Seizure star: Alyssa D'Amico
Alyssa D'Amico has been chosen to be our Epilepsy Star for our June quarterly newsletter. In this interview, she tells us about her journey with epilepsy (medications, surgeries, and more) and what she is doing to live to her full potential while also raising epilepsy awareness through her book "Short Circuit: An Epileptic Journey" and her speaking engagements.
Tell us a little about yourself: how old are you, where do you live, what do you do?
I am thirty years old and was born and raised in Queens, New York. When I was six years old, in 1994, I was diagnosed with epilepsy and have been living with it ever since. Of course, being so young I didn't understand all that much and alternated between anger and sadness. As time passed, I realized that acceptance and knowledge were the best way to deal with this. I asked questions, read things and made up my mind that epilepsy would not stop me from doing anything. Now, I accept my epilepsy and know it may not go away, but that is OK.
Not long after I was diagnosed, I started writing poems and have continued this until today. Poetry is an important part of my life and had always helped me to handle both good and bad situations. I write poems about love, friendship, heartbreak, family, friends, depression, anger, happiness, and, of course, epilepsy. I perform poetry readings throughout New York City, Long Island, Vermont, and upstate. I also have a Bachelor of Science in psychology.
How did epilepsy first touch your life?
I don't think many people realize how much of an impact epilepsy has on a person's life. Epilepsy first touched my life as darkness. In third grade, because of it, I could not attend school for six months. I missed a lot of time in elementary school. I loved school, being with the other students and learning. I remember it as a time of pain and nervousness. It affected how some of the students reacted to me and the side effects of medication. But there was a part of me that knew I needed to move on in life and I did.
As funny as it may seem I was on a basketball team and never once had a seizure while playing. Was it because of how much I loved to play? And although epilepsy has been tough to live with, I also feel that if I didn't have epilepsy, I might never have started writing poetry or I might not have made the same friends.
There are also many things I am thankful for. I am thankful for Our Lady of Mercy, the school I attended and graduated from in eighth grade. They understood about seizures and it felt good to be accepted and treated the same as others.
How have you and your treatment team tackled your epilepsy? Has anything been especially helpful?
The treatment started with medication. Unfortunately, by third grade we had tried almost every medication that was available at that time. I was evaluated for surgery and the team proceeded with operating on me. Surgery was chosen because of how severe and how often the seizures happened. Unfortunately, it did not help. I was young, afraid and angry after this first outcome. However, five years later, in eighth grade, the second surgery was performed. Unfortunately, on the way out of the hospital I had a seizure and had to go back in. This was a big disappointment, but to an extent, this surgery helped. Nine months later, I had the third and final brain surgery. This time I had to be awake and repeat the alphabet, so speech would not be damaged. I remember it tickled a lot! As odd as this might sound, it was very interesting. It was also very helpful, even though it was not a full success. The seizures began coming further apart and not as strong. However, ten years later, the seizures became more active and serious again. I felt as if it was a flashback of third grade, only thing is that now I was an adult and able to understand more. At first, we were not sure what to do. Then it was explained that now would be a good time to get a vagus nerve stimulator. After having that stimulator implanted, things changed. Now, I no longer have generalized seizures and when I get an aura I can swipe the magnet and it will stop the seizure or make it less strong. This has allowed me the freedom to pursue my goals. Now I have one or two partials a month.
Tell us about the book that you recently published: "Short Circuit: An Epileptic Journey" What was the reason for writing this book and who is the intended audience?
"Short Circuit: An Epileptic Journey," is a poetic memoir about when I was diagnosed to now, in chronological order. It begins in elementary school, then high school and all the way to college and the present. It covers medication side effects, surgeries, friendship, love, and of course seizures. My goal in writing this book was to let others, not only with epilepsy, but other problems as well, know that they are not alone. That others are experiencing similar things to you and that you can keep going and succeed. That it is important to stay strong and never give up. As my karate teacher used to say, Winners never quit, and quitters never win."
Another goal of the book was to make people more familiar with epilepsy. Epilepsy still has a stigma attached to it. Unlike other conditions like autism, and HIV, most people do not know much about epilepsy. When taking medication people tend to ask if the pills are drugs or what is wrong with you. Telling people, I just met that I have seizures they immediately think I fall or think there is a difference in epilepsy and a seizure disorder. That just shows how unknown it is today. My goal is to try to correct this.
Tell us about your future career: do you plan to work with persons living with epilepsy?
I look back remembering difficult times when young and feel that I am in a unique position to help people with epilepsy to believe in themselves and find out how far they can get. I would like to work in the neurological field. Having an illness is hard to face and some people give up and feel different from others. I am determined to psychologically and educationally help them to recognize their strengths and weaknesses and never give up.
What plans do you have for your work with epilepsy this upcoming year?
Awareness is one of the most important issues with epilepsy. Through the publication of my book and poems, my performances, particularly outside of medical and foundation settings, I hope to bring epilepsy out of the shadows and into the light. I had book launches in Brooklyn, Westchester, Vermont and performed the poems from my book throughout New York. Albany Poets, which published one of poems, hosted an event in August to introduce my book. After the readings there are always questions and many people have told me my book is truthful about life and an eye-opener. The poems have been published collectively and individually, in Canada, Tennessee, Upstate New York, New York City, Washington D.C, both by epilepsy foundations and private organizations.
I am currently working with a young adult's epilepsy support group, reading the poems and discussing them afterwards. I was on their panel in July and part of several events for epilepsy in November. In October I was asked by a doctor if I would be willing to introduce myself and perform poetry from my book at an event, A Lot on the Mind: Epilepsy, which took place during November, epilepsy awareness month, at Caveat in the Lower East Side. When there, I found it very interesting to hold, learn and discuss a human brain with a member of BraiNY, which also sponsored the event. My presentation went over so well that I was selected to be a feature with The Story Collider, June 3rd.
At the request of a professor, I lectured several of his undergraduate classes on epilepsy. A full explanation was given, and my personal experiences related. This was followed by a discussion and question and answer period. It always amazes me at how little people know about epilepsy, it's causes, treatment and symptoms. After I was a feature at The Queens Book Fair and Literary Festival, July 2018, I was asked by the director of children to adolescent summer camp to teach them "something they need to know to get further on in life." I chose to lecture on self-esteem. Surprisingly, I did not even make a lesson plan, but taught them from my heart. I explained that I have epilepsy but that never stopped me from moving forward in life. Also, how there is no such thing as a normal human being, no one is perfect because everyone has strengths and weaknesses. Also, how to believe in themselves, have faith and confidence even if you have a disability, whether it is epilepsy or something else. All of us have a reason for being here and they must figure out what their destiny is.
What would you like seen accomplished going forward in epilepsy?
Well, of course, I would like to see a cure, a medical breakthrough that would revolutionize the treatment of epilepsy. I don't think it will come from new medications, but rather some kind of implant. My hope is something that would eliminate the terrible side effects of medication.
This brings me back to awareness. This is not only important because of the stigma still attached to epilepsy, but also because it could generate a large amount of funding for research and development. I want people to know about the many organizations dedicated to epilepsy. I would like to see ads, not only occasionally on social media or email, but on trains, buses, television, spots, newspapers and magazines. Similar to AIDS, autism, cancer, Parkinson's Disease, Epilepsy should be brought to the forefront. People, even at this time, still think of seizures as grand mal or a mental illness, thanks to how it portrayed on media. When I invite friends or co-workers to join me on epilepsy walks, none of them know about it. Even a friend that has Asperger Syndrome, and seizures, did not know about the walk. I would like to see a campaign to advertise the walks, bulletin boards, TV ads and newspaper ads. You can't get people to come to a walk if they don't know about it. Just as you can't expect people to know about it if the information is not readily available. To most people epilepsy is still a mystery. They know nothing about causes, symptoms or treatment. I think this is a major stumbling block for us all. To clear this up would be a great help, not only on a personal level but also to advance research for a cure. Going forward, that is what I would like to see accomplished!
