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.

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