July 10th, 2013 I wrote a blog post titled "The New Normal Life with NMO", which in a nutshell was about living with a disease that will never give you a normal type of lifestyle. Ever. Upon first publishing this post I thought that it did not resonate with my readers. For days it sat virtually unread, but weeks later it found the people who needed to read it. For over 6 months now I have been slowly receiving e-mails and comments about the article. By December I felt that I had done some good sharing my words.
When I wrote it, it was my swan song about disease writing. I wanted to walk away from thinking, talking and explaining what life with NMO is like. For months I went silent; quietly rehabbing myself back to life.
For me: My new normal is living in rehab mode.
My body, at times, mysteriously slows down. Muscles become fatigued and week, balance is off, mind clarity is diminished and other random whatnots magically seem to strike me down.
What do I do? I get back up, daily. I am very good at getting back up.
Professional rehabbing is what I have become good at. At times I feel cursed to be a rehabber for life. I am good at getting better. I have written the words countless times that you can be a healthy person and have a disease. A disease is a condition you must live with. Good health is a decision you must make. I made the decision to be a healthy person who has a disease. I have lived my words as true as I can possibly hold myself accountable to them. I have succeeded, I have failed, I have gone the distance and I have come up short but every day I have played the game.
And then I went to a funeral.
That's where I learned how to live with my even newer normal.
I have been chasing death longer than anyone my age should. I read books. Volunteered at a hospice. I sat with the dying. I prayed with the dying. I have romanticized the notion of being present at death. I am in fear of death.
I can remember being in a philosophy class in college (I love writing that; it makes me feel more worldly than I actually am). The class had the existential exercise on talking about one's own death. The majority of the class spoke about no fear at the moment of death. For me, at the time being Catholic and new into Zen, I wasn't sure which scared me more: the "Emptiness" of Zen or the "Form" of a Catholic afterlife. I called out bullshit to the class. The idea of accepting one's own death (even at the young age of 19) never sat well with me. That memory of that specific conversation sits in my soul as a ghost waiting to find its way back home. Home, be it the white light or the black cave.
I sat in a church pew one day, before this past Christmas Eve, attending the funeral of a man who lived a good life. A man who died with love in his heart for his family and friends. He was a good man and he will be deeply missed by all that knew him.
The Priest spoke about his time sitting with this dying man. The Priest shared with us in the congregation his last conversation he had with him. These are his words as best as I can recall it.
"Father, I do not know how to die. I can see a white light but the Devil is blocking my way. Heal me or take me God. Just RUN THE PLAY. I will do your will."
For me, this is all the advice I will ever need. You can build a library of all the world's philosophy and never say a thing as strong as those words. A lifetime of wisdom spoke out loud before walking into Heaven. This is what is meat by eternal life and eternal love: his words, lessons, compassion and love will live on past any of us reading this today...and that is a very good thing.
With his words "RUN THE PLAY" I now know what to do. I know now how to live with a disease.
In the past I have used the phrase "Do not give up on being human". My life experiences brought me to those words. That is what I have learned and have shared with you. Those words still ring true for me. All too often I see people with a disease choose not to live, choose not to place effort into their health, choose to give up on the life that they thought they were going to have. They choose not to RUN THE PLAY.
I want to RUN THE PLAY.
Whatever darkness (disease) may get in my way I am going to look for the light (effort & health). I am not going to sit on the sidelines watching the game go by. I will continue to not give up on being human until my soul reaches the other side.
I want my last sentence, my last breath of life to be that great...to inspire, to heal, to motivate others to live a good life. That is a legacy. That is divine. That is RUNNIG THE PLAY!
What do you want your last sentence to be?
