As a little girl you always want to be surrounded by love and friends. The thought of not being accepted by those around you can cause so much heartache and loneliness in a world you are learning to navigate through. I always thought that the worries of acceptance and longing to be a part of something would diminish as I grew older. The little things in life would wash away and would leave a clean slate to start over with in my big girl shoes. Hope filled my heart as I struggled at times knowing that through growth, experience and knowledge I would learn to leave behind heartache and only embrace what was right for me. This may have been a little girls dream that would hopefully lead her into a big girls world. However, I have seen the insecurities and need for belonging continue in my life over the years. I have grown older and I truly feel wiser in some aspects of life but the need to be happy, wanted and loved has not changed and will never leave and will always be a longing I feel in my heart.
One thing did seem to change as I grew older.......I became sicker and sicker more often than not leaving me with so many questions and fears that clouded every moment of my life. As rocks were turned over and answers were slowly collected it became clear that the life I had always believed I would have was not going to be. Life would show me the cards it had it store for me and new hopes, dreams and plans would need to be made. I would no longer be able to teach children and would need to look into a career that would not involve contact with germy germs. That lead me to numbers and I turned my constant love of everything landing on even numbers to an education and career in accounting. Living in a home with stairs became a constant fear. Falling down the stairs at least once every few months made it impossible to continue and off we went to a home with no stairs and a peace of mind that has allowed me to tip toe around my day without falls.
The hardest part of being sick is not what the disease does to me and my life but what it does to those who love me. I see frustration, fear and loss in their eyes everyday. I feel something in their heart that frightens me so much.......anger. Anger at what this disease does to me but also anger in regards to how this disease has changed their lives and what their future will look like. This anger is something I can not even begin to fix. It is not something I can treat with medication or cover with a band-aid. You can not rest it away or even become used to it. It something that has to be dealt with with gentle hands and an unconditional loving heart. In the end it is something I have to release to those feeling it and I can only pray for peace to overcome my loved ones and acceptance to fill their hearts. I must let go of the control I long for and the ability to fix this and again find faith in hope.
Everyday I am bullied by my own body. I have doctors who have given up on me because of the lack of funds I have to throw at them. The system has let me down as a patient and as an individual needing help. I am learning to rely on my own internal instincts to treat myself. Knowledge takes me from day to day. Luck becomes what I wish for and look for around every corner. Acceptance is something I must try to fight with. Anger is something I must let go. Happiness and contentment has become my new best friend and loneliness is a constant visitor to my heart during the dark days when I find myself battling to move.
Through all of it one thing is constant in my heart and soul and that is hope. Hope has become the warm sun and the cool rain in my life. It allows me to grow and carry on when it is the last thing I want to do. It wakes me up every morning and drifts off to sleep with me every night. It is what i hope to leave as my legacy when I am no longer here. It is the beauty in my life and will always shine brighter than the anger I see around me in the world. It may be hard to find some days but it is always there.
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