I might have gotten ahead of myself with this blog. Most of those I think who originally came to this blog, I assumed knew me already. I am learning that more and more are coming here who don’t. Let me catch you up.
I am a 43 year-old-woman who is on disability for suffering from neurocardiogenic syncope with dsyautonomia. Basically, for no known reason other than poor genetics, I have an Autonomic Nervous System that does not function properly. The list of symptoms this disorder combination creates is crazy long. More trouble some is the inconsistent presentation of the disorder given the inability of medical community to really understand the mechanism behind it. It is just easiest to say my autonomic nervous system is fucked up, in the crapper, completely dysfunctional.
This cause me to understand that my physical life is part of a cycle of periods of better wellness and worse wellness. At it’s worst, I will find myself hospitalized for periods of time to battle whatever the current presentation is of the disorder. At it is best, I life a daily life that is unperturbed by the disorder and only I would know I had it, if I didn’t write about it on line.
Despite being disabled, I am a reverend with a small congregation and community that I strive to serve. For me, this is my calling and how I reach beyond the confinement of illness to make the tokens I have every day count toward a greater good. I am also a writer. I have always been a writer of some form, from back in college as a journalist to know as a published author of non fiction blogs and books around spirituality and family, spirituality and disability, spirituality and trauma, and spirituality and leadership. Of courses, my first role I play is mother to my almost an adult son and owner of Alice, the Service Dog.
I started writing and talking about A Token Life years ago when my health took its first severe downward turn. That turn changed everything. I lost my first book contract. I lost the ability to hold a full time job. I lost the ability to drive whenever I wanted to. I had to get Alice just to have some semblance of a life. I had to apply for disability to find a way for my family to financially make it through the loss of my income. Mostly, I went from being a balls to the walls kind of woman. I used to coordinate weekend spiritual retreats for hundreds of people. I used to be in a constant state of motion that produced a high level of successful work. Then I was suddenly not.
I was not capable of ever hosting a large spiritual retreat again. I was not capable of sitting up to finish edits on the book I had sold. I was not able to stand without passing out. I was not able to cough without passing out. I was not able to laugh without passing out. I was not able to regulate my body temperature. Suddenly the Southern Summers were times where I hid in air conditioned places instead of being out camping and hiking. I went from having boundless energy to having constant, debilitating fatigue.
I was lost.
Sitting in the bowling ally on my son, Sam’s, birthday, I watched Tony, my husband, count out the exact same number of tokens to each of the boys attending Sam’s party. I watched them fist those tokens and run en mass to the in house arcade. It then occurred to me.
I got up and life – the physical limits of neurocardiogenic syncope and dysautonomia – gave me less tokens to live my life physically than my husband or son got – two healthy people. When I entered the daily arcade of life, I was not able to play the arcade games the way I used to. I was only able to play a limited number of games and so I was very choosy about what games I chose to play. I was living A Token Life.
Since then, the language of tokens has been common in my house hold. Recently, some of my newer friends have started to use token language when talking to me, which has really warmed my heart.
Instead of getting tired, because I am always tired, I would run out of tokens before I was able to make dinner or grocery shop or other daily activities. I began to wake up and mentally ask myself how many tokens I had and compare that with what I wanted to do today.
Of time, I picked up lots of little tips and tricks that I use to help keep my having more good days than bad. I then started meeting other Token Lifers – people whose physical life, like mine, afforded them less tokens than they used to get and less tokens than most others get. That is how this blog came into being.
I hope by writing about my own struggles and the things I use to overcome them, I can inspire others to develop their own Token Life. A life of great abundance and meaning developed as an act of defiance against a physical life of limitation.