The Fear Paradigm
Fear. A construct we are all familiar with. Rational or irrational, we are all afraid of something.
Before we lost Vail, my biggest fear was that something would happen to me and I would leave my girls without a mother. The thought of those two special ladies growing up without the love and guidance of mom terrified me. Mostly because I grew up without a mom and I knew first hand how difficult that was. I didn't want that for them. Plus, if I am being totally honest, it just never occurred to me that one of my perfect, healthy, happy girls could just not wake up one day. Despite my personal experiences with SIDS as a paramedic, I didn't really believe it could happen to one of my children. Never-the-less I bought an infant monitor, a pricey extravagance, to subdue what I considered an irrational fear of SIDS. Both girls wore it, every night of their lives until they outgrew it. For Vail, she cognitively outgrew it before she was physically too big. This was just a few weeks before she passed away. Even without the monitor on, I never thought this could happen. I didn't know anything about SUDC or that it even existed. Even if I had, I probably would have blown it off as an impossibility for my healthy kids.
Instead, I had other fears. Fears that would seem normal to most moms. The fear that I would mess up my kids, or that I wouldn't be a good enough mom. I was afraid they wouldn't get enough nutrition or that they would get sick. The regular stuff, nothing crazy. Most of my pre-loss anxiety was about money or work or some combination there of.
I had never been afraid of much in life. Thinking that I had been through my share of life's unfairness. My childhood was tough. It included abuse and neglect and a substantial lack of love and support. My only parental figure, my grandmother died when I was 18. And then, despite feeling alone in the world my entire life, I was truly on my own. My good friend from high school was brutally murdered a few months later. I was no stranger to loss. Several other friends were lost over the next five years, all tragically. Like many others in their twenties, I had several failed relationships that left me broken hearted. I struggled start my career and to become financially stable. I did all of this while on my own.
I say all of this as an extra long preface to the actual topic of this post, to which I think the backstory provides depth and perspective. To that end, I pose the question to you and to the universe at large:
What happens when your greatest fear becomes reality?
Even though it never crossed my mind, my greatest fear was that of many parents. That my child would die. The specifics of how don't matter much. For most parents, the thought of a sudden loss like Vail's seems irrational, it certainly did for me. So we wrap that fear in something extra. Something like childhood cancer or a car accident. Horrible ways to lose a child for sure, but somehow more rational than "went to sleep and didn't wake up."
To answer the question, I think there are two basic responses. When your greatest fear becomes reality it can go either way. The most obvious response is that everything becomes a source of panic. The possibilities of injury or death are endless and we face them all every day. So it is surprisingly easy to spiral down that rabbit hole. The other, less obvious response, is to fear nothing (or very little). You may be asking how that is possible, and I'm not sure I can explain it, but it happens.
Panphobia is the fear of everything. If you had asked me in the first few weeks after Vail's death, I would have said that I would fall into this category. When every single nerve (both physical and emotional) is throbbing with unbearable pain, your fight or flight response is at an all time high. The sleep deprivation doesn't help either. I was afraid of the dark. Hell I was afraid of bedtime, even if it wasn't dark. 7pm became a traumatic time of day. Just watching the clock change over was a trigger. The thought of falling asleep was more than I could handle. So, of course I was afraid of everything. It never occurred to me that my fears would narrow in focus as time went on. Yet they did. I still dread bedtime. And sleep is foreboding. The scary things that can happen there torture me. I'm afraid of losing my husband or my surviving child, and I'm terrified of the life that grows inside me now. But that is where the list stops. I don't fear specific things, like failure, cancer, accidents or death. I fear the pain that those things can cause. But not the things themselves. What is even more surprising is that outside the PTSD flashbacks and specific triggers, I don't think about being afraid. My anxiety is very specific and does not extend to general sources of worry.
In light of the Covid pandemic and the trepidation that it has created for so many people, I think it's important to address it in a post focused on fear. I have a theory about this that explains the reason that I no longer have much dread about life's possible pitfalls after my life turned into a living nightmare. So here goes...
I don't think that people are afraid of Covid. Or even of getting sick in general. They are terrified of death. Why? Because, despite our individual beliefs about what happens when we die, it is still an unknown. Studies show that even the most staunchly religious individuals who adamantly believe in heaven, are among the most afraid of dying (1). Regardless of what we think happens or believe happens, we can't be positive. And I propose that we are most afraid of the things we don't understand. People are so afraid of death that they will essentially stop living to avoid even the slimmest odds of it. They will surrender their rights and their liberties and their livelihoods to escape it. Don't let me burst your bubble....but death will come for you when it's your time. It doesn't matter if you are 16 months or 99 years old. That is one of the hardest things for me to accept about the loss of our daughter. I have obsessed over every memory, every picture, every possible explanation for what happened to Vail. I have blamed myself, maybe rightfully so, maybe not. In the end, none of that matters. Vail is gone. Nothing will change that. People die every day, from a myriad of causes. Some preventable, most not so. So why are we so afraid of something that is such an intrinsic part of life? It seems as though it is partially cultural. The buddhists believe that we cannot truly live a happy full life until we accept death as an inevitable part of life. As Americans we avoid it. So much so that we are miserable failures at supporting the grieving. I lost count of the number of people who have said in the wake of Vail's death that they were so affected by it that they couldn't show up to support us. THEY were so upset by her sudden death, that THEY couldn't be supportive???? Translation: This loss speaks so strongly to my fears and I am not capable of facing them, so I will avoid the whole thing entirely by avoiding you.
I hope I don't sound callus. Because in fact, I am the exact opposite. I am even more aware of the value of life than ever before. Every single life. I am also more aware of the fragility of life too. And because of this, I hate nothing more than when people quote risk numbers. Oh, the chances of this happening is super low. It's only 1 in a million. When you become a statistic, the numbers take on new meaning. Odds of SUDC death: 1 in 100,000. That's a hell of a statistic. There are many SUDC parents who have been told by their pediatricians that there is no education about SUDC because it is so very rare. Which is infuriating. Now, we are in a position where the world has come to a standstill over a virus with the odds of death that are 1 in 19 million. Even more infuriating. Not because it isn't an issue that needs addressing but because there are hundreds of other illnesses and causes of death that are much more prevalent that are totally accepted and unacknowledged as major issues. SUDC included. Are we to stop living every day to the fullest for fear of every possible threat? If so, we can't do anything at all. We can't drive a car (chances of death 1 in 103), we can't eat a big mac (chances of death from heart disease 1 in 6) and we certainly can't risk walking anywhere (odds of death via fall 1 in 127) or eat anything (odds of death by choking on food 1 in 3,416)
My point in all of this isn't about SUDC or even about Covid. It's about life. Life is full of risk. In fact, life is defined by risks. We take a risk every time we wake up and leave our homes. We take a risk every time we eat a meal or ride our bikes. So how, after losing my child to something with such low odds as SUDC am I not paralyzed by fear? To answer that, I will quote the great super hero The Hulk. In the Avengers movie when Tony Stark asks The Hulk what his secret is to managing his anger, The Hulk answers "The secret is, I am always angry." Angry is his baseline. His normal. Scared is my baseline. What is my secret? I am always afraid. So much so that it has become my normal state. In a weird way, it has enabled me to enjoy my day to day life, despite the heavy burden of the pain I will always carry. I lost my child. Nothing worse could happen to me now. Each day I survive the loss of Vail is a successful day. A day worth living to the fullest. Because the next one isn't promised to me. When you have come face to face with mortality on this level, it becomes a constant companion. How could I be afraid of death now? Vail is waiting for me. I dread living a life in fear of everything more. How is that truly living? It's not. So I won't fear lightning or sharks or Covid, or death. I can't. What does that teach my surviving children? What kind of life is that for them? Or for me?
I'll leave you with this thought. I never for a moment thought that September 16th, 2019 would be the last day of Vail's life. I never imagined it would be the last day of my life. I died that day too. That person is gone. Yet, it happened. Take that lesson with you, everywhere you go. Did I live Vail's last day the way I would have if I had known? Absolutely not. I am certainly trying to do that now. Every day I love my child and my husband as much as I can. I try my hardest to find joy in the little things and I don't complain about the stuff that I used to think was important. Finding peace in the moments of joy that life offers me is a challenge, but I focus on that, instead of on all the things that could go wrong. It really is a choice. We can chose to live or we can chose fear. Don't chose fear. Live. Live as much as you can. Live so passionately that when death comes for you, you great him as a friend, without fear.