Childhood Epilepsy Conquered: Alex’s Story

No Longer Suffering in Silence

Things looked bleak when Alex was young, but now he’s been seizure free for 20 years! See his unexpected advice about living a full, happy life with a disability, and not suffering in silence.

Sometimes you get a chance to take something bad and turn it into something good. That’s the choice Alex made.

A shock before college

Alex can’t tell you much about his epilepsy because he didn’t know about it until he was 18.

He was skimming through his medical records for college and literally “saw” the news staring at him in black and white. It was a shock.

His parents sat him down to explain. Alex’s problems started with a massive epileptic seizure when he was 18 months old. It was so severe that he ended up in a coma for an entire month. It was torture for his family.

“I was barely clinging to life. They didn’t think I wasn’t going to make it, but somehow by the grace of God, I was able to recover,” he explained.

The next seizure happened at age seven while Alex was sleeping. He recalls waking up in the hospital with an oxygen mask over his nose and mouth. He was prescribed anti-seizure medication, but being a young boy, he didn’t understand what it was for.

He also didn’t know that the seizure resulted in brain damage that caused intellectual challenges, such as taking longer to process information. “It just takes me a minute to register,” Alex said.

While he never had another seizure, that event changed Alex’s life forever. Since then, he’s always worried when the next seizure might happen. Alex was taken off seizure meds at 18, being told he outgrew his childhood epilepsy, yet he can’t erase the worry.

To this day, it’s still a mystery what caused Alex’s epilepsy, and there is no family history, but he’s thankful it’s gone.

A second challenge adds to the pain

However, another problem persisted. Alex developed cerebral palsy after his first seizure.

This is not uncommon. Nearly 50% of children who have cerebral palsy also have epilepsy, but neither disorder causes the other, according to Cerebral Palsy Guidance. They just tend to co-exist.

But Alex’s family didn’t know he had cerebral palsy because the doctors misdiagnosed him with a different condition. Alex prefers not to name that disorder because it includes a currently derogatory term that carries great stigma.

Unfortunately, Alex LIVED the stigma. He has vividly painful memories of being teased and bullied as a child for being different. “It’s absurd what I went through,” Alex said, and these experiences later gave him the drive to advocate for others.

At 14, Alex found solace in starting a business as a DJ for parties. His father was a popular local radio personality, so Alex was familiar with the music industry. He threw himself into this new venture and took pride in building success on his own.

Then, in his mid-20s, doctors correctly diagnosed Alex with cerebral palsy. Not wanting to explore that chapter of hurt again, he decided not to tell a soul.

Alex has a change of heart

A few years passed, and Alex’s outlook changed completely.

His DJ business had grown to play gigs all over the San Francisco Bay area and beyond since 2001. His favorite events were working with charities like Make a Wish, the American Cancer Society, and the Special Olympics.

Alex saw the gratitude of the people attending and could feel that he was making a difference in their lives at that moment. Yet half the people he worked for didn’t realize he had a disability, Alex said.

It now became important for him to show others that he could make an impact despite his challenges. “I had bottled it up for so long that I wanted to break my silence about my disabilities on both a personal and professional level,” he said. So he began to share his story on his terms. His efforts were met with support and respect.

Two jobs and a mission

In addition to his DJ work, Alex works part time as a campus supervisor for a California school district, a job he’s held since 2015. One day, Alex saw a student having a seizure. He came to her aid, stayed with her, called for an ambulance, and even went to the hospital to ensure she was ok.

The whole incident brought back a flood of memories, and it was the first time he had seen someone else having a seizure. It re-opened the trauma and anxiety, but Alex found it rewarding to help.

A new purpose through activism

Alex now sees advocacy as part of his personal mission. He works to bring awareness and fair treatment to all people with disabilities.

In 2022, he was appointed by Governor Gavin Newsom to be a council member on the California State Council on Developmental Disabilities. The group helps make sure that people who have developmental disabilities obtain the services and support they need to live independently and be active members of the community.

Alex was recently invited to be on a California police department’s Chief Advisory Board, and he’s eager to make an impact there, as well.

Today, Alex is happy with his life and finds fulfillment in empowering others. He enjoys traveling, going to theme parks, and spending time with his family and his dogs, Jack and Louie.

“These days I just tell people, ‘This is who I am and what I’m about,’” Alex said. “If you tell someone about your disability and they don’t treat you well, then you know they were never your friend.”

Q&A with Alex

What advice do you have for someone with epilepsy?

“My advice to anyone with epilepsy is to live your life to the fullest. Do what you need to so that you can forget that you have epilepsy,” he said. Go out with friends, go for a walk, do things you like, and LIVE!

“It’s also very important to develop a support system” so you can open up and talk freely to people you trust, Alex pleads. He remembers feeling alone and doesn’t want others to be in that sad place. If you can’t find support by talking to your close friends and family, Alex suggests joining a support group.

Should you tell someone you have epilepsy?

If you’ve just been diagnosed, Alex said you should be cautious before telling people. “It’s your right to tell or not tell people about your disability,” he said. Take time to process the news and think about the people around you. First confide in the people you trust within your inner circle.

As a child, Alex’s condition made him the target of bullying, so he encourages you to be realistic about who is around you and what they might do with the information.

“For your own safety, don’t tell everyone unless you are ready,” he said. Putting news of your disability on social media might invite the good, but it can also invite a lot of bad. People might use it wrongfully, Alex warns, so he stresses that you must think it through.

What is the hardest part of having epilepsy?

The hardest part is worrying about the next seizure.

“Although I haven’t had a seizure since I was seven, I still have the fear,” Alex said.

Even now, when Alex is sleeping and gets a cramp on his knee or feels like he’s shaking for a couple seconds, he remembers having the exact same sensation at age seven. He has to calm his anxiety and remind himself that it’s been years since his last seizure.

What’s the best way to support someone with epilepsy?

If you know someone with epilepsy, Alex said to check on them regularly, offer support, and be a friend. People need help beyond only the times when they’ve just had a seizure. They need to know they are not alone.

Continue to follow up with check-ins. If the person doesn’t contact you for a while or you notice they haven’t come out of their house, take time to check on them.

“Call the person, go out to lunch with them, or get together.” That social contact is very important.

Do you have advice for caretakers?

Caretakers should know the warning signs of the patient’s epilepsy, Alex says. If the person with epilepsy displays a prewarning or senses that something’s not right, pay attention and do not leave them alone because a seizure is probably coming. Stay by their side the entire time during the seizure and offer calming assurance throughout the seizure, even if it seems they aren’t aware.

Do you have a personal epilepsy story that you would like to share? Please reach out! We’d love to hear it.

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