We tend to turn our eyes away, from the things that don't concern us...that is until they make the headline news.
The title of this blog says it all. I sit here, in a Starbucks FULL of people on their laptops and phones, chatting with one another and I want to shake them and yell WAKE UP. LISTEN. Why? Because my heart is wrecked. Completely w r e c k e d.
Recent News in the Epilepsy Community
There’s a fire that has been ignited since I heard the news of Disney Channel’s star, Cameron Boyce dying from SUDEP – Sudden, unexpected death in epilepsy. Cameron is a respected, and well-liked actor. He was most known from Disney’s “Jessie” and the “Descendants.
In Full Transparency...
I’m going to get real with all of you because transparency is what has made me become more aware of the world around me and I hope it’ll wake you up as well. I have so many questions stirring around my mind when I think about this…
- Why do people only care when it happens to a celebrity?
- Did Cameron hide it from the media or Disney?
- Did Cameron and his family hide it from his friends?
- Why does the work force still hold a NEGATIVE stigma on those battling with Epilepsy?
- Why do people think because we have an illness we DIDN’T choose, it makes us of lesser value?
-Why do people think those with epilepsy have less skills or abilities to do a job not only with justice…but don’t expect those battling with epilepsy, to exceed their expectations?
Cameron Boyce
“He wasn't JUST a celebrity. He was a son, a friend, a brother... and honestly, that matters so much more than his job.”
I share my thoughts with you today with sincerity. From all of the interviews I read and watched, Cameron was a celebrity that worked extremely hard to get to where he was, especially on Disney. Although, he wasn’t JUST a celebrity. He was a son, a friend, a brother… and honestly, that matters so much more than his job.
I don’t want you to think I’m shaming celebrities or actors for their job, because I truly admired for his work and many more celebrities in Hollywood. We were BLESSED by his presence in our childhood shows or for our brothers, sisters or children to look at as a role model as they grew up. BUT why don’t we look around at the people who are in our lives NOW with the same value? Why don’t we treat those beside us, who we employ, or those we truly don’t “know”, with the same value and respect as we would treat our son, brother, daughter, sister, child, spouse, etc.?
I have such a passion for this because if this is the first blog you’ve read of mine, you may not know I have epilepsy. If you have read my blogs or know me, you know I can’t keep silent about issues that are close to my heart. 50,000 lives are taken each year by epilepsy… and my life could’ve been one. I battled with the all-consuming fear of being in that statistic… and Cameron, unfortunately became a part of that number.
I’ve met so many people through Fearless Movement’s programs and mentorship program. SO many of the girls and boys I meet have uncontrolled seizures which is the first sign of being at a higher risk to SUDEP. When I meet with their parents, I see the fear in their eyes and I hear the concern in their voice as they ask questions for guidance and direction. I’m certainly not a physician and I don’t know everything, but I’m thankful to have the opportunity to share all that I’ve learned from pediatric and adult neurologists and my own personal experiences.
I can’t stay silent on this news because it’s time our workplace changes. It’s time our school atmosphere changes. It’s time our society CHANGES the way we look at those battling with epilepsy and the way we DON’T pay attention to the severity of this illness.
I talk to students every day who get treated differently in school because they have epilepsy. They are either judged for their illness or not cared for by our school district to have their educators properly trained on the precautions to take or to help them in different areas.
I talk to employees every day who battle with the negative stigma in their work or who can not get hired due to their epilepsy. I have personally been discriminated by in the workplace in promotional areas by my employers saying, “We don’t want to give you anything more, you know… because of your health.” Or “We don’t want to put you at risk or believe you can handle it because you’ve been seizure free for so long, we want to keep it that way.” And so many more comments along those lines…
In NO WAY, have I ever fell back on my illness or allowed it to affect my professional life, skills or abilities. I have made sure in EVERY way that the only time I spoke of it, was when I was first hired to share the proper steps to take if I were to have one around them, had speaking engagements with Fearless Movement or had someone in the workplace who had a loved one just diagnosed because of the negative stigma and to give comfort and ease.
I wonder if Cameron Boyce’s epilepsy wasn’t known to the public for that reason alone. I am so sorry to Cameron and his family, if our society made you feel like you had to keep your battle silent.
This post is for those who feel the way I have felt at one point; for the parents who fear for their child’s life, and for the world to know, people shouldn’t have to die, in order for us to truly listen.
It’s time we stop turning our heads at things that don’t concern us and start listening and sharing because LIVES are at stake. Want to “be the change?”Get informed and start talking.
I know many children with epilepsy have been asking their parents what to do in order to prevent SUDEP out of fear, or parents fearing for their own children and this is what I’ve learned:
First, Knowledge is POWER. Some Facts about SUDEP brought to you by Centers for Disease Control and Prevention:
Most, but not all, cases of SUDEP occur during or immediately after a seizure. The exact cause is not known, but these are possible factors:
Breathing. A seizure may cause a person to have pauses in breathing (apnea). If these pauses last too long, they can reduce the oxygen in the blood to a life-threatening level. In addition, during a convulsive seizure a person’s airway sometimes may get covered or obstructed, leading to suffocation.
Heart rhythm. Rarely, a seizure may cause a dangerous heart rhythm or even heart failure.
Other causes and mixed causes. SUDEP may result from more than one cause or a combination involving both breathing difficulty and abnormal heart rhythm.
Risk Factors for SUDEP:
Uncontrolled or frequent seizures.
Generalized convulsive (also called tonic-clonic or grand mal) seizures
Other possible risk factors may include:
Seizures that begin at a young age.
Many years of living with epilepsy.
Missed doses of medicine.
Drinking alcohol.
Steps to reduce the risk of SUDEP:
First, speak to your doctor regarding YOUR risk of SUDEP.
Take the medication or continue your course of treatment as prescribed to control your seizures.
If you have continued uncontrolled seizures, consider seeing an epilepsy specialist if you are not already seeing one.
Avoid seizure triggers (if known) such as sleep deprivation, dehydration, exhaustion, etc.
Avoid drinking too much alcohol.
Make sure you’re getting enough sleep every night.
Better control your seizures with self-management programs.
Train adults in the house, your employers, and teacher’s seizure first aid.
To end on a very real note with you…
I have missed doses of medication, didn’t get enough sleep, and was extremely fearful to educate those around me on seizure first aid while battling uncontrolled seizures. But OUR LIVES are at stake if we don’t take this seriously.
My advice for parents to share with your children who battle Epilepsy and now fear for their life:
· Share with your children that Epilepsy is only a part of their life, it is not their entire life.
· Epilepsy can be managed and it’s important to share with our doctor, everything that is going on in our lives, especially mentally and emotionally, in order to protect our health.
· Knowledge is power. Be your own advocate.
- This is one of the most important conversations to have. Epilepsy is not anything one should be ashamed of, but something that needs to be shared about. Educate your child on seizure first aid and practice self-confidence methods.
· Show your child message boards of children speaking out about their epilepsy, or videos to show them, they’re not alone.
· Share with them, that their story, their battle, can inspire others to keep fighting as well. Their story, can be a catalyst for change by creating awareness in order to save LIVES.
My advice for Parents who fear for their child:
· Seek counsel. It’s important that you are receiving help in navigating this illness for your child and that your child, doesn’t sense your fear but feels your comfort and strength.
· Monitor medication and teach your child to remember when to take their prescribed medication, or stay on tract of their treatment such as diets, etc.
· Take away cellphones, TV and electronic devices when your child sleeps.
· Limit screen time.
· Help your child find an outlet for their stress such as creative arts therapy, sports, etc.
· Knowledge is power and be your child’s advocate.
- This is so important when it comes to your child getting their education. Make sure all of your children’s educators know seizure first aid.
- Make sure your child knows the proper steps to share with their friends around them.
- Make sure your child knows what triggers to avoid (if known).
- Empower your child through knowledge to where you can trust them to be independent, on their own.
· Teach independence and give your child space.
- This is the last point, but very important. As a child with a mother who was extremely protective, I appreciate all that she did. She learned how to teach me independence to take care of myself on my own, and to let me go out with my friends. I did get the text messages of “Take your med” or “Drink water” which were great reminders – but the space she gave me, empowered me to take control of my illness instead of my illness controlling me.
My condolences and prayers go out to Cameron’s family members and friends. I can’t imagine the heartache and suffering his family is battling with, so I would like to take the time to say I’m praying for you and that the Lord is my healer, comfort, and King of peace. I’m not sure what you or whom you believe in, but I’m praying you receive the peace and comfort I have in a time of mourning and loss.
If your school, work place, or family needs seizure first aid training or would like someone to come and speak regarding epilepsy and seizures, please contact Fearless Movement.
To sign our petition to make it mandatory for educators to be CPR/First Aid certified in the classroom, so no child has to fear while getting their education, click here.
If you are battling with epilepsy, have a child or loved one fighting this illness, it’s time we shatter the glass ceiling of limitations and create awareness, further research and treatment to lower the number of lives lost, to SUDEP.
If you would like to donate towards our efforts, click donate. If you cannot donate, we would love for you to get involved!
In order to create more awareness, please share this blog on Facebook, Twitter and Instagram. Make sure to follow us and tag us -> Facebook: @fearlessmovementFM -> Twitter : @DROPFEAR_ -> Instagram: @Fearlessmovement.
You’re not alone. You always have a seat at the table with us. Now with the world? Pull up your own seat.
xoxo, always here for you,
Ashley Kulikowski
Founder and CEO of Fearless Movement
Personal Instagram: @ashleykulikowski
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