Live True

April 20, 2008
Subject: Live True

I have a good many thoughts crossing paths in the cavern of my mind these days. Some of them are cold and dark perhaps, while others are open, roomy and airy. This seems the perfect way to illustrate the day-to-day trials I encounter with Aria. One moment she is energetic, full of life and light followed by another moment that has taken a turn rather unexpectedly down a darker path followed by another moment that meanders gently toward the cooler calmer air making the experience easier to face once again. I realize that I have reached a place in the process where the light at the end of the tunnel, so to speak, is but a mere pin-hole that allows only miniscule luminescence a presence. I see it very clearly but I feel the weight of the journey before me heavier than ever. I'm going through some burn out, which has led me to feel insecure about my relationships with all the amazing people surrounding and supporting me. It has made me begin to wonder if this is a natural part of the process and therefore worthy of exploration and discovery. My sister, Susie, and my dear friend, Kelly, have joined me in examining this particular path and have illuminated for me that I am more than likely projecting my feelings as a result of this insecurity. My hope is that I project them upon the walls of my mental cave instead of upon others so that I can examine them intimately and personally, eventually relinquishing them to the time honored evolution of building rock solid spiritual strength if only drip by drip and thought by thought.

You see, every moment of every day I am reminded of Aria's illness and the severity of it. I have no way to escape its constant presence and its constant threat so I face it with a range of emotion that always begins with acceptance and compassion. But I'm tired and I'm sick of it. It is all consuming. It is all I talk about and think about and as a result, I can't help but feel horribly self-absorbed. This is what has led me to feel insecure, wondering if you or others are growing weary of the stories and the hardship and the struggles. I find myself questioning what I'm choosing to write and represent. I ask myself, "Where are the happy moments? Is it always gloomy and difficult?" I wonder, "What are they thinking by now?" "I know I'm so sick of thinking about it, perhaps others are too." " Perhaps I should stop writing and stop documenting what's going on." "People needn't be burdened." "It's too much." " Enough is enough." These are some of the thoughts that have been given voice in my mind. I'm sitting here assuming what's happening on the receiving end of all of this because I can't get passed being so consumed myself that it only makes sense to me that you must also be feeling the same. I'm beginning to understand, however, that this probably isn't fully true and reflects more than anything my state of mind. That being said, I wonder if other people experiencing similar circumstances go through a period of shut-down that is motivated by this insecurity. It is an assumption that others are equally burned-out so better to spare them the persistent drudgery that anchors the spirit in darkness. Better to mask what's really going on as some kind of protective mechanism so others will stay engaged and more importantly stay the course. Better to put on that happy face and speak in positive terms so that others don't think I am losing faith, hope or optimism. The journey, which has only been a little more than 3 months with another 25 months to go, is so long and so tedious that I imagine not everyone will see it to the end and it is important to say that not everyone should. We all have a role to play and sometimes this role is short, sweet and gentle, while other times it requires mighty crampon-like movements that pierce and bite one's surroundings in order to prevail. The fragile balance of delicate persistence is what I'm seeking now. Still, I wonder if there's some kind of unspoken expectation that we place upon ourselves or if it's some thought that we've adopted as truth for one reason or another that others need to be spared the intricacies that define our new normal. It is so tempting to change the focus, highlighting all of those moments that are light, hopeful, full of strength and endurance. But the honest to God truth is, that those moments, at least right now, are such a fraction of any given day. Although they are powerful, they don't yet out-do those things that are relentlessly challenging. I believe I would be glossing over those truths that dishearten my spirit and nibble at my psyche if I neglected to write about them and I certainly don't believe I would be painting a truthful picture for you.

The conflict of keeping it real all the while keeping it positive and hopeful is a very real one. So much of the literature I was given and have read about cancer heavily promotes ideas that are associated with people like Lance Armstrong. Inspirational sayings like, "Live Strong, Always have Hope, Have Courage," and so forth are absolutely everywhere and I can fully understand the necessity of them. To consider for a moment the opposite end of the spectrum which would be something like, "Cancer treatment of any kind is scary and horrendous, Prepare to suffer, Your emotional well-being will be battered and bruised on any given day, Face death with faith," and so forth, are positively outrageous! Who in their right mind would find any comfort in such ideas? Yet, they hold some truth and no one talks about it. No one even mentions it with the exception of subtle nods and exchanges of teary glances. I find it, therefore, not hard to believe that people are more inclined to talk about the things that are going well and to either dismiss completely those things that are not or to somehow convey that despite hardship and worry that everything is still fine. This is the "hope". This is the "keeping things positive". This is "staying strong". This is "having courage." This is all I get and I find that often these kinds of sentiments fall flat laying listless before my feet. It isn't that I don't believe them to be true and when I think about people who are the champions of success like Mr. Armstrong, I have nothing but respect. His talents, his achievements and what he's been able to overcome are just staggering. He is nothing short of extraordinary and the work he represents and is committed to sharing with us all is absolutely essential. Likewise, I am equally inspired when I watch commercials showing athletic people in the grind of their fitness regime promoting one thing or another always encouraging the sentiment that gets the blood going: "Just Do It" as Nike promotes. I feel my heart beat a little faster and I sense a part of me somewhere desiring to leap off of the couch, slap on a pair of dusty running shoes (do I even have running shoes?) and begin something I know I ought to. But then I face my reality. I am not a professional athlete. I'm not an athlete at all. I'm not accustomed to pain and suffering and working until that victorious goal has been met. I watch these commercials feeling inspired and even a few tinges of guilt but it is never enough for me to put down my sandwich and chips. Instead, I typically take a nice swig of my beer and put it off for yet another day. What will motivate me in this realm is still a mystery to me. In another realm, I sit in the waiting room of the clinic and read inspirational stories of regular people surviving their cancers at the same time I'm surrounded by people still very much in the struggle to fight cancer sometimes for the first time and often times repeatedly. I read again and again and again about the power of positive thinking, the power of faith, the never giving up hope, the staying strong and although these sentiments really do resonate somewhere, they are but a whisper.

I talk to other mothers in the clinic and they try to stay positive and focused. They smile and say that everything is going well. I hear things like, "I just know she will be fine! She's going to beat this thing! I've never felt better in my life! I have so much support that I feel stronger than ever!" I'm always amazed. I don't actually feel any of these things with any great depth nor do I feel anything negative with any great depth. I'm in a numb sort of middle ground wondering. I wonder about the smiles I see that mask the fear and sorrow. I wonder about the incredible energy it takes to always put on that happy optimistic face for the world to see. I wonder about the expectations I place on myself to project confidence and security when I feel neither at this time. It strange to be in a place where the world around me has moved on in some respects and I am still very much in the same place. The crisis has ended but the threats are real, the pain is real, the suffering is real, the joy is real, the laughter is real and it is every day.

People still say, "I can't imagine what you are going through" and it is said with great sincerity but again, I truly believe we do not need to experience each other's sufferings in order to understand another's anguish. A mother I met recently has a daughter with ALL and one might assume that we have a great deal in common with this shared diagnosis but it is a misconception. This woman's daughter is much younger than Aria with a much more complicated recipe of care to name something very simple and obvious. We share very similar worries on some level but when we met, any concern or worry she had was completely masked by her commitment to believing all would be well. She was so positive and optimistic that I was suspicious and didn't believe the genuineness of her smile, which felt horrible. However, I quickly contained those thoughts and turned them back toward me. I was heavily guarded myself.

Meeting a complete stranger in the middle of a busy clinic is not the place to feel safe and vulnerable by any stretch of the imagination. I did manage to tell her that I greatly admired her optimism, which for me feels bottled upon a shelf I see daily but can't seem to reach and hold. I know one day I will and from it I will drink deeply and be overcome with its power. For now, I feel something very different. She looked at me knowingly and acknowledged that she too has bad days and fights being consumed with worry. I thanked her for her honesty giving her arm a gentle stroke and reminding her that it made me feel better knowing I was still ok even though I'm not always the beacon of bright hope.

You may be reading this and pondering, "Well, of course! One can't always be positive! You can't always have an optimistic outlook, particularly when things are really challenging!" I would answer, "you would be amazed to know that that's the attitude I feel expected to have." Everywhere I look. Everything I read echoes these sentiments and for good reason. I get it. But the battle goes on and so does life and here I remain worrying that people are sick of hearing about it and hoping that I will move on and know that Aria is getting better, and know she will lick this thing and all will be fine! I don't actually know that (despite what I want to believe and hope for) so it is that weight that always keeps a part of me in its darkness.

This subtle expectation that suggests being strong and courageous is synonymous with being optimistic and hopeful is definitely our mainstream culture. I tell you, it takes a great deal of effort to maintain that attitude sometimes. Just the other day, I was in my dermatologist's office and he asked how things were going with the kids. I told him about Aria trying to maintain a perky, positive outlook. His shoulders sank when he heard the news and saw right through the facade of strength I was trying to keep firmly implanted. After I spewed on about how well she is doing and how well the treatment is going he looked me in the eye and asked, "Uh-huh. How are you doing?" Shockingly, tears spilled from my eyes. I was completely disarmed and once again reminded how close to the surface my tears remain at all times. I told him that I am up and down trying to find that place of balance. I told him that I'm trying to give myself permission to struggle where everywhere I turn I'm feeingl encouraged to the contrary. I told him that I am deeply optimistic and fully committed to doing whatever needs to be done, but at the same time I am scared and sad. He listened with such presence and I was incredibly grateful for that. At the end of our appointment, he said to me, "Julia, your skin looks great and so do you. I don't think I would be nearly as together as you seem right now." It was all I could do not to burst into tears for having received such a vote of confidence. I have since learned from that encounter that the freedom to just be as I am in this moment is the most reassuring gift anyone can give me right now.

I'm sitting here with tears streaming down my face. I don't know why. We are having a great morning. Aria has not vomited for 2 days and she's in pretty good spirits. Sometimes, the tears and the sadness come over me and I take an unexpected turn down a darker path, exploring and discovering. We all have challenges in life. We all experience tragedy on some level or another. It is so easy for me to look at another's situation and feel grounded in my own, knowing mine isn't "as bad". But as I explore farther into the depths of that thinking I discover there are at least 2 attractive reflective pools that mask bottomless pits when gazing into the lives of others. The first enables one to glance at another's situation and have reflected an image that pales in comparison. I find this like a black hole in which to throw one's thoughts because it constantly discredits the hardship one is currently facing. It promotes a very dismissive attitude that, to my mind anyway, discourages people from truly understanding their situation and the emotions associated with it. The voice that nags, "what do you have to complain about? Just look over there at what that person is going through!" confuses the already conflicted mind and heart. We feel guilty for complaining, knowing our plight is less severe but still we struggle. To continue gazing into this perverted reflecting pool is a waste of energy and a distraction from living true.

The other eternally dark pit is the one of chronic self-pity and the one that constantly drives the spirit to seek understanding outside of itself. We gaze into this pool searching for a reflection that doesn't exist. We squint our eyes ignoring everything around us hoping to see something that will bring clarity. I have said this more than once now, but the temptation is so great to say, "you just don't understand what it's like!" as a way to dismiss feelings that we have convinced ourselves aren't representative of courage, strength, hope, faith and optimism. It is an effective way to slam the door in the face of those simply trying to have a glimpse of our world. A world that we don’t actually understand ourselves. We can remain on the doorstep without ever having to travel very far into our personal world of understanding just slamming that door again and again hoping that an outside source of understanding will appear and suddenly change the world that waits to be noticed.

The complimentary question that one asks when tempted to stare into this particular self-pity pool is the one for which there is no answer. "Why did this happen?" or worse, "Why did this happen to me?" Persistently asking these questions seems a marvelous way to spend endless amounts of time avoiding the more answerable questions; "How am I going to cope and adapt?" "How do I maintain a positive but truthful attitude?" "How can I invite others into my world with gentle compassion?" "How can I help others understand my needs?" "How can I best give myself permission to be truly, fully present to myself?"

As I walk through the darkened pathways of my mind, I enter an airy space and I sit and I write the thoughts that have gathered. I am learning to be fully present to myself in order to be fully present to others. I am learning that the more I give myself the freedom to express the range of emotion I am so blessed to possess, the better I am able to invite curious, well-meaning on-lookers into my world. I am learning to embrace my sadness and my tears like loving mentors who show me what it means to be appreciative and grateful when the darkness fades into the light. I am learning to explore these dark corners with less fear, less suspicion and with more patience and care. I am learning that this journey will have openings of light that may at times be blinding, forcing me to see with my other senses. I am learning that others may share this cave of mine, but none of us ever travel the exact same path. I am learning to listen to the voice of my spirit who strives to be gentle, open, and compassionate. I am hoping to speak with my spirit's voice so that no matter what total darkness comes my way, I will always have the light of its essence guiding me.

At this moment, I feel the fire of myself burning brightly. I am able to leave the darkness and greet this day knowing that despite everything I remain strong, courageous, hopeful, faithful, and optimistic. But most importantly, I leave the cavern of my mind with torch marks engraving my new mantra, "Live True."
~j