Each of our lives is story that is told day by day. Sometimes they are relatively uneventful by our standards, sometimes they are quite extraordinary! Either way, they are our stories. And as stories go, there are different perspectives, new things to learn each time we read one.
Do you have a story about living with epilepsy that you would like to share? Please send your stories to Karen Diaz,
The Epilepsy Center of Northwest Ohio, 1545 Holland Rd., Suite B, Maumee, OH 43537, or email to email@example.com. The Epilepsy Center does reserve the right to edit all submissions prior to posting.
"Amazing Debi". This is the nickname given to me by my neurologist, Dr. Zangara. My name is Debi Kay Ference and thanks to my surgery, it has been seventeen years since my last seizure. This is my story Ö
I started having seizures when I was eighteen months old. Because of my seizures, I developed a very high fever and ended up going into a coma. My parents were told I would not live. I surprised everyone and did! (Throughout my life I have proven a lot of people wrong.) Over the course of time, I continued to have several different types of seizures. I always knew when I was going to have one because of the aura I would get.
I never wanted my parents to tell the school I had seizures; I did not want to be treated different. Even though I only remember having one seizure in school, I remember it like it was yesterday. I got to go off of medication in the sixth grade and I went almost a year before I ended up having a grand mal when I was getting off of the bus.
People do not realize that one out of ten people have seizures. When people make fun of those with disabilities, it makes me sick. When a person has an illness or medical condition, he or she needs to decide if they are going to let that illness or condition define who they are. I decided a long time ago that I was as good as everyone else! I am a person with epilepsy, not an epileptic! In reality, most people have something wrong with them.
Over the years, I have always worked – I never wanted to be on disability; I always felt like I had to prove myself. Most of my bosses were very understanding.
Unless you have other obvious disabilities, people are unaware of how challenging life can be. They look at you and assume your life has always been so easy. They just donít understand how difficult getting through every day can be. I finally decided to have the brain surgery that would hopefully make my life a little less difficult.
It wasnít like I just called a neurosurgeon and scheduled the surgery Öfar from it! I had six months of testing (some of those tests were actually surgeries themselves). I had x-ray neurological exams which were eight hours long and required hospitalization each time. Wires would be placed in my mouth; I can still feel where they were (to me this is a reminder of how far Iíve come)! The doctors brought on seizures with these wires so they could tell what part of the brain they were coming from. This procedure took a couple of days. I still have the video of the testing procedure.
The next step was to have my brain numbered, one side at a time. The first time was a disaster and I ended up having a TIA (Transient Ischemic Attack), but the doctors had a stroke team there so within a few seconds, I was OK. It was a horrible feeling. I could feel my left hand and leg but I didnít know where they were. They ended up having to redo the test six weeks later, after my body recovered. The redo was a success and I was told by my doctor I was ready for the surgery.
My life changed on December 29, 1995 when I had brain surgery on my left temporal lobe. I was also told by my doctor that I might have to learn to walk and talk again and I would forget certain things such as numbers. When I woke up, not only was I able to walk and talk again, I was able to return to my job at Mancy's. Even more amazing was that I was able to use the computer system, made up primarily of numbers, with ease! I still remember walking in and punching in. My boss, Mike Mancy, looked at me and jokingly asked if I remembered how to do it.
I have been at Mancy's now for over twenty years. My life has been through so many changes since my surgery. I am thankful every day that I had it. I worked so hard to be normal. This is why I believe if everyone had just one week of the life of someone with epilepsy, they'd appreciate the brain God gave them.
The surgery is a risk but it is something I would do again in a second. My only advice is to make sure you have good doctors. My surgeon, who has since moved to New York, was Dr. David Carter and my neurologist was Dr. Anthony Lassiter.
Dr. Peter Zangara, my current neurologist, asked me years ago if I would talk to people who wanted surgery. I wanted to do it, but I was afraid of anyone knowing my secret. However, over the years I have become more confident. I feel it is my duty to help encourage others to do the same thing I did.
I spoke with a young woman a few months ago. She is in her twenties and never used to have seizures. She said they came out of nowhere. She is a nurse so she knows it can happen to anyone, anytime. She scheduled her surgery for some time in March. She said since she has seen and talked to me, her fears have disappeared.
I have given The Epilepsy Center of Northwest Ohio my number if anyone wants to talk to me more exclusively. We have also talked about putting together a panel of people who have (or have had) seizures as part of the Living with Epilepsy Series hosted by The Epilepsy Center.
I truly believe the surgery has changed my life and as a result, has made me a stronger person. I consider myself a walking miracle; breaking is not in my vocabulary. When you have had to fight all your life it becomes part of you. I bought a tee shirt at an epilepsy meeting about six month after my surgery. In a way it has become my life slogan, and I think of myself as living proof of, "What does not kill you makes you stronger".
Deborah Kay Ference
Hi, my name is Krystal Albright. When I was only 9 months old I had already had 4 surgeries in my brain. At that time the doctors told my parents I was a good candidate to develop seizures. As the years went by, and there was no sign of seizure activity, it looked like the doctors were wrong this time. But then, when I was in the fifth grade, I began having weird feelings in my tummy at times. It felt like I was going to get sick, but I never did. The feelings did not last long, but they happened a lot.
I went to doctors and had tests run but nobody knew what was causing that feeling. Then one day I was working with my physical therapist when I suddenly got this feeling. She looked up my symptoms in some of her old medical books and told my mom she thought it was visceral seizures. She wrote down what she observed and thought. My mom took the information to my doctors. Sure enough when they checked it out that was what was happening to me. I was diagnosed with epilepsy and put on anti-seizure medication.
The medication did not control my epilepsy. Medicines were changed several times over the next 10 years but no amount of meds or combination of meds controlled my seizures. During this time I never let my epilepsy stop me from doing things I wanted to do. No matter what it was I wanted to do, my parents always supported me, made sure I took all the precautions I could to be safe and let me try things I wanted to do.
I did many things as I was growing up. Some of them were:
- Going to the town pool, but I always had a friend go with me and we would stay together both in the pool and out.
- I went to school dances, but I always stayed nearby a trusted adult who knew me well and would keep an eye on me.
- I went roller skating, and always wore a helmet. Mom said youíre going to get bruised and sore from falling down but thatís okay, you just need to protect your head.
- I rode my bicycle up and down my street. Of course I never rode without a helmet and I have lived my entire life living on that street. The neighbors all know me and if I needed help they would help me.
- I played Special Olympics basketball for several years.
- I was also into track and field, athletics, and bowling with Special Olympics.
- I even went on a school trip to Washington D.C. with my class in my junior year of school. The school was so against me going, but I wanted to go, so my mom got the Epilepsy Center involved. (Iíd like to thank Karen for all her hard work, advice and support on this issue.) We also got the Ohio National Coalition involved. Finally the school decided they could not stop me from going, and they had to accommodate my needs. Mom felt she had done everything possible to make sure that I would be safe, and I went on the school trip.
Other things I was involved with was volunteering with organizations in my community, I was in 4-H, in 4-H Junior Leaders, served on the Junior Fair Board, a Girl Scout, was on the Library's Teen Book Club, and served on the Special Olympics Advisory Committee. There are so many things that you can achieve. It takes a lot of hard work, but don't be afraid to try.
When I was 20 years old my doctor encouraged me to go Cleveland Clinic to see if maybe they knew of something that could help me with getting my seizures under better control. After months of tests they decided I was a good candidate to have surgery. A Right Temporal Lobectomy was the surgery they were recommending. They would go in and remove my right hippocampus and the surrounding brain tissue. The hippocampus is the control panel for that side of the brain. This was a major decision to make. Much studying had to be done to understand it all. My parents helped me by my dad arguing for the surgery and mom arguing against it. They wanted to make sure it was my decision, as I was going to be the one living with the outcome. I decided to go ahead and have the surgery. This was my 17th surgery. After the surgery I had to learn how to do many things, such as get in and out of bed, climb stairs, and even learn the names of objects. The left side of my brain had to learn what my right side used to do. I recovered quickly, and Iím glad I had the surgery. I still live with epilepsy, but I do not have daily seizures.
Four weeks ago, today, I achieved another one of my goals. For the last 4 years I have been competing in cycling with Special Olympics, In 2011 I placed 3rd female in the state. I was thrilled! In 2012 I once again went to state competitions and placed 2nd in the state. Talk about being thrilled! I was ecstatic! It didn't take me long to think; why not go for 1st place? Someone has to be first Ö why not me? I knew the only way to be first was to work harder and improve my skills. Could I do it? I wasn't sure, but I had to try. If I tried and didn't get it, was I any worse off than if I didn't try? Mom said no, I would actually be better off, because I would know I tried my best. Having the regret of not trying would be worse she said, because I would always wonder if I could have done it.
So this past year I worked really, really hard. I practiced on nice days, in the heat, strong winds, and even rain. You never know what race day will be like and I had to be ready for all kinds of weather. Race day finally arrived Ö was I confident? Not really Ö but I had to give it my best. My parents said:
- race like youíve never raced before
- pedal faster than you think you can
- if you want it, find the energy inside you and give it your all
- use all your energy you have and then dig deep inside you to find more
- You have practiced hard and you're ready.
After all that they said, above all, remember ... your best is all you can do and don't forget to have fun! Guess what ... I now hold the title of cycling, female division, 2013 State Champion. I did it!
Fear to try something is a big no, no. Never let fear stop you from trying to do something. Remember there is no shame in trying your best and not being able to do something as well as another person; only in letting fear stop you from trying. Never let fear stop you from trying the things you want to do. At times I was afraid to try new things, and Iím sure my parents were worried about all the things that could happen to me; but those feeling had to be pushed to the side and not let them control me or I would always be sorry I never tried the things I wanted to do. Have the courage to try new things, but the wisdom to remember to take precautions.
No matter what it was, my parents were always right there encouraging me to try different things and to always try my best.
A famous author, H. Jackson Brown Jr., said "Life doesn't require that we be the best, only that we try our best."
Does anyone have any questions?
A few years ago friends from the Center's Common Threads group took me to the Epilepsy Center's Family Camp. I don't know how we got lost following the Center's bus, but we were the last ones to arrive. The passengers from the bus and others were waiting for us outside of one of the shelter houses and one said "We have a camp tradition. The last people arriving must tell us three things about themselves. Two of those things should be true. One of those things will be a lie. It's up to us to guess the lie." I have been late to meetings before and this seemed a strange request, but who am I to break tradition. I stepped forward and said "I am part computer. I do yoga. And I am a Capricorn." It didn't take long for some of the campers to say "You are not part computer." I replied "I have a vagus nerve stimulator implanted under my collar bone to stop seizures." None of the campers questioned the first truth. And technically it is a computer. Now fewer campers said in unison "You don't do yoga." I smiled and said "I do yoga almost daily. I think it relieves daily stress that may cause seizures. I am a Capricorn is the lie." Next time I'll take the bus.
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The Mission of the Epilepsy Center of Northwest Ohio is to improve the lives of people affected by epilepsy and those with developmental disabilities.
People with epilepsy and those with developmental disabilities will attain the highest quality of life and gain full acceptance and understanding from the community.