Living with Epilepsy: The day he thought I’d died
I had my first Gran Mal seizure when I was 13 years old. When my peers seemed preoccupied with designer jeans, body image, and teenage love, I felt forced onto a narrow and precarious ledge, standing between life and death. That first seizure happened on an airplane bound for New York. After my first one, I began to have seizures every few months for the next 15+ years.
Seizures thrust me into [what felt like] a cycle of powerlessness. After my first seizure, my new normal became more seizures, followed by doctors visits, multiple medications that the doctors thought would work, followed by being overdosed until I couldn’t walk straight, or under-dosed which led to more seizures and being put on new medications the doctors thought might work.
Life, which is uncertain enough for teenagers, became flooded with uncertainties. Life also became filled with blood tests, EEGs, and MRIs. I was constantly tested and monitored. Doctors said the tests were necessary to help determine the cause of my seizures, to see if the medication was at normal levels, to see if my kidney or liver were being negatively affected, to see what else they could learn about my brain. Yet, none of these early medications or tests stopped my seizures or soothed the deep shame I lived with at that critical time in my life.
Shame
I spent the next ten+ years loathing myself and my body, dreaming of being anyone but me.
I felt trapped in this body
I felt worthless in this body
So, I abused this body
I despised this body
So, how could I expect someone else to love this body
Have you ever felt displaced in your own body? At that time in my life, that was my lived experience. Have you ever felt driven or forced from your body? Millions of us around the world share this lived experience. The word “displaced” is most often associated with homelessness or forcible removal due to war or persecution, while the word “body” is most often associated with a sacred place or temple. For millions of people diagnosed with Neurological and Mental Health disorders, our bodies don’t always feel sacred. Our bodies can live in conflict, where words like “illness”, “disorder” or diagnosis,” become all consuming and we sometimes experience what can feel like multiple life sentences of despair and betrayal in our own temples.
Neurological and Mental Health Disorders
Bodies impacted by Neurological and Mental Health disorders (i.e., disorders that affect our nervous systems and brain functions) seize violently and publicly or become forgetful, even forgetting the faces and names of loved ones, they may lose essential muscle control and command of their bodies, some even lose the ability to talk, move, and navigate this life freely; they develop multiple personalities, departing from “reality” as the mainstream “normal” experience it or suffer extreme highs and lows, often leading to deep depression and thoughts/attempts of suicide. The small things millions of people take for granted everyday, like speaking coherently or raising a hand, may be a precious gift to someone who has just experienced a seizure or a stroke. The small things millions of people take for granted everyday, like feeling in control, a sense of equilibrium and peace, may be a precious gift to someone experiencing Depression or Schizophrenia.
Epilepsy, Alzheimer’s, Parkinson’s, Multiple Sclerosis, and Stroke are only a few of the neurological disorders that impact nearly 1 billion people worldwide (World Health Organization, 2016). While the spectrum of mental health disorders including Schizophrenia, Bipolar, Depression impact millions more. In the US alone 3.5 million people suffer from schizophrenia while 350 million are affected by Depression worldwide (Huffington Post, 2014).
When you live in these bodies, the body can become a prison [not a temple]. When you live in these “prisons,” you sometimes spend many lifetimes trying to escape and disassociate yourself from your body, rebelling against the sense of shame and powerlessness you feel.
This was my story for nearly two decades — a story I’m still working through if I’m being completely transparent.
Part of my Story: The First One
My first seizure happened on an airplane with hundreds of onlookers seeing me unravel. I remember boarding the plane that morning in 1985. My mother lived in New York and my father in Jamaica. It had become a summer ritual, taking that flight from one home to another. I remember feeling sleepy and groggy that morning, but I was your average sleep-deprived teenage girl. When I look at my daughter and her friends at sleepovers now, I was just like them, more interested in my last night with friends than sleep. I eased into my airplane seat, listening to the announcements, already missing my dad and friends, yet anxious to see my mom and get back to life in New York. These are the only recollections of I have of that day. Before it happened, I hadn’t felt anything out of the ordinary. Everything seemed normal. Then within minutes nothing felt normal. Hours later, when I regained consciousness, I woke up in a hospital bed in Florida. My plane had been diverted to Florida. I was rushed from the plane to the hospital and have no recollection of any of it.
No Memory
I have no memory of that seizure or any other I’ve had. Instead, family and friends have recounted them for me over the years. I’ve heard these words and phrases repeatedly: “You just fell, and screamed,” “You began shaking uncontrollably,” “I put a spoon in your mouth to stop you from biting your tongue,” “You bit your tongue and began bleeding,” “I turned you on your side, so you wouldn’t choke,” “You hit your head,” “It lasted less than a minute, but seemed like forever;” “You had multiple seizures, so I had to call 911,” “I called 911,” “I was terrified,” “I thought you died;” “You stopped shaking then fell asleep.”
Denial
My seizures continued in very public and embarrassing places. As the seizures progressed, I continued to dive deeper and deeper into worthlessness and denial. Back then, denial felt like my only safe place. If I pretended to be in control of my body and my brain maybe I could make it so — maybe I could finally be in control. I was so deep in denial, I shot down my parents’ attempts to insist I take better care of myself, that I get more sleep (my seizures were associated with sleep deprivation), that I take my medication regularly. Doing that meant I would have been at the mercy of medication and side effects, and that meant I actually had Epilepsy — which meant Epilepsy was real. Denial gave me a place to pretend none of this was happening — a place where I wouldn’t have to face my diagnosis. Denial gave me a hiding place where no one could find me or see me much less understand me.
Denial is an important consideration for families or loved ones caring for someone with Neurological or Mental Health diagnoses because so many of us find comfort in our denial. My uncle was diagnosed with Manic Depression when he was in college. Whenever he felt better or more normal, he would stop taking his medication and in no time he’d have a manic episode. When you want so badly to be normal — like he did, like I did — denial gives us a safe place to be in control, if only for a moment. In my mind, if I lived my life like a normal person or only took my medication when I felt it necessary, maybe my seizures would finally leave. That never worked for me, like skipping his meds never worked for my uncle.
First Steps to Change
My years and years of seizures are like a fog now. The details escape me but I can still recall the feelings of shame and worthlessness. I’ve had seizures everywhere imaginable, in cars (as a passenger, because I wasn’t allowed to get a license for years), in my dorm room (I apparently hit my face on the bed frame and hurt myself pretty badly), in the shower, sitting, standing, sleeping, and I could go on. In my early twenties, I grew more and more resentful of being babied, of people asking me if I was OK or asking how I was feeling. I was embarrassed but didn’t have the words or emotional wherewithal to say so. I walked through that period of my life caring about very little and caring about myself even less.
I found out I was pregnant at 25. This was my first real wake up call or reason to wake up. When I was pregnant with my son, I’d stopped taking my medication completely, in an attempt to protect him from the harmful side effects. I meant well. However, I had multiple seizures the day before he was born and I landed in the emergency room once again being given another new medication intravenously. The shift began for me that day. My children were my only sense of purpose at that time in my life.
I was 26 years old when I saw my son for the first time. Looking into his eyes, I knew I needed to take better care of myself so that I could take care of him. My transformation began in that moment, however, real and lasting change often takes time.
Darkest before the Dawn
Nearly 15 years after my first seizure, and about a year and a half after the birth of my son, I had a seizure that shook me to my core. This time, I was about 28. We’d been visiting family in Florida. Standing in the ice cream store with my cousins and son that day, I could feel the aura sweeping over me. In the years since my first seizure, I’d began to notice an “aura” before my seizures started. Auras felt like warning lights at an intersection minutes before impact. They were the sensations I felt in the minutes and seconds before my seizures hit.
As the aura arrived that day, I could feel myself trying to fight it by staying conscious, by trying to sound coherent and keep it together, even as I could feel the seizure taking hold. I frequently tried to defy my seizures in an attempt to win my battle against Epilepsy. I lost my fight in the ice cream store that day.
Marc and Garth could see the seizure coming. I was beginning to lose focus and presence. My eyes were fluttering. My words had gaps where sentences had been flowing freely minutes before. They could see it coming, even as I struggled to keep it at bay. I could hear them asking, “Are you OK?” “Are you going to have a seizure?” I could hear myself responding, “I’m OK, I’m not going to have a seizure.” It was my standard response infused with wishful thinking just before a seizure.
One minute, they’d been talking to me, the next thing they knew, I was unconscious and minutes away from another ambulance ride to the emergency room. The EMT’s sometimes thought I was overdosing — a deeper look at my medical history, told the truth — diagnosed with Petit Mal as a baby, then Gran Mal at 13, I’d been having seizures for more than half my life.
Marc thought I’d died that day. He told me I was lying there, after the seizure had passed, with my eyes open but unresponsive. He was talking to me. My eyes were open, but nothing. He said it was like I wasn’t in my body anymore. He recently reminded me that Garth had to take my son aside while it was all happening and afterward, to be sure my two-year-old son wasn’t seeing me in such grave danger. While I had no memory of the seizure, Marc’s description of the aftermath forced me to confront the reality of death and the possibility of leaving my young son behind.
I remember asking my Neurologist to explain how I could be lying on the ground in the store, with my eyes open, but not hearing or seeing the people around me? “How could that be?” I demanded to know. “You were unconscious,” my Neurologist answered. I pressed for more information, for something that made sense, that could offer more insight, but that is all he offered over and over again as if repeating it would make it sound more plausible. “You were unconscious, you were unconscious.” My doctor meant well but he had hundreds of patients like me. He was far removed from my reality. I was living this experience. Having stood so closely to death’s precipice that day, I knew that I needed to change.
Confronting Powerlessness
Thinking back to that time in my life and my relationship with seizures, I was far more than “unconscious,” I was lost. For nearly two decades of my life, I had drowned in self-pity. I now had another life to consider and I wanted to be more for him, to show him more than self-loathing and shame. For nearly twenty years, I’d felt trapped in my body, I felt anger and worthlessness, and I questioned God. I’d demanded to know why God hadn’t made me “normal?” Yet, confronting my powerlessness in that moment, I knew none of that mattered anymore. I knew there was more for me to do and be. I was somebody. I was somebody’s mother now. I had to change. That seizure. That moment. Knowing my son’s life hung in the balance, worked together on my behalf to usher in lasting change.
The Shift
I had to relinquish shame, face myself, and rewrite my story — both the story I was telling myself and the story I was living — to arrive at lasting change. Shame is heavy. It is an unbearable weight that doesn’t allow for honest exchanges with yourself and others about whatever it is you are facing. I had deep shame about my Epilepsy and I am now incredibly thankful I was able to let it go. I also had to stop blaming myself. Epilepsy wasn’t my fault like mental illness was not my uncle’s fault. Shame and blame go hand in hand. Letting both go, have had truly transformative effects.
I also had to face my seizures and shift my relationship with them. Facing them was huge. The moment I looked at myself without shame and blame and said, ‘if I am sleep deprived, I increase my chances of having a seizure’ and ‘if I don’t take my medicine, I increase my chances of having a seizure,’ I began to make choices that came from an empowered place rather than that previous and familiar place as a perpetual victim. Seizures were still hard. I still had moments of “why me, why me,” but those moments were now fewer and farther between because I’d decided to see my seizures through new eyes. I was now able to say to myself and others “I have seizures,” without also conveying “I am my seizures.” That is where re-writing my story became critical.
For nearly 20 years of my life, I’d carried the story of my seizures like a scarlet letter. I’d spoken about it and myself as if I were innately wrong, as if life had forsaken me. Leaving shame, blame, and denial behind, I began to affirm what I wanted for myself. I began to tell myself a new story, saying instead:
I see freedom in this body
I feel worth in this body
So, I love this body
I embrace this body
So, I know someone else will love this body
The beauty of affirmations is our ability to try them on “for drill” (i.e., for practice), saying them to ourselves until we actually believe and embody them. Some days I’m still practicing this one.
Re-examining Self-talk and Practice
In re-examining my self-talk, I also began affirming the possibility of living a seizure-free life. Saying it was the first step. Believing what I was saying, was another step in the right direction. Being different by doing things differently, brought everything into alignment.
I began taking my medication consistently. I also started to learn more about medications I was taking. A few years ago, around 2009, my Neurologist decided I should stop taking the medication I was on — the one that had been working for me — because it had become known to lead to bone density loss. He recommended I take another, “less harmful,” medication instead. I read as much as I could about both medications, coupled that with the results of my bone density test, and made the decision to change the medication. Information is powerful and deciding to actively participate in the decision-making around my medication and “disorder”, has been a powerful journey for me.
I also began taking better care of myself consistently [and holistically], getting more sleep, watching my stress levels and learned to stop when I was becoming overwhelmed. Most importantly, I gave up my need to be normal! A few years ago, I learned there is no such thing. We all have challenges and obstacles in life, plus life is so much more fun and interesting because of individuality. Making peace with my individuality was a huge step forward. I also began to ask for help. When my daughter was born in 2001, I knew sleepless nights would be part of parenting, so I asked my friend Patrice to stay with us for the first six months, to help me get through that sleep deprived time. With Patrice’s help, I remained largely seizure-free. Thank you, Pat!
This has been my path to a more whole and complete life. We will all have different ways to manage the disorders and challenges that impact our lives, but if there is one common thread to lasting change, it begins with stepping out of denial and shame, facing ourselves with compassion, re-writing our old narratives, and practicing, and practicing, and practicing (emphasis on practicing) a new way of being.
Today I’m seizure-free and grateful to say I’ve been that way for at least 14 years. Thinking back to my first seizure — which felt like a life sentence at the time — my 13-year old self wouldn’t have believed this possible. I now know it is. I’ve also learned that these are not easy roads to travel and no two people will have the same outcome.
An estimated 65 million people across the globe currently live with Epilepsy. Another 1 billion people contend with neurological conditions. These disorders “ranging from epilepsy to Alzheimer’s disease, from Stroke to headaches, affect up to one billion people worldwide (The Word Health Organization, 2007). Another 1 in 4 people around the globe live with mental health disorders. With millions of lives touched by these disorders, you are part of a vast community.
This community is global and eclectic with millions of individuals who understand the grief and trauma we feel. Millions of them also move beyond this grief and trauma to live full and empowered lives. For example, larger than life icon, Prince, lived with Epilepsy as a young person. Prince endured bullying and ridicule in his early life and then channeled these traumatic experiences into his hallmark individuality and musical genius. In a 2009 interview with Tavis Smiley, Prince talked about his seizures, citing them as part of the reason he became “as flashy as I could and as noisy as I could.”
This recent viral video with a father, son, duo singing “Cuando, Cuando, Cuando,” is another example of living empowered moments during the hardest times. The father is 79 and has been diagnosed with Alzheimer’s. Even with Alzheimer’s trademark of memory loss, you see father and son living in and celebrating their present moment. In spite of his intractable and irreversible diagnosis, the father remembers every word of this song. Father and son are captured singing together, experiencing something miraculous.
Watch the video, here.
Closing Thoughts
You are more than your diagnosis or disorder. Changing your relationship with your diagnoses or disorders requires a personal shift that can be challenging yet transformative. What seems like perpetual darkness and hardship can become life lessons filled with rays of hope and empowerment. If you’re a caregiver of someone with a Neurological or Mental Health disorder, work on finding time for self-care and remember to enjoy the down times or miraculous moments you share with your loved one. — like the father and son featured above.
