I don’t think it is an exaggeration to say that every parent worries about ‘something’ happening to their kids. I know I did and still do even after something actually happened! I can’t tell you from where this voice of anxiety comes but I’m becoming more and more certain that its origin is fear. I can’t think of a single time when I felt stressed and anxious that I wasn’t also afraid of something. That may appear obvious to you reading it since it appears obvious to me having just written it but if fear is such a transparent foe, why then does it remain so formidable? I’ve often wondered, why is it that I know I’m afraid and actually despise feeling afraid and yet don’t do much to understand the cause of my fear, its birthplace within me and its ever expanding root system? Why am I so comfortable accepting my fear as a state of being? I’m beginning to develop answers to those questions but not because of any serene soul searching accomplished beside a babbling brook with tinkling bells in the distant wind. No, my search has been the result of sifting through the embers and shards of an old life while being forced to accept a new one that is ironically fragile and fortified.
You see, I’m on a journey that has forced me to face fear and I never realized just how many I had. My path is not a straight one and there has often been a new fear discovered at every turn. I’ve never been so frightened in my life but there’s a miracle that is also entangled in mystery that has become tangible. I have the strength and the power to face virtually anything. I might have told you at one time that I knew this about myself. I might have said something brave like, “Well, I’d do it if I had to. I suppose I could face my fear. I’m tough enough!” But these words were always uttered in the comfort of only being intellectually afraid, never having to actually confront a fear head on, figure out how to disassemble it and then smash it to smithereens. I’ve had to do that countless times now and every single time, every single fear is daunting and intimidating but I’m doing it. I’m facing what scares me to my very core. But the weird and curious thing is that I’m not getting rid of my fears once and for all even after I’ve identified one and played cat and mouse with it a while. I’m not quite able to banish them completely but I am able to tackle them and keep them down for a while. Will I ever be free from fear? Now that is a question!
The light of this journey has shone me glimpses of what that might be like. I’ve come to believe that facing a fear and naming it is certainly the first step to ending its choke hold but I haven’t quite figured out the rest. I’m still searching. My journey hasn’t ended.
It was December 21, 2007 when the very first hint of something wrong came into view. It was 3 weeks later in January 2008, my daughter, Aria, was diagnosed with leukemia. Cancer happening to one of my kids was my greatest fear and it remains a powerful source of fear for me to this day. Every time I saw a bald kid, who I assumed was going through some kind of chemotherapy my heart sank into the pit of horrid anxiety and wonderment. “How do those families cope?” “God, what’s happening to that kid?” What would I do if one of my kids was dealt a life threatening illness?” “What would happen if one of my kids died?” “What on earth would I do?” “How would I carry on?” “How do those people carry on?”
I’m one of those people now and all of those questions and more haunt me still even though I live, eat, breathe, sleep and smell cancer every moment of every day and have been doing so for quite some time.
I can’t tell you how many times people have said to me what I used to wonder about others in silence, and that is, “I don’t know how you do it!” I’ve learned to interpret that comment as both a genuine question as well as a sincere expression of admiration that is also enmeshed with a pretty good dollop of fear. When I hear people say that I go back in time to all the times I saw someone dealing with the ravages of cancer, for example, and I would spiral into a dark place of worry wondering, “What if that was me? What would I do?” So when people voice their wonderment and awe over how I’m doing it, I can’t help but hear whispered in the background, “Julia, I want to know everything you’re going through but at the same time I don’t want to know.” This is the voice of fear saying, “You don’t want to know because it is beyond your wildest imagination. It is beyond me -fear and well within some other realm that has no name. You want to know because you think by knowing you’ll feel more prepared and less afraid. You’ll create a list of ‘here’s what I’d do if something happened’ scenarios that you can keep tucked in your pocket at all times…just in case.” I remember doing that and thinking that. I think it is a perfectly normal thing to do and something we all do from time to time. Don’t we? The real question, however, is why we continue to do it when it isn’t a successful strategy for squelching fear and empowering the mind-body spirit to face what it must. I’ve learned that to continue engaging in the exercise of ‘if I worry about this enough I can make it real to my mind and therefore convince myself that I’m prepared and fearless,” is a complete waste of time and energy.
There’s nothing wrong with learning about other peoples’ experiences. Stories of trial and triumph are inspirational and that plays an important role in empowering our psyches. The capacity of the human spirit is infinite and we do well by learning and watching others show us just that. However, the problem is that sometimes we think about what other people are having to endure and how that would affect our own lives if the tables were turned that we ignore what’s happening in our own lives. Maybe it’s because we’re too scared of our own circumstances or perhaps we’re too bored or uninspired that we find other peoples’ lives so interesting to watch and unfold. I find that tragic because it doesn’t enable one to acquire the tools necessary for the transition that happens when fate comes knocking with a wretched hand.
Let me tell you something. It, whatever it is, will never be what you think it will be. Life is so incredible that way. The good or the bad that you imagine will always pale in comparison to what actually happens, so I’ve found that paying attention to what is actually going on infinitely more helpful than trying to conjure what could happen based on someone else’s experience.
Still, there are lessons to be learned from another’s experience that may not be perfectly applicable, but there are pieces of similarity that can be incredibly helpful. What’s often lacking however is direction and explanation. It’s one thing to say, “We ought to let go of our fears.” It’s something else entirely to demonstrate how that’s done.
It was never my intention to write in sometimes gruesome detail about my process of discovery and conquest while facing the Goliath of fear that resides deep within me. That sort of just happened. My focus was very simple. I had to tell a number of people the same information about what was happening to Aria and to my family. I accidentally discovered that through emails I could share the details of a horrific medical experience with ease and peculiar healing. My parents, Doc’s parents, my brothers and sisters, Doc’s brother and sisters, friends and extended family were every bit as blind sided with the news of Aria’s leukemia as we were. Suddenly these people were hurled into this horrible well of fear, worry, dread, wonder, shock and helplessness. They craved information. Sending emails was an easy way to target a number of people while simultaneously keeping the phone lines open, which was critical during those early days. But in a matter of a few weeks, writing emails became a sort of therapy for me. I was given a number of journals upon which to pen my thoughts but my hand couldn’t write nearly as fast as my fingers could type so the emails transformed into a journal.
Initially it was scary to be revealing and vulnerable until suddenly I ceased to be afraid. I can’t tell you when that happened exactly. It simply became a matter of preservation. I had so many thoughts swirling and buzzing in my head that they became a real threat to my sense of peace and calm. I found that the more I allowed them to marinate, the more chaotic and anxious I felt. When I began weaving my thoughts into the emails about Aria, suddenly they lost their power over me. I was less anxious, less worried and felt more able to face the fear of the day. Hitting the send button was like releasing the stress and fatigue never to be owned by it again…at least for that moment. I felt emptied and cleansed ready to face a new day and fill my head with new thoughts and discoveries.
These are some of those stories, those thoughts and fears. Although this is grand sweeping statement, I’ve come to discover that even though this is a tale about journeying through pediatric cancer, it is really a story about you and me and what it means to discover who we are and how we are all connected in the spirit of our humanity.
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