Finding Freedom with Epilepsy

Wednesday, November 9th, 2016



I love my sister more than words could possibly express.

She was the one I wanted to be like when I grew up.  As a child (and as an adult) I looked at her and saw intelligence, beauty, humor, patience, compassion and love but most of all no matter what I did (and I was a little beast at times) she was never mean to me; ultimately, she had every right to be since I would go rifling through her personal diaries, throw cold water at her when she was in the shower and was generally the annoying younger sister.  However, the extra unexpected element in all our lives was my epilepsy.

I’ve had many years to ruminate over just how admirably my sister dealt with my epilepsy.  I have spent time battling guilt knowing that she had to have an air of maturity that most children don’t need to possess because the condition dictated that our lives at times were ruled by the seizures.  When I was regularly having tonic clonic seizures early in the morning there would be the predictable bed swap.  I’d go to my parents bed, my dad would sleep in mine as my mum would try and calm me down as I was too frightened to sleep alone.  I’d wake the entire house with my aura, which were pins and needles up my left arm followed by a piercing shriek.  My sister had every right to be frustrated or cross but she never was.

I started school and was fortunate enough not to be treated negatively because of my epilepsy despite certain things I had to do such as wear a hat in the summer as heat became a trigger.  I was different from other children but I never felt different, perhaps I just never noticed but that was certainly to my benefit.  However, at that age unbeknown to me, there was a guardian angel in human form looking out for me.  There she was in school keeping an eye out making sure I was okay.  She was ready to approach a teacher if necessary, to be with me if she saw any of the seizure warning signs or she noticed signs of the stigma attached to the condition manifesting itself through behaviors of other children.

Life was lived as normal as it possibly could be; however, there was no dispute that there were occasions when my mum’s time was and had to be dedicated to me and my epilepsy, whether it be hospital trips, alternative therapy sessions or general seizure care.

It can’t be easy trying to explain to a young child why their mother has to dedicate such time to the other, but somehow in our family it was a blessing that my sister was so understanding and patient with me and the condition.

With that in mind I wanted to focus on the idea that epilepsy and the family network, particularly siblings, need just as much support as those with epilepsy.  Not being a parent I don’t have a comparison, but imagining that having two children is very hard work, juggling a child with epilepsy plus trying to ensure the other feels loved and that they get the quality time they need must be exceedingly challenging.

It can be unintentionally easy for siblings to slip through the cracks with the focus being on a child with epilepsy.  I hope that instead of fueling the fire of frustration and stigma, parents and families are able to seek and find the appropriate support they need out there and subsequently siblings, like mine, can become the inadvertent guardian angels through the love they have.

Dedicated to Jael:

“No matter what, they always had each other. How did people get through life without sisters?”

– Michelle Madow, Diamonds Are Forever

Freya is the founder of Finding Freedom with Epilepsy. She loves writing, fundraising and advocating for epilepsy in order to change the negative attitudes that remain prevalent. She is using her own daily experiences to demonstrate how the thread of epilepsy weaves in and out of life and how she has found freedom despite suffering with the condition. She has a firm belief that the root of these attitudes are fear. Fear is felt when we are faced with the unknown; therefore, education is the key and then fear dissipates along with the stigma shortly after. Freya has worked with the Cameroon Epilepsy Foundation writing and editing for fundraising campaigns. She has written a variety of articles contributing to various websites and she has undertaken her own personal campaigns fundraising locally.  Check out Freya’s Blog here.

Beyond the Stigmas

Thursday, April 21st, 2016





Since seizures had a name and epilepsy was a known diagnosis, stigmas were attached. Society often turns the other way when they see someone having a seizure. They cringe in disgust at the sight of convulsing, losing control of bodily functions but never think this person is fighting for their life in the midst of it. The world we live in, people never just stop to think about the other person. They don’t try to find the root of the situation or care to ask the why or the cause. But then you have us, the very rare percentage that will standup and say there’s more to this story. What would happen if people would actually try to learn more about someone else. Learn more about a medical condition, a culture, a way a life? A positive change would be made, I’m sure of it.

What exactly is a stigma? Webster defines a stigma as a set of negative and often unfair beliefs that a society or group of people have about something. I think that describes it perfectly. The stigmas placed on those living with epilepsy have been horrible over a number of decades. People with epilepsy were accused of being possessed, women were forbidden to have children in fear of “passing it on” to their fetus, and society believed if you had epilepsy you would be unable to function like “normal” people. Yes, those with epilepsy would not be able to succeed in life due to their condition. These are only a few. One public seizure and that’s just it for you, you are the outcast, put into a box and stigmatized. This is why it took so long for me to share the fact I actually had epilepsy.

If you were not in my immediate family or a very close family friend, you probably never knew I had epilepsy. You probably only found out in 2013 when my seizures surfaced again after 17 years. There’s a fear in sharing with others “hey, I have epilepsy”. You see on television the jokes being made, you see the movies of people foaming at the mouth falling into grand mal seizures, others kicking them or just leaving them for dead. Even worse, you have those living with epilepsy who lose family, friends, loved ones because THEY cannot handle it or are embarrassed. It makes you think twice about sharing. There’s a fear in being labeled incompetent. In many underdeveloped countries, those with epilepsy are denied jobs because of their condition. You are forced to make a choice, either say I have epilepsy and get denied on the spot or hide it, wish and hope you do not have a seizure and risk losing the job.

When I decided to speak out about my epilepsy, I also decided I wanted to live beyond the stigmas. I wanted the world to know I am not possessed, epilepsy is NOT contagious and I am functioning just like any other able-bodied person. I don’t like the term “normal” because um everybody has something crazy going on with them. Can’t deny that. I wanted anyone who is living with any illness, especially an invisible illness, to know that its okay to share. I say invisible because not all seizures involve convulsions. I can stand right in front of you and have a seizure and you would never know it. If you feel you are too afraid to speak up, then I will speak for you. No one should live in fear or be reduced by what society think is “okay”.

It’s outrageous the world we live in that something like a neurological disorder has to be hidden. Speaking up for yourself can ultimately save your life. Me personally, I did not ask for my brain to go haywire at 3 weeks old. It’s just the way the cookie crumbled. Not one time did I allow it to stop me from being me. I did not allow it to stop me from achieving everything I have achieved in life. It motivated me to strive to join the community and help others reach their full potential WITH epilepsy. I will not stop until everyone(around the world) is living beyond the stigmas.


Whitney Petit is an Epilepsy Blogger, Speaker & Advocate who takes us on her life’s journey through her blog Changing Focus:Epilepsy Edition. Whitney was first diagnosed with epilepsy as an infant and lived in fear of telling others that she battled seizures and also struggled with her faith behind closed doors. Now as an adult, she feels there is no room or time for being silent, it is literally time to “change focus” and encourage others to stand up and let their voices be heard.  Join her as she shares her life’s struggles and overcoming those obstacles and bringing you hope for a better tomorrow. There is an amazing life that can be achieved WITH epilepsy!

Check out Whitney’s Blog here

1 in 26: Raising Awareness and Building Hope

Friday, February 5th, 2016




My son’s birthday.

Christmas Day.

My tenth anniversary.

The Fourth of July.

Last Wednesday.


These are some of the recent days in my life that have been interrupted by seizures.

Until recently, the story of my epilepsy was a story of disguise.

Different people can get epilepsy in different ways.  Soldiers can have epilepsy as a result of a traumatic brain injury sustained on the battlefield.  Some children may inherit epilepsy as a part of a genetic syndrome that causes seizures.  My epilepsy was caused by a prolonged seizure associated with fever when I had a virulent case of influenza at 16 months of age.

My first seizure, which lasted over 30 minutes, left a scar deep in my brain that served as a starting point for my future seizures.  The complex partial seizures, or seizures that only involve part of my brain, that I have had since adolescence frequently sneak up and dance around the edges of my consciousness, stealing slivers of my alertness just enough to leave me tired and spent after 15 – 30 seconds of involuntary swallowing and clenching of my left hand. Although the partial seizures are subtle enough that only those closest to me would know something was amiss, they leave me feeling as if I have been battered, bruised, and in a fog for the rest of the day.

For years, I focused on hiding my symptoms as much as possible.  In a world where there are still many misconceptions about seizures and epilepsy, I found others squirming uncomfortably when I confessed that I continued to have uncontrolled seizures. I noticed colleagues changing the subject quickly when I mentioned epilepsy.  Anytime I felt the characteristic aura of a looming seizure, I’d search for a safe place to sit and hide in case my simple seizure generalized into something more.

I know I am one of the lucky ones.  After my first prolonged seizure as an infant, epilepsy disappeared from my life for over a decade.  I had twelve years where the monster within my over excitable brain hibernated and I was able to grow, develop, and learn normally.  My brain formed new connections around the area that was damaged after the first seizure.  The hormonal surges of puberty woke the sleeping monster deep within my temporal lobe and suddenly paroxysms of pulsing heat, confusion, headache, and barely perceptible movements of my mouth and face were overwhelming me ten to twelve times a day.  Epilepsy was awake and it was present to stay.

Since my official diagnosis of temporal lobe epilepsy at age 18, I have tried multiple medications and medication combinations for treatment of my seizures.  I endured seizures and side effects through college, medical school, and through the beginning of my pediatric residency. Finally, in 2003, during the second year of my pediatric residency training, I had a temporal lobectomy to remove the area of my brain that was damaged years before. I was desperate for a cure for my seizures and prayed that one day I could continue my medical training and practice unencumbered with seizures and the mind-numbing effects of medications.

The surgery was successful without complications.  Five months later, my seizures were back. Despite the fact that others couldn’t see outward evidence of my epilepsy, it was (and is) my constant companion. Frequent auras reminded me that the threat of having a seizure was ever-present.  Medication-induced fatigue tugged at me like an anchor and threatened to pull me out to a somnolent sea filled with waves of persistent tiredness. At times, I felt as if I were a lone surfer in a tsunami of medication side effects, riding the sickening larger waves of dizziness, confusion, poor appetite, and headaches.  To moderate the side effects of the medication, I closely monitored my sleep, activities, and time that I take my anti-epileptic medications every day.

It wasn’t until I finally started acknowledging my struggle that I found some semblance of peace. Although I still have small seizures once to twice a month, writing about my journey has provided some solace and a modicum of acceptance of epilepsy. When my memoir, The Sacred Disease, was published in November 2015 I felt as if I was finally able to acknowledge my whole self to the world. Speaking with others who live with seizures has given me inspiration, motivation, and hope for the future of all of us.

When I was diagnosed with epilepsy, I resolved that seizures would never define me.  Medications will never rule me. Despite the pulling at my anxiousness and self-consciousness, I would never allow epilepsy to dictate my choices in life. Through talking with others who live with epilepsy, I have come to realize that our collective silence in effort to avoid judgment may contribute to the unwanted stigma. I can be a doctor, a wife, a mom, and a friend despite recurrent seizures. By sharing my story, I hope to decrease the misunderstandings associated with epilepsy.

The more we talk, the more we understand.

Please pass it on.






Kristin Seaborg is a pediatrician and mother of three who lives in Madison, Wisconsin. Kristin’s recent book, The Sacred Disease: My Life with Epilepsy can be found on Amazon (click here). Kristin can also be found at or via her blog

Does epilepsy matter now that I have two blue lines?

Monday, October 26th, 2015




Let’s start with the simple stuff. I’m Faye, 28 years old and live in London with my husband (we have just celebrated our first wedding anniversary)and our puppy Patch.

I work full time (shift work), love being active, running and socializing. I also have epilepsy – but does this matter?

Let’s rewind a little

I was diagnosed with epilepsy at the age of seven. I was prescribed sodium valproate and this controlled my seizures. At the age of 14 I was weaned off my meds. All was fine.

Then at 21 – my seizures started again. I started taking sodium valproate until my nurse changed my medication and I began to take lamotrigine. This was possibly my nurse’s wisest move. While SV was a good med for controlling my seizures, it’s not the safest epilepsy med to expose an unborn baby to. Does this matter when children aren’t on your mind? Well around half of pregnancies are thought to be unplanned so……

My epilepsy tends to consists of auras, absences and generally feeling fuzzy headed, with the occasional tonic-clonic seizure for good measure. I finally got some seizure control about 18 months ago, and all was smooth until October 25, 2014.

Two blue lines

So in October I suddenly started having auras. For me, auras are like having tinted vision – everything seems a little bit far away, and very spaced out. I was really concerned. I know that epilepsy does as it pleases – but it had been so well controlled for so long. Hell I’d even run two marathons.

So on the 25 October I went to the toilet with a magic stick.  A ha! I found out why – we were having a baby! That moment when you realize that the test is positive, is one that you can never fully describe. I thought that I was going to pass out. I didn’t quite believe it!

However I had to do one thing. One thing that I can say is my all-time favorite thing that I have ever done. I told my husband that he was going to be a dad, a moment that will stay with me forever.

So does this – my epilepsy – matter?

Ours wasn’t an unplanned pregnancy, but thanks to my very good epilepsy nurse, I had started taking 5mg of folic acid since December 2013.  My nurse has been amazing, but I was shocked at how little information and support there is available for mums-to-be with epilepsy.  I had millions of questions – but nowhere to turn for answers. I don’t know one other mum or mum-to-be with epilepsy.

I also found that my epilepsy did matter. No sooner had I done the test when the morning sickness started and my epilepsy got worse. My GP (who is amazing) has given me some anti-sickness tablets. This is to prevent sickness and help me to keep my meds down, pretty important in controlling epilepsy.

The lamotrigine I take has also been affected. During pregnancy the hormone estrogen increases and this increase can lead to the level of lamotrigine in one’s body to drop. In my case – this has lead to my seizures breaking through again.

So I sit here, 10 weeks and five days pregnant. Our parents, siblings, closest friends and my line manager all know my news. For me, telling my line manager was a practical move, due to my epilepsy and my sickness.  Our families and close friends know because we just couldn’t keep it in.  I found it hard not to tell anyone – but the longer I stay mum – the less I want to tell people. I like us being in our little bubble.

Of course people at work have become suspicious, but I think that I’ve managed to throw them off the scent.  But with Christmas fast approaching…… I’m not sure how long this will last.

But how am I really?

Giddy and excited but – if I’m honest I am finding it hard to adjust to life with my seizures again.

My meds have been increased after a phone call to my neurologist and I have my first obstetrics appointment with my neurology team in two days. It can’t come quick enough!

My amazing nurse has left to work at another hospital and I’m apprehensive about who will fill her place and when. I need help and guidance and it would be great to talk to a nurse I know and trust. Once again, I’ve been back to the internet and the forums, looking for information, support and just about anything that will help me.

And that’s why I’m doing this. If I can connect and help one other mum – I’ll be happy. Also someone might have an answer to my questions. I also think that writing my blog, sharing my pregnancy with other mums through this blog and Epilepsy Action will help me.

Congratulations to Faye and Chris on their beautiful baby boy.  To follow Faye’s journey please click here.

How HONY Has Given a Face to My ‘Hidden’ Condition: Epilepsy

Tuesday, September 29th, 2015





It’s 5:55 a.m. I’ve been awake an hour. I’m still jetlagged. And I will not complain. There is nothing to complain about. I’ve been reading Humans of New York, and while I feel such a swell of empathy for this woman in the picture, I am elated that finally, there is a face to the hidden condition and effects that epilepsy can have. For years, many of us have been petitioning Google to bring awareness to epilepsy for dedicating a day to epilepsy by changing its doodle to purple for seizure awareness — to no avail.







“I’ve probably had more than a thousand seizures in my life. I’ve fallen down everywhere. On the street, the sidewalk, the subway tracks, and down the stairs. I wanted to be a nurse, but I had to drop out of school because the epilepsy took my memory. Anything that I studied at night, I would forget by the next morning. I’ve got medicine now that keeps the seizures down to once a month, but that stuff messes you up too.” — Humans of New York


(Photo Credit: Humans of New York)






It’s one of the “hidden conditions” I suppose — sometimes, many times, you can’t tell someone you’re speaking with has epilepsy. Often, they, I mean, we don’t have any physical markers. Often, we can go about our daily lives, at play, in school, at work, with friends — until for that brief moment when things freeze. When things just go blank. Depending on what kind of epilepsy someone suffers from, the experience can go from blanking out in the middle of a conversation as if you have left the physical world for a moment in time only to come back again, to losing the ability to process words, fighting to string a sentence together, because your brain is firing signals wrong and you feel as if you are spouting gibberish. And you are.

It can also be something as random as a Christmas Eve, when you are at check out counter of a Toys R Us, you are paying the bill, and suddenly, you swoon, your head hits cement — you faint. You wake, confused, awash in a growing pool of warm liquid (you quickly realize it’s your own urine) and there are a dozen people around you — concerned shoppers jockeying to give you CPR, another is the store manager calling 911 and not wanting you to leave because you might sue him, then your family just worried. You close your eyes, feeling that you have failed again, you are not normal — others have seen it. You just want to go home — get clean — you tell the kind person from EMT this — he says you need to sign a waiver. It is Christmas Eve, the last place you want to be is in an ER in a foreign country. You sign the waiver shakily and slowly get up on your feet and accept ride quietly back to your hotel room and drift back into a dreamless sleep fatigued. The next day you tell everyone you are okay — you want to be okay. You look at yourself in the mirror and you look rested. You play with your niece and your head spins — you can not shake the sensation that the world is shaking. You say gravely, bring me to hospital. Two hours later, you are told you have a concussion. It was from the fall. It is Christmas. And because you are surrounded by family, you are grateful.

Or, you could be at play, when suddenly, your body freezes, you fall, your eyes roll back, your little body starts convulsing. You are unaware this is happening because you are somewhere else. This could go on for seconds, or minutes. Those around you will never forget the sight are terrified and panic. They will remember this vision of a 3-year-old shaking forever.

Epilepsy to many is a literally a condition without a face. You can’t tell who has it — only that when it happens to someone you love, it marks you as well, because you are hit with the realization of how seemingly random and almost uncontrollable it is. All of the above were seizure activities I personally experienced. Of all, I can say the two most difficult to manage are publicly falling and the loss of control of speech.

But it is important to note that for as many times as I have fallen — as the woman in Humans of New York has — I have gotten up. That is what I am happiest about. This is what I am celebrating this early morning. I count myself very blessed to have had the opportunity to have had great medical care — to have a doctor who cares about me like a mother — who is tireless in finding me the right cocktail of medicines that suit me the best. She knows that I want an active life. For years other doctors had given me a list of Do Nots: do not do sports, do not swim by yourself, do not travel alone, etc. My doctor met me and understood this was not going to be how I would live my life. She helped me find medicine to help me live a life that would enable me to complete my Must Dos: complete a half marathon, swim freely in the ocean, travel without constraint. Today when I have seizures, they are much milder. I’ve fallen down on my bed, lost consciousness, woken up, and then completed a 10K hike with a friend. I don’t take this for granted.

My doctor tells me it is a miracle I have no memory loss — because with each seizure, brain cells die. My heart bleeds when the woman from HONY says epilepsy took away her memory. I am not sure what makes me different. I know I am blessed. I know however how painful it is to lose even a second of time, when you can’t remember what happened and you have to rely on the memory of others to stitch things together. “What happened? What did my face look like? How did I fall? How long was I out?” I also know the pain of what it is like to lose control of my ability to speak — when I was in the middle of a conversation with my father — I couldn’t connect words together — I don’t think I have ever been more panicked, more scared in my life. Thankfully it didn’t last long — yet to know that it was a possibility was frightening.

Most of all, I am not impervious to the effect my epilepsy has had on the people around me. And this is where the real blessing is — I know I could have grown up surrounded by fear, doubt and constraint — just waiting for the “next one.” My family and friends — just allowed me to be me — that is to their credit. I have memories of swimming in the ocean at such a young age — that my love for the ocean is so heavily imprinted that my parents would never tell me to follow my doctors’s advice. They encouraged me to push my limits. I finished a half marathon because I had friends pacing me — experienced runners who gave up the idea of their personal best to allow me to get over a personal hurdle. And yes, I had a boss who fired me because he said that having epilepsy put his company at risk — this was a Fortune 500 firm. I also had several bosses who looked at me and said — big deal. Just let me know when you need to rest.

Most of all, I am grateful to the protection I have always enjoyed from Light. Yes I have had too many episodes to count — I’ve had them happen while driving but I’ve also been able to stop them by connecting to mind over matter. I remember asking for help to stop that episode on the highway and let me get out the highway so I wouldn’t endanger anyone. I got home safely – and drove to church. Then, kneeling in prayer, I had a seizure, of course, I had a family friend who saw me and took me home. My seizures are a result of stress — but in recent years, especially since becoming a student of Kabbalah and thus deepening my spiritual study — my seizures have become less frequent, less intense. On the rare occasion they have occurred, instead of laying in bed for days on end to recover, I’ve been able to gather myself and an hour later give a speech. I know this is not typical. But with epilepsy, what is typical?

And thank you to HONY, I am glad that there is a face to epilepsy — that now people know that it is no longer a hidden condition. But there are other ways to live through it. We all have our own stories to tell — each of them is worth hearing. I am grateful that mine turned out differently.I am appreciative of the many people who have shaped my story to have these wonderful twists and turns.

Thank you to Melissa Gil for sharing her story! Melissa is a marketing strategist, inveterate traveller, freelance writer and people observer who loves capturing moments on film. Born in the Philippines, she has lived, studied and worked in Singapore, Indonesia, Malaysia, Australia, and the US. She has scaled the Philippines’ 2nd highest mountain (3000m) and has completed 2 half marathons. Melissa has also lived with epilepsy since she was 3 years old and has worked with her doctor and family to bring her medication down from 14 pills a day to two. You can read more of Melissa’s incredible stories here.

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