This morning I had the honor and privilege of speaking to a group of high school students about my journey with epilepsy and what it has taught me about the concept of service, the vulnerability of asking for and receiving help, and the ways that this unique interaction between human beings expands our capacity for connection, compassion, and love.
What follows is the transcript from this morning's speech:
Good morning. My name is Abbey Nash. I’m a teacher of Writing and Literature at BAC. I’m a young adult novelist. But more relevant to our time together day, I’m also a person living with epilepsy.
You guys are going to spend the next few hours providing a charitable service to a specific group of people, little kids, a family in mid-life, and the elderly. But before you do that, I’ve been asked to speak with you today about my experience giving, asking for, and receiving help. In thinking about what I wanted to talk about today, the three words that kept coming up for me were fear, embarrassment, and shame. Now you guys are probably thinking, “We’re talking about painting flowerpots. It doesn’t have to be so heavy and dark.” And you’re right. There is joy in giving, and there is gratitude in receiving. That’s why we do things like participate in service projects, donate to worthy causes, etc. Because acts of service ultimately contribute to our well-being and the well-being of others. They expand our capacity for grace and compassion.
BUT—I am also here to tell you that when people are in need of real help, they will undoubtedly experience those three emotions I mentioned—fear, embarrassment, and shame—at some point during the tenuous process of reaching out, asking for, and receiving help. Sometimes these feelings are cyclical, sometimes they are experienced all at once, and sometimes they last, even after the “helpers” are long gone. And so today we’re going to talk about asking for and receiving help, and the things that get in the way.
In order to do that, I’m going to share my story with you. It might sound like this is about my journey with epilepsy; however, because most of you probably don’t have epilepsy, it’s important that you listen beyond the specifics of my story and understand that epilepsy has been the catalyst for my journey as a human being.
Last year, in May of 2018, I published my first novel. I had graduated with my MA in English in 2011, and this book was the result of seven years of aspiration, perseverance, and really hard work. It was a book I wrote for my younger brother, who is an active heroin addict. The book is about a popular high-school senior’s experience in rehab and his early recovery from heroin addiction. At its core, the book is a prayer for my brother’s recovery and for the recovery for the many young adults who struggle daily with the disease of addiction.
This book was both a culmination of my dreams and a gift I felt I was putting out into the world; in January of last year, I was working with a publicity firm planning a book launch, media interviews, and a small tour. But in February, I had a seizure.
This was not my first seizure. I was diagnosed with epilepsy approximately twelve years ago, right after my first daughter was born. But my seizures had always been several years apart and were always in my sleep. This means that while it was scary to wake up every few years with EMT leaning over my bed, it was, in general, a minor inconvenience in my life. I could still drive. I was never afraid of having a seizure in public, as each of my seizures had been in my own bed with my husband beside me. And in ten years, I had only had four seizures.
In February, however, I had a seizure while reading to my daughter. The subsequent extended EEG, (the test they do to check for abnormal electrical discharges in your brain, which can sometimes indicate epilepsy), revealed significant amounts of generalized discharges (meaning they originate from your entire brain, rather than an isolated spot). As a result, my neurologist determined that it was time to start medication.
Over the next several months, I had eight seizures. One particularly bad seizure happened on the couch beside my twelve-year-old. She called 911 and then watched the police officer who first arrived yank me off the couch and put an oxygen mask on my blue face. I didn’t wake up for almost two hours, and when I did, I was in the hospital with my husband’s teary face peering into mine.
The journey to find the right seizure medication isn’t as simple as taking an antacid, for example, or Tylenol for a headache. There are many different choices, each of which treat different types of seizures, and within each option, there are different amounts of medication which may or may not control your particular brand of epilepsy. You don’t know if the medication is working until you have another seizure. If that happens, your doctors either ramp up the dosage, switch meds, or add another medication to the one you’re already taking. In short, there is a lot of guesswork and no real solutions when it comes to treating epilepsy. Everything is a band aid. There is currently no cure.
In May, when it came time to appear for my book launch and hit the road for a small tour down south, I was on multiple medications that left me feeling like a zombie. I would sleep every day until late morning. I fumbled for words and would leave long pauses in my speech as I tried to figure out what I trying to say. I couldn’t write at all.
You can imagine that for someone like me, whose work revolves around language, this was a small death. Over the last year, I have tried three different medications and multiple combinations to find a cocktail with minimal side effects that can control my seizures. Very recently, after a third failed medication, my neurologist informed me that I likely have refractory epilepsy, meaning it is resistant to medication and may not ever be managed or controlled.
Here’s what this means: I can’t drive. This might seem like a minor inconvenience; however, I have two daughters who are ten and twelve. I can’t get them to their afternoon activities. I can’t take them for random Rita’s runs. I can’t pick up their friends for playdates. I also can’t do the grocery shopping or any other errands. So, on the weekends when my husband is home, our family spends most of that time in the car running all the errands I wasn’t able to run during the week. Groceries, the drug store, the post office. Birthday presents. As you can imagine, we had some very busy weekends around Christmastime.
Guess what that means doesn’t get done? Any and all projects around the house that my husband would ordinarily do. I have a laundry list of home maintenance and yard projects that we are slowly chipping away at, but the list seems to grow faster than the projects can be accomplished.
Perhaps more significant, is the fear I feel and the fear my children feel. My seizures now begin with an absence seizure, meaning I stare off into space for a few minutes and am completely unresponsive until the seizure generalizes into a tonic clonic seizure (what you may know as a “grand mal”). As a teacher, responsible for a classroom of students, I am constantly waiting for the moment when I will wake up on the floor with my students hovering over me. Even though I am the person who would be having the emergency, I feel responsible for my students’ sense of safety and comfort in my classroom, and I am embarrassed that by the vulnerability of needing their help.
My children are afraid to be in the house alone with me for fear that they will be in charge if I have another seizure. They can’t fall asleep at night unless my husband is upstairs and in bed with me. If I’m quiet for a minute too long, they’ll call from the other room, “Mom? Are you okay?”
As you can imagine, our family has had a tremendous need for help. You would think asking for help would be easy—after all, I’m not responsible for my seizures. There’s nothing I can do to control them. They are not, by any stretch of the imagination, my fault. And yet, as you will find when one day you are on the receiving end of a charitable service project, asking for help can be the most difficult thing you will ever have to do. This is particularly the case when you need help regarding something more unsavory than disease. People come out in hoards for their neighbors with cancer or epilepsy, but things get dicey when it comes to addiction, divorce, or financial difficulties. As the giver, regardless of your beliefs about personal responsibility, these are communities that need our increased awareness, understanding, and support. And as the recipient, instead of the instinctual survival technique of isolation, you must have the courage to ask for help.
We have asked, and people have come out in hoards. There have been an army of moms and dads who regularly drive my kids to and from their activities. Early on, there were people who brought meals and sent gift cards to show their love and support and concern. And recently, my family was one of the recipients of a Pay-It-Forward Service Day, in which a crew of volunteer workers cleaned up and mulched our yard, washed our windows, and did small repairs inside our home.
I’d like to give you an example of what it feels like to receive this kind of help, even when you’ve asked for it. On the day the Pay-It-Forward crew worked on our home, Scott and I came home to pruned bushes surrounded by fresh, dark mulch, gleaming windows, and several completed projects inside our home that had been neglected for months. My ten-year-old was the first to find the freshly baked cookies and flowers left on the kitchen counter. With her mouth full of cookie, she exclaimed, “I love our community!” The feeling of being taken care of wrapped around my kids that day, and I, too, had a similar fullness of heart.
But other feelings snuck in, too. Embarrassment that people I didn’t know had been inside my home. Did they notice the dusty baseboards or the unfolded laundry? Did they judge me for not being able to clean my own windows or prune my own bushes? If you can believe it, I felt resentful that there are people who have it so together that they have nothing better to do than prune other people’s bushes and wash other people’s windows. And I felt tremendous guilt for having any feeling other than pure, unadulterated gratitude. Mostly, however, I felt shame. Shame for needing help. Shame for not being able to return the favor. In the days that followed, shame was the primary voice inside my head, nagging me to hurry up and dust the baseboards and fold the laundry, before someone noticed I was struggling and offered to help me again.
This complicated melting pot of emotions comes from the need to define myself by what my life looks like on the outside. I don’t know about you, but I like to hide behind a life that’s going well. It’s easy to fall into the trap of believing that if you’re doing things right, you can avoid hardship. And it’s even easier to get tricked into believing that other people have it easier than you, people who, just like you, are also hiding behind what’s going well in their lives. I mean, think about it—when’s the last time your mom posted a picture on Facebook of the fight you got into with your siblings on vacation? Or the delicious meal you ate that ended up giving you food poisoning? The life we advertise to the world is the best possible version of the life we’re actually living, and it’s that version of life that we all compare ourselves to, the one that usually leaves us coming up short.
One thing my epilepsy has taught me, however, is that other people are my allies, not my enemies. As a precaution, I’ve started sharing the fact that I have epilepsy with my students at the beginning of the term. I provide them with safety instructions and allow them the opportunity to ask any questions. This is a very vulnerable experience for me—I worry that I’ll lose my students’ respect or that I’ll seem less capable as an instructor. I usually hide behind self-deprecating humor, informing my students that hopefully all my epilepsy will mean for them is a cancelled class or two. This spring, however, when I asked if my students had any questions, one of them raised her hand. She informed me that her little brother had epilepsy, and she wanted to know if it would be okay if, in the event of a seizure, she rolled me on my side and stayed with me until the ambulance arrived.
While I was focused on avoiding the embarrassment of admitting what I considered a weakness, she was thinking about the ways that she could help me through it. While it’s true that I am not my disability, it also turns out that I am not my abilities either. I am neither my failures or my successes. If one day I wake up on the floor of my classroom, staring up into the faces of my students, it won’t matter that I have a master’s degree or a published novel. I won’t be able to hide my vulnerability behind sarcasm or humor or a really clean house, and as much as that prospect scares me, I am learning that it is our challenging experiences and shared vulnerability that breaks down our walls, illuminates our similarities, connects us to the people around us, and, ultimately, reminds us that we are not alone.
One day, I might be the person helping someone up off the floor, and when I do, I won’t look at them with judgement or disdain or even pity, but rather with the same compassion, love, and humility of those who have helped me.
Today you have an opportunity to provide a service to people who will, no doubt, meet you with gratitude. And I can promise you that there will also come a day when people will show up on your doorstep with cookies, flowers, and hedge-clippers. And when that happens, you will feel both gratitude and shame. Because no matter how much we want life to be like a train that we hop on with a specific destination in mind, it is far more like a sailboat that will inevitably get knocked around by a few rough waves. But in being vulnerable and honest about our struggles and in showing up to those who need us with a humble heart, we are helping each other steer.