Beginning with a birth defect from her late father’s exposure to agent orange, Elena’s journey with epilepsy is unlike any I’ve come across. Two broken ankles, the passing of her father, brain surgeries, and a sweet service pup are just a few of the details in Elena’s story. She has been put through the fire and come out stronger. If you’re prepared to learn and be inspired, give her story a read.
Name: Elena Halfhill
Location: Miami, Florida
Interests and hobbies: Harry Potter, painting, jigsaw puzzles.
Occupation: I worked as a Rehab Tech in a hospital up until January 2019 when my dad passed.
Three words to describe epilepsy: Invisible but Real
What do you remember about your first seizure?
I didn't even think it was a seizure. It was a twitch of the arm that progressed into full grand mal seizures over the span of about 2 months. They began as small muscle spasms so the doctors didn’t think it was serious.
How has having epilepsy changed the way you see the world?
It has made me think about how everyone has their own circumstances and those shouldn’t be undermined or judged. Whether you can see their illness or not, everyone deserves respect.
What advice do you have for people who are caring for a loved one with epilepsy?
There are going to be good days but there are going to be bad ones as well. Don’t panic just comfort and let them know that you’re there and won’t leave. Sometimes all that’s needed is a little comfort and support knowing that there’s someone who won’t leave.
What keeps you going?
My family, my service dog Wally, and the thought that there are others going through the same thing I am.
How did you and Wally find each other?
I was paired up with him through an organization called Patriot Paws. Since my seizures are caused by my dad's military service, the VA (Veteran's Administration) helped me get in contact with them and they assessed my needs and Wally has been my partner in crime ever since.
Wally alerts to my seizures about 30 seconds before they happen. He also alerts to any drop in blood sugar. I have depression and anxiety so, (especially recently) he is trained to interrupt any self destructive behavior. For example, if I were crying in a ball on the floor, he is trained to nudge my face up or lick me until I 'snap' out of it.
What would you tell someone who was recently diagnosed?
You have seizures. Seizures don’t have you. Invisible illnesses are still real and it’s going to be tough but it gets better and you have to be your own advocate.
Elena’s story in her own words:
When I was 10 years old, my arm started to have small twitches and over the weeks, the twitches progressed. I told my mom about it but she thought it was growing pains and dismissed them. Finally, one night we were in the living room and my arm twitched up into the air with my head turning. She dropped what she was doing and drove to the ER where we sat all night just for the ER doctor to tell me it was stress and that I should count to 10.
Over the next couple of months, I would go from Neurologist to Pediatrician with no answers. My Neurologist requested an EEG which would be the first of many. I didn’t know what it was but I was terrified anyway. That began the two years of repeat testing. MRIs, CTs, PET scans, SPECT scans, Angiograms, countless blood tests, psychological testing, and more. This was when I was paired up with my now furry best friend and service dog, Wally, an 85 pound dalmatian. He never leaves my side and tells me when I’m about to have one or if I need to calm down and take it easy.
After two years, the doctors had discovered that I had a rare genetic form or a birth defect called a Cavernous Vascular Malformation, caused by my father’s exposure to Agent Orange in the Vietnam War. In the summer of 2011, I went through 2 open skill surgeries in one week. I started school 2 weeks later.
March 5, 2015. I won’t forget this day because this was the day that my life would change. After my surgery, I was slowly taken off my seizure medication and deemed “normal” as I like to say. But on this day, I had a massive breakthrough seizure that I don’t even remember having. That was the day that I was put back on a medicine cocktail and went back under “lock and key.”
My most recent seizure was April 30, 2019. It was a big surprise for me and now I’ve began looking for a Neurologist since I am now 21 and too old for my Pediatric doctors at the children’s hospital. The neurologist that I saw while at the hospital this past April/May, said that the recent events in my life probably contributed to the seizure.
I had broken both of my ankles back in May, yes both at the same time. I spent the summer in a wheelchair or stuck in bed, started my Masters’ degree that August, worked the entire time. I think the snapping point was when my dad died this past January. He was my best friend and my biggest advocate when it came to my ‘head stuff’ he liked to call it. He was always there for me when I had questions and when I needed help. All of a sudden he wasn’t. My world came crashing down. I dropped classes, quit my job, isolated myself in my apartment. It was bad.
Now, I’m trying to get my act together. I’m going to therapy for my depression, grief, and major anxiety. I’m trying to make more friends that can understand exactly what I’m going through instead of talking to people who think they know but don’t have constant worry of having a seizure.
The doctors know about my condition data wise, but they don’t know about my condition. They don’t know how it feels to have a seizure.
I’m not my seizures, I’m not epilepsy. I’m Elena and I have seizures. seizures don’t have me.
You can find Elena on Instagram @ehlenaaaaah_