Additional information
by Deborah Pausig (Author)
THE TITLE
An affair: I picture a black-tie event where Sean Connery, as James Bond, exits his Aston Martin wearing one of his delicious tuxedos. Not so today, the media and society have us programmed to think and picture otherwise. The simple word "affair" brings to mind connotations and the sensationalism of illicit sex. And then come the questions, so many questions. Who is the affair with? Is it the other woman, the other man, the job? Who is involved? What is involved?
An affair drives a wedge into a relationship creating a triangle. When was the last time you heard of an illness driving a wedge between a couple or family members? Ali McGraw's illness in the fictional 1970 movie, "Love Story", with Ryan O'Neal comes to mind. Two young, married, mid twenty "somethings", deeply in love, whose lives are interrupted by a wedge named "cancer." Trying to "protect her", he attempted to keep her impending death a secret. She, of course, knew better. Their affair with cancer was brief. Their love, however, was not.
An illness, especially a progressive terminal illness, affects life, love and intimacy. An illness can take a family BEYOND normal chaos and dysfunction. The knowledge of an illness, its lack of knowledge, the illness as a "family secret", the unknown history of an illness, the timing of first symptoms in one's life cycle and a long debilitating progression, are factors that feed the fire of chaos and dysfunction. What trumps all is LOVE. I'm describing the type of love that evolves from young, feel good, sometimes hedonistic, lust and fascination, to a deep caring that spans decades. Deep caring love transcends the mind, body and soul.It is that kind of love for a person in times of turmoil and heartache that life with the illness is worth remembering. It is the kind of love that can endure experiencing the pain of change. It is the kind of love that learns to accept and include an affair with a disease and grow in the midst of it. It is the kind of love that remains after the illness has taken the "life" of the love, not the memory. It is the kind of love that leaves an imprint in the heart of the survivor where it is stored forever.
The "affair" I speak of here is an illness. This illness is Huntington's Disease. The word "AffairЯ" in the title is deliberately spelled with a capital and reverse facing "Я." R is for remembering. When I remember, I look back to the past, not remain in it. I am remembering that my AffairЯ with Huntington's Disease is worth Remembering. This is a story that involves incurable love and intimacy during an incurable illness, Powerful; Yes. Was it worth the risk of heartache and monumental hard work to maintain and survive; Absolutely! There was no cure for Huntington's Disease for us and there still is no cure. Scientific research is working on this life stripping, progressive, inherited, degenerative brain disorder. There was and is no cure for the kind of love that inspires this author and graces the pages of this book. That kind of love, my dear readers, is best left incurable.
