tonic type seizures. 

The doctors raised my amount of meds with no results. Then they added Keppra. That seemed to help for about three months.  

Then the seizures returned.   So it was back to see Dr. Stephen Ireland. He had been treating me for the past eight years and was really patient and understanding.  He did some adjusting of my medication amounts, but then eventually added Clonazepam.

On a side note:

In Oregon, you have to be seizure free for three months before you can drive. I was just at the age to take my permit test and I was really excited about that.  My first attempt at the written test did not go well. My second attempt I missed one question too many to pass.  I was really disappointed, and my mom and I were talking about when I could go back and take the test again.  Later that evening I had a grand mal seizure.  It was then I realized that I was not going to drive. It was too dangerous for me to drive. The medications I was on were making me too sleepy and my focus would not be good.  I was not comprehending all the info I would need to operate a 2000 pound car.  With my seizures coming back, I was concerned I would have a problem while driving.  I did not want to take any risks of hurting anyone else or myself.  It was a tough decision for a 15 year old to make. All my friends were learning to drive and excited about it.  But I made the right decision, and at age 19, I still do not drive. 

I am currently taking four seizure medications: Clonazepam, Zarontin, Keppra and Lamictal as well as Zoloft for anxiety. 

Robert’s Sister:  Do you think the medications affect how you feel?

Yes, the medications add to my anxiety. When I first started Keppra it made me irritable but that has gone away.   I sleep a lot, because many of the meds that I am on make me really tired.  I have been able to overcome some of the tiredness.  One thing I have trouble with is eating. I am not very hungry and I have to be reminded to eat regularly.  That is a side effect of three of the meds I am on.

Robert’s Sister:  Have you done any advocacy work (individually or with an organization) or participated in any research studies?  What made you want to be involved?

For the past two years, I have been performing all over North America.   Before each event or performance I connect with the Epilepsy Foundation in that area and we try to work together to raise awareness and help others connect so they can get the support and help they need.   I have just recently done performances to raise money to support the Sparrow Clubs, the National Epilepsy Foundation, and others.   It’s important to me to stay focused on helping others. It only takes a few words of encouragement to someone to make a difference in their lives.  This past year I have done 24 events so far.  Here are just some of the events I have been honored to be at.

• Keynote Speaker at the National Walk for Epilepsy in Washington DC
• Developed The Dare to Dream Team to raise Epilepsy Awareness and raise money for the Epilepsy Foundation.
• Invited to perform at the Smithsonian Air and Space Museum Washington DC

[Editor’s note: for a full list, please visit Connor’s website.]  

Robert’s Sister:   How has epilepsy affected your life?

Epilepsy has changed my life.  It was not a good situation for me because I had trouble with schoolwork, and I was being bullied.  I had issues with understanding some of the subjects. 

I have developed OCD, and an anxiety disorder, due to having epilepsy.

I thought I was totally alone.  The idea of joining a support group made me feel like I was different.  I didn’t want to be treated differently.  I truly believed that I could accomplish whatever I wanted. 

I was starting to fly kites when I was 14 and realized how helpful it was for my stress and anxiety. 

I used to watch videos of other kite fliers, and performers on different shows.  It was then that I got the idea to try out for America’s Got Talent Season 5. 

 

Robert’s Sister:  What is your favorite memory?  

 

My favorite memory has to be my experience on America’s Got Talent.  The night that I auditioned in Portland Oregon changed my life. I spoke openly about having epilepsy and how kite flying has helped me deal with that.

 

The best way I can share that moment is to actually share the video:    

 

 

 

After that night, I heard from people all over the world. I was shocked and amazed at how many people saw the show.  I received emails, letters and phone calls from so many people that have gone through the same thing I had.   I had no idea there would be such a reaction to what I had talked about on the show.  There were so many people that had never seen indoor kite flying. 

After I went to Las Vegas on the show, I was eliminated.  A couple months later, I got a phone call from my producer on America’s Got Talent. He told me I was being considered as a Wild Card for the live show in Los Angeles.  That was a pretty awesome day for me.   It was not a sure thing, but I was working hard practicing just in case.  The day I got the call to be in Los Angeles in six days was just an incredible feeling. I was nervous, but so excited to be heading to the live quarter finals. 

Here is a video of that show:

America's Got Talent: Wild Card Show

Robert’s Sister:  Do you ever wish you didn’t have epilepsy?

 

I wonder if I would have been different, if I didn’t have epilepsy.  Would I be a driver? Would I have been a science or math genius?  Would I have gone on America’s Got Talent?  

 

Would I have been the person I am today? These are all questions I ask myself.   Epilepsy could have limited my life in a lot of ways.  It certainly has affected my life.  But it has also helped me be a stronger person.   Yes, I wish I did not have it, I wish it did not exist for anyone, but having said that, you have to decide to overcome those challenges.   It’s a choice you have to make to try and find the positive, the possibilities, and the dreams.

 

Robert’s Sister:  What do you want people to know about epilepsy?

 

If you are diagnosed with Epilepsy, remember that you may have epilepsy, but it does not have YOU!

 

You are not alone, and there are many people out there going through the same thing you are. Reach out, and connect with others.  If you are not sure how, email me and I am happy to help you get connected.  Remember I thought I was alone too. 

 

If you don’t have epilepsy, you can still be helpful by knowing what to do if someone has a seizure and you are there.  Don’t be caught unprepared.  You can, and will make a difference in someone’s life by knowing what to do.   1 in 10 people will have a seizure in their lifetime.  There are no rules about who can have a seizure. It can happen at any age, to anyone.  People do not realize how serious epilepsy can be.  Epilepsy Awareness is key!  For more information on what to do if someone has a seizure check out this web page here.  

 

Robert’s Sister:  Is there anything else you want to say? 

 

We have had many incredible opportunities to travel and perform in the past two years.  The Dare to Dream concept is growing and I look forward to teaching others how to deal positively with the challenges life gives us all.  The program inspires people of all ages to be advocates, to speak out about bullying, and to believe in themselves.  If you are interested in having the Dare to Dream program at your event or school, please contact me at connordorankite@gmail.com.  

 

I want to say Thank You to Revolution Kites for all their encouragement and support.  They have made so many things possible for me and I am truly grateful.  Also, the emails and messages that people have sent truly mean a lot to me. It helps to know that you have helped someone else in their journey.  Remember, if you can dream it, you can do it!

 

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business.  

 

My website is www.connordoran.com  

 

Twitter: https://twitter.com/ConnorDoranAGT

Revolution Kites website is:  www.revkites.com  

 

Robert’s Sister:  Many thanks to Connor for taking time out of his busy schedule to answer my questions!  (Next time you see Howie, please tell him hi for me.) J  

 

We're in the home stretch!  Each day in November we have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.