Play the Disability Card

About the Book

Disability is synonymous with pain. Learning that you have a degenerative one (after 40 years of "good" health) is traumatic.
What's it all about? Will it affect my children in any deletrious way? My brothers?
You can't hide. You can't do shit. All you can do is watch your body deteriorate and hit the pavement!
No help. No change. No control. The disability knows where you live.
Who knows? Who cares? It's just Ray. Have a good life.
The cycles of life are pretty consistent. Of every…
But not for the "handicapped"
Life is just a perpetuation of the same every second of the same every minute of the same every hour of the same every day of the same every week of the same every month of the same every year
Life never changes.
Life never changes. It merely passes you by.
The pain, the fatigue, the frustration, the embarrassment, the humiliation… That's life as "we" know and feel it.
It never changes.
The trauma never lessens. Never. It just gets worse.
All you get is the card so you better play. It's all you can do.
The fatigue
The physical and emotional loss
Of years gone by, of friends and family having said goodbye, of too much guilt, of too many fears, of too many questions why.
Why?
These are the thoughts and words of this disabled author.
Why?

About the Author

My name is Ray Church. Being the first of four boys (my poor mother), I was born in the 1950s, August 5, 1952 to be exact. This all took place in Malden, MA. Living in Salem MA, I've called the North Shore home for over half a century.

I have two beautiful and talented sons, Aiden (captain of the baseball team) and Kinnon (a multi-instrumentalist). This is about them and all the children.

It's all about the children!

My disability is called spino cerebellar ataxia (degeneration), a neurological condition affecting stamina, balance, and mobility. I was diagnosed with this disease in the mid 90s. The onset: Some doctors say mid 90s, some say it's congenital and some can't say at all.

??????????

You have what is called a gene mutation (whatever the hell that means).

THEY obviously don't know.

These are the intimate thoughts and feelings of this disabled author about life, disabilities and the attitudes of the general public towards the disabled.