34th Annual Chocolate Ball
February 1, 2020
As you might be aware, Kurt Eichenwald, the acclaimed American journalist, who was scheduled to be our keynote speaker, was unable to attend the Chocolate Ball due to experiencing a severe seizure. Mr. Eichenwald send us the note below to share with our guests. His words are a powerful reminder of the impact of epilepsy on families and the importance of the work that we all do to to support people affected by epilepsy.
It begins, as it always does, with an apology.
I had hoped to be here tonight, to celebrate the accomplishments of Epilepsy-Pralid, to highlight the importance both of their work and the efforts by all of you – physicians, family, friends and those with epilepsy – in fighting this disease.
But I can’t be with you to share those words in person. On Thursday, I experienced repeated clusters of seizures. No convulsions, thankfully, but seizures of enough frequency and severity to leave me exhausted, weak, and somewhat confused. My wife put me to bed and cancelled my trip to Rochester. She knew I would be incapable of traveling safely.
And so I apologize – an apology driven by guilt and anger and frustration and embarrassment. The same type of apology I have given many times in the past, whether I was absent from events with friends or family or work colleagues. An apology I know I will be giving again, because epilepsy makes my life unpredictable, my schedule no more than an aspiration, my plans no more than likelihoods.
That is epilepsy, and that is something everyone here should understand. For doctors and family and friends and coworkers, epilepsy is the seizure. For those of us with the disease, epilepsy is everything else. We may not be conscious during a convulsion, leaving us unaware of anything that had happened, but we awaken to pain and confusion and, often, fear on the faces of those gathered around us. A myoclonic seizure may have seemed to pass quickly, but the impact on us lasts far longer. During an absence seizure, we are gone, only aware of our departure when faced by the annoyance of people who feel ignored, the stares of the uncomprehending, and the realization that we no longer are aware of time as a continuous line of events. Time has disappeared, and we never know how large or small that loss is.
We deal with every physical, emotional or neurological impact on us from our seizures. But the seizures themselves? We’re often not there for those.
But epilepsy also doesn’t begin for us once we awaken from a seizure or the episode passes. There is a monster behind us, at all times. We can’t see the monster, we don’t know when he’ll attack, but we know he’s there. We know that, when the monster attacks, we won’t see it. You will, but we only know what it’s like to live with the monster at all times, and then wake up when he’s inflicted his damage and returned to hiding.
I tell you this not to seek pity – for God’s sake, pity or infantilization or protecting us from ourselves is the worst thing any of you can do. I tell you this to underscore, no matter how much you think you understand of what it is like to live with epilepsy, no matter how close you may feel you are with your children or siblings or parents or patients, you do not know what it is like. You cannot know, just as we cannot know what it is like to be the parent or sibling or child or doctor who love us and care for us.
So what is my point? Why tell you these experiences, these often-secret thoughts we have about living with the monster?
Because you need to know: You have to listen to us. If you can’t understand what it is like to live with epilepsy every day, every month, every year, you have to listen to us. We may tell you of emotions or fears, of loneliness or anger, of embarrassment or shame, but we should never be told, “don’t feel that way,” or “you have no reason to be embarrassed.” Letting us express our sometime irrational emotions is the first step toward getting us to open up, and in the process, decrease our sense of being in this fight all alone.
For the physicians: If you have read my book, you know that when the doctor is in absolute control, the consequences can be devastating. The smallest things you say can have incomprehensible impacts. My first doctor’s instruction to hide my epilepsy played a significant role in the deterioration of my health as I trained myself to keep quiet, to tolerate decline, to feel embarrassed by my terror. The mistakes by my second and third doctors escalated my distrust of the medical profession, and has had an impact on me to this day.
But my experiences with great neurologists can be summed up with one word: Partnership. They act in partnership with me, empowering me to be a participant in my own healthcare and, ultimately, the sole decider. Treatments for epilepsy can sometimes be worse than the seizures themselves. Anticonvulsants are brutal. So my great doctors never tell me what to do. They give their options, they advocate for their recommendations, but they let me decide. They allow me to make mistakes with ourselves, so long as I know all the potential consequences of my choices. They give me control of the treatment for a disease that, at it’s heart, is about a lack of control.
This power to ignore, however, does not and cannot apply to parents. You are in the most frustrating of positions – you don’t have epilepsy, you are not trained in neurology, and you desperately want to protect us. But by allowing yourselves to protect us too much, you hurt us. While you can select neurologists, you cannot select treatments. If you fear your child’s neurologist is making a mistake, get a second opinion. If your child is getting no better, see another doctor. But for God’s sake, don’t come up with your own treatments. In my travels, I met a pediatric neurologist who anguished about a patient, one whose mother insisted on minimizing his anticonvulsants and instead using homeopathic treatments. The doctor could not convince this well-meaning mother otherwise. Then one morning, she went to wake her little boy, and found him dead. The mother was destroyed, and the pediatric neurologist overwhelmed by a guilt that there might have been some words she failed to utter that would have persuaded the mother of the depths of her mistake. I will utter those words: Feel free to ignore the pediatric neurologist if you want your child to die.
When it comes to raising a child with epilepsy, as I said, I cannot imagine what that must be like. But I do know how you can fail. The greatest gift my mother ever gave me was allowing me to pursue the life I wanted, despite her wish sometimes to wrap me in cotton batting. Never let your fears erect walls that keep your children blocked from pursuing normal kid things. We have to find friends – and discover what kinds of people should not receive the gift of our friendship. We will be teased and ridiculed, sometimes left out. And it’s your job then to pick us up, wipe our tears, and send us back to find our way to a happy childhood. It’s rough, and it’s lonely, but so long as we know our parents are behind us, we can stick with the fight.
The most important partnership is between neurologists, parents, and teenagers with epilepsy. Imagine what it is like to be an epileptic teenager, just on the cusp of adulthood, eager to break free of the bonds of childhood, as your life becomes a series of “don’ts.” Don’t stay up too late. Don’t miss your medication. Don’t drink. Don’t drive. Don’t, don’t, don’t. With every don’t, the idea that anyone would tell that teenager “Don’t feel different than your friends” is pathetically laughable.
So, instead, partnership. With teenagers, the most important thing for parents and physicians is medication compliance. For the teenagers with epilepsy whom I’ve met, the most important thing is driving, even for those kids who are not yet old enough for a license. Recognize that, respect that…and use it. Tell the teenager, “We want you to be able to drive. We want to help you get there. But that means you have to work with us.”
Remind them that every seizure rewinds the clock, putting them back at the beginning of the amount of time they must be seizure-free to legally drive. If this teenager, like most, wants to drive, remind them. “We want you to drive, but that means you need to always take your medicine on time. We want you to drive, but that means you need to get adequate sleep. We want you to drive, but that means you have to avoid alcohol. One indulgence, one refusal to do what you know you need to do can set everything back. Help us get you to the point where you can drive.” And in the process, you will be helping them to live the best life.
Which is the final answer for those with epilepsy: Live the best life. I had seizures on Thursday, the monster attacked, and I live a wonderful life. I wouldn’t trade it for anything. I love my wife, I love my kids, I love my friends, I love my work. I love my life, not only despite the challenges, disappointments and risks I face from epilepsy, but on some levels because of them. So yes, I feel apologetic and guilty and angry and embarrassed because seizures kept me away from tonight. And my friends and family know never to tell me not to feel those ways. These bad feelings will pass, good ones will replace them, and that cycle of emotion will continue for the rest of my life, as it will for all of you.
We cannot be defined by our seizures, we cannot protect ourselves from everything. Life is risk, everyday – whether you have epilepsy or not, whether your child has epilepsy or not, whether you or anyone you love faces any challenge at all. The secret to beating epilepsy is not just controlling the seizures. You can beat epilepsy, even if the seizures are not fully controlled, by loving yourself, facing the reality of your own challenges, and living your best possible life. And never being afraid of letting yourself feel badly sometimes. You’ll feel good again, and it won’t take long.