Stories

Destiny's Story—I may have Epilepsy, but Epilepsy does not have me!

Having epilepsy can mean one’s life takes a 180 degree turn from how it once used to be to something entirely different. One moment, you’re a very active, independent person who takes on adventures and does a lot of sports, and after diagnosis, you become a person who can’t do what you once used to do and dreams seem unachievable.

Destiny’s story, in this edition of Embrace Stories to spread epilepsy awareness, helps to realize that even though you may not be able to do most of those things you once used to, it is still possible to not give up, and to keep pushing until you achieve your dream.

Destiny’s seizures started when she was in her sophomore year of High School. She was in the middle of a mission project at Church on Easter Sunday and everything around her became black. The next thing she saw, she was in an ambulance, on her way to the hospital. Several scans and tests later, she was diagnosed of Epilepsy. From then on, her seizures got worse and she couldn’t go anywhere without someone accompanying her. She had to quit the soccer team, where she was a very skilled goalkeeper, and has had to live with friends so that she wouldn’t live alone. Having the Embrace has made her more free and independent to do even the littlest things like going to the pharmacy to grab her medication.

Her Story

My name is Destiny Burns, and I am 21 years old.

I was diagnosed with severe epilepsy in 2009 during my freshman year of high school.

My first grand-mal / tonic-clonic seizure was on Easter Sunday, we were at church and we had made the day into a “missions” day, where we split into groups to do things for the people in our community.

I had a headache that morning, but I had summed it up to maybe I just didn’t sleep well enough, and I took some Tylenol and got ready for church anyway.

While sitting at the table that morning, I remember putting a handful of pencils and a pencil sharpener in a blue bag and handing it to my friend who was beside me, and then my whole world went black.

My mother walked over to me and tried to get me to talk to her, and about that time I stood up, my body going stiff and my eyes rolling back in my head, and I fell backwards into the floor, going into convulsions, foaming at the mouth and turning blue from not breathing. I woke up in an ambulance on the way to the hospital.

The paramedic tried to calm me down, attempting to explain to me that I had had a seizure and that I was going to the hospital, but that I was okay. I was so very scared. I had never had a seizure that I had known of, so I didn’t understand why this was happening now.

That week, we went to the neurologist I was referred to and they did an EEG test on me with strobes and other things, seeing if my brain waves were epileptic or not.

We waited about an hour in the waiting room and then they took us back to talk to the doctor, who told my parents and I that I did, in fact, have abnormal brain waves which gave me a diagnosis of Epilepsy. I was speechless.

They prescribed to me anti-seizure medication and made an appointment for us to come back.

My seizures grew worse, I struggled in school and I had many fears

I didn’t know how to react, what to think, or even how to mentally process what I had been told. I went home and curled up in my bed under my pile of blankets and laid there, crying, trying to understand what had just happened to me. I had so very many fears.

I was a very avid soccer player who was in marching band as well, and we went to competitions for music, marched in parades, so many things.

I was so scared that my life was falling apart at this point.

I didn’t want my dreams and aspirations to be taken from me.

I was depressed for awhile, scared to tell my friends what was wrong with me, I didn’t want to seem like a freak. I did stop playing soccer for a long time, though I was a very good goalkeeper.

“I felt like everything changed after that, but I didn’t give up.”

Throughout the rest of school, I began having more seizures of different types over time, and over the years since I graduated, my seizures have continued to worsen and become more and more frequent.

I struggled in school due to my epilepsy, but I am very proud of myself because I didn’t give up, and insisted to fight through it all. I cannot tell you how many times I fell out seizing in the middle of classes, during band events, at football games, and even in the middle of the hallway many times.

Thankfully, I had some amazing school nurses who did not treat me like I was any different than anyone else, and were able to take care of me in very many circumstances where I needed it greatly.

I graduated from high school in the spring of 2014 with 36 credits instead of the 28 that were required. Shortly after I was out of high school I was diagnosed of generalized myoclonic jerk seizures. I continued to have more and more different types of seizures, such as complex partial and simple partial seizures.

I have had many severe injuries due to my Epilepsy, and my friends have saved my life many times.

With the Embrace, I feel safer and I pray more people discover it also

I have been struggling for some time because I’ve been homeless for years due to having no income and not being able to be alone because of my epilepsy and how severe it is.

I have gone back and forth between staying with different friends, but I always have to make sure that whoever I stay with is aware and able to care for me because of my epilepsy and how frequent my seizures can be.

“Now that I have my Embrace, I’ve been able to become more free, more independent than I ever imagined that I could be.”

The most frustrating thing to a lot of us, including me, is that there are so many things that we want to do or continue to do in our life, but these things are taken from us because either we are afraid we will get hurt or the doctors tell us that it is unsafe for us to do.

I have been so scared for a long time to do anything at all alone.

I haven’t been able to cook alone or even something as small as walking into the pharmacy on my own to pick up my medications and then come back out to the car, even something that small was dangerous for me to do while alone. But now that I have my Embrace, I’ve been able to become more free, more independent than I ever imagined that I could be.

Now, I can cook on my own without someone standing there right beside me the entire time to make sure that I am safe.

I can go to the bathroom on my own while we are out in public and don’t have to worry about the what if’s like, ‘what if I seize and nobody knows who can help me? I used to be in the hospital emergency room at least 1 or 2 times every week, now it’s a lot less hospital and ambulance trips for me.

A couple weeks after I got my Embrace, I went into the pharmacy alone to get my medications, unfortunately I went into a seizure while in the store, but because my Embrace sensed that I needed help, it called my friend who was out in the car and she was able to come into the store to help take care of me.

I can sleep alone now without someone having to come check on me over and over during the night. My Epilepsy Specialist loves the Embrace because it gives her more accurate records of my seizures. My friends and I went on a 9-hour trip to another state about a month ago to attend a family funeral, and on the way back, we stopped at a gas station and I went to the bathroom.

There were some young teen girls in the bathroom playing with the air hand dryer and laughing (loud noises are a huge trigger for me with seizures), and because all of the stalls were being used, I stood there with my hands over my ears trying to keep from seizing until I could use the bathroom and get out.

Then I had a series of myoclonic jerk seizures which caused me to fall to the floor against the wall and hit my head, because of the sound. Those girls then began imitating me and making fun of me.

Thankfully, because I had my Embrace, it was able to call my friend outside and get me help, I could have gotten hurt very badly had I not had my Embrace. It makes me feel so much safer, more than I can even attempt to explain in words.

I would recommend the Embrace to anyone who has seizures, ones that cause them to get hurt, ones that make them afraid to do the things that they love.

I very much think that the Embrace could have saved my fiancé if he had one.

He died in August of 2016 at 21 years old from an epileptic seizure, because he went into status epilepticus but no one was nearby to be able to help him, and I truly believe that had he been a person with an Embrace, it could have gotten him the help that he so very much needed at that time.

I pray that more and more people discover the Embrace, because I truly believe that it could save many lives as well as make people have the independent lives that they long for.

Dreams and Aspirations

I am a musician, I am an artist, and I love to write.

I would love to be an author.

These things have been taken from me a little since my diagnosis, because I feel that I have allowed it to happen, but now I am fighting as much as I absolutely possibly can to take my life back from Epilepsy. My memory has been very much affected, but I have been working very hard on improving it so that I can do the things which I love to do and have great talent for.

Epilepsy is so overwhelming to me at times, it frustrates me and breaks my heart how I can be okay and then simply a second or minute later, I’m not okay. The continuous hospital trips really get old after awhile, it’s hard for me to convince people that I do not need an ambulance called every single time that I seize.

Currently, I average 50–60 seizures on a daily basis (sometimes more) of different forms due to my epilepsy.

Epilepsy is very embarrassing for me to have.

This all scares me and discourages me greatly, but I continue to fight because I know that I cannot allow Epilepsy to rip my life away from me.

I may have epilepsy, but epilepsy does not have me!

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