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
Monday, August 3, 2009
A day in the life...
Several days had passed since I wrote this particular email describing what it is like to live with someone facing cancer in full battle mode. The strangeness of trying to assimilate both the brutality and the delicacy of this particular moment to moment existence is a real challenge to describe. I've come to realize now more than a year later that it is nothing more than the never-ending human struggle to live in a place of balance. My friend sent me a couple of wonderful images of a woman/goddess holding a scale. One was in reference to justice, which superficially wasn't applicable at all but the image itself was brilliant. The other was of a warrior goddess seeking the balance of battle. Both were exceedingly helpful in reminding me that indeed the purpose of any moment is to find the experience of balance. That, which is always both good and bad in any moment. What follows here is simply a description of one of those moments.
April 12, 2008
Subject: a day in the life….
We’ve had a decent week, I tell myself, in spite of the ups and downs we are trying to integrate as some kind of ‘normal”. Aria’s 3 day respite from vomiting ended earlier in the week, which was completely disheartening, I’m afraid to say. Intellectually, I know that many cancer patients just ‘learn’ to get used to it, accepting that is comes with the territory. Frankly, I doubt it is something I will ever get used to. Emotionally, it flips me upside down every single time. Aria’s vomiting is always sudden and shocking. She is never casual when it is about to happen as one might expect when prepared to encounter a familiar experience. She is always in a state of panic, which is completely unnerving. It is also worth mentioning that she is miserable for a good long while before she actually throws-up, which forces me to examine every trick in the book in order to comfort her. My heart is punctured and deflated each time I witness her body writhe in discomfort and hear her heaving while she spews the contents of her stomach. Shortly afterward, when she’s done, my heart fills with relief and a peculiar companion to joy that celebrates her improved physical well-being and her desire to resume her normal activities.
Let me tell you, there is nothing ‘normal’ about feeling so gross that you have to puke almost every single day. Of course, we have been in close contact with her doctor to try and figure out what’s going on and we believe that for the last few weeks several things have collided to create this situation. We’ve had a cold that’s been circulating in the family now for the second time, which has presented as a productive cough that triggers her gag reflex. She takes a daily chemo drug that is the real culprit and we have decided to try giving it to her in the morning instead of the evening. We are also playing with the timing of an anti-nausea drug that she takes morning and night. Why this is such a big deal, beyond the obvious discomfort, is that she will continue taking this drug for the next 2 years! It is an enormous emotional drain knowing how crummy she feels most of the time and may likely feel for such an extended period of time. It is an every day reminder of just how sick she remains despite how well she is doing. The contrast of these realities that are paired and ever present is a relentless foe. Truly, it is not a matter of ‘getting used to” it is a matter of managing and overcoming somehow.
I want to try to describe the emotional ride I experience every day that she vomits because it is so utterly unique. For the hour or so before she vomits, she is incredibly uncomfortable constantly meekly complaining that her tummy feels yucky. She’s not at all herself and becomes quiet, withdrawn and reserved. She has moments when she’s improved and I breathe deeply trying to reassure myself that the threat has passed. Often however, the threat returns and she spirals once again to a darker place. As I am watching this decline and listening to her woes, I know there is nothing I can do but prepare for what is bound to happen.
I picture myself like a nervous little sun-fish swimming in somewhat frantic circles in a lovely little pond. My pond has a beautifully decorated ceiling with green lily pads and pink flowers. The floor is a rich muddy wonder with small stones scattered around and there are leafy plants that wave and wiggle tickling my fancy as I swim. When Aria is in her pre-vomiting stage, I swim just a little bit faster and with a little less purpose and certainly less enjoyment.
Suddenly when the inevitable happens and I race in my human form to the bathroom with her in my arms, I notice that my heart is pounding and I’m somewhat breathless. At the same time, I’m trying to be soothing and comforting to her and be solid in my presence despite the fact that I feel somewhat fractured.
As my sun-fish self, I feel as if I have been forced to swim with such power and determination that I have hurled myself out of the water onto a nearby stone that seems the perfect platform for an “out-of-pond experience”. I am breathing quickly, with my one eye staring up at the vast unknown, trying to flip myself back into the comfort of my pond. I flip and flop and flip and flop and flippity-flop-flop-flap until finally I take a deep, deep breath. It’s all over and I’m back. I help Aria wipe her mouth, flush the toilet and follow her lead to whatever tickles her sun-fish fancy in the moments that follow.
~j
April 12, 2008
Subject: a day in the life….
We’ve had a decent week, I tell myself, in spite of the ups and downs we are trying to integrate as some kind of ‘normal”. Aria’s 3 day respite from vomiting ended earlier in the week, which was completely disheartening, I’m afraid to say. Intellectually, I know that many cancer patients just ‘learn’ to get used to it, accepting that is comes with the territory. Frankly, I doubt it is something I will ever get used to. Emotionally, it flips me upside down every single time. Aria’s vomiting is always sudden and shocking. She is never casual when it is about to happen as one might expect when prepared to encounter a familiar experience. She is always in a state of panic, which is completely unnerving. It is also worth mentioning that she is miserable for a good long while before she actually throws-up, which forces me to examine every trick in the book in order to comfort her. My heart is punctured and deflated each time I witness her body writhe in discomfort and hear her heaving while she spews the contents of her stomach. Shortly afterward, when she’s done, my heart fills with relief and a peculiar companion to joy that celebrates her improved physical well-being and her desire to resume her normal activities.
Let me tell you, there is nothing ‘normal’ about feeling so gross that you have to puke almost every single day. Of course, we have been in close contact with her doctor to try and figure out what’s going on and we believe that for the last few weeks several things have collided to create this situation. We’ve had a cold that’s been circulating in the family now for the second time, which has presented as a productive cough that triggers her gag reflex. She takes a daily chemo drug that is the real culprit and we have decided to try giving it to her in the morning instead of the evening. We are also playing with the timing of an anti-nausea drug that she takes morning and night. Why this is such a big deal, beyond the obvious discomfort, is that she will continue taking this drug for the next 2 years! It is an enormous emotional drain knowing how crummy she feels most of the time and may likely feel for such an extended period of time. It is an every day reminder of just how sick she remains despite how well she is doing. The contrast of these realities that are paired and ever present is a relentless foe. Truly, it is not a matter of ‘getting used to” it is a matter of managing and overcoming somehow.
I want to try to describe the emotional ride I experience every day that she vomits because it is so utterly unique. For the hour or so before she vomits, she is incredibly uncomfortable constantly meekly complaining that her tummy feels yucky. She’s not at all herself and becomes quiet, withdrawn and reserved. She has moments when she’s improved and I breathe deeply trying to reassure myself that the threat has passed. Often however, the threat returns and she spirals once again to a darker place. As I am watching this decline and listening to her woes, I know there is nothing I can do but prepare for what is bound to happen.
I picture myself like a nervous little sun-fish swimming in somewhat frantic circles in a lovely little pond. My pond has a beautifully decorated ceiling with green lily pads and pink flowers. The floor is a rich muddy wonder with small stones scattered around and there are leafy plants that wave and wiggle tickling my fancy as I swim. When Aria is in her pre-vomiting stage, I swim just a little bit faster and with a little less purpose and certainly less enjoyment.
Suddenly when the inevitable happens and I race in my human form to the bathroom with her in my arms, I notice that my heart is pounding and I’m somewhat breathless. At the same time, I’m trying to be soothing and comforting to her and be solid in my presence despite the fact that I feel somewhat fractured.
As my sun-fish self, I feel as if I have been forced to swim with such power and determination that I have hurled myself out of the water onto a nearby stone that seems the perfect platform for an “out-of-pond experience”. I am breathing quickly, with my one eye staring up at the vast unknown, trying to flip myself back into the comfort of my pond. I flip and flop and flip and flop and flippity-flop-flop-flap until finally I take a deep, deep breath. It’s all over and I’m back. I help Aria wipe her mouth, flush the toilet and follow her lead to whatever tickles her sun-fish fancy in the moments that follow.
~j
Honesty
April 2, 2008
“Honesty”
I have a friend who has gas. This alone isn’t all that unique except that she is so honest about it. Once when she came over, she had let one rip and at the same time I had picked up the baby. I remarked to the baby in my sing-song baby voice, “S.t.i.n.k.y baby! You stinky little thing!” My friend sheepishly admitted, “ahhhh, no, that would be me!” I was stunned because what I smelled clearly was the collective work confined in a diaper that only a baby can produce. Alas, I was indeed mistaken and the foul odor came from my friend. I was completely horrified to think that I had been in fact calling her a stinky baby! She, however, took the whole incident in stride, which I found beyond impressive. I kept thinking about how I would feel if I had been her and I’m certain I would have been crushed. I know I would have been completely embarrassed and humiliated. My girlfriend, however, didn’t seem to be either. She was apologetic but fully accepting and honest about her ‘gassiness.’ Talk about literally taking the stinkier side of oneself and just going with it! I found this incident a wonderful example of honesty and humility and because of her and others like her I feel committed to walking a straighter line.
I have received several emails over the last 10 weeks remarking about the honesty of my emails and I’ve been thinking about it deeply. You know that I made a promise on January 15, 2008. This promise to be honest was an awakening of sorts because it forced me to admit that I’m not always honest and I want to be. I’m also raising children who I hope will be honest and I must not only teach them this skill but model it as well. This was my opportunity to begin my practice of understanding the nuances of honesty in order to learn how to be a more honest, more humble, and more genuine person.
Ever since January 15, 2008, I’ve been replaying our hospital stay and my reactions and conversations during that time. One of the stinky realizations that I have had to own is that I have a side of me that is a flirtatious brown-noser. In my more immature years, I quite innocently and perhaps even unconsciously flirted my way through life, flaunting my pretty little self, hoping to get my way. I don’t think I was very genuine in those times and certainly didn’t spend any time trying to understand and dissect my behavior in a way that would elevate my confidence. When I was in my early 20’s, however and heading into graduate school, on probation no less, something changed in me. I realized that I was in the big leagues and no amount of cutesy flirting was going to get me the grades I needed to stay and the only way I was going to be taken seriously was if I began to take myself seriously and have an honest focus on what needed to get done. It was here that my journey toward truth and honesty really began.
Old habits die hard though and when I think about that time in the hospital with Aria, I felt forced to stare my sincerity in the face. I remember meeting a nurse when we were first on the inpatient unit. She was so sweet and gentle with us and I wanted to be equally as nice and considerate but I kept wondering why do I feel the need to be nice and gentle? All I wanted to do was lie down on the floor in a massive heap and cry. Why was I trying to be-friend this nurse? Did I really think we were going to be friends? What did I want from her? Was I trying to manipulate something here in my favor? These were some the questions rambling through my mind. I didn’t know it then, but what I was doing was bargaining. We were moved to a different room a little later on that was much more spacious and I wondered why they were being so nice to us. The completely shattered and insecure part of me was suspicious thinking that we must be in really bad shape and they feel sorry for us. I know it sounds crazy but I really did have those thoughts. I actually came out and asked the night nurse if we were in this special room because they knew we were going to be in for a really long haul and they wanted us to be as comfortable as possible. I was trying to be strong and brave when I asked her but I felt like such a child with a quivering lip trying to hold back tears. Mary, our nurse, paused and looked at me so tenderly. She held both my arms and said with such warm reassurance, “You are in this suite only because it’s available. There may be another family that comes in that will need it more than you and we’ll have to boot you out!” That humorous ending felt like eating what I thought was going to be a bitter pill but was instead a Pez. I trusted her and took my first deep breath.
The following days in the hospital were on one hand very clear and on the other hand a complete blur. I remember clearly wanting to know everything that was happening and why. I was constantly asking questions but trying not to hover. I also didn’t want to be suspicious and I wanted to trust that the medical team caring for Aria knew exactly what to do but I questioned them nonetheless and I made certain I understood every single detail of her care. I didn’t always understand in the moment, however, and I allowed myself plenty of time to process information and formulate questions as they came and ask them whenever I could. I was constantly aware of my tone and my mood because I never wanted to come across as abrasive or make anyone feel defensive. I just didn’t have the reserves for that kind of energy or interaction. I wanted everyone to get along and I desperately wanted everything to be ok. There was only one nurse with whom I felt little connection and I avoided her from then on. It was so odd. I was so aware of wanting to be perceived as a good person and I kept asking myself “why?” The truth of the matter was simple. In the back of my mind I couldn’t escape the manipulative irrational thought that if I was positive then so would be Aria’s outcome. Once again I had 2 voices in my head going back and forth. There was the quiet and subdued rational mind and the crazy head that was trying to function upside down.
“That nurse was so sweet! She spent so much time answering my questions.” rational mind would say.
Crazy head responded, “You should do something for her! yeah, do something! Bake some zucchini bread for the nurses!”
“I’m sorry, did you say zucchini bread?” rational mind sputtered while images of a bake sale fluttered by.
“Yeah, if you do nice things, they’ll like you more and maybe Aria will get extra attention!” crazy head said firmly.
Rational mind was suspicious and cautiously said, “Extra attention? What are you talking about? Does it matter if they like me or not?”
“What, are you nuts? Of course it matters! They have to like you...” crazy head retorted
Rational mind interrupted, “They have to like me? What if they don’t like me? Oh, my God! Right. They have to like me. Wait! Wait! Wait a minute here! How did this become about me?”
“You’re the mother! You can make things happen! If they like you, everything will be ok” said crazy head fading.
Rational mind spoke deliberately, “You can not change what is happening. You are not in control! They like you or they don’t. You are not what matters here! Focus. You can not change what’s happening by being nice, flirtatious and sweet. You can not brown nose your way toward a different result. For God’s sake, just be real!”
Be real..be real..be real...I began to chant which suddenly turned into breathe...breathe...breathe...
.
There it is. I was trying to bargain my nice-nice for some kind of magical outcome for Aria. All those years of silly sunny manipulation slapped me in the face. I went to the bathroom mirror and I told crazy head “Turn yourself around and right your world for this new normal.” I told rational mind “Be yourself. Be sincere. Be honest. Be all those things you want from others and above all things be kind.” I blew myself a kiss and turned out the light.
This was a pivotal moment for me because I really wanted to explore being certain that all of my interactions were sincere and without expectations. I kept thinking about Carol King’s song “Beautiful”.
You got to get up every morning
with a smile on your face
and show the world
all the love in your heart.
And people gonna treat you better
you’re gonna find
yes you will
that you’re beautiful
as you feel.
I have enjoyed that song since I was in elementary school. I believe every line to be true. I became focused on making sure that all of my emotions were kept about me and no one else. If I was feeling insecure about not understanding a procedure, rather than begin a conversation that was defensive and suspicious, I always prefaced my dialogue with phrases like, “Please be patient with me...or I’m feeling really insecure right now...or I could use a little reassurance about.... or I’m sure someone explained this to me already but I’m still confused.. and so forth.” It made me feel more relaxed to do this and strangely, it gave me a sense of control. I couldn’t control what was happening to Aria and I was devastated by that. But I could control my behavior in all of my interactions and I wanted those exchanges to be beautiful for purely selfish reasons. I was suddenly surrounded by completely ugly, foreign, scary, circumstances and I needed beauty, kindness, gentleness and consideration. I felt strongly that in order to get that from people, I would have to be that myself. There’s that saying, “treat others as you would like to be treated.” The sing-songiness of that sentiment makes me want to keel over but I can’t ignore its inherent truth. What I’ve had to be certain of, however, is that my positive cheerfulness is without expectations. I don’t want to be manipulative. I just want to be real.
In attempting to be as transparent and honest as possible I’ve drawn a very important conclusion. It doesn’t take much strength or courage to be honest but it requires tremendous strength and courage to take it. When we received Aria’s diagnosis, the world as I knew it became warped, convoluted and unfamiliar. No amount of bubbly goodness was going to have any influence on the horrific blow we had received. No silky bows or glittery sprinkle was going to lighten the worry we now possess. The truth of Aria’s leukemia has been the heaviest weight I’ve ever had to carry but I have the strength and the courage for it. So you see, the process of being honest about Aria has paled in comparison to receiving the truth about her fate. We all know that the truth can hurt and I’ve never known greater anguish but what I was spared was the pain that so often accompanies honesty in its manner of presentation. Dr. Trobaugh told us the truth about Aria with the softness of a rose petal and the gentleness of a lamb and the tenderness of a mother. It was an extraordinary experience and it is with that in mind that my journey continues. I hope to learn how to refine my sense of honesty and ability to be truthful. More importantly though, I hope to learn to express and share it with others with greater compassion, reverence and respect. It may be a little easier to take that way. ~j
“Honesty”
I have a friend who has gas. This alone isn’t all that unique except that she is so honest about it. Once when she came over, she had let one rip and at the same time I had picked up the baby. I remarked to the baby in my sing-song baby voice, “S.t.i.n.k.y baby! You stinky little thing!” My friend sheepishly admitted, “ahhhh, no, that would be me!” I was stunned because what I smelled clearly was the collective work confined in a diaper that only a baby can produce. Alas, I was indeed mistaken and the foul odor came from my friend. I was completely horrified to think that I had been in fact calling her a stinky baby! She, however, took the whole incident in stride, which I found beyond impressive. I kept thinking about how I would feel if I had been her and I’m certain I would have been crushed. I know I would have been completely embarrassed and humiliated. My girlfriend, however, didn’t seem to be either. She was apologetic but fully accepting and honest about her ‘gassiness.’ Talk about literally taking the stinkier side of oneself and just going with it! I found this incident a wonderful example of honesty and humility and because of her and others like her I feel committed to walking a straighter line.
I have received several emails over the last 10 weeks remarking about the honesty of my emails and I’ve been thinking about it deeply. You know that I made a promise on January 15, 2008. This promise to be honest was an awakening of sorts because it forced me to admit that I’m not always honest and I want to be. I’m also raising children who I hope will be honest and I must not only teach them this skill but model it as well. This was my opportunity to begin my practice of understanding the nuances of honesty in order to learn how to be a more honest, more humble, and more genuine person.
Ever since January 15, 2008, I’ve been replaying our hospital stay and my reactions and conversations during that time. One of the stinky realizations that I have had to own is that I have a side of me that is a flirtatious brown-noser. In my more immature years, I quite innocently and perhaps even unconsciously flirted my way through life, flaunting my pretty little self, hoping to get my way. I don’t think I was very genuine in those times and certainly didn’t spend any time trying to understand and dissect my behavior in a way that would elevate my confidence. When I was in my early 20’s, however and heading into graduate school, on probation no less, something changed in me. I realized that I was in the big leagues and no amount of cutesy flirting was going to get me the grades I needed to stay and the only way I was going to be taken seriously was if I began to take myself seriously and have an honest focus on what needed to get done. It was here that my journey toward truth and honesty really began.
Old habits die hard though and when I think about that time in the hospital with Aria, I felt forced to stare my sincerity in the face. I remember meeting a nurse when we were first on the inpatient unit. She was so sweet and gentle with us and I wanted to be equally as nice and considerate but I kept wondering why do I feel the need to be nice and gentle? All I wanted to do was lie down on the floor in a massive heap and cry. Why was I trying to be-friend this nurse? Did I really think we were going to be friends? What did I want from her? Was I trying to manipulate something here in my favor? These were some the questions rambling through my mind. I didn’t know it then, but what I was doing was bargaining. We were moved to a different room a little later on that was much more spacious and I wondered why they were being so nice to us. The completely shattered and insecure part of me was suspicious thinking that we must be in really bad shape and they feel sorry for us. I know it sounds crazy but I really did have those thoughts. I actually came out and asked the night nurse if we were in this special room because they knew we were going to be in for a really long haul and they wanted us to be as comfortable as possible. I was trying to be strong and brave when I asked her but I felt like such a child with a quivering lip trying to hold back tears. Mary, our nurse, paused and looked at me so tenderly. She held both my arms and said with such warm reassurance, “You are in this suite only because it’s available. There may be another family that comes in that will need it more than you and we’ll have to boot you out!” That humorous ending felt like eating what I thought was going to be a bitter pill but was instead a Pez. I trusted her and took my first deep breath.
The following days in the hospital were on one hand very clear and on the other hand a complete blur. I remember clearly wanting to know everything that was happening and why. I was constantly asking questions but trying not to hover. I also didn’t want to be suspicious and I wanted to trust that the medical team caring for Aria knew exactly what to do but I questioned them nonetheless and I made certain I understood every single detail of her care. I didn’t always understand in the moment, however, and I allowed myself plenty of time to process information and formulate questions as they came and ask them whenever I could. I was constantly aware of my tone and my mood because I never wanted to come across as abrasive or make anyone feel defensive. I just didn’t have the reserves for that kind of energy or interaction. I wanted everyone to get along and I desperately wanted everything to be ok. There was only one nurse with whom I felt little connection and I avoided her from then on. It was so odd. I was so aware of wanting to be perceived as a good person and I kept asking myself “why?” The truth of the matter was simple. In the back of my mind I couldn’t escape the manipulative irrational thought that if I was positive then so would be Aria’s outcome. Once again I had 2 voices in my head going back and forth. There was the quiet and subdued rational mind and the crazy head that was trying to function upside down.
“That nurse was so sweet! She spent so much time answering my questions.” rational mind would say.
Crazy head responded, “You should do something for her! yeah, do something! Bake some zucchini bread for the nurses!”
“I’m sorry, did you say zucchini bread?” rational mind sputtered while images of a bake sale fluttered by.
“Yeah, if you do nice things, they’ll like you more and maybe Aria will get extra attention!” crazy head said firmly.
Rational mind was suspicious and cautiously said, “Extra attention? What are you talking about? Does it matter if they like me or not?”
“What, are you nuts? Of course it matters! They have to like you...” crazy head retorted
Rational mind interrupted, “They have to like me? What if they don’t like me? Oh, my God! Right. They have to like me. Wait! Wait! Wait a minute here! How did this become about me?”
“You’re the mother! You can make things happen! If they like you, everything will be ok” said crazy head fading.
Rational mind spoke deliberately, “You can not change what is happening. You are not in control! They like you or they don’t. You are not what matters here! Focus. You can not change what’s happening by being nice, flirtatious and sweet. You can not brown nose your way toward a different result. For God’s sake, just be real!”
Be real..be real..be real...I began to chant which suddenly turned into breathe...breathe...breathe...
.
There it is. I was trying to bargain my nice-nice for some kind of magical outcome for Aria. All those years of silly sunny manipulation slapped me in the face. I went to the bathroom mirror and I told crazy head “Turn yourself around and right your world for this new normal.” I told rational mind “Be yourself. Be sincere. Be honest. Be all those things you want from others and above all things be kind.” I blew myself a kiss and turned out the light.
This was a pivotal moment for me because I really wanted to explore being certain that all of my interactions were sincere and without expectations. I kept thinking about Carol King’s song “Beautiful”.
You got to get up every morning
with a smile on your face
and show the world
all the love in your heart.
And people gonna treat you better
you’re gonna find
yes you will
that you’re beautiful
as you feel.
I have enjoyed that song since I was in elementary school. I believe every line to be true. I became focused on making sure that all of my emotions were kept about me and no one else. If I was feeling insecure about not understanding a procedure, rather than begin a conversation that was defensive and suspicious, I always prefaced my dialogue with phrases like, “Please be patient with me...or I’m feeling really insecure right now...or I could use a little reassurance about.... or I’m sure someone explained this to me already but I’m still confused.. and so forth.” It made me feel more relaxed to do this and strangely, it gave me a sense of control. I couldn’t control what was happening to Aria and I was devastated by that. But I could control my behavior in all of my interactions and I wanted those exchanges to be beautiful for purely selfish reasons. I was suddenly surrounded by completely ugly, foreign, scary, circumstances and I needed beauty, kindness, gentleness and consideration. I felt strongly that in order to get that from people, I would have to be that myself. There’s that saying, “treat others as you would like to be treated.” The sing-songiness of that sentiment makes me want to keel over but I can’t ignore its inherent truth. What I’ve had to be certain of, however, is that my positive cheerfulness is without expectations. I don’t want to be manipulative. I just want to be real.
In attempting to be as transparent and honest as possible I’ve drawn a very important conclusion. It doesn’t take much strength or courage to be honest but it requires tremendous strength and courage to take it. When we received Aria’s diagnosis, the world as I knew it became warped, convoluted and unfamiliar. No amount of bubbly goodness was going to have any influence on the horrific blow we had received. No silky bows or glittery sprinkle was going to lighten the worry we now possess. The truth of Aria’s leukemia has been the heaviest weight I’ve ever had to carry but I have the strength and the courage for it. So you see, the process of being honest about Aria has paled in comparison to receiving the truth about her fate. We all know that the truth can hurt and I’ve never known greater anguish but what I was spared was the pain that so often accompanies honesty in its manner of presentation. Dr. Trobaugh told us the truth about Aria with the softness of a rose petal and the gentleness of a lamb and the tenderness of a mother. It was an extraordinary experience and it is with that in mind that my journey continues. I hope to learn how to refine my sense of honesty and ability to be truthful. More importantly though, I hope to learn to express and share it with others with greater compassion, reverence and respect. It may be a little easier to take that way. ~j
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