If you've made it to this page you are either a friend and/or family member coming with the intent of donating towards epilepsy (for which I am extremely grateful!) or a welcome guest browsing team pages and riding the emotional rollercoaster of the community's struggles with epilepsy. I have done some browsing myself and have scanned the multitude of heart-wrenching stories about lost loved ones, shattered lives, palpable uncertainty and immense daily struggles. As with all epilepsy stories, unfortunately mine shares some of those characteristics. However, for those of you looking for hope, this chapter of my story has a happy ending. I don't know how to tell this story in short-form (though I wish I was that talented!), so if you have the patience please take some time and read the below. My hope is that this story can act as a candle for those of us in the dark caves of despair struggling to feel their way to the surface and let those people know that there are others that have been in that position and persevered. If you are not an immediate member of the epilepsy community, then the intention is to educate you on the challenges of the disorder and perhaps persuade you to open your pockets a little wider for this drastically underfunded disorder.
My story begins when I was 8 years old (in 1999). I remember running into my parents' room with a wave of confusion as I asked my mother with awe what was happening to my eyes. There was a tingling sensation and I could no longer control them, as if a puppeteer was moving them with his strings to the left while violently shaking his wrists back and forth. The following months were full of diagnostic procedures as they tried to figure out what was wrong with me, bouncing around the possibility of a brain tumor or something more malicious. I don't remember much, but I can only imagine the anguish my parents went through as we all went on this journey of discovery. By the time it was done, it was a relief to find out I had epilepsy compared to the proposed alternatives.
I was diagnosed with simple partial focal seizures and began seeing an incredible pediatric neurologist at Johns Hopkins. Over the next few years I was able to land on a medicine that controlled my seizures and thanks to the loving oversight of my mother (who ran a tight schedule around when I took my medicine, how late I stayed up, etc.) my epilepsy remained controlled up until highschool. I'll fast-forward through highschool, college, and early adulthood as they were fairly uneventful when it comes to my epilepsy, but one thing worth noting is that starting in highschool my epilepsy became intractable and I had 1-3 focal seizures per day (and typically at the most inopportune times such as test taking during college). I never lost awareness/consciousness during my seizures, and as a result I was able to feign normalcy during this period. For those of you who don't have epilepsy, it is challenging to explain what a seizure feels like and this experience varies by different types of epilepsy. I've provided an attempt to describe my seizures during this period below.
Imagine your conscious mind operates in a dark room, and when you want to think about something your mind uses a spotlight to target that "something". The scope of the spotlight makes it easy to focus on the "something" you choose, given it is the only thing illuminated in that dark room. My simple partial focal seizures were analogous to suddenly turning floodlights on in your dark room. There would be an initial period of confusion/blinding as my mind adjusted to the inundation of light, and without the spotlight of focus I would have trouble pointing my conscious mind towards any one "something" and thus could not formulate precise thoughts until after the floodlights (seizure) had dissipated. These seizures typically lasted anywhere from 5 to 15 seconds, so quite brief.
My ability to feign normalcy was incapacitated starting June 12th, 2015, when I had my first tonic-clonic seizure. I had stayed up late the night before travelling back from Chicago on a work trip (I was in Philadelphia at the time), and with only a few hours of sleep the most likely culprit was lack of sleep and stress (two trigger words with epilepsy). Tonic clonic seizures are like an EMP bomb going off in the brain. As I regained consciousness, my mind was in disarray as it began to reboot. These reboots (or at least mine given my seizures originated in the frontal lobe) reflect our intellectual evolution and follow-suite. The primal functionalities come online first. “You are in trouble!” they scream as you start to make sense of the situation and feel the physical sensations accompanied with the seizure. Black eye, rug burn on the toes, extreme headache, and an immense sense of fear and confusion. Expletives start spilling from the lips as I realize my world has been turned upside down and I can no longer make sense of it all. Why can’t I remember how I got here or what happened? Ok I need to get help, but how do I get that? Who are these people in my phone and how do I operate this darn thing? In these situations, you are purely guided by your subconscious mind – the lower levels of the brain that you have been archiving processes for years – as your conscious mind begins to turn back on. You know you should do things, but you can’t yet understand why you should do those things. You know you recognize names and places, but can’t quite put a finger on their relevance in your life. In summary, it is 20-30 minutes of primal functionality until your “higher level” intellect can turn on and start putting the puzzle together.
Doctors were hopeful that this might have been a random flare up and that my seizures would return to their previous severity – unfortunately that was not the case. Over the course of the next 2 years, I would have 7 more tonic clonic seizures and the severity of my simple partial seizures increased to complex partial and increased in frequency to up to 20 seizures a day. I was fortunate in that most of my seizures were in the safety of home and I was not severely injured by any of these events. However, I was spiraling out of control, and there seemed to be no end. I tried 7+ different medicines during this period, which all brought varying side effect profiles and very little in the way of seizure control. My anxiety about having seizures began to significantly increase and I was unable to focus at work with the imminent threat of having another seizure. And I was deeply depressed about my worsening condition as there seemed to be no light at the end of the tunnel and my hope was dissipating about living a fruitful life. I should note here that I COULD NOT have continued living a productive life without the incredible support of my future wife Lizzy as well as my loving family. These people are the real heroes in all epilepsy stories, as they do the impossible task of lifting spirits in times of utter chaos and always having a smile on their face – even though internally they are panicking themselves. The late nights they stayed up with me crying and the hugs, smiles, and warmth they bestowed upon me are the reason I am where I am today. To all of you supporting those with epilepsy – know that you are earth’s angels.
During this time I was working with the remarkable neurologists @ Jefferson University, and by summer of 2017 I was running out of options. My probability of SUDEP was increasing every month as my seizures got worse, and given my track record I had about a 10% chance of a new medicine working. I wasn’t exactly excited to go through the side effect trenches when there was a 90% chance it wouldn’t be any better or could be worse than my current medicines. This is when the doctors recommended brain surgery. I thought I had never been a candidate and prior EEGs couldn’t determine that my seizures were localized, but the doctors thought that given the symptoms of my focal seizures they had a fair degree of confidence that they were localized in the left frontal lobe.
So we started etching out a game plan. I would do a stereo EEG (an invasive EEG where they put the electrodes directly on the brain vs. on the exterior of the skull) in August and if that gave a good indication of where my epilepsy was originating, then I would have a left frontal lobe topectomy. Wow… I was going to have brain surgery. I never really thought of this as an option, and the more I thought about it the more I became utterly terrified. Someone was literally going to cut into my brain and remove a part of “me”… would I be the same afterwards and what part of me would I lose? These questions would be explored in deeper detail as the process evolved, but first thing’s first I needed to find out if I was a candidate.
The Stereo EEG was my first foray into brain surgeries. Other than some of the less appealing features (such as being awake when they hand-screwed a “halo” into my skull), it wasn’t terrible. The surgery was done mostly with precision robotics, and I woke up with 16 electrode wires sticking out of my skull. I sat in the hospital for 3 days as they mapped the seizure activity in my brain, and luckily the high frequency of my seizures made this a fairly quick process. Turns out that my left frontal lobe was seizing at all times (though most of the day this was asymptomatic), and so they were fairly confident by the end that removing this part of my brain would significantly improve my epilepsy, if not completely cure me of epilepsy. Another wow moment… 6 months ago I was in hopeless despair with no light at the end of the tunnel, and now someone was offering me a new lease on life! There was only one complication à the surgery was in my left frontal lobe – where all the executive functioning (decision making, planning, etc.) happens.
I had come to probably the most pivotal crossroad of my life. On the one hand, I had a pathway towards seizure freedom – something I had never dreamed of. On the other, that pathway could result in substantial deterioration of my cognitive abilities. I’ve been blessed with a fairly inquisitive and active mind, so the thought of damaging it in any way was a significant impediment to me jumping on this pathway immediately. The next month was a period of deep brooding as I thought about my options. I tried to be as objective as possible during this decision making process. The doctors said the surgery would provide me with a 40-50% chance of seizure freedom, a 20-30% chance of significant seizure reduction, and a 20-30% chance of no difference and moderate cognitive impairment. What did these numbers even mean? Predictive probabilities are great when you are making a multitude of small choices over a long period of time, but how do you weigh them with one large decision that has largely binary results? Either my life will be better after this surgery (70-80% chance according to their estimates), or it will be worse (20-30% chance). If I ended up in the latter bucket, even though I had objectively made the right choice it would have forever been the wrong choice. However, when I weighed this against the alternative, which was side-effect riddled medicine unlikely to control my seizures and SUDEP becoming an ever increasing concern, it was a clear favorite. Like all big decisions in life, this one came with uncertainty. I decided to take the leap for a better life.
It is important to note that the neurosurgery unit at Jefferson Hospital was THE PRIMARY reason I took the surgery path. This team is absolutely unbelievable with what they accomplish and the lives they change on a daily basis. Their personability and reassurance throughout the process instilled me with the confidence I needed to proceed on this path.
What can I say other than the days leading up to the surgery I was petrified. There is a lot I could write about this period, but I’ve already absorbed a lot of your time so I’ll save you the details and make this more of a highlight reel. The surgery was seemingly “successful” by their measures, though I felt as if an extreme hangover met a horrible concussion and bore me as their child for the next week. My whole family came up for the surgery and supported me for the next few weeks as I tried to understand what the long-term outcome would be (a recurrent theme of loving support playing a critical role!). As it turns out, they took a sushi-sized chunk out of my left frontal lobe and when they ran the pathological tests they found frontal cortical dysplasia (FCD). This was a really positive sign, as FCD indicates that this is a congenital issue I’ve had since birth and was the likely culprit of my seizures.
I am now 1.5 years out since the surgery and have not had any seizures since the surgery. It is still somewhat surreal to me à having gone from a dozen seizures a day to 0 in over a year. Life changing events of this magnitude are something the mind struggles to wrap itself around. I’ve meditated on the matter, and while it’s easy to measure specific positive outcomes, the sum of the parts becomes difficult to fully quantify.
The path to where I am today wasn’t plated in gold. I had extreme anxiety and panic attacks for the 6-8 months following surgery and am now on an antidepressant (SSRI). The working theory is that my daily seizures acted as guardrails for my brain. As stress levels would increase, a seizure would be triggered which would reduce mental activity (in essence, acting as a natural antidepressant). Without seizures, my brain no longer had these guardrails and I was essentially experiencing stress for the first time à something that seemed foreign to my brain and in many cases was mistaken for a seizure. This in turn heightened my anxiety and made it worse. My brain became a tight ball of anxiety as this negatively reinforcing mental cycle spun, and it took time, therapy, and the SSRI to get me through this stage.
Post-surgery has also been a time of self-discovery. I thought that if I had a successful surgery, I would be “delighted”. That was not the case and I was depressed for 2-3 months after the surgery, which inherently made me feel guilty for not enjoying my “new” life. I reflected on why I was feeling this way, and the answer eventually came in part from reading Viktor Frankl’s book “Man’s Search for Meaning” (I highly recommend this book for everyone, but most importantly those who just had a successful brain surgery). Viktor details his experience in concentration camps during the holocaust, reflecting on what drove people to have hope and survive this horrific situation (he was a psychologist by background). His conclusion is that people find meaning in suffering, and it becomes so ingrained in the person’s identity that it starts to give them motivation to persevere through the suffering. While having epilepsy does not compare to the tragedies that unfolded in concentration camps, over the course of 18 years it had become ingrained in my life’s meaning. I battled epilepsy every day, and in many cases I was great at it. In a twisted way, fighting epilepsy had become comfortable.
Now that battle was over, I had won, and I had no idea what to do. I had lost my daily routine, and with it my meaning in life. I was no longer that guy who struggled with epilepsy and impressed everyone with my resilience. I had finally reached my goal of being “normal”, but now what? It was terrifying. I imagine this is what it feels like to have your children grow up and no longer be dependent on you after spending 20 years with them at the core of your life – I felt like a part of me had died.
Thanks again to my loved ones, I’ve gotten through that phase and my mind has settled into a new routine. I’ve since moved up to New York, started a new job, and am getting married this year. Life, in all aspects, is pretty darn great.
So what is the moral of this story? Well the main one is that epilepsy sucks. Like really really sucks. But with the right attitude and a loving support group, perseverance is possible. Many forms of epilepsy do not have a cure like mine, so understandably having hope can be very challenging. Find meaning in that suffering and most importantly appreciate the glimpses of joy that present themselves during the dark times. Some of my fondest moments have been in the hospital as I looked into my family’s eyes and saw the depth of love they had for me – it was in those moments that I found strength and the determination to put on a smile to try and return the favor.
If you are in a dark time, please reach out to me @ firstname.lastname@example.org and I’d love to chat with you. For those of you donating, hopefully this story helped give you more insight into the degree of pain and suffering that epilepsy causes, and with the right research and funding we can make these happy stories more frequent.