It was some time in the afternoon. I gazed outside my kitchen window, lulled into daydreams by the blankets of white snow, tucked into every corner, and draped over every tree branch. The trees black and barren, they looked lifeless, stunted in their attempt to reach the sky. The future held spring though, and there was something under the brown bark, deep inside their core that calmly waited, made stronger by the harsh winter.
The noise barely reached me, but I picked up the phone, “Hello?” I snapped out of my trance, the reflection of snow in my eyes began to melt down my cheeks. My best friend was sick. Brianna had been diagnosed with a rare Mitochondrial disease at birth. Her doctors thought she wouldn’t live to be a year old. Others with the same disease have wheelchairs for legs and machines for lungs, but not her. Just turning 18 and looking completely normal, she struggles daily with a frustrating and inhibiting disease.
Inside every cell in the human body, Mitochondria create more 90% of the energy the body uses to grow and support life. Coming in many forms, Mitochondrial disease occurs when the mitochondria fail to supply enough energy to sustain the function of cells and organs. The disease is genetic, passed down maternally. The disease is virtually invisible, but extremely unpredictable. It’s most severe effects such as organ failure can strike almost instantly and without warning.
Challenges are the stepping-stones towards greatness, and Brianna never seems to have her feet on just one. Constantly threatened with death, imprisoned inside an unreliable vessel, she keeps on across the great river of life, each step aimed towards her dreams. Lying on a hospital bed shaking uncontrollably, wrapped up in white sheets that looked only as if they would strangle her, fever rising to 103 degrees, but still fearless.
One minute shopping with friends, the next in rigors with septsis, her disease becomes real in a matter of seconds. She dances past broken ribs though, sings through chest tubes, and laughs literally in the face of death. She still puts shows together, awes a crowd with her beautiful voice, and opens her heart to the world.
Life is filled with unpredictability, happiness, and sadness, which always threaten to hinder our abilities to be the best we can be. I find strength in Brianna’s amazing perseverance through incomprehensible hardships. Her resilience and courage inspires me to stay motivated and determined. She has taught me to find the beauty in ugly situations, to hold on to rays of sunshine in a storm, gather up and celebrate all of the laughter and color in the life around me. It’s a short thing and finding the perspective that brings out it’s magnificence is something I have found with the help of a wonderful person. I will carry the experiences she has gifted me with for the rest of my life, drawing from them hope, strength, and inspiration to live my life to the fullest and to find the inner power to persevere.
It’s easy to live in fear, the unknown as abundant as the air we breath, or the blood in our veins. When dreams and passions are hidden behind hospital walls or ER curtains, it takes more than an IV and a pacemaker to get through. Arms, veins, branches; we reach towards the sky where our dreams shine bright as the sun. There is something inside each of us, something quiet and waiting that is made stronger by the most severe winters and the earliest frosts. Something, that through the bleak always emerges and colors the bounties of a beautiful summer.
Wednesday, March 11, 2009
Emotional Prisoner - can you live mask-free?
What does it mean to see someone...... really see someone? I came to the belief that people see only the shell of who you are, the pretty package and judge the package not the contents. For years and years ( not an exaggeration!) our families struggle with mitochondrial disease, has mostly been a battle against an invisible foe...or at least it feels like that because of the way people respond to it. Statements like, "you look so good", the ever popular, " you would never know from looking at you, Really?" and the annoying "you seem to have enough energy to me" are enough to drive a person suffering everyday with a life-threatening disease over the edge! Perceived competence because our disability is invisible is just as irritating as perceived incompetence because someone is a wheelchair user. Everyone sees everyone through their own set of beliefs, perceptions, and previous knowledge including people with disabilities. We judge those who are "healthy" as unable to comprehend a medically fragile life. Well recent events have made me question that.
Our daughter Brianna, has struggled with Mitochondrial disease for 18 years. Her whole life. She has never known a life without pain, without risk, without challenge and she is one of the most courageous young woman I know. Her dear friend Shay, thought so too and wrote her college essay about Brianna. It was so incredibly humbling to read. No one gave a lecture to Shay about the path Brianna has walked or taught a lesson on Mitochondrial disease. She just was brave enough to step one foot into her friends shoe, and wonder what it might be like to be Brianna. That was enough for her, and the results were an essay that brought me to my knees. Brianna opened the door just a creak to let Shay peak inside her world, and Shay understood.
How can someone know you, the real you if you are not brave enough to reach out to them? Sometimes you maybe disappointed, sure, that can happen. But what if it doesn't? What if you share who you really are, the good the bad, the ugly and people do respond in ways that are loving, supportive and inclusive? Letting people into your reality is risky, you run the risk of being rejected, alienated or abused. But what if that doesn't happen?
Brianna loves to perform and was fortunate enough to be cast in the musical, "HAIR" being performing by her school. Performing is her passion in life. It is the things that makes her get out of bed in the morning despite a night racked with pain. It pushed her to continue to sing and train for a year with an unknown rib fracture. It gives her the strength to return to full on rehearsals one week after having her chest opened up to repair that fracture with a plate and 7 screws. She wants it, that's it. It is not negotiable. Having said that, she was distinctly afraid of being left out, forgotten, disenfranchised from the cast when she was absent to have this surgery. Her teacher's Mitch and Andrea along with the Director Alecia, worked their magic, and little by little gave Brianna the message that she needed to open herself up to the cast, let them in and share what was happening to her with them. She had some negative experiences in the past that gave her great trepidation about what could happen. Her trust in them was so great that she eventually did share, and the response when she got back to the cast and during her recovery was fantastic! She was embraced in a very real way and that singular event has helped her to heal her spirit.
Much of the time people with chronic diseases feel so lonely walking along a path they believe that no one could understand. While surely no one can crawl into the shell of your body and feel exactly what you are feeling, the search for commonality is something that is part of our humanness. In the book, "Sick Girl" the authors singular journey of being the oldest surviving heart transplant patient was to me the ultimate realization that wearing a mask to hide your pain from others alienates you from their affection, acceptance and love. She spoke of wearing the veil over her face at her wedding as something that allowed her to hide, literally and figuratively. She wanted everyone to see the fairytale, the beautiful bride and not the "sick girl" behind the veil. She spent her life hiding behind the outward shell of who she wanted people to see, the strong, undaunted young women who was surviving longer than anyone could have imagined. Yet inside she was angry, lonely, isolated by the same skill that had allowed her to survive. She constructed an emotional prison for herself, and was pissed that people didn't get "it".
This post in is no way saying that it is easy to live an open life. Most people just want to know the good stuff...the sunshine days. If we are brave enough to share the rainy days too, our connections with people may for the first time be deep, spiritual and uplifting. The may feel brave enough to share their story with you. Then you both can finally see each other, mask free with the warts and all.
Our daughter Brianna, has struggled with Mitochondrial disease for 18 years. Her whole life. She has never known a life without pain, without risk, without challenge and she is one of the most courageous young woman I know. Her dear friend Shay, thought so too and wrote her college essay about Brianna. It was so incredibly humbling to read. No one gave a lecture to Shay about the path Brianna has walked or taught a lesson on Mitochondrial disease. She just was brave enough to step one foot into her friends shoe, and wonder what it might be like to be Brianna. That was enough for her, and the results were an essay that brought me to my knees. Brianna opened the door just a creak to let Shay peak inside her world, and Shay understood.
How can someone know you, the real you if you are not brave enough to reach out to them? Sometimes you maybe disappointed, sure, that can happen. But what if it doesn't? What if you share who you really are, the good the bad, the ugly and people do respond in ways that are loving, supportive and inclusive? Letting people into your reality is risky, you run the risk of being rejected, alienated or abused. But what if that doesn't happen?
Brianna loves to perform and was fortunate enough to be cast in the musical, "HAIR" being performing by her school. Performing is her passion in life. It is the things that makes her get out of bed in the morning despite a night racked with pain. It pushed her to continue to sing and train for a year with an unknown rib fracture. It gives her the strength to return to full on rehearsals one week after having her chest opened up to repair that fracture with a plate and 7 screws. She wants it, that's it. It is not negotiable. Having said that, she was distinctly afraid of being left out, forgotten, disenfranchised from the cast when she was absent to have this surgery. Her teacher's Mitch and Andrea along with the Director Alecia, worked their magic, and little by little gave Brianna the message that she needed to open herself up to the cast, let them in and share what was happening to her with them. She had some negative experiences in the past that gave her great trepidation about what could happen. Her trust in them was so great that she eventually did share, and the response when she got back to the cast and during her recovery was fantastic! She was embraced in a very real way and that singular event has helped her to heal her spirit.
Much of the time people with chronic diseases feel so lonely walking along a path they believe that no one could understand. While surely no one can crawl into the shell of your body and feel exactly what you are feeling, the search for commonality is something that is part of our humanness. In the book, "Sick Girl" the authors singular journey of being the oldest surviving heart transplant patient was to me the ultimate realization that wearing a mask to hide your pain from others alienates you from their affection, acceptance and love. She spoke of wearing the veil over her face at her wedding as something that allowed her to hide, literally and figuratively. She wanted everyone to see the fairytale, the beautiful bride and not the "sick girl" behind the veil. She spent her life hiding behind the outward shell of who she wanted people to see, the strong, undaunted young women who was surviving longer than anyone could have imagined. Yet inside she was angry, lonely, isolated by the same skill that had allowed her to survive. She constructed an emotional prison for herself, and was pissed that people didn't get "it".
This post in is no way saying that it is easy to live an open life. Most people just want to know the good stuff...the sunshine days. If we are brave enough to share the rainy days too, our connections with people may for the first time be deep, spiritual and uplifting. The may feel brave enough to share their story with you. Then you both can finally see each other, mask free with the warts and all.
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