You won’t want to read this. Unless you prefer simple, plain talk. Straight from the heart. Unless you know that life is short, bitter and sweet, with the capacity for great joy and great suffering. And unless you realize, at some level, that it is the suffering in life that can move us to our greatest understanding and insight, reveal our deepest compassion, humble us, open our hearts and soften us.

My mother died of an early onset dementia that left her trapped in a body that no longer functioned. She started showing early signs of the disease at age 50, slowly declined and died at age 64 in a nursing home, an empty shell of the vibrant, compassionate, beautiful woman she had been. This disease, Frontal Temporal Dementia, is rare – just not in my family. There is a 50% hereditary link for us. So, since my grandmother had the disease, my mother and her siblings had a 50% chance of getting it. Since my mother had the disease, my sisters and I have a 50% chance of getting it. And the diagnosis comes with a death sentence since there are currently no treatments and no cure.

Could there be a blessing buried in those odds? For me there was. As I began to internalize the idea that I would be really lucky to be still functioning at 50 a sense of urgency settled in. I started my own business which had been a goal I would do “someday”. I took more risks. I deepened my relationships. I took seriously my spiritual path and practices. Basically I started to take better care of me and those around me.

A few weeks ago after dropping my daughter off at school I came to the end of the driveway and wondered if I should turn right or left since either way would get me to work. As quickly as the question arose an answer appeared, “whichever way will wake you up.” Sometimes things in life appear, uninvited and unwanted – like an illness, accident or unfortunate circumstance. We get to choose whether it will put us further to sleep or wake us up. Frontal Temporal Dementia, for my immediate family and my aunts and my cousins, has been a wake up call.

What’s yours?

Kathy Cleveland Bull

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