My 84 year old neighbor Frances has taught me a lot about the world, like the difference between lima beans and butter beans and that you need to wrap a folded paper towel around a can of Coca Cola to have with your pack of Nabs. One of the more important things I have learned from her is the difference between “over yonder” and “way out yonder.” Over yonder is someone up the street from us, you can walk over yonder, but way out yonder is like someone in Missouri. I just love Frances.
So, waaaay way out yonder, on the other side of cancer there is a land, a magical island if you will. It’s an exclusive place, kinda like the Admirals Club at the airport, but you don’t have a key to get in, just have to have almost died is all. On the shoreline of the island, you and other cancer survivors who were also abruptly dropped there, cluster together and collectively search longingly over the vast ocean which separates you from the rest of the world. Those early weeks on the island are uncertain and like on LOST, there is disagreement about just how permanent this place in life is. Some are not ready to build shelters and dig in, knowing for sure that rescue will come or that it is a bad dream, and some quickly settle into a new routine and begin the day to day tasks of living with the new reality. Despite the raw and new beauty of the place, you feel scared of what is out there, and unsure of how to live on the island. More often than not you find yourself squinting across the waters, longing for home. As your eyes rest on the horizon, you can kinda sorta make out this vague ghost and shell of who you used to be, and you weep, longing for the familiarity and predictability the terrain that is life precancer.
Some of us really hate the island, considering it a temporary stop in a life journey that was rudely interrupted. Some start building a boat on day one, insisting we will get back one day. Some actually make a break for it right away, frantically attempting to swim back across trying to get back to where they used to be. After five years, what I have found is that the few that have made it back have lived to tell the tale of how things just weren’t the same when they got there. Things that used to be fun aren’t fun, the dynamics of relationships have changed, things that were important now seem trivial, and the swim back was exhausting.
You are forever changed, trauma changes everything.
See the reality is that so much more than physical space separates your old life on the other side; emotional space separates you as well. Sure, you could go back and plug back into the pre-cancer life, dress in the same clothes and live the same life, but walking like a duck and talking like a duck doesn’t make you a duck. Psychologically, you can’t swim back over emotional space; the water is truly under the bridge as they say, and you simply can’t un-know what you now know. You feel differently from everyone off the island, including the old you, because you have a secret. Only you and the other islanders know the secret. Like one of those optical illusions where once you “see” the hidden picture you can’t not see it and no matter how you try to explain it or point it out, only you and the other islanders can see it.
What I have found after five years is that you eventually make your peace with this new land, with the new terrain of your life after cancer; you settle in and begin to enjoy the view from here. You begin to explore this new and fresh life maybe fearfully, perhaps bravely, maybe by default. And darlin’ even if you are very angry at finding your butt plunked down on the island and it doesn’t feel like paradise to you, it will. It will become familiar and peaceful and you will learn to enjoy this new island life in a way you never felt possible. You will reach a day when you wake up, and look around and say “Boy I am a damn lucky girl.” You will reach a day when the island isn’t scary but familiar. Life moves on, and a day comes when the place life dropped you is seen as the gift that it is. You will get there, I promise….probably kicking and screaming like I did, but you will get there.
But getting to lucky hmmm…it’s the getting there that is the struggle. I wanted a map of the island and was pretty darn ticked off that one had not been dropped off with me. I didn’t know how big the island was, or all that it held. How dare I get dropped here with no supplies and no instructions? I was afraid of everything, afraid of swimming despite the blue blue water (I knew what was out there circling in it’s depths), afraid that what I might eat could make me sick, afraid that if I didn’t live the right way, I would waste away. Was it dangerous; would I survive in this new land? If you can’t go back, how do you go forward? How do you live? Do you spend every day surfing with your toes in the sand, or live a productive life here on this other side, here in the absolute Technicolor that is life after cancer, amidst the crystal clarity and gentle butterflies, the clear water and vibrantly green trees.
I will tell you how I got there. Grab yourself a Coca Cola, a paper towel and a pack of Nabs. It’s quite a tale. It is how I got to lucky.
Lance Armstrong says in his book that he once got an email early in his diagnosis that said, “You don’t know it yet but we’re the lucky ones.” I think his initial knee jerk was the same as mine, “WTF? Lucky? Are you crazy?” Of course after all was said and done I do get it, but at the time I read it I was calling bullshit on the “gift theory” of cancer. I hadn’t been on the island long enough to get it.
Admittedly, my journey to “lucky” was a rocky and full of extremes. This newfound laser clarity about life (which it seemed was infused into me along with the chemo,) was overwhelming at first. I felt like they say blind people who are given their sight again feel; disoriented and dizzy, the brightness and vibrant colors are overwhelming and nothing fits together in a way that makes sense in relation to your old way of “knowing” the world. Configuring how this second chance at life translated into normal daily living from here on out was uncomfortable and tenuous and unfamiliar. While I knew many of the same routines and rhythms of life would have to occur, they were in need of tweaking in this new undefined terrain. In this place where cancer circled. In this place that was so new and wild and precious.
The path is even more uncertain in the early years on the island; that time when you are categorically in remission, a term to me that meant essentially, don’t go picking any green bananas as you hunt and gather there girlfriend.
How do you bridge this span of time into lucky? How do you live this new life? What are the rules? How far and wide can you go on the island and be safe? What do you do with this second chance that was found after you, a caterpillar who thought the end was here instead with guarded glee, emerged a butterfly?
For me, simply and first there was gratitude. How the elemental building blocks of not having energy to climb a flight of stairs without stopping to rest halfway add up to the later realization of what a gift it is to climb lighthouses with the kiddos. In a nutshell, it is in having no hair that makes you take the greys with grace. A profoundly simply lesson yet, like a drop of water splashing on a rock for thousands of years, that repeated daily new experience of gratitude carves a new groove in us and creates an undercurrent wending its way into the definition of “lucky”. That simple yet profound new appreciation allows for a life lived in Technicolor, where small occurrences become miraculous gifts with color and depth that is astounding. But in the beginning you can’t see all that, the island just looks forboding.
After that initial appreciation settled in, the direction for my life after cancer became more ambiguous. I am a girl who needs definition and tight rules of play to feel okay, just as little kids need a floor and ceiling and tight walls around them to know where they stand and to feel comfort. I wanted a playbook for remission, where on page 26 section B it clearly defined how frivolous I could become and on page 39 section C, something concrete and clear told me how big I could expand, how much I could let go of, what I did not have to wait for anymore. I felt like water out of the glass; it was too loose.
This fluid state of moving from the precariousness of remission to feeling lucky for cancer was uncomfortable and dystonic. While I fully understood that life after that massive ordeal would make one think a little differently, I struggled with the conclusion that surviving cancer demanded a more productive, more passionately used life; a life which differed hugely from my prior life of carefulness and waiting.
In her so very sweet poem, Mary Oliver so perfectly begs of the new butterfly, “Tell me, what it is you plan to do with your one wild and precious life?” This very question encapsulated the enormity of the responsibility I felt to do it right with this do-over. I didn’t know how big a house to build, how large a life to lead. With the uncertainty of how much time I had left, wild and reckless abandon seemed perhaps, dare I say, prudent? If your life has been redefined, then where are the lines of your life, how do you find the edges and explore the circumference? How wide does your life become? How much higher does it go? How do you fill the days given that all of your days are gifts now? How reckless is your abandon? How do you live the length of your life when you don’t know how long that life will be? If I was lucky, just how long would the luck hold out?
And so, in that no man’s island limbo dance of remission, I began my Years of Living Large as I called them. A manic bucket list ensued, get the kids to Disney, buy a convertible, see places I needed to see…create memories. It wasn’t manic spending as much as it was manic doing. Accounting for every last minute and insisting on squeezing two out of each one. Waiting one day at the microwave, the timer set for two minutes, I found myself in self deprecation thinking, “There go two minutes I will never get back, and what the hell did you do but stand here?” The same went for weekends, lying in bed watching a movie was not allowed, I was so very angry at myself for wasting away a day. It seemed that those past sick days of nothingness, of just being too sick to move made the reality of ever again spending another day in stillness a downright crime. Every minute had to be memory making packed.
Stillness was for people who had never had cancer. I couldn’t just be, I had to do. Islanders must get busy living or get busy dying. I chose the former, in the extreme.
I once explained to a friend, “You will have to excuse me. I live life now a little larger and wider than other people.” It was as if I needed to explain my larger than life approach to things, lest it appear reckless or irresponsible, and my drive and intense passion extreme. I had to explain that yes in fact, I did have a right to live big because I had cancer. I was not only justified; I had permission. He responded calmly (in way to not challenge me), that if I needed to squeeze 25 hours in to 24 that is what I must do. It was quite permission giving as I recall.
Indeed I did come out of cancer with a deep and insistent need to squeeze it all in; I had no idea when the boogyman could reappear under my bed and in an instant take it all away again, and I was quite certain that some nights, I saw him hiding behind the door. For with cancer you plunge instantly from life to sickness, from vigor to chemo, from living to dying and from arrogance to fear all in the flash of a few spoken words. At every repeat MRI and bone scan you walk into the hospital with your life but are fully aware that by the time you exit that very door (the one with a boogeyman behind it BTW) in a few hours, it could all be gone again. The buzzer had silently gone off while you were standing at the microwave making you some Hot Pockets and too bad punkin, time’s up.
Of course lots of “doing” is expensive. This little red hen of a saver suddenly wondered about the fruitlessness of saving for a retirement that may never be, of saving for college that quite frankly their dad could cover if I was gone. I dreamed of calling Suze Orman and asking, “How much more am I allowed to spend? Am I allowed to skip the IRA for a couple of years so I can take the kids to Disney? Can I work just part time so I can suck up every minute with my kids? Can I buy a convertible since I have no hair to blow around when I drive it? Can I buy a 400 dollar pair of lizard skin boots if I might be buried in them in two years?” The sweet spot of luxury spending had moved; but the question remained, to where? How much was too much? Exactly how much more can I spend if I don’t know if I will be here much longer, if the gamble was that I could be here two years or forty? Did I really earn these frivolous extras in life just by completing 14 months of chemo?
Relationships too became the same life of extremes. Having gone through cancer alone, I charged immediately with my inch long hair out into the world again hoping to find someone. It was such a self defeating thing to do, not only did I not look and feel like me, I didn’t even really know who I was yet. I was looking for someone to hand this bag of shit to and say, “Here, please hold this for me while I die.” I was searching for someone to die beside, not live beside. I was scared of being on the island alone. Later the quest moved a full pendulum swing to the other side. I decided I couldn’t date anyone because I did not want to bring death and prospect of a woman with a target on her back to anyone. To bring that terror, my terror into a relationship. To allow someone to fall for someone they likely would lose. I avoided widowers especially, because well after all, it was unfair for them to have that happen twice. It just plain seemed unfair to give the bag of shit away and bring the boogeyman under some guy’s bed, especially a man with the innocence of life still in them.
With my kids it was about sucking up every minute I could with them. It became okay to put work and dating and really all else on a back burner; to fill them up with me and memories so that when I was gone they would have this bank of experiences to surf off of one at a time, like a bag of peanuts. Enough “me” experiences to last and nourish them the rest of their lives. I felt like they had gone so long with a sick mom that they deserved the score evened. They deserved all of me in the event that someday they had none of me.
I felt like I had been given special permission, a special dispensation to not have to wait one minute longer to do the things I wanted to do. I had the mother of all get out of jail free cards. This mentality caught on and expanded like wildfire. I had a handwritten note, (albeit in the code of radiation tats) from God if not Suze Orman, allowing me a different set of life rules than others. Island rules. I lived large and reckless and with abandon, and as my life grew larger I grew more righteous.Nothing spooked me, for I had the equivalent of an AMEX black card that was dispensed on the last day of chemo that said the sky is the limit no one will check to see if anything you want to do is approved. All because you had cancer. Small stuff became even smaller stuff, and big stuff became smaller. Nothing fazed me except cancer…still circling the island in its quiet sinister manner, no matter how large the edges of my life became.
I was going across one of those rickety bridges that hangs over a chasm, and had decided that the best approach was to run across as fast as I could before it fell apart. I was living life as if a clock was ticking, like that one in Peter Pan that drives Captain Hook mad; that ticking got louder and louder and louder and made me frantic; and the alligator kept waiting, circling….
As is with life, (both pre-cancer on island time) days passed. Each one whispered meaning in my ear, drop by drop. Sometimes I heard the messages, sometimes I didn’t and sometimes I stuck my fingers in my ears and purposely ignored the voice that was trying to calm me and instead stayed up late bidding on Frye boots on Ebay. But the lesson insisted and found its way in, bypassing the circling threat. It was as if the time that I so frantically tried to fill, that time simply ticking by, was what healed me, minute by every two minutes in the microwave.
I came to realize that it was not how big or wide a life I led, but why. I suppose that deep inside, I knew I was running from fear, yet I thought I had become fearless; that the answer to fear was to live a life of fearlessness. But a life lived in extremes, at the very tips of the bell curve is lonely and small and you really don’t feel very lucky, just isolated and exhausted. That is where fearless thrives and finds hosts to feed off of, way out in those extreme Netherlands. Honey, it’s not the island that separates you, it’s the extremes.
I was dying frantically, not living fully. I had defined this limbo of remission as a time to fearlessly go out with a bang rather than a time of being unafraid and calm and living gracefully. Although I was in a cute little convertible speeding around going oodles of fun places nonstop, I was not driving the car…fear was. It was like the old saying, give the devil a ride in your car and soon he will want to drive…Fearless was driving and it did not feel fun anymore. Fearless is not a good traveling companion.
Fearless won’t let you cry without feeling weak, it mocks you and others for doing so. Unafraid lets you cry, it gives you a tissue and says, “There, there” and lets you move on. Fearless says “Do it now silly cause you may not have tomorrow,” and unafraid in a rather grandmotherly way pats your hand and says, “How grand it is to sit here in the backyard with the kids doing nothing. It can wait”. Fearless says “There are cancer sharks circling in the water waiting to eat you,” and unfraid grabs a surfboard and just goes for it.
Fearlessness is a demanding taskmaster, unafraid is a hand holder. Fearless shoves you, hissing, “Now! Do it now!” Unafraid says, “There’s always tomorrow.” Fearless is urgent and frantic, unafraid is settled and still. Fearless demands, unafraid allows. Fearless dominates; unafraid is happy to share the swing. Fearless fuels the tank with anger, unafraid is a glider coasting on a tankful of gratitude.
Fearless shoves you hard from behind, while unafraid warmly pats your back, albeit with a slight resistance when you try to back up. Fearless gnaws at you savagely while unafraid nonchalantly takes a big ole bite of cotton candy, lets it melt in it’s mouth and says, “Yum.”
Fearless is positively reckless, it pulls at you and whispers harshly, “You have stared death in the face; let’s drive over this cliff without seatbelts!” Unafraid is calm and assured, it whispers, “You have been through the worst and survived, now take care and get on with it.”
Fearless is righteous.
Unafraid is lucky.
Becoming unafraid is how you find lucky.
Despite my misguided efforts to fight it with extremes; I lived my way into the balance that is unafraid, and found lucky.
One day I woke up and realized I was more worried about my son getting a role in a play than I was about cancer coming back. One day I listened to John Mayer’s song “In Repair” and it no longer resonated. One night I woke up to pee and went back to sleep without once thinking about cancer. One day I had a pain in my breast and thought, “Oh that’s because I up-ed the weights,” instead of, “It’s back.” One day I took a long run and realized that I was no longer running from recurrence.
One day, just like that, I realized the cadence of my life was different, less frantic, slower; I could breathe better. One day I realized that being extreme and fearless is exhausting and not necessarily a good thing and a slow and easy life was well, slow and easy. One day I realized the safest way to cross the bridge no matter how long it was or how fragile it seemed, was slowly and with care and enjoying the view. I realized that while I could expand the circumference of the island, the cancer still circled just offshore and followed along with me as I ran. But truth was, it was there if I ran or whether I walked or strolled. I had to just get used to it, and live beside it. Fear of it made the walk anxiety filled, unafraid made room for acceptance of it being there and allowed me to live and collect shells at a thoughtful pace.
Fearless had left the building.
I experienced the full, sated calm that accompanies the arrival at the notion that there is this profound difference between being fearless and unafraid. I had indeed lived myself into the answers, not died my way into them. Extreme turned to balance. Hypervigilence turned into vigilence. Frantic turned into calm. I had walked all the way around the island to find the answer right where I began; that the way to live with the fear and uncertainty of remission is not an extreme fearless life, but an unafraid life. I can live just one or two standard deviations to the right or left and that is a good place to be; you can still hold hands with those in the norm; the Netherlands are cold and lonely anyway.
Later, I asked the same friend if he was unafraid. He said, “Not unafraid, but have learned to overcome most of my fears.” Maybe that simple approach, the difference between overcoming fear and having to live beside fear, is what separates us lucky islanders from others. Maybe that is the lesson learned living (not dying) on this other side of cancer. We still have fears like everyone else, it is in what we do with them, how we deal with them that makes us different and lucky. Our calm approach to living beside our fear is born when we realize that what doesn’t kill us does indeed make us stronger. While we still must work actively at times, (not often) to push fear out of driver seat, we essentially overcome our fears by being forced to coexist daily with them. By living beside fear peacefully rather than overcoming fear actively, our fear looks different just as our life now does. When cancer is beside us, we quite simply no longer have to stare down a whole lot of other fears to overcome them, because frankly not much spooks us anymore, even to be honest, cancer. Small stuff is small stuff and big stuff is well maybe just medium stuff. We are not fearful, but unafraid. When fear is released, lucky can come home to roost.
We don’t have to be fearless in our new and wild and brilliant life, just unafraid. That is when we begin to feel the joy of lucky, the blessing finds us, and good fortune smiles upon us. We turn away from the labor of our anxious watch of the circling threat and see this beautiful new landscape that is our life. Unafraid allows us to do that, to turn away. We realize that we can indeed spend time with our toes in the sand, yet equally we must hunt for fruit to nourish us; yet, on the island, the fruit is much sweeter and the sand is infinitely softer than we have ever known.
As I sit, sweet fruit in hand, face tilted to the sun, and toes in the sand, I muse that Ms. Oliver begs more personally of this fresh butterfly, “Now tell me, lucky one, what it is you plan to do with your one wild and precious life?”
“Be unafraid,” I breathe evenly in the stillness, “and simply fly…I have a note from God that says it’s okay.”