Tag: epilepsy

Like a Roller Coaster

I mentioned before that my youngest son is epileptic. The first major seizure that he suffered was hell. It was hell for him; it was hell for our family. The day that he had his first major seizure is easily in the top five worst days of my life. I don’t want to spend too much time dwelling on the worst days of my life, so I am not going to really try to rank them, but that day was hideous. Luckily (depending on how you look at it), he’s only had three major seizures after that one. And as awful as the subsequent seizures were, they weren’t as bad as the first one. Why is this? The subsequent seizures weren’t as bad as the first one, because we mostly knew what to expect. We had been through the experience, and we knew that we would get to the other side. We knew that we could handle the pain and the uncertainty and the fear and the worry. We knew that processing all of the feelings that result from his seizures is tough and necessary, but we also knew that we were up to the challenge, because we have already proven that to ourselves. People think that negative, grueling experiences toughen you up, but I don’t really believe that. I think that negative, grueling experiences prove to you, just how tough you really are and have always been, but you just didn’t know it. You forgot. Tough experiences reveal to you, your true inner core of strength. And the beauty of going through some extremely hard stuff (which almost all of us have gone through, by this middle stage in our lives), is that you have that knowledge about yourself. You know that you can handle almost anything that life brings to bear. Your inner steeliness becomes your recognizable outer armor.

I read a quote the other day that said this, “Even cowards can endure hardship; only the brave can endure suspense.” There is a lot of truth to this statement. I always say, “I know in my heart that I can handle anything, but I hate being in limbo. I hate wondering. I hate the times of indecision and waiting. That’s when my self-torture starts.”

We have a lot of limbo going on in the world right now. The uncertainty is so wide and has been happening for so long, that it feels like being stuck on an incredibly tall roller coaster going up, up, up, climbing the metal tracks, ever so slowly . . . clack . . . clack . . . clack, gazing down below, if you dare, to all that you could be crashing down into, at any moment. Lately, life feels like living in the constant build-up stage, to the crescendo of a horror film. Our imaginations run wild as we watch movies like this, as the characters in the story pick up the phone, or open the door to the basement, or hear a fearsome rustle in the bushes outside. The anticipation of what could happen is terrifying, especially since our human nature often takes us to the worst case scenarios. But in reality, what almost always happens at the end of a roller coaster ride? We end up safely back at the wooden gates, laughing and smiling and exhilarated for what we have been through. And even if we didn’t like the amusement ride, it is past us now, and we have that notch in our belts, for having survived the experience. Retrospectively, the roller coaster ride ends up being a lot shorter than it seemed, while first crawling up that first big incline of the ride. And to the same point, what generally happens at the end of a thriller film? Usually, the crazy lunatic is finally stopped in his or her tracks, by our favorite hero or heroine, and we all can breathe again, as the movie ends in a feeling of relief and reprieve and calm. And even if this is not the case, as we parents always assured our children, “The movie was just pretend.” The worst case scenarios rarely, rarely come to fruition in the movies, or in life. A happy ending is almost always assured for us. The point of getting on to the roller coaster or us watching the thriller is because we like the excitement. These are some of the types of things that make us feel acutely alive. Some of us prefer small doses of thrills. The merry-go-rounds and musicals are enough for some of us. And others prefer bungee jumping and hatchet films. And then there is everything in between. Still, we each enter into these experiences because we want to feel the strong exhilaration that they create for us. We want all of the sensations of feeling alive in every state of our being. We feel the tenseness of our muscles, we feel the alertness of our minds, and we feel the relief and the letting go, the very peace of our inner spirits, when the ride safely ends, or the movie is over and complete.

I think that life is a lot like this. I like to believe that we entered into this earthly experience with the full expectation of thrills and challenges and calm periods, and being able to notice and to feel the distinctly different sensations that all of these unique experiences bring to us. I like to think that we step into the ride of our lives, or start the film of our lives, knowing that we will go through all sorts of ups and downs, but in the end, everything will end up alright. We step on to the ride, or we confidently press the start button, because we inherently understand that we are created to be strong enough to handle anything (the good, the bad and the ugly) and we want to give it a try. I think that probably the hardest challenge of this ride of life, isn’t the crazy ups and downs, it isn’t even the horrifying suspense moments, but more so, the most grueling part of this life experience is facing the reality, of how fast this life adventure really goes, as it heads towards the journey’s safe end.

Yesterday is Over

I missed writing my blog yesterday because I was at the hospital with my son. I have mentioned before that my youngest son is epileptic and yesterday, he suffered a major seizure. He’s okay. Other than some lumps and bumps from hitting himself on the hard floor of our local YMCA, where he works, he has mostly physically recovered. Emotional recovery will take a while longer. Yesterday, my son had his hopes finally dashed that he could wean himself off of his medicine forever, and live a “normal” life. All of our hopes for this outcome, were put to rest yesterday. Our family had one of our familiar wounds ripped open, and it will take some time to let it heal over again. The fragility of life and how little control we really have over anything, seems to be the theme this year, at every level of life, down to our family unit.

I’m very emotionally raw right now. My son’s biggest dream was to have outgrown his condition. His epilepsy diagnosis is something that we have been dealing with, working with, wrapping our heads around, for over six years now. His excellent response to his medicine cocktail (which took a while to find the right one – every epileptic person is unique, in what works for them), tricked us into believing that his brain had calmed down enough to say good-bye to the random electrical storms, stirring in his brain, forever, without the crutch of medicine. Medicines aren’t necessarily perfect miracles and we were eager to see if my son could be safe and healthy without his epilepsy medicine, and so with the blessing of his neurologist, we started the weaning process. My son’s seizure medication has a trunk load of side effects, including hair loss, weight gain, lethargy and a big tax to his liver, to name just a few. Still, after what we experienced yesterday, we’ll take these unkind side effects, in order to go back to the strong reassurance that these medicines have the ability to keep these scary and dangerous seizures at bay. (Before trying to wean from his medication, my son was seizure free for about four years.)

Seizures are terrifying to witness, so from a selfish point of view, I am grateful that I did not have to witness yesterday’s seizure. The head of the local YMCA called us and told us that the paramedics had taken my son via ambulance to our local hospital. We have been through this drill before. We knew what to expect. The miserable new wrinkle is that we were stopped at the door to the lobby of the hospital, only to be told that we could not go inside to be with our son, due to COVID concerns. That little wrinkle almost put me over the top.

We all have our burdens to bear. What doesn’t kill us makes us stronger. Uncertain has always been my least favorite state of being, so during this period of trying to wean my son from the meds, we all have had a heightened sense of insecurity. Thankfully, we can go back to the security that his medicine has afforded us for the last four years. We can close the “what if” chapter, for now. We can focus on the “what is” chapter, and look for the healthiest ways to heal ourselves and each other.

Yesterday’s outcome could have been so much worse. I am very aware of that fact and I am very grateful. Most epileptics recover from their seizures just fine – the bigger concern is what they are doing when a seizure happens. Drownings, falling from high places, car accidents are really the biggest concern for most people with epilepsy. Thankfully, my son was in a safe place, surrounded by people who knew about his condition and care about him deeply.

I’ve always been very open on this blog. I’ve opened my fragile heart to you today. Please handle it carefully. Please take today to be very kind to anyone you meet. We really don’t know what trials other people are going through. We humans tend to be really good at “faking it.” And with everything going on in the world today, there is a whole lot more of us out there “faking it” than ever before. Be mindful of this fact, and please be kind. Be kind to yourself and be kind to others. We all have the power to be kind, and that power is more uplifting, and more reassuring and more inspirational, than almost any other power in the world because kindness is rooted in Love.

The Worst Day

My middle son is working on his medical school applications. He asked me to edit the personal essay section that he wrote. This filled me with pride, seriousness and a great deal of trepidation. You see, my middle son’s major motivation to go to medical school started mostly with an experience that he had in high school with his younger brother. My youngest son is epileptic and my middle son witnessed my youngest son’s very first grand mal seizure (now called tonic-clonic), while he was driving them both to school. That day was categorically among the very worst days of my life – of all of our family’s lives. I cannot convey, in words, the desperate fear and the pure helplessness you experience, watching your child seize, lips turning blue, praying for it to end, as you hold him, trying to stop him from hurting himself, as his body flails uncontrollably. Every second of one of these seizures, feels like an eternity. It is scary as hell. My son’s neurologist told us that a grand mal seizure is like doing the most intense workout that you have ever done, in the concentrated time span of a few minutes. The experience is terrifying and the aftermath, is exhausting and painful. My youngest son experiences headaches that last a day and an unfathomable level of exhaustion, after coming out of one of these major seizures. Luckily, my son’s seizures are now controlled by a cocktail of medications, which unfortunately also have a bevy of undesirable side effects, but that’s for a different blog post. This post is about my middle son.

My middle son loves science. He loves technology. He loves fast cars and understanding how everything works. My middle son was my child that I was always having to pull his hands off of the buttons that he wasn’t supposed to be touching and pushing. My middle son is talented, smart, and extremely dedicated. He is meticulous and yet underneath all of that heavy, responsible armor that he carries around with him every day, lies a big, old heart of gold. I think there was a part of me that always knew that my son would be attracted to the medical arts, but the day that he witnessed his brother’s first major seizure, and was able to handle it all, in such a self-possessed, astute manner, despite tears flowing down his cheeks, as he calmly called us, and drove the car down a grassy median, avoiding the rush hour traffic, to get his brother home safely to us and to the paramedics, sealed the deal. He knew right then, that he wanted to use the gifts that had been given, to become a good, talented healer. There are silver linings in the bleakest of moments. This I know for sure.

When the paramedics loaded my youngest son into the ambulance, as he was now coming out of his seizure, I stepped up into the ambulance to sit by him and to comfort him, on the way to the hospital. Before they closed the back door of the ambulance, I glanced back at my middle son, standing in our driveway looking up at us both. If a mother’s heart can be ripped into two, it happened to my heart, in that moment. Part of my heart was beating for the welfare of my baby strapped to a gurney, and the other part was beating for the comfort of my brave, young man-child, who handled the situation so heroically. I wanted to comfort them, and me, and the rest of us, all in a steely envelope of relief, but all that I had was a fleeting glance, conveying worry/pride/gratitude/awe all at once, before the doors were quickly shut.

While my youngest son recuperated at the hospital and we knew that he would be okay, my middle son assured my husband and I, that he, too, was fine. In fact, my middle son wanted to head back to school because he had an exam that he didn’t want to miss and a soccer game to play in that night. It was evident to me that he was back to his level-headed, matter-of-fact, goal-oriented self. But I could also see that he was in a serious state of contemplation.

This morning, I made small edits to my son’s personal essay about what events motivated him to get into the medical arts, the most consequential event, being the day he witnessed his adored baby brother’s first major seizure. This essay that he wrote for the application, is his story. It is not mine to change. The story is his perspective and each member of our family has a different “story” about that very same life-changing event that happened in the lives of our family, and each of its members. We knew that this experience would change and affect all of our lives in some ways, forever, but in my middle son’s case, the change for him, came mostly, in the form of an internal, directional sign, pointing forward to his purposeful calling in life. Life works and moves in us and through us, sometimes, in the most poignant and mysterious of ways. We have no choice but to accept this fact, and let it flow.