Saturday, December 11, 2010

Thoughts on my new sport


I was interviewed today by someone writing a piece about the experiences with a dragon boat team. I am so very new to the sport. I have not yet been a part of my team for six months. I jumped in right at the end of the season and competed in the last race before I knew what all of the paddling terms meant. It was a strange thing for me to be interviewed. Perhaps because I was tired.  Perhaps because I was uncertain if I was to talk about cancer or my experience with the team consisting of cancer survivors. 

It is not my comfort zone to tell the story verbally.  I prefer to write. I found myself distracted and wondering on countless tangents, perhaps in an effort to protect what is really hurting underneath. I want to be open and share what this sport has meant to me, but I suppose I am still figuring that out and so, my soliloquy unconsciously wanders into the history of my cancer story. For me, that part of my life is still very raw and new.  I have not yet adopted the language of "cancer survivor" with a "survived since" date.  I am still trying to figure out who I am now.  I didn't think cancer could change me so much, but it has.  So much of my life has been cut and mixed like the water that the boat moves through.  I am still in awe of the wake trailing behind.

I suppose of late, questions of cancer is what I am used to answering. Mostly the questions  have been superficial as others are curious.  No one has asked me any other topic in the last year. Others perception of my illness has consumed my real identity. The scarf I wore on my head became the sign for my identity: cancer.  I am still feeling the bizarre emptiness of no longer traveling to the hospital on  a regular basis.  I have recently given up my scarves for virgin hair.  I am working to recognize myself in the mirror with my first new short hair style.  My hair is now thin and dark.  My eyebrows have not yet returned, so it is the make up pencil every day.

The topic of interview highlights my story and my disease process.  I'm uncertain I want to go there, but my story is fresh and I don't have much in between point A and point B other than the Big C.  Finishing the major cancer treatments only several months ago, I am still recovering. I am still angry. I am still trying to find my place past the medical traffic that has been a part of my every day life. Only a year and a half ago, a doctor was tearfully telling me words I did not know.  People in small rooms suggested that I  get my affairs in order and to continue the medical torture for the chance it may prolong my existence, while I numbly listened to statistics of my "chances".  Numbers and ink, and a language of medications and treatments unknown to me. I was suddenly at the bottom of the ocean, running out of air.

Only several months ago, I was being driven to the hospital daily, because I was unable to on my own. I now find myself returning to that traffic.  Now my side effects and the damage my body has sustained under "treatment" continue to chase after me.  I have now added a cardiologist to my collection of doctors caring for me.  My chemotherapy lessened my heart function and capacity.  My radiation, being on my left side caused scarring.  Nerve damage is an issue throughout my body, but I am able to hide most of my symptoms, until I burn my hands cooking dinner and don't realize.

For some, cancer is a bus ride.  It was for my father.  Caught early and treated briefly.  At some point, they find their stop and get off. I am like the child that has fallen asleep in the back of the bus, only to wake up feeling lost and uncertain how to get home. Everything looks familiar, but somehow different. Has everything changed around me, or have I changed within? I was asked if I have changed or become a different person. I struggled to answer because my answer is still being defined. For me, it is a complicated answer. Inside, the raw basic make up of who I am is still there. My passion, my strength, my devotion, my desire to live wide and deep remains in place. I'm crying stuck inside these walls of pain and hurt sometimes. I don't need or want anyone to come rescue me. I will climb out myself and feel whole as I choose not to sit and wait trapped behind the tragedy life brings. I do not bury my feelings except around those I am unfamiliar or have not grown to trust. I have been hurt by some I trusted in my journey of healing.  Some that I believed were helping me were using my vulnerability for their own gain. I can see the world again now. I feel empowered to do things on my own again. I struggle to accept help, but I know I must and continue to learn the balance of dependence and independence. Being in the dragon boat, a similar lesson plays out.  As I train, I focus on my physical strength and learn the form of the stroke.  At the same time, I must learn to watch the others and pace myself with them.  Every member of a dragon boat team can be in a different place of strength and skill, but in working together and remaining in sync, the boat moves as well as the combined machine allows.

Perhaps my life has indeed changed; but then, my life has been a series of changes seamed together. I have never lived life like a toy train going around to find the same place again and again. Illness came along out of the blue one day. As if I got on a bus one day.  You see, I never ride the bus. I always drive my own car. I was a fish out of water. How much bus fare do I pay? Do I need a ticket or do I pay with cash? Will the driver tell me when to get off? Is there a map? How do I know when I have arrived at my stop? I feel powerless and sit down by myself somewhere in the back. I look forward and everyone else riding seems comfortable. They know where they are going. They know when they need to get off as they put away their book and ready themselves for a quick exit off the bus. I am lost but determined to watch until I figure out how to find my way home.

The interview seems to be at an end.  Pain and anger resurface that I was unaware. I am asked about finding an emotion while being in my first race. Again, I hear myself say anger, but I feel more than I can say. Feelings feeding my desire to be fit and paddle harder to the race's end. I plunge my paddle with passion but without skill. My feelings seem to contradict. As I am pushed beyond what I would do on my own, I feel strong and alive. For the first time in my life I feel that competitive spirit within. Or perhaps anger turned to passion. I will not pull my paddle out and rest. I refuse to give up.  My body wants to quit and I wonder if I will ever have the endurance the rest of my team shows.  I do not know what it is like to be a part of a team yet.  Though I enjoy playing outdoors, I've never competed or belonged to a team.  Junior high volleyball once, but I spent my childhood moving several times which kept me from really continuing with anything.   

On the water I feel alive and free. I feel separated from the responsibility of being what others expect. Freedom from the illness others have now defined me. Free from others trying to control my will to fight, wanting me to give up and rest.

This summer I joined a dragon boat team. It is a Breast Cancer Survivor team. Deep down there is anger that will heal. I welcome the acceptance of others who have journeyed this disease without the need of constant commiserating. I do not believe we are all the same. We are all as different as we were before we were stricken with the thing that brought us together. Each journey its own journey. Some believe we all feel and experience the same thing but I have seen enough to know it is an illusion. For some, it is easier to accept that way wrapped in pink bows. Some find it all easier to cope as they compartmentalize logic and reason denying raw emotions. Yet, we each have our own path. Our disease may have the same name, but our ailments find their own path also as we cope in our own very different ways. Underneath the pink bows, there is pain and darkness. For some those dark memories are in the distant past covered by seasons of debris. The truth is, for all of us, there is an unknown finish line. No one really knows during the race how one will place, but the intention is to win.  I've heard it said, in the boat, no one paddles to place second.  I suppose that's true of any sport or competition.  I suppose that's true when we battle cancer too.

When I'm in the dragon boat, I am simply an athlete. I work hard to put out while my muscles scream. I can be angry without knowing it and take it out on the water. When I'm done, the water is cut and I am satisfied. My mind is at peace and my body is spent. I get behind the wheel for my long drive home, sweaty and tired. My body was pushed beyond what others have been trying to keep me from doing. No one is trying to stop me or force me to take things easy. I am free from the perception of others that I am weak. A victim. I feel a high and grin to my music blasting through the door speakers. The ride home is long and I am ready to return for more.

I want to be strong and catch up with everyone who knows this experience. I don't want to be the newbie but I have much to learn.  First day home after an early practice, my mirror is my husband's face. Seeing the confirmation of my grin it is set. The team is named for the ailment I'd rather forget, but I am hooked. Not what I'd expected.  I have taken my family and friends by surprise by becoming an athlete. I've been a soccer mom. A devoted wife. A faithful daughter. A committed sister. A dependable friend. A hard working career woman. Illness came along and made me take pause. Winter set in and the world became black and white. The color was gone. When I show up for training in the cold morning fog, I see the color emerge as I paddle and my muscles begin to ache. My cold discomfort quickly turns to sweat.  The cold and fog slowly lift. As my mind focuses on the commands and my body strives to stay in stroke, a part of my mind wanders as I see the heron take off in front of the boat. I enjoy the beauty of the day revealed to me. I would have missed this if I chose to sit behind the wall of pain. The early morning is not usually my favorite time, yet I smile as I watch the sun rise on my long drive to the river. I am tired before training begins, but then a dew covered spider web on the bow of the boat makes everyone take pause. It is then I am wishing for my camera instead of my paddle.  We pull away from the dock unable to see through the fog.  Soon we see an amazing silhouette against the dark water as the sun finds its place on the horizon. The work begins and quickly we all forget the chill.

Out on the water I do not feel broken.  My body is healing. This sport consumes me as it strengthens my body and I leave behind those that doubted my ability to live. I know those I paddle with have journeyed also in their own ways.  There's something more that defines me than the scars that people see. I live beyond what other's see. There is something more. It is an undefinable strength that has taken me this far. That something that pushes me past the finish line.  After my first race, I did not realize until others stopped, that we had continued to paddle past the finish line.  How is it that we are ready to keep paddling past the finish line? When others are ready to quit or feel relief?  I get it now. Yet, I find it difficult to explain. Reach! Full in! Finish! New words to me. Focus on now and get it done!

I think back.  It's race day and the finish line is in the back of the boat. Pain dissipates. Nerves are gone. Jitters are forgotten. Crowd cheering is inaudible, invisible. Boats nearby that are temporary enemies seem out of sight. Buoys have sunk into the horizon. I see nothing but my teammates arms in the air. Stay in stroke. Follow! Push! Breathe! I growl as I find more than I have from nowhere to stroke again. I know not where the finish line exists. I do not keep track of what is behind me because it would tell me how far I have yet to go. I never counted my sessions in chemotherapy.  I never wanted to feel how far away the finish line was to reach. When I ride my bike up an impossible hill, I look down at the pavement putting the uphill horizon out of view under the brim of my hat. I keep peddling knowing eventually I will reach the top. I know there will be an end, so I worry not about how many more I must endure or push out! It's getting there that matters. I use that in my mind to keep paddling. Pretending to count an unknown total. Five more strokes. Then five more. Five more strokes keeps me going. Adding the total distance hinders me. My sense of time betrays me and I exist in the moment over and over. I can't hear what's around me and so I focus on the paddler in front of me for the moment. I am still learning and so I do my best to mimic what I see before me. My muscles want to give out and collapse. I argue with myself, No!! Keep going. The more my body wants to give in, the more angry I become and give more. I remember the advice given earlier by a veteran, if you get tired, don't give up or pull out, just breathe through it and take a couple easier strokes, but stay in stroke no matter what! So my body shuts down as I'm silently yelling at myself inside, and I remember those words and follow what I don't quite understand until I do it. I close my eyes, despite the need to concentrate that I'm in a race. It's real. Why am I closing my eyes? I close my eyes and take two strokes easy. I breathe. I look back out into my own boat and I'm still in sync. I find the anger down within the pit of my stomach and push harder. I don't give in to my rookie weakness. I dig into the water harder. I finish and feel elated, spent, I want more.

Crossing the finish line is a high that does not last long. But when I cross it, I want to feel it again. It is the last race of the day, and it is over. It is the last race of the season, there is no more. My fear and anxiety are gone. My anger feeds my strength. My strength pushes me. It consumes me. I know I will be back for more. This has now become the first obsession of my life. I crave the strength it give me.  I feel the beat. It catches my heart and I'm ready to find my place. My husband is buying me my own paddle for Christmas. I continue to work out and can't wait to be back on the water again. This season is long already as I battle with my health again. Others encourage patience with healing as there is time over the winter to get ready for new competition. I am addicted to the pain in my muscles as they remind me of life. Disease and tragedy can try to take focus, but I want to be on the strong line. No longer in the blind spot, but on the open horizon breaking past the buoys. As I train for my first full season, I come to realize how much comes before the finish line. I am asked again why I joined this sport. Why do I like to paddle. Why do I put in the long hours of training and get up early to get on the river. Sometimes, no matter what I say...it doesn't make any sense...it's just simply the feeling of being strong.

Wednesday, September 22, 2010

A new dragon


I joined a Dragon Boat team this summer. More dragons in my life. So you've never heard of dragon boating? Neither did I until I saw a postcard in my surgeon's office advertising a breast cancer survivor team. Dragon boating is a growing modern sport rooted in ancient China. A dragon boat is a 40' canoe powered by a crew of 22, one person to stear, one person to drum a cadence, and 20 paddling in unison. The canoe is adorned with a dragon head and tail and seats paired paddlers side by side in 10 rows. Each paddler must stroke free hand following the one in front. Each side must be in sync. Each paddle must lift their paddle and hit the water at exactly the same time. If not, paddles collide with clacking sounds, splashes and the boat does not move. It is much different than the rowing teams of those skinny kayaks with long oars attached typically seen on the rivers during regattas in the summer. I was not looking for this team or this sport, but it found me. I was nearing the end of the grueling part of my treatments that robbed my life of strength. I was welcomed as the new person and got into the boat with borrowed paddle and no experience. Sloppy and out of sync, I began to paddle attempting to keep my body moving beyond the desire to rest. Strength eluded me, but my spirit wanted to chase the next mile down the river. I was hooked. The new support group of total strangers knew I was hooked and that I would be back for more.

To say the least, it has been an amazing adventure already. Training with these women has pushed me beyond what I would do on my own. These women are all strong survivors, but most of all, are powerful athletes that refuse to be treated any less than athletes. We were all "real" people with our own identities before cancer. Some people get that. During my journey of dealing with cancer, I have encountered many that offer their pity. I've grown tired of answering "how are you feeling" whispered to me in discomfort. This team offers a place I can feel strong and normal again. I am able to grow comfortable with my scars and new flaws in this community of survivors. Here, am able to be present without a barrage of pity or questions. I welcome the acceptance of others who have gone through this disease without the need of constant commiserating.

We don't "take it easy"or get pampered because we have scars and torn up bodies. We are all fighters with determined attitudes. This is a group that likes to win. I joined at the end of the season and will go on to train all winter. I continue to heal and I have had set backs, but I pick back up and keep going. I found the taste of winning as I joined my new team in the last competition at the end of the season. It was an amazing feeling pushing water together in the 2k fighting for the finish line! These women have real "steel"! I am only a newbie just getting my feet wet. I'm hungry for more and will be anxious for the ice to thaw in the spring. 
More photos from the weekend in NJ:


Saturday, August 21, 2010

Aisling

Aisling is Gaelic for mystical vision or dream.

When I was about my son's age, somewhere between the age of innocence and knowing, I had a dark dream of a beastly image containing unknown meaning. Breathing somewhere between dreams and thoughts of the nether world, I felt like I was in a surreal existence. It was one of those dreams that moved me to get out of bed. At least, I think I remember getting out of bed. It seems so clear that I was not simply dreaming or misinterpreting the nightly maneuvers of the pet dog. I can't say if I was sleepwalking, or that I actually got up out of bed. There was someone or something in the room. A presence looming in the room. I could feel it and almost see it, but the darkness enshrouded with a thickness and slowness of water. The window was open. It was quiet. I adjusted my eyes and opened them as wide as I could, but it did not help as the darkness in my room was like a mist. Unable to see across the room, the walls that enclosed me in my bed fell away into a black landscape. I could not go back to sleep. The hairs on my arms stood out and I slowly rose from the protection of my covers. As I left my bed convincing myself that I was awake, and put my feet down onto the shag carpet, I turned to look in the direction of my window. The window at the other end of the house from where my parents slept. Too far away for them to hear me moan any discomfort. Curtains shut, only a wisp of moonlight coming through the edges, casting those shadows that make creatures. Creatures moving in the darkness upon the walls and ceiling. Monsters that never quite take their shape, but move in their pursuit of mystery and night madness.

I slowly waded through the darkness around my four-post bed, holding onto it as if it would float away. The darkness was like liquid and my movements were slow like those explorers on the news, walking on the moon. I felt for my bedspread neatly folded down part way near the middle of the bed. It made a certain polyester scratching sound as I ran my hand across. My feet were lost in the thickness of the rug below and my face was cold with the enormity of darkness.

I wanted to close my eyes to keep from seeing, but when I opened them, I saw the same. Stopping for a moment to consider and question what quest I was on, I contemplated stillness. My hands walked along the bedspread to avoid the sheen slipping sound that would echo in the mind if moved. I could not risk spooking away that which I pursued in the night. I crept along. I didn't let go until I got to the opposite corner of my bedroom where my closet was open. I had those louvered shutter doors that fold, accordion style, to reveal the messy contents of a child's closet. I never bothered to close them as it seemed pointless, except in games of hide and seek. At times, the open closet gave me comfort that there was nothing hiding as I slept.

A strong presence again loomed near me and I could nearly feel it’s cold breath on my face. As I approached the end of my bed, I found the corner post and held on with the gold trimmed white paint pressing against my cheek. I dared to look, to find the source of the apparition. There it was, in the corner of my room. Not in the closet where most childhood monsters reside, but over in the left corner of my room near my window. Between the wisps of light breaking through the curtain and the shadows on the wall. It was only a head that I could see, one with horns, scales, and what seemed like feathers. I struggled in the darkness to make out its features. I could not find a body attached to this head that I could barely discern. I blinked quickly hoping that my eyes would adjust to the darkness. I stared hard into the darkness. It had a large mouth like a lion and primitive sharp teeth as from a saber-tooth tiger. Not human, but something subterranean. I felt a cold shudder of fear, but my curiosity kept me looking. I felt bold with my fear, yet exposed in the darkness. I wanted to know why it was there, looking at me. Not moving or attacking, but just looking at me, like it was sleeping with it’s eyes open. I struggled to see its eyes, but I felt them piercing into the darkness breaking through my intimate space.

As a child, I had occasionally felt this sort of paralyzed mix of emotion when a rattlesnake decided to interrupt the day playing in the California desert behind my house. Those monsters I could see sunning themselves wishing to be alone. I contained a respectful fear, looking at its long marked body, repulsive to my own human eye. Knowledge of its poison made it ugly and something to fear. Advised by the adults meant to protect me, I learned to fear with respect, but ignore their beauty and inner purpose for the world. I watched as our neighbor gallantly killed a few to protect the children at play, even though we likely invaded their space. Those heroic reactions and impulses to kill taught me to forget their unique beauty. Instead their repulsion was contagious. Rattlesnakes. A natural part of the desert landscape. We were there invading its territory. We were the monsters killing them when found under the swing set or in the wood pile. They were not our predators, but rather, we were theirs. Beautiful dangerous innocence of the wild, meant to create order and balance ridding nature of lesser creatures that spread disease. I never worried about them hiding in the boulders I played around, but feared their dead bodies when stretched out as trophies in my street. Kids crowded around staring at its impotent body cut down by a protective parent. The prize of the rattle tail fought over by a few competitive neighbor boys hoping to claim the tale of a kill. I simply remember seeing the headless body slithering and twitching for a time even after the head was cut off by the powerful landing of an ax to its head. The head would be lifeless lying in the street, while the body continued to move and strike for a time, tail rattling.

The heady animal likeness kept in the shadow and I continued to stare hard into the darkness trying to make out its features. Was I invading its space or it mine? Was I asleep dreaming, or awake living a nightmare? I did not feel like it was going to attack me, so I didn’t run or scream. I wanted to find its eyes and stare it down. The curious bold nature of a confident child. I don’t remember much about the rest of what I saw and whether it was a vision or a dream. I checked the same place in the morning hoping to soothe my mind that it was simply shadows playing night time tricks with an object in the room. My room was plain and undecorated with toys. Clean and simple. A four post bed with canopy and lace around my bed table light. I looked. There was nothing there in the space I stared into the night. It’s been a few decades in the forgetting, yet I still remember that particular image and the feelings it conjures. I remember how it impacted the rest of my week. I could not get the image out of my head for days. I remember feeling it as if it were some kind of evil presence, but yet I did not feel compelled to run or hide or scream. I kept my vision to myself knowing I would not be comforted by those meant to comfort me. They who slept soundly at the other end of the house. I remained alert in a sleepy haze unable to succumb to the unconscious mind. It was like looking at the unknown darkness, feeling its closeness, but unable to see. It never revealed its details or features, yet it never disappeared that night into the darkness. Was that the first time I had a sustainable premonition for the futurity awaiting before me? Or perhaps it is simply the grown up interpretation of my mind’s eye as a child? In any case, its powerful memory has grown deep roots into my soul defining something of who I’ve become since then.

Sunday, August 1, 2010

A Window of Time

A leaf falls from the tree when it is time.

Not before it changes to a beautiful color of a sunset.

It decorates the ground before it withers and is covered in snow.

Throughout winter, its buried decay is nourishing the tree it fell from.

And once again is remembered in the spring.

Wednesday, May 12, 2010

I Want To See The Sun


The ice is long gone and the days have been warming. Liquid skies have taken over to wake the earth and wash away the blandness of winter. I want to see the sun. I have been planning and looking forward to a first outing with my family for so long.  Since all of my treatments began, we have been consumed in the business of my illness.  There has been very little time to focus our energy on anything else.  I am still struggling to breathe, but I don’t want to care that I am not the same. I am ugly, wilted and weak.  The things that made me a woman are wounded.  I only have my inner spirit.  I push myself to do the things that I once could do without effort. I attempt to hide the ugliness underneath so that I will not be treated differently by those that love me. I can’t stand to watch their hearts break through the eyes that look upon me. They want to take care of me and protect my energy.

My body is weaker than I’ve known and it is new territory to push my musculature with the demands that once came with ease. Frustration takes over too many times, but I use my anger within to push myself harder. It is like a flame that burns in my soul. I cannot stay still for long. Rest is forced upon me and it is the lonely hell I detest. Sleep eludes me and fatigue tags along each day, but I
need to create and build things. Not only does my physical identity suffer, but my role as a mother and wife is broken.  My children need me to play again. I need to care for my soul mate, but he now cares for me.

Another treatment is coming. I have been through this enough that it is usual.  My time at the hospital is weekly and routine like a job.  This new "medicine" I must endure pushes me to the edge.  It is causing damage to the parts of my body that do not deserve to be attacked.  It does not know the difference between the cancer and what should be left alone.  My doctors can only  be certain  how far the cancer has spread, as much as the tests will allow them to see inside my body.  This chemotherapy will attack the unknown cancer as well as what can be seen.  "To be certain we get it all" I'm assured.  There is a cycle to this hell.  Once I receive this treatment, I am lost in oblivion for a time.  I am nauseous, weak, helpless, mindless.  I sleep for days.  I vomit for days.  I grow weak and cannot comprehend the time of day.  My body recovers a little bit, and then it is time to knock it down again. This is called “recovery” by some. So many spun words meant to encourage the agony that lies beneath.

It is almost time to go back to the hospital and sit again under the IV poles.  I wake and gain strength only days before it is time to return.  It is my window of time to exist among the living.  Sun is coming and I look forward to feeling the warmth on my skin. I am ready to play with my family and friends. The timing is perfect. The sun will come out before I am put down one more time. The weather forecast is good for this Mother's Day weekend. It is everything to me to fill this short window of time with love and memories. I have gotten bikes ready building with excitement. A day of play. Waiting.  Waiting for the sun.

We had been at odds all weekend. Not the kind of fighting that's obvious over stupid annoyances. Silence. Distraction. Assumptions. I had been looking forward to a family bike ride. A day out in the sun. A planned weekend with friends.  I woke late in the day to find things had changed.  I was left behind by friends who did not give me the choice to rest or play. It was they who decided I needed to rest taking pity on my weakness.  Perhaps they were tired of being slowed by my inability to keep pace.  My energy is drained, but the pity dampens my spirit to fight.  My husband saw me resting and wanted to take care of me and let me sleep. A sweet intention of the heart to let me rest, if only to soothe his broken heart seeing me in so much pain. I woke to find that the plans of the day had been changed to accommodate my unscheduled slumber.

 I try to understand why we are at odds.  The day is half over, but I want to rescue what is left.  He watches me in pain and wants to protect me he says.  I am consumed in loss and again frustration grows into anger. I no longer want to be held down by my weakness. I was not woken for the morning of adventure.  My sleep did not break until late afternoon.  A rare occurrence and a pleasant reward of rest at a bad time.  My last chance to play before I get the next treatment and fall under the cloud of sickness and helplessness.
I recognize his need to see me heal and rest. I know that he loves me, which makes me feel badly for feeling angry with him for sheltering me. I know there is more on his heart he is keeping from me. A lifetime together, his wall is transparent to me. “They left, and went on the bike ride without us” he says while busy with other things. I questioned why we didn’t go, why we weren’t ready, why no one woke me or waited. Silence. His face reads conflict. I am quickly filling with sadness and anger that something so meaningful was abandoned.  I have very little time in between chemotherapy treatments now.  I have a treatment followed by a time of side effects, only to have a day or two of feeling better before the next one.  A window of time to play, to feel normal.  And this weekend, the anniversary of my diagnosis, a day to play with my family.  An ugly anniversary I wanted to cover up in happiness and sun.
He never means to hurt me, to let me down. Though my heart is aching, I know he is loving me. He tries not to put me down to rest, but he longs to see me at peace. He lifts me high and carries me to shore. My brokenness is quietly consuming his soul. I long to be in his arms but for now his wall is too high to climb over. The very wall he builds to maintain his own composure to show me a contrived strength parts us. He has known before, rigid walls do not withstand the earthquake of my hurting heart.

For us, May has been filled with days of celebration. The onset of spring, Mother's Day, our wedding anniversary.  This year, I wanted to celebrate a few moments of strength and enjoy a small window of time.  Friends were to join us, but it seems cancer has it's way of breaking some relationships.  This friendship was not meant to withstand the hard times.  They were not patient.  My ugliness and illness became an inconvenience.  They did not understand my fluctuations in strength and weakness.   The doctors tell you what your body may go through as you endure treatments and surgeries.  They do not mention the toll it takes on your personal and social life.

It has been a long winter for me. For us all with this awful darkness looming in the backdrop. My children were building in their excitement too. Now I can't help but feel resentment that the boys will view a lost weekend because of my health again. It was not
my choice to not get out. I did not want my health to keep us home. Each weekend it rained. Each weekend drew closer to the next treatment which becomes my hell. I am motivated by windows of time that are small. I want to get out and spend the happy moments of sunshine with my family.  My husband expressed anticipation having become prepared with a new bike. I am baffled by the abandonment of joy. Our friends expressed the same anticipation, but then at the last minute patience is not found to deal with my sluggish rise to the day.  A passive rejection is followed by a manipulative guilt trip that I should rest and be cared for rather than dragged out for the day.  They don’t seem to get it. I don’t want to stay in and rest. I don’t want to take it easy. I don’t want to be trapped by how I feel.  I do not complain of my side effects.  I do not want to be a burden.

I try so hard not to show it, but I know when I look in the mirror my posture belongs to someone else. I am being told that I am stubborn by those who do not get me.  I want my boys to enjoy playtime with their mom. I want “it” to not be the topic or backdrop of the day.  The weekend forecast was good after many weeks of cold rain. Spring has been typical up to this point. It has revealed its beauty and color, waking with the sun. Yet with sun and spring comes the nourishment of rain. I have given in to the rain waiting patiently. Like the seed in the ground, not yet revealed. Frustrated by time and impatience.

A beautiful weekend of sun arrived, but as I was left to sleep late, friends did not wait to play. I wanted to go out anyway with my family. I thought my own love knew that I still wanted to play in the sun, no matter how I felt or how late it had become. Instead, he ran from me in silence. He went away from me and kept to himself. He occupied his time with chores and tasks left undone. I felt disappointed and crushed. There is something more, but I am left in the dark. Perhaps he needed space. There is one more day before the window closes.  I attempt to bury my disappointment.  I find my mind clouded in a medicated haze. I do not want anyone to feel obligated as I resign to being alone with my desire to get out in the sun.
It is the anniversary of our terrible news. I wanted the weekend to be filled with joy and playfulness. I did not want for us to wallow in the memory of last years day. I wanted to prove to my dragon that I am strong and will not be put down. Instead my friends put me down and forced rest without giving me the choice to rebel. Anger and disappointment filled my heart. I thought everyone knew how much it meant to me to get out on the first days of sun. I had been waiting anxiously. Time lost to others assumptions of what I must need. I do not want to rest. I do not want to be left alone to focus on the pain I am trying to escape and forget. I want to play with my sons. I want them to see me live and move. I do not want to appear sick and tired before them.  The bikes remained parked in
the driveway unpacked for any trip. My husband’s isolation from me baffled me. I couldn’t understand his conflict.

There are times in life when emotions must come to the surface. When the burner is left on high, eventually the water boils. Our missed opportunity bore another opportunity. It was not what either of us wanted, but necessary. It was not good timing, but because of the
significance of the weekend, and complicated underlying meaning, we had a meeting of the hearts. The mixed message was revealed to me and I saw that my husband could not move past his private pain. He had become paralyzed with worry and became over-protective. He too was hurt by the abandonment of friends, and also heartbroken that in a year, he watched his wife change so much.  He lays with me and hears me moan in pain in the night. He hears me take medication at 3:00 in the morning struggling for relief. It was today he broke down before me. We cried together over a lost weekend, and more.

He was consumed in his own pain that he cannot fix his broken wife. Unable to recover from the lost time in the sun, we cried together for the first time since last year. An inconsolable cry. A pot boiling over.
"I know you are in so much pain and I can’t stand seeing you this way”, he struggles to say.  “I couldn’t stand it this week and I lost it when I was out of town and you told me that you couldn’t get any pain medication and you shared how much you were struggling to get through the days”. He is breaking down and finally sharing what’s on his heart.  I have been self-absorbed in my illness finding comfort in his constant support and seemingly unfaltering strength.  I let go of my own disappointment in a missed day of  play.  I know I must give others around me their space. But inside I was sad. I crave the time with my family. I need my boys to see me live. It hurts to hear them say they miss me, the woman they once knew. The woman who could do anything she put her mind to. I need to accomplish something. My energy is depleted quickly, but I push harder. My anger motivates me, and I do not care if I collapse.  But now I see how much my husband is hurting too.  He feels alone and helpless. 
As the day is passing and it is too late to recover, he breaks down and finally succumbs to his feelings before me. He has been bearing down in his own pain of watching me suffer. He is too remembering that this is the anniversary of our phone call from the doctor. The day life would change forever. The day our burden came through the front door. It was then when we fell down the rabbit hole into a wonderland of another kind. Our world has become warped and bizarre. Others treat us differently and so many things don't make sense. One moment we feel big and the next we feel small, not fitting in anywhere.

Struggling to compose himself he shares, “I remember the day that you called wondering when I was going to get home from work. I knew it was bad. I could hear the calm in your voice, but it was odd that you wanted to know when I’d be home. There was a hidden anxiety in your tone. I remember telling my boss, my wife called me and told me I need to come home. I don’t think she feels well because she never asks me to come home.” I called him at the office and wanted him to come home to talk to him face to face. I couldn’t
tell him on the phone. I could not send him an email. I held the news for too long and it was time. He had been out of town on business and was about to leave on another trip. It was too much to bear alone. I should have told him sooner. I didn’t want to break his heart. I wanted things not to move or change, but they had anyway. It was out of my control. I had become someone else. Someone in pain. Alone with my news.

Breaking down he reflects, “I remember you sitting me down on the couch and telling me all that you had been doing over the past few months.  Dropping the kids with neighbors, to go to all these appointments and tests. I remember you telling me that the doctor had called and then saying that you had cancer.” He hasn’t spoken about these moments since then.  Normally when he speaks of things like these, he looks down away from my eyes, showing no emotion or break in his tone. This time he is struggling to speak and his sadness consumes his voice. He cries in pain before me, a man with a broken heart helpless to fix the love of his life, his protective layer shed.
“I remember being almost numb”, his voice breaking, “not knowing how to feel or what to do,” he shares as if it were yesterday. Tears are streaming from his face now. Looking at him, I cannot hold back my own pain and my face is wet with emotion. He is a man who does not show his emotions readily, even with me. He has been working so hard to be strong and positive in front of me. He has hidden his suffering from everyone. As the sun is shining, his cloud of sadness spills over the day as he is reminded of our painful anniversary. The wall he has built is crumbling in the rain of sorrow.

“I remember an evening in bed one night,” when we both fell into our all consuming sorrow.  “That’s the last time I cried like this”, my husband reveals. Crying now after a lost weekend heavy with hidden storms of emotions. “At that point on, I don’t remember crying or feeling. I knew I needed to just be positive. I needed to carry on.” And from that point, we both have carried onward. Each day behind us in a fog, moving forward. We sometimes forget, in order to keep moving forward, we need to look back to see how far we've come.
I remember being blind-sided. He too felt that way. I had kept things from him for a time. In the past, when my health failed me, he abandoned me in fear. I needed to be certain before I shared with him what we might have to face. He is crying before me uncontrollably and now I feel the depth of his love. He wants to fix me.  "You need to fix me, but you can't", I cry. "Instead, I need you to help me live".

It doesn't matter that my pain overcomes me, or that I feel weak or tired. I don't want to lay in bed all of the time giving in to what plagues my body. I will wilt if left in the shade of isolation. I need to be out in the sun. It frustrates me that I am held back by what I know I could once do, but I don't want to give in and take it easy. He can't fix me, and so he wants to protect me. His loving protection has smothered and trapped me and I grieve over a lost day of happiness. I grieve over knowing the burden he carries in his heart.  I grieve over so much we have lost.
I want to be angry at everyone for assuming they know what I need. Some have conspired to know what's best for me in order  to fulfill a codependent esteem, and I am angry for being held down. I feel trapped and want to scream. I am angry and feel smothered. I would rather get out and use up all of my energy on a day of play with my children in the sun, than rest and miss out on making memories. I have learned to fight through my pain. I do not stop or I will freeze in place. I  must go on and will not be held down.  My husband's heart is heavy with sadness and feels helpless. He wants me to be well and grieves in secret. Numbness takes over and he moves through each day without emotion or complaint. But this weekend became too much to hold inward. I wanted out. He wanted me to remain at rest. He watched me sleep and wanted to protect what he saw as a moment of peace for me. He saw me at peace, a rare place without pain. He wanted it to last, a time without pain. Seeing me at rest, he wanted it to last.
He is my everything, but we are at odds sometimes as he wants to take away all that hurts, knowing he cannot. His motivation to erase the pain becomes misdirected in silent control.  I am left wondering at times that perhaps he is repulsed by my ugliness.  His feelings of helplessness are expressed by silence and so I then wonder, is the silence I receive because he cannot love what I have become?  Every moment is a gift of time. I am only glad we have survived all that we endured in our past to enjoy the time we have together. We have gotten past our hardships. We healed together and survived. Can we now survive this journey?
My Dear Husband,

Let us embrace the noise of life to drown out the sorrow. That is what love is meant to do. I understand through all our hard times, that love in order to grow, must sometimes hurt a great deal. It is the pain we endure and choose to survive that can redefine love. It is transformational.  I am fighting the best that I can. I do not want anyone including you or those I love to see my weakness. I want to be myself again. But do not over-protect me. I must fight through what hurts to be distracted by joy. It makes me feel full to be spending every moment with the ones I love.  You cannot control or tame what is trying to take me away from you. Do not bridle me. I will only resist and be sad. Our story is written with real love and strength. Let me run even beyond what I can sustain.  You give me a will to live.
You have shared with me how it devastated you when you watched me loose my hair, my dignity, my strength, my beauty. It was too much for you to bear and you never told me until now. You could not shave my head for me when  my hair began to come out in clumps. You were paralyzed in time, not wanting the ugliness to propel forward. I took control of what I could not stop. The numbness wore off and what we were going through had struck a nerve. I sensed that you struggled to look at me in my wounded state. I tried to look beautiful for you, but you looked away. You kept your pain to yourself, and could not bear to see me change. You admired my strength through it all, yet now, you want it all to stop. I do too my love. It is enough, but if I stop, then I fear I will wilt away and my boys will remember a woman who gave up and let go of life.

You want to put me on a pedestal and guard my strength. My strength cannot be contained, for it must move to grow. We are powerless to change what is in my body stealing so much. But we can take charge of each day. After all these years, you will know when I stop and rest and withdraw, that it is finally too much. I have always walked forward with sure footing. Sometimes you love me so much it hurts. A part of me will forever be infused in your soul. I know you care and are trying to protect me. It is in your nature to want to fix things. It destroys your heart that you cannot fix me or take my pain away.  I am touched that you want me to not suffer and rest. Embrace my energy. Let us soak in the sun together. It is only here for a short time.

Friday, March 26, 2010

Sleeping Dragon

Sleeping Dragon


“I’m glad your hair is growing back, Mom”, my oldest son says to me as he rubs my head saying good-night. Though they are getting older, I still tuck them in, but not in the same way I used to when they were little. They have their own rooms now. A natural transition much needed as they get older. They have shared a room for seven years, yet it feels so natural now that they are apart, that it seems as though they have been this way for a much longer time. They are happy and comfortable, feeling more mature with the added independence of their own space and privacy. This is the only part of life that is not in slow motion for me now; watching my boys grow up. I’m afraid to blink that I may miss something. Another inch, another accomplishment, another lesson learned. They are passing through the wormhole of time at lightning speed. Everyone warns you that “they grow up fast”. But I never imagined it would really feel like this. I want to keep up with them and answer their questions, play with them, make memories with them, love them. I want more time. I do not want to hold them “in place”, but rather I enjoy seeing them change and grow. In each moment, they are becoming the men they are meant to become one day. Each accomplishment, every scar, all the failures and mistakes, bad days and good ones shape and mold.

Perhaps this illness of mine has interrupted our time together, but it has given us perspective and deeper insight. Instead of letting it ruin the party, we have used it to build strength and integrity. I just don’t want to miss out on the fun of their childhood. I want them to remember that Mom could play, cuddle, talk honestly. Life is here and now and I want to enjoy every moment with my children. Moments have been spoiled and interrupted.

A sleeping dragon woke from its cave and came to terrorize my life. I refuse to run in fear though. I will not run and hide. I face the dragon and look at the power it has to take my life. If I look into its dark yellow eyes long enough, courage comes until I am no longer afraid. It is not a beautiful dragon. It is one of those ugly, terrifying dark creatures that skulks quietly in the darkness. It is that horrible evil presence felt when walking in the absence of light. Felt, but unseen. It knocks me down with its sweeping tail at times, but I get right back up. Its tail comes from behind where no one sees or expects. Unable to anticipate its hidden moves, it is difficult to rest. The dragon won’t go away, but now I find something inside of myself to shout at it. A courage stirs deep within my soul. Is this what they call having a will to live? I face my fear knowing each moment I have is precious time. My fear has given me power, like shouting at a wild animal about to attack, hoping to intimidate into submission.

Monday, February 22, 2010

One More Storm

A late February afternoon. The last inch of coffee quickly growing cold in my cup. I won't finish it. I never do. The quiet house creaking with the noise of the wind. Yet another oncoming winter snow storm about to erupt. The curtains move as the windows leak the angry winds. My body aches with the unending pain that plagues my soul. Fresh off the narcotics that seem to only take the edge off, I am numb with my thoughts. A pain only those in my position understand and others try to comprehend. A pain not confined to the physical world. A mind tortured by emotional twinges, memory lapses, broken concentration, a new dependence on others, unfamiliar isolation. The pain frustrates me to pure anger. A primitive and childish anger.

The winter days match my mood and present journey. My hair has begun to grow back, but it is an ugly attempt I am compelled to keep hidden. My patches of stubble are covered like a dead grass covered by the snow waiting to show its lushness in the spring. Though I have a wide selection of beautiful scarves, I am resigned to my comfy scull cap at home. I don't feel beautiful. I no longer care. Underneath the winter clothes, I am scarred and deformed.  I don't want to think about more surgery.  I don't make the effort to leave the house put together anymore. I am not a vain woman, but the outside always represented what was within. My dignity borrowed, my self-respect worn down. I care not to change the clothes I dare not wear out of the house. The brightness in my eyes is slowly returning, masking the twinges of depression below the surface. My body is attempting to return, but it is still plagued by a premature age brought on by desperate remedy. Temporary panaceas battling a monster that cowers back into its cave for now. Sooner or later I fear, the dragon may wake to breathe its fire testing my mortality and perseverance.

My previous positive attitude and energy have become a fake momentum for others to see. Inside I want to quit, but I know secretly I must not. If I do, my body will give in. Those that are the closest to me see my scratched paint and my efforts to cover up the rust underneath. On my worst days I hide and run away telling others that I am fine, when in fact I yearn for comfort and quiet consoling company. Like a child, I want to be held, but instead I must hold my head high. My pride masks my fear. Secretly, I want to protect them from this darkness within. I need their light to guide me past this point. It is my effort to not let them see me falling apart, yet it is with them I take out my anger. It is this place I am now that I feared months ago. Who I am is lost and covered by rust. Will those that love me forget who I am? Do they know this is not me? Do they know I am buried under the snow? The heavy thick snow penetrates deep into my soul where I cannot reach weakening with new born rust. I wait for the sun and the fresh air. Will my mind ever clear? Will I forget this pain that doesn't go away? I can't hear the world. The social dance I once maneuvered has gone quiet. A new stealth takes hold with my physical changes as I have become unrecognized in my absence. I have become isolated in the job of healing. I have transformed from a butterfly back to the caterpillar, unnatural and upside down.  I feel ugly.  I never knew I would miss what I used to see in the mirror.  My long thick hair, my perfect eyebrows and long eye lashes that received so many compliments.  Privately I do not want to look in the mirror when I take my clothes off to get into the shower, because it reveals more of what I morn.  I do not want to look down.  I change my clothes no longer in front of my husband and I turn away when he enters the room.

There are family members that have grown silent and distant in their discomfort of my condition. They know not how to continue supporting me. They are burdened by my new identity. What has happened to me makes them sad and I cannot comfort them. They cannot provide me with any sunshine as they have settled into their own darkness from my illness. It is the old rules they cannot bypass. Young people cannot die first. Deep down I know they are overcome with sadness and helplessness, yet outwardly they are emotionally cold. I have become a strange creature to them. In an effort to protect their already heavy hearts, I keep their concern at bay with vagueness as they have become a burden to me. They want to care, but they don't know how to display comfort or encouragement. Soup, article clippings, and occasional cards are the gifts of lamentable concern, but tiring and uncomforting to my strong independent soul. They want me to know they love me, but they do not know how to touch me. Their intentions do not penetrate. I can no longer show a positive self to them or console their hearts burdened by a sick young woman. I am too tired to smile over the phone. I am a vague misunderstood story to tell in their made up minds of comfortable creation to those inquisitive strangers. They steal the comfort meant for me as the reality penetrates their hearts for only a moment. They are hundreds of miles away. A conveinient tool of denial. They accept flowers and gifts of comfort from their friends meant to cheer their sad hearts.  It encourages me that they have found comfort elsewhere, but in their effort to understand, they listen to the stories of others. They become more disconnected with my reality and focus on what comforts their own souls.

It is an irony that this is the second time the dragon has made an appearance in my family. Tragedy has struck these genes already. Though my father too, is a cancer survivor, they do not seem to have a road map to deal with me. His cancer was found early, late in life. He went through very little treatment. Incomparable, our experiences different, yet I must accept that they do not have the emotional compass to find their way. He was also stuck hard with Polio as a young boy, crippled for a lifetime. These times of illness don't always prepare one to deal with others. I cared for my father during his down time with cancer.  When aging parents fall ill, the adult children gather and fuss. When it is the other way around, the pages in the rule book are blank.

I want not to waste a moment. I want to be inspiring and positive. I want others to know it is good to love even while hurting. I have lost my momentum. My flame flickers as it struggles to find oxygen.

The petals of the roses my husband gave me a week ago are falling onto the counter. They have reached the end of their beauty. Their aroma grows sour and the water they sit in grows cloudy and rancid. Soon they will be returned to the earth to nourish new things in the spring. I feel like those thorny stems sipping on ill water, petals falling. I cry to be taken out and laid on top of the snow. The pain muffled by its quiet softness. The bulbs of the crocus are buried deep in the ground beneath the snow waiting for their time to seek the sunshine. No one is thinking about their sleeping beauty. As yet another storm approaches, so many complain of more snow, more cold, more darkness. They know not what darkness is. They do not understand the cold and the change it triggers underneath. It is what survives past the wind and snow that shows strength. The same branches that strain under the ice in the wind will show a temporary beauty marveled in the spring. All that is black and white will become bright with color. The rain will wash the dirt away and make the air sweet with budding perfume. Spring will come before people can finish complaining.

My bones are straining under the weight of the ice. I find little relief in the cold part of this journey. Like winter it has become monotonous and colorless. My husband manages to find the energy to support me and love me despite my paleness of life and joy. I crave his energy and company. I love him with my soul and I do not want to use him up on this part of my life. He is strong, and I really trust and let go. I had worried that he would crumble, but he has shown a devotion and strength to take over what I can no longer do. He accepts my silence, my psychotic ramblings and disconnected mind. I am not alone on this journey as he is my companion indomitable by the medical traffic in my life. Yet at times, I hide my real pain from him and want to suffer alone because my secret depression needs released before it consumes me. I quietly plan for long isolation so my dark side may have its time to live, but it does not belong in my soul and leaves quickly as its opposing energy resists mine. It is the brighter shades of life that we focus on while maneuvering through my tasks of healing. It requires less energy than the darker side, but with light, there is shadow.

My husband assures me he has not forgotten who I am as he knows me the best and reminds me "this too shall pass". He reminds me of who I was by forgetting the things I usually have in order. He takes over and reminds me of all I was capable of doing as he struggles to take my place in life in addition to his own. He has been on this journey of life with me from nearly the beginning, long before the dragon came. It is he who knows who I was with depth and time. We are left undefined without each other's history. He knows my darkness inside and gives me permission to hold on. He has had to learn how to hold his once unfaltering wife. It is all a painful illusion.

My children have grown stronger and self-sufficient under the weight of my dependence on them. Their love is unconditional and patient. I can't help but feel guilty that my limitations shape their choices. No soccer this season for them because I am too ill to take them.  No skating parties or birthday parties because I cannot drive.  I am hopeful that though they too see the rust, they will grow up having known that the soul underneath hid transcendental joy. We have shared the sweet bliss of innocent moments, but they are young and forgetful. I leave notes of memory in the art I create. If I can stay for their childhood, it is I who receives the greatest gift. My life is full with them in my heart. I am reminded that losses will produce strength. The cold white snow covers the flaws. It absorbs the noise of the air giving way to a peaceful pure clean calm before the chaotic storms of spring. My oldest son measures my budding new hair in place of the ritual we shared of sitting together with a book while he twirled my long hair in his fingers. And as it attempts to grow, it continues to fall out.  He reminds me he hasn't forgotten the mom he knew by expressing he misses me as he strokes my wounded head. He is young. He is resilient. He is perpetual spring. Everything always new, growing, pushing through the snow.

There are things I want to do. I am impatient for spring, but for reasons beyond others' fatigue of the snow. I used to listen to people as they preached that winter was a season of death, after things went dormant in the fall. Symbolic for them perhaps, lurid in pious transformation. Contrived representations in an effort to relate. As down as I have felt this winter, that thought is even too depressing for me. It is an interpretation created by those annoyed with a season who misunderstand its purpose and beauty. As they are covered in layers of snow, the bulbs are growing and multiplying. Abundant life, not death. Not a resurrection, but a wakening of new strength. Sleep repairs the wounds of the fall. They will show their best efforts soon. The great expectation is that they will be brighter and fuller than the year past. They did not die. They grew and multiplied. The ice will soon melt and the weighted sleeping grass will lift skyward ready for grooming and playing children. The trees bang against the house letting me know the storm is coming. One more storm to endure. The days are growing longer. Each day there is more light. Soon the white colorless snow will be replaced with bright patches of yellow, pink, purple and green. The days will grow longer and brighter and the air will smell sweet and warm. It will come quickly. The color will appear first on the ground when the crocus arrive. As the last snow melts, the ground will be purple before its green. The forgotten color will return, a sure sign of brighter days to come.
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