Seizure freedom is never promised…. As I wrap my brain around the fact that I have just had my first seizure in years, the emotions are overwhelming. First, the utter fear that has consumed me is almost too much to bear. The fear of if another seizure will come or what people will think of me if I tell anyone… I encourage women and girls to share freely about their epilepsy but I must admit I could not bring myself to speak the words “I had a seizure.” As I was coming out of my seizure, my husband said I was begging for him not to tell anyone. I can tell you honestly that I cannot remember uttering those words, yet I can understand why I said them. What will people think if I tell them I had a seizure after all these years? It feels as though the rug was pulled out from under me and I do not know what will happen next. My mind was racing and I could not stop crying… Were these tears of fear or tears of pain? My husband picked me up off the floor as he caressed my face telling me everything is okay. I kept wanting to move, run, and escape but my body wouldn’t move. I wanted to yell but the words would not come out and whatever words came out were complete nonsense. My brain was trying to compose itself and my body was reeling with pain as every muscle ached. I felt as though my body had just been through an intense workout. I could not stop crying and each new sight or sound it made the tears continue to fall. As my husband sat me in the comfortable chair my daughter looked at me, she instantly knew something was wrong. She kept asking if I was okay, but I could not speak and I looked at my husband pleading with my eyes for him not to say a word to her. He gently whispered, “Mommy has a headache, she will be okay. Why don’t you go play in the other room.” She cautiously left the room only to return quickly with her favorite blanket to cover me. She gently kissed my head and said, “Mommy I love you… I hope your head feels better soon”. She looked deep into my eyes knowing something was not right and would not look away as she was scared. I finally found the words to say, “It’s okay. Mommy’s okay.” I think she needed to just hear my voice… She quietly left the room and came back several times to peak in on me.
As I sat in my favorite linen Pottery Barn chair, my fingers were moving across the arms of the chair and with each movement of my fingers, my body would scream inside yet I could not stop running my fingers across the fabric. Did I need the familiar feeling of the chair to give me comfort or were my fingers mindlessly moving? The tears would not stop falling upon my cheeks. My mind was racing with so many thoughts that I could not sort through them. The pain in the upper top portion of my head was excruciating and I wished I could just open my skull to massage the exact location of where the pain was coming from. The feelings of failure began to set in. I was a failure as a wife, a mother, and director of My Epilepsy Story. Every emotion was raw and the endless thoughts kept running through my brain. I just wanted to take my brain out so I could have some rest, even for just a moment. My husband knelt beside me with the look of horror and concern in his eyes…. With tears in his eyes he began to express how scared he was as he watched my body convulse on the ground. He said he felt helpless and could only think of protecting my head from hitting the ground or my arms from hitting things. As he tried to explain how he felt, he kept telling me how he could not breathe if something happened to me…. The love in his tear-filled eyes made me feel sad and loved all at the same time. As I sat there listening to him express how he felt, my heart was breaking. This man loved me even in my weakest moment. He loved me and cared for me in my most unflattering moment… having a seizure is not beautiful or sexy. When you have a seizure, a tonic clonic seizure, your body flares about with your eyes rolling while you mouth makes horrible sounding noises. One young woman with epilepsy once told me that epilepsy is not sexy or beautiful, it is the most “Unsexy” disease. I remember telling her that epilepsy may not be sexy but that does not define how beautiful or sexy women with epilepsy are.
As I looked back, I thank God that my children were not in the room when I had the seizure. I cannot imagine the fear that they would feel from watching this horrible event. I began to feel a bit better and was able to begin talking more but the only words that I could keep repeating to my husband were, “Please don’t tell anyone. Please don’t tell.” Then I would cry more and repeat the same words again. Later that evening I texted my dear friend Mariellen with the words, “I had a seizure”. I must say I don’t remember a lot of what else I texted to her…. I am sure a lot of what I texted was complete nonsense.
As the day ended and I laid my head on my pillow I was utterly exhausted. As I lay there, I thought how could this happen? Why? What have I done to deserve this? And the tears began to fall as I fell asleep. The next morning was hard as I had to get up because I knew I couldn’t stay in bed. I didn’t want to be that person with epilepsy that had seizures. I began to think about what I should do about having a seizure. Should I call my doctor? I began rationalizing in my brain why I didn’t need to tell him. Then I would say to myself I need to tell him then convince myself that I shouldn’t tell him. The fear and shame were so overwhelming. I would think that these were irrational thoughts and tell myself I would call him yet the day ended and I did not call him…. The days turned into a week and the week into two weeks. You see, my doctor is also the board chair for the My Epilepsy Story (MES) organization so we were supposed to talk to each other about MES things and I “missed” setting up a time to talk with him. The reality is that I could not bring myself to tell him that I had a seizure. What was keeping me from telling him? The answer was fear and shame. I run an organization for Women and Girls Living with Epilepsy, yet I was still full of fear and shame just like everyone else that lives with epilepsy. I didn’t want my story to now be that I had a seizure. I wanted to be seizure free like I had been for so long. I began to think how many other people that are supposedly “Seizure Free” really are… Are we being honest with our doctors? Does fear and shame keep us silent? I finally texted my doctor to set a time to talk about MES things and then gently added that I needed to talk about my epilepsy as well when we chatted. I knew if I didn’t add it to my text message I would not tell him. When we talked on the phone he said, “Well you have taken some time off and that’s good… I quietly said, “Well, I had a seizure…”. And so the conversation began….. As I was a complete mess telling him what was going on, he quickly reminded me that I would be okay. He also said, “This is a wake-up call that your epilepsy has not gone away and you need rest, have less stress, and be diligent about taking your medication. This is a reminder that you can still have a seizure and you have a serious medical condition.” I must say, I think that in my mind I know I have epilepsy but sometimes I feel as though I really don’t have epilepsy. Living seizure free for so long was never a guarantee that I would never have a seizure again, that was just an illusion.
Some of you may want to know what caused my seizure… Honestly, I don’t know… Was it the stress of people? Was it the lack of sleep? Did I miss my medication? We don’t know for sure and think it was just a perfect storm of events in my life. So my doctor and I have decided I need to get more rest, increase my medication, and reduce the stress in my life. It has taken me some time to realize that stress really does affect your epilepsy. For me, reducing stress means ignoring “dysfunctional people” in this world, letting things go, while enjoying the people around me, and focusing on the good things ahead. Getting more rest is also important! Sleep and exercise are important in our lives as well as, healthy eating. I really didn’t want to share this part of my story but I wanted other women and girls to know that we have to share with our doctors. We cannot keep silent about having a seizure when we are in the “70% of people that are seizure free”. They cannot help us unless we help them, help us. I am fortunate that I have a wonderful doctor that is supportive and cares for all of his patients. I want to encourage you to be open and honest with your doctor during your next scheduled visit so they can help you live your life to the fullest! I also know that as we continue on this journey to help women and girls with epilepsy we have to remember that seizure freedom is not promised to anyone. At any point any of us could have a seizure. Tonight my husband and I were dancing around the kitchen to music as we do so often in our home. As he does every day, he told me how beautiful and sexy I am and then I finally decided I needed to share this part my story with you… Epilepsy may not be beautiful or sexy but remember that it does not define our beauty as a woman. So please join with us and share about My Epilepsy Story with everyone you know. Life is too short to let Women and Girls Living with Epilepsy continue to be impacted by this disease. We are never promised tomorrow….this is Our Time, Our Season, Our Year, TODAY IS OUR DAY!