A Conversation with the Universe

One of my biggest fears is having a seizure in public. I don’t like the attention it draws and I don’t like to be pitied. Unfortunately, what you focus on expands and on a lovely Sunday morning, my worst nightmare became a reality.

I saw my neurologist shortly after having that first big seizure. We increased my medication and I assumed the seizures would be under control. Having been free of seizures for a few weeks, I decided to go to the Run for a Cure to support a dear friend. I was with my mom, my sister Sonja, her closest friends and their families. We walked the five kilometres and I felt fine. When we were finished, we all gathered together to chat a little bit. Out of the blue, a large dog bumped into me from behind. I felt an electrical surge run up my spine and into my brain. I heard Sonja yell, “She’s having a seizure!” as I was falling to the ground. Luckily, one of our group members was standing behind me and caught me on my way down.

Just as I feared, a large group of people began surrounding me, watching me in my most vulnerable state. Sonja stayed by my legs and Claudia, a wonderful friend, held my hand throughout the episode. The rest of the group made a large circle around me, pushing people back to protect me and give me space. They were my earth angels that day.

I was grateful my mom chose to go to the bathroom right before the seizure, it was one less thing I had to worry about. I didn’t want her to see me in that state. I could hear everything but could not speak or control my body, including my face. I noticed a volunteer beside me had covered my face with her clip board. I can only imagine what my face was doing and to this day, Sonja will not tell me. It must have been quite a sight.

Someone called the ambulance and by the time the seizure started to slow down, fire trucks had arrived. I was mortified and wanted the ground to swallow me up. The fire man insisted I put the oxygen mask to my face. I reluctantly obliged him and sarcastically said, “ahhh, much better”. Looking back, I believe it was an attempt to lighten things up and make others feel better. By this time, the ambulance had arrived.

Marcus was at home with Tristan when he got the phone call. He was told I was having a seizure and to come as quickly as possible. Sonja reassured me Marcus was on his way, he would be there soon. I was laying at the bottom of a hill. As people started to leave, making their way up the hill, Marcus was coming down. People who didn’t even know him saw him coming. As they passed Marcus, they told him where I was. They pointed in my direction and said, “She’s over there.” I don’t know if it was his energy or the speed in which he was walking, but somehow they knew he was coming for me.

When Marcus came to my side, I had the strength physically and emotionally to sit up. We were eye to eye and so much was said between us without speaking a word. He helped me get on my feet and walked me into the ambulance. Before they closed the doors, I saw my mom standing there. We made eye contact and I gave her a thumbs up, reassuring her I was okay.

We were taken to the hospital where we were given the results from my last MRI. The doctor happily told us the tumour was, “stable, no change” and I was sent home.

That day, I experienced my worst nightmare and I survived it. As difficult and bad as it was, I discovered the fear I had in me was almost as bad as the actual seizure……almost.

As the old adage goes, “There’s nothing to fear but fear itself.” When having fearful thoughts, the body doesn’t recognize whether the scary event is actually happening or not. Fear is defined as the emotional response to danger, whether it’s perceived or real. Also, you can’t live in fear and faith simultaneously, so I always try my best to live in faith, even if it’s the size of a mustard seed.

I continued to have seizures almost on a daily basis but they changed, they became startle seizures. The sound of my dog barking, the phone ringing or something as simple as the toaster popping up would plunge me into a seizure. I felt like a ticking time bomb, never knowing when I was going to go off.

I watched very little television but when I did, I watched Ellen. She was funny, safe and made me feel good. One evening, after Tristan was asleep, Marcus and I laid down together on the couch. Marcus had fallen asleep as I watched Ellen. Unfortunately, it was close to Halloween and it was an episode where she made people go through a haunted house. I loved it but my brain was screaming, “Don’t watch it, don’t watch it, DO NOT WATCH IT!!!” I didn’t listen to myself and sure enough, something jumped out and scared me into a seizure. I woke Marcus up out of a dead sleep. He saw me and all the blood in his face had disappeared. He was pale as a ghost and his lips were tinted blue. I saw a look of fear and helplessness in his eyes. When the seizure subsided, Marcus looked like he was going to pass out. He thought he was having a heart attack and I didn’t doubt it.

I could always count on Marcus throughout every stage of my diagnosis. He is my rock, steadfast and strong, he always knows the right thing to say when I have any doubts. Until that night, I have rarely seen any vulnerabilities in him. For the first time, I saw his true feelings, fears he hid so deep down inside himself, I never knew they existed. It was then that I realized, even in his sleep, he couldn’t allow himself to fully let go and be in peace. It broke my heart to know the truth, to know I worried him so much, yet he always kept it to himself as not to burden me.

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I have since learned, when something worries Marcus, it goes to his bowels. When he pulled himself together, he ended up in the bathroom. I popped my head in to check on him, making sure he was okay. His elbows were propped on his knees and his head was resting in his hands. He was still very pale. Even though he’s witnessed many seizures, this one really shook him up, I believed he was in shock. At that moment I could have cried for him but instead I burst out laughing, the whole situation made me laugh. Marcus didn’t find it funny, he didn’t even crack a smile.

There are similarities between laughing and crying, each provides a powerful cathartic cleansing. Each is a mechanism for releasing stress and tension. The poet Kahlil Gibran once wrote, “The selfsame well from which your laughter rises was oftentimes filled with your tears.”

I had an MRI every three months and every time the results were the same, “Stable, no change.” On one hand it was good to know the tumour was not changing, but on the other hand, I was frustrated. I didn’t go out very often and my home became as quiet as a library. It was not the ideal place for a little boy to grow up in. Everyone was walking on eggshells around me in fear they might trigger an episode.

I was home alone one day, laying on the couch when a noise triggered a seizure. By this time I was having one, sometimes two a day. When the episode had passed I had had enough. I was so angry, fed up and tired of this life. I sat on the couch, literally threw my hands up in the air and with tears streaming down my face I asked the universe, “What? What am I missing? What have I not learned the first time around that you are making me go through this again? Please, tell me!”

Life is full of twists and turns. Little did I know, the universe had something new waiting for me just around the corner.

Namaste,

Linda ??