Sometimes I forget, yet I can never get used to this sensation. Six years I have lived with this; a second shadow present in the light and alive in the dark. A new normal should arise after six years of living with the symptoms of Devic's Disease, yet it has not and I'm not sure why. Time heals all wounds despite this ever-present sensation, a second shadow pressing down on me. Today I am healthier, stronger, smarter and more grateful, however I can never get used to this sensation.
Tuesday afternoon I ran into the forest with no goals. To breathe and smile was the only expectation I placed on myself. The trail was dry and soft, the air was sweet and fragrant, the sky blue and still. The sights were magical; colors blossomed around every corner while wildflowers and fallen leaves of multicolored rainbows lined the trails. BREATHTAKING.
Earlier Tuesday morning I asked for help on how to organize raising money for NMO (the short name for Devic’s disease). The idea is simple: I will use running as my tool to promote charitable donations to NMO research. The response I received from this Facebook request was overwhelming, my inbox started to fill up instantly. I was taken aback by the immediate influx of help. Grateful is to small of a word to convey my thanks, nonetheless it's the word that I will use. Deep bows of gratitude to all of you. You have changed my life.
I can do this. I can push myself further to show others that you can live a healthy life with an incurable disease.
After I complete my first race I wrote down these words:
“I ran for those who could no longer run, walk or even move much. I ran for those who live with this disease in different stages of progression to show that it could be done. That you could do this...or walk, or jog around the block. In disease, as in life, it's hard to heal the mind if you do not heal the body first.”I ran fueled by you, the reader, the responders, to my request and it felt good to know where the energy was coming from. Then it happened.
In Zen the word “Kensho” literally means seeing one’s nature, one’s true self. I had this peak experience while running. In a brief subtle moment I knew that I was doing the right thing with my life. I am moving in the right direction. I experientially felt the connection to you, the energy, the flow moving between us all. It may sound silly, but to me it was a significant insight of oneness with all. A transpersonal state of interconnectedness; I felt light and motionless as I ran forward. I smiled, I giggled, my eyes became teary and I knew this was a truth. I experientially felt this to be true. It was short lived, 2 minutes or less and it was subtle and magical...and then it passed.
It was heavenly yet nothing special. I did nothing to bring on this state. It felt magnificent to know that I am moving in the right direction.
Sometimes I forget, yet I can never get used to this sensation. Those words run deep for me. The journey of living with a disease is a mystical bugger of an un-natural world.
I often wonder if I can run further due to the fact that my leg are numb. Maybe I can not feel the pain or the tiredness that comes from running. Maybe that is my gift; to be able to do something I would have otherwise never attempted.
In the winter of this year I walked with a cane. In autumn I ran 10.7 miles for the first time in my life. It felt good. I came out of the woods knowing that I could have gone further. Today as I write this there is no soreness or discomfort in my legs (or body) at all.
November 13th I will run a 22k (1/2 marathon) trail race in the woods of North Park in Pittsburgh PA.
I will be asking for and raising money for Neuromyelitis Optica (the long name for Devic’s disease). Please join me on this journey.
Epilogue (I hope to be ending many posts with the below statement)
I never wanted to talk about my illness. Still don’t. I do not want to be a person whose life is defined by the diagnosis of a disease. I want to talk about the lessons learned from living with the disease. These are no lessons or medical advice or tips or tricks to wellness, nor are these suggestions on how to handle side effects from medicine. These are lessons about putting in the effort.
My goal is to help others lead a life filled with health, creativity and simplicity infused with the “heart of a servant” and the “strength of a fighter”. And that takes practice.
I invite you to join me in this journey. Please pass this along if it inspired you. Facebook this, Tweet this, e-mail this to friends and family struggling with these diseases.
