As a child I would line up all of my stuffed animals and dolls against the walls. I would take the fun school papers Suzette would bring home to us from her class room and place them in front of each pupil I had designated as my own. Hours turned into days and Holly and I would play school for entire weekends. Our students would nap while we slept and would find themselves in trouble if their work was not completed properly. I look back now and realize how much we actually taught ourselves as we completed assignment after assignment for our students. Of course we had the few troublemakers in our class and their assignments would be marked with scribbles and we would have to lecture them on the importance of understanding and trying their best even when their best was out of reach.
I grew up surrounded by education and my sister and I both thrived in school, well, at least when we wanted to. I lived in a home where C's were unacceptable and were reason enough to limit our activities. As a child it felt as though the world was ending but as an adult I look back fondly and realize the birth of courage and the art of never giving up was in those moments. I carried that feeling with me as I grew up and grew into adulthood. Challenges were thrown in my direction and I either ducked out of their way or allowed them to hit me head on only to push back until they no longer existed. I had no idea that the actions of my parents and their high standards would prove to give me the most strength in a battle I would fight everyday for the rest of my life.
Once I realized something was wrong and as I struggled through the first few years of tests and medical exams I would put on a brave face for everyone around me. As my loved one left the room as the tube entered my spine so they could throw up I just chuckled to myself thinking what a wimp!!!!! If I can handle this anyone watching should also be able to handle it too!!! Later the same long needles would enter into my scalp for treatments and no one, I mean no one was allowed to flinch in that room with me. Strength and courage was demanded of everyone around me as well as myself. If I had to muster the courage needed forward from below the fear than everyone else also had to be brave in my presence.
There are certain defining moments for each of us who suffer in silence from a disease that no one can see but we feel to the core of our very being. They are moments that send you off on your path of acceptance or defeat, joy or constant sorrow and grace or pure humiliation. My moment presented itself very early in my testing before my diagnosis. I worked with babies and my co-workers were my friends. One special person in my life was going to school to be a nurse and she knew even before I knew that my life was going to be forever changed as she ran through results with me week after week. Finally the words of my fate were whispered.......Lupus. I walked into my classroom and someone asked her how she should treat me after this......as if I lost my hearing. The answer was so simple and clear. She was to treat me today as she did yesterday and tomorrow will come and Lupus will not leave so everyday she had to remember who I was before Lupus was in the files of my life. That person did not die. She was right in front of them.
I have emotionally grown stronger over the years and have had to learn a lot of heartbreaking lessons about others in my life. They have entered and left but Lupus has always and will always stay. I have cried a river and stared into the space that fills my thoughts. Self reflection is something done everyday and self inventory is necessary in order to still see my chosen path of hope, courage and grace.
I realized very early that my path to becoming a teacher would no longer be supported by the body that I reside in; however, I am a teacher everyday. I smile at strangers when our eyes meet. I tell my family I love them everyday. I snuggle the little ones in my life until they cry for release. I listen to the doctors very carefully but remind them compassion is just as important as diagnosis. I am not afraid to tell anyone I have Lupus knowing that a deep conversation is the only direction this will take. Most importantly I teach myself the hardest lessons in life. I remind myself that it is important to love oneself through the pain and tears. I will find people who have no compassion or loose it overtime and in order for me to stay on my path they must exit my life just as they entered it. My body does not always work the way I want it to but everyday is an adventure even when I am not able to get out of bed because of that path I chose to go down. When I am sad I think of the standards that I have set for myself and all I have to do to be reminded of my chosen path is to look over the edge of the bed to see it lined with flowers grown with acceptance and love, hope and courage and a dash of silliness and laughter that only those blessed to be a part of my life recognize.
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