Lucky Enough to be Different
WRITTEN BY: Mandy Welch
Gymnastics is a sport that takes strength and vigor both physically and mentally.
It takes dedication and tenacity.
Most of all, it takes power and control.
But what if sometimes, you had no control over your body, no matter how hard you tried?
Would you be willing to face that challenge every day?
Would you find the determination and bravery to keep going?
This is Vivi.
Vivi is a talented gymnast who will be competing Level 9 this season.
She recently became the Region 3, 2019-Level 8 Bar Champion and placed 4th on Vault as well as in the All-Around!
Vivi has also lives with a seizure disorder called epilepsy.
kidshealth.org defines epilepsy and seizures like this:
WHAT is a SEIZURE?
Seizures are caused by a sudden surge of electrical activity in the brain. A seizure usually affects how a person looks or acts for a short time. Someone having a seizure might collapse, shake uncontrollably, or even just stare into space.
WHAT is EPILEPSY?
A person who has had two or more seizures may be diagnosed with epilepsy, also known as seizure disorder.
1. Usually, electrical activity in the brain involves neurons in different areas sending signals at different times. During a seizure, many neurons fire all at once. This abnormal electrical activity can cause different symptoms depending on the part of the brain involved, including unusual sensations, uncontrollable muscle spasms, and loss of consciousness.
2. Anything that results in a sudden lack of oxygen or reduced blood flow to the brain can cause a seizure. In some cases, a seizure's cause is never found.
3. Doctors often can't explain why a person has epilepsy. They do know that epilepsy is not contagious — you can't catch it from somebody.”
Vivi has experienced many seizures throughout her life, with two of them even occurring during gymnastics. It’s a frightening disorder to live with because every day has the possibility of a seizure for her. Imagine waking up every single day not knowing whether your body will function properly or not. That is a day in Vivi’s life. In fact, it is every day in her life.
When Vivi was diagnosed with Epilepsy, she was only 14 months old. Sometimes people who have epilepsy have an aura, or a warning sign that a seizure is coming, but for Vivi there is never any warning of when she might have a seizure. Because of this, she faces many extra challenges in her day to day tasks. She needs to be extra careful when she is in a place where she could get hurt if a seizure was to occur, like in the shower, swimming or in a high place.
Fortunately, Vivi takes medications to help control her seizures. She is diligent about taking them twice every day. One side effect of the medication affects her concentration and the speed at which she can process new information.
“I’ve taken medication for so long that it is just part of my routine."
The medications give her frequent migraines, but she courageously endures them in order to keep the seizures under control. Vivi has a few supplements she can take that help counteract the side effects of the medications she is taking, making it more bearable.
“I’m more likely to have them (migraines) when I’ve had to spend a long period of time trying to concentrate or study. My neurologist has me on a “migraine” plan which includes supplements, medicine to take if I feel a migraine coming on, and then an actual migraine medicine.
If it gets to that point, I’m not able to do anything but sleep it off.”
Epilepsy has caused Vivi to develop a high level of responsibility, and often times, her priorities are a bit different than other girl’s her age. For example, many teens are preoccupied with enrolling in Driver’s Ed. and getting their licenses’- a privilege Vivi will likely never be afforded.
It takes a village, as they say, and Vivi’s village is made up of her family, coaches and friends. Vivi’s family are her biggest supporters by far. Day in and day out they go the extra mile to make sure she is taken care of, safe and supported. They spend countless hours driving her to and from the gym as most parents do, however this will continue as long as Vivi is in the sport (as driving will likely never be possible). When her mom stays to watch practice is not just a chance to see Vivi’s progress, it's actually a safety precaution.
“It’s hard to completely step away and not keep an eye on a child with a health issue.
In order for her to do gym, we’ve had to be present a lot more than we would otherwise.”
-Shannon (Vivi’s Mom)
Her coaches have been educated on what to do should a seizure occur during practice, so that they can help keep Vivi safe as well. They are supportive of Vivi in her gymnastics as well as her epilepsy. Her coaches are patient with how she is feeling and allow her to sit out if she feels a migraine coming or needs a break. In case of a prolonged seizure, emergency medication is kept on hand at the gym as well as medication for her headaches.
One of her coaches, Coach Esther, even wears a “Proud Coach of an Epilepsy Warrior” shirt every Wednesday to gym to show her support.
“My coaches are usually good about allowing me time to take my meds, sit out or even leave practice if I need to.”
Vivi’s mother, who is also a nurse, knew the implications of Epilepsy on Vivi’s life the moment she was diagnosed and was utterly heartbroken for her. Staring into that beautiful 14 month-old’s face, she knew that despite the diagnosis, Vivi’s life was still an unwritten story. A story of a strong girl, who happened to have a unique challenge to overcome. Vivi’s mother knew that all she wanted for her was to be accepted, successful and most of all happy!
Because of this, every day, she fights through the heart ache and fear of letting go and uses every opportunity to teach Vivi to be strong and brave. Vivi’s mother strives to find every way possible to let her be a normal kid and pursue her dreams. If gymnastics makes her happy, then nothing is going to stand in Vivi or her family’s way to make that happen. The pride her mother feels while watching her succeed, despite all of her extra challenges is immeasurable. There are many things that will be different for Vivi in her life, but gymnastics will not be one of them.
“Not in the beginning (it wasn’t a hard decision to allow Vivi to do gymnastics). As the skills increase in difficulty, I always worry about her. But, I’ve also learned that ultimately she’s doing what she is passionate about. How can I take that away from her?”
-Shannon (Vivi’s Mom)
Vivi has experienced setbacks any gymnast may face, such as a broken ankle at the beginning of her Level 6 season, then breaking the other ankle the night before her first Level 7 meet. Through all of it, she worked hard and was able to come back stronger, advance a level and still qualify for Regionals as a Level 8!
“I like the mental toughness that is required. I also love bars and vault…they require lots of power and that’s my strength.”
This year, however, three days before competing at Regionals as a Level 8, Vivi had a big seizure at the gym. Determined to not miss Regionals, she pulled through and decided to compete. It was at this meet that Vivi won bars, making the victory so much sweeter!
“(Vivi) made me so proud…. It truly takes a lot of mental toughness to be able to compete and be at your best only days after a big seizure.”
-Shannon (Vivi’s Mom)
Mental toughness is definitely one quality that both gymnastics and epilepsy can strengthen. Vivi has had numerous opportunities to practice mental strength in her life and is becoming incredibly strong. Sometimes, Vivi admits, she doesn’t tell people that she has epilepsy out of embarrassment and the fear of being judged or laughed at.
She has been the subject of mean words and jokes plenty of times because of her epilepsy, even once from her own teammates. When a teammate pretended to have a seizure while everyone else laughed, it made Vivi even more self-conscious about her epilepsy.
Knowing the possibility of having a seizure at the gym is very likely and being afraid of being ridiculed for it, is tough to bear. The first thing Vivi asked her mother after having the seizure at the gym before Regionals was if everyone had laughed at her. Thankfully, no one had laughed and a teammate even texted her later that evening to see how she was feeling. It is thoughtfulness like this that makes Vivi feel supported and cared for the most.
“Having people who aren’t afraid to ask me how I’m doing or if I’m ok is what makes me feel supported.
I’d rather people ask me because it makes everyone more comfortable in the end.”
Vivi truly has a heart of gold and she isn’t afraid to share it. She is thoughtful and loving to her family, coaches and friends, and holds a special place in her heart for the “under dog”. Because of this, she devotes her time to making sure others never feel excluded or left out.
Outside of the gym, Vivi enjoys baking treats for her loved ones, often bringing them to her coaches and friends at practice. She likes to surprise others with kind acts, like packing lunches for her family with sweet notes inside.
While some may turn bitter and spiteful, Vivi’s challenges instead have made her strong and sweet. She is keenly aware of what it feels like to be different and although she knows firsthand how hurtful words can be, she wants others to know that you should never give up because of them.
“Words matter. If any gymnasts out there have a teammate who lives with a chronic illness or disease, sometimes a simple acknowledgement of support and inclusion can go a long way!”
-Shannon (Vivi’s Mom)
*Always remember, everyone is different.
Not better or worse. Just different.
If you see someone being made fun of, you can help!
Try standing close to them to show that they're not alone,
expressing your sympathy or
reaching out to a trusted adult for help!