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.
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.