I am the Captain of My Soul

Once you are told that there is nothing else can be done, what do you do? Do you keep searching for a place that might tell you something differently or do you just go with it and live your life for as long as life will allow? I am in that rut right now. I have been to some of the best places in the world and they all say the same thing, "there is no cure, and you are terminal." Quite honestly, I think I am just getting tired of going to the doctor all of the time or being placed in the hospital because I am so "rare". I am like that animal at the zoo that nobody ever gets to see unless they live in Africa....everyone wants to take a peak at the girl with the extremely rare diseases. And, it gets pretty tiresome.

Many of you have offered to help in any way you can. I am still trying to figure out the practicalities of the situation. I have to admit for someone who is usually so good at dealing with practicalities, I am feeling rather disorganized and overwhelmed right now, so I haven't figured out how to deal with the day to day needs of taking care of myself, my husband, and my children. My needs will in large part depend on how I feel from day to day. Feeding my children and my husband seems to be at the top of that list, but for the meantime, mom and Bill are helping out in that department. I will be moving back home on Friday and discussing Home Health/Hospice care with my doctor this week. I know they will help a great deal while my oldest and my husband are working. For those of you who know me well, you know I am kind of crazy about cooking and feeding my children in an effort to spend more time with them and instill good eating habits all while trying to rid them of their pickiness. I am afraid that I will need to let go of some of that craziness right now. I intend to start a planner on caringbridge.org which will allow me to publicize my needs (whether it be meals, childcare, running errands, taking me to various doctor's appointments, or whatever else). And those of you who are still interested in helping can most definitely sign up- no pressure whatsoever! So, I will attempt to get that going this week. 

"Invictus" by William Earnest Henley is one of my favorite poems. The first time I heard it was in Junior High when a classmate recited it in English class. 


Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Even at 13, I felt like I understood more than a little something about "the fell clutch of circumstance" and the "bludgeonings of chance". I loved the image of my head being "bloody but bowed". I loved how the poem conveyed a sense of awesome strength, fortitude, fearlessness, and courage in the face of life's brutalities and it's ability to engender in through its imagery and cadence, even at such a young age, all of those virtues. But what I loved and still love most about the poem and what I couldn't really articulate and grasp at 13 was the sense of power it gave me- "I am the master of my fate, I am the captain of my soul." 22 years and a lot of living later, I can say unequivocally that I get it.

This poem is the closest that I have come to reading or studying anything in an effort to find solace. I've turned to "Invictus" more than a few times since my diagnosis. I thought about it as my doctor sat in my room telling me nothing more could be done. I think about it when I think about what I will leave behind. I think about it when I am afraid in the middle of the night. I have even googled the nineteenth century poet, William Earnest Henley, for surely someone who could write so beautifully about withstanding hardships must have had more than his fair share. According to Wikipedia (I know, a terrible academic reference), the man was no stranger to physical suffering, part of his leg had been amputated in adolescence due to tubercular disease and the other leg barely saved through radical surgery. Despite his physical ailments, he went on to live a relatively long and fruitful life.

Although Henley died a lifetime before I was born, I suspect that our spirits are united in our understanding of physical limitations, that the same questions tortured him and me in our adolescence. He must have asked himself why he had to live most of his life as a cripple while so many of his contemporaries did not? I asked at least a thousand times why I was born always sick while society's degenerates who add no value to the world have no physical disabilities whatsoever. And yet, both of us, he especially as someone who witnessed much more disease and mortality in his era, no doubt share a gratitude, a recognition that things could have been worse. Even so, gratitude can never silence the persistent, "why" questions that arise from every tragic event, whether past or present, whether far reaching or personal. Physical and mental disabilities, disease, child abuse, plane crashes, car accidents, shootings, terrorist attacks and all other circumstances and events that result in senseless suffering — they all give rise to the agonizing and universal questions of why. Why did I develop lung cancer in my 30's, pulmonary fibrosis, didn't drink very often, quit smoking, and there is no real cancer in my family? Why are innocent babies born with horrible diseases every day, diseases that will cruelly and unfairly deprive them of the ability to experience even a modicum of what life has to offer? Why? Why? Why? Why!

The need to answer the “Why” question, to find reasons is basic to anyone’s attempt to cope with suffering, as if an answer will make the suffering less painful, as if a reason will make sense out of an otherwise senseless occurrence. And yet, even when one can point an accusatory finger at that mutant gene or that renegade bacteria or that pilot error, the fundamental “Why” question still remains unanswered. I know that mechanical failures in the human body and in man-made vehicles occur for any number of seemingly simple or complex reasons that may be attributable to neglect, abuse or just random happenstance, resulting from a series of unfortunate events. But why did those things happen in the first instance? It’s like a four year old’s unending why questions that ultimately cannot be answered to anyone’s satisfaction. “Why can’t I have a doughnut?” “Why is sugar bad for me?” “But why does sugar do that?” “Why does sugar exist if it’s bad for us?” At some point all”Why” questions are unanswerable. At some point, all of them, no matter their subject matter, when reduced to their lowest common denominator are questions about our very metaphysical existence that go beyond our limited understanding. At a basic level, the questions are about why we breathe, why the sun shines, why we as human beings cry and laugh. How can we possibly know the answers to such questions?

Because I never could find an answer to those second set of “Why” questions to explain my disability, I started asking what I call universal “Why” questions, as in “Why did God do this to me?” Or, phrased differently, “What is God’s purpose?” Or “What is the universe trying to tell me?” I don’t believe that bad things happen as punishment for bad behavior. I just don’t subscribe to that kind of vengeful and unforgiving theory of God and the universe. Instead, I was more inclined to believe in the notion of a greater purpose. When tragedy happens people in their well meaning efforts to console say trite things like “Everything happens for a reason.” I’ve often been told this like it’s some profound sentiment that I hadn’t considered in my many hours of agonized questioning. I can’t be too critical though since I’ve told myself the same trite thing hundreds of times. I’ve even told myself that I was meant to be born into this body with all of its physical limitations, that God had a plan for me, that my suffering has made me wise beyond my years, that I have a greater grasp of the human experience than most my age, that I’m lucky even, that as a result of the universe’s tendency to restore balance, I am fortunate in so many ways that others are not. As arrogant as it may sound, it was as if being somehow chosen specially by God, spiritually superior in my wisdom and unusually fortunate despite my one great misfortune could somehow compensate me for the great injustices of my life and could make seeing the world so imperfectly somehow acceptable. Arrogant or not, these reasons were the answers I came up with in my adolescence for my universal “Why” questions.

I am no longer an adolescent and I no longer believe in these answers, at least not with the conviction I once had. I understand now that I came up with these reasons to make myself feel better, not because I had some kind of religious epiphany or any other actual insight into the inner workings of the universe. My explanations made me feel safe and more importantly made me feel like my pain was not pointless. To believe that there is a preordained plan imposed order in a world where there was so little order. A plan, and one that is put in place by God no less, reduced the fear of all the potentially bad things that could happen, and made me believe that my suffering served some unknown greater purpose designated by God. Thinking this way made me feel less alone in this vast universe where infinite possibilities lay with so much potential tragedy at every turn. Without a greater purpose, I felt like I would otherwise be floundering blindly in the dark, acting solely on instinct and good intentions. Making myself feel better in all these ways by believing in a greater purpose and a reason for all suffering was and is simply not a good enough basis upon which to construct an entire philosophical approach to life’s challenges. It simply isn’t.

So what am I left with now if I am no longer convinced by the answers to my universal “Why” questions? Where does that leave me in terms of having a coping mechanism for all the bad things that have happened and will happen to me? How do I come to terms with the fact that I am dying and out of options at age 35? How do I make peace with God and the universe?

Again, what is the universe trying to tell me? What is the karmic reason for all this. In the darkest hours of my diagnosis when the pain was fresh and the fear suffocating, I found comfort in believing that God once again had a plan for me, but that comfort was short-lived because at some point I had stopped being truly persuaded by the answers to my “Why” questions that I formulated so many years ago. I’d stopped having faith in the belief that everything happens for a reason and that God has a greater purpose for me.

Of course, so much remained out of my control — after all I couldn’t make Kevin fall in love with me — but I did everything in my power to realize my dreams; I studied hard; I put myself out there and risked failure and heartbreak, and most importantly, I didn’t allow myself to believe that I was a victim of circumstance. Lots of terrible things can happen to us and we will never really know why they happened, either in the direct causal sense or in the universal sense. But what we do know is that we can control how we respond to the challenges we face. I have a choice as to how to live with cancer and IPF. I can be angry and bitter. Or I can accept what has happened with grace and dignity and search for the goodness that I know from experience can come out of tragedy. To do so is to demonstrate the unconquerability of my soul and the indefatigable nature of my spirit. Even though I inhabit a world where I have so little power, I have always had and will always have power over my spirit, over the way I choose to respond to life’s challenges. Maybe I was right in that I am wiser than most because of the lessons I learned through overcoming my childhood disability. Maybe it’s true that I am indeed lucky. Maybe it’s true that I have been blessed with living more of the human experience than others my age. But I assure you, none of that happened because I sat helplessly and idly by and let God or the universe work his or its revelatory magic on me. It happened because I willed myself to find that wisdom, good fortune and the blessings from every bad thing that has ever happened to me, from ever crying fit, from every moment of terror, confusion and heartache. And so it is and so it shall be too with cancer and IPF.

I choose to believe ultimately in me and not some trite vague idea about everything happening for a reason. It may very well be that God has a plan for each of us, but I cannot know this with any certainty. The only certainty I have lies within me and my sense of self, in my desire for self-determination and to control my destiny amidst all the forces beyond my control. I thank whatever gods may be for my unconquerable soul. I have not cried nor winced aloud nor will I. My head is bloody but unbowed. The menace of the years finds and shall find me unafraid. I am the master of my fate; I am the captain of my soul. These are the words I choose to live by.

Love you all and truly mean it....and God loves you too,

Shanna xoxoxo

LUNGevity National Hope Summit: I'm participating in an event to raise money to fight lung cancer—and I need your help!
I'm planning to attend LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. If I can raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations.
Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.
Please join me in my efforts to stop lung cancer—the leading cancer killer—now!
http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15728
Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna

Official blog Facebook page: https://www.facebook.com/shannabananahealthandfitness

My Go Fund Me Page (any and all donations will help with my medical funds)gofundme.com/hope4shanna2016