Saturday, August 18, 2012

Why? Part 1: Alzheimer's Disease

Why?

There are a lot of reasons for one to set off on a  voyage like this - to escape the grind, to relax and check out, to have a great adventure, to see the world. We want to do all of those things, but there are a few other reasons that are even more important to us than those. 

My reasons began in the year 2000, when my mom began showing signs of early onset Alzheimer's. I remember noticing her first signs when she was under 50, so my parents were still quite young. My Dad had spent nearly 30 years working so hard to save up a nice secure nest egg so that one day they could retire early at age 55, take off on the Harley, and have a grand adventure. 

That never happened. Instead they spent nearly $1,000,000 over the next 10 years for my mom's care, without the benefit of Social Security, Long Term Care Insurance, Medi-Cal or any other support network other than my parent's life savings.

A lot of sailors plan to cruise when they retire. I feel like waiting until that 'someday' comes is a true gamble. All we have is now. There are no guarantees, even if you don't have early onset Alzheimer's in your family, or cancer, or .... We will never have enough money, enough time, enough stability in our careers, and we will never feel 100% ready to leave behind our beloved friends and family, for any period of time.

When my Mom was diagnosed, my whole idea of how life was going to go was shattered. At the time, I felt helpless, sad, scared, angry and alone. No one I knew had an ill parent, and finding my way through all of that pain was a tough journey. 

My mom had always said that everything happens for a reason, and I searched for that reason. and I found a few. 

1. As a family, we fight!
Alongside my father, my sister, Rob and my community, we dedicated ourselves to fighting for future generations, and raising funds to combat this disease, and support caregivers. 

We are stronger for it, and the difference we make is concrete. We have power, in the face of tragedy, and we put our energy into this fight, rather than into our own sorrow.

Our family has raised nearly $200,000 in the past 10 years, through the Memory Walk and our annual Chili Cook Off (today), through the Memories in the Making event, and the Reason to Hope event. My father and sister have gone to Washington to advocate for increased funding for research, and these efforts have made a difference.

My sister works for the association, and runs a support group for other families dealing with early onset Alzheimer's disease. 

If you would like to support our cause, and Help Me Raise Funds to End Alzheimer's Disease, any and all support is greatly appreciated.

2. I learned young that Your life is NOW!

In the famous words of the worlds greatest rock star, Jon Bon Jovi, 

It's My Life
It's Now or Never
I Ain't Gonna Live Forever
I Just Want To Live While I'm alive
It's My Life

This deep understanding of the importance of being true to myself, of
living a life I love, and of making a difference on this planet while I am here, has guiding so many choices in my life.

I married who I loved, despite the fact that many people had pretty grave concerns about the artist I chose.

I quit plenty of good paying jobs, without a clear next steps, when the atmosphere became toxic or unsatisfying.

We adopted children some considered at risk, and focused on their talents, not their past or the unknown consequences of that past that may show up some day in the future.

And we are going to go cruise Latin America and the Caribbean in our 40's, with our kids, volunteering our time, talents and our hearts to making a difference, and being present to the miracle of community, life, our planet, nature, and humanity.

These are the profound motivators for my decision to pursue this dream with all of my attention, NOW.


Thanks for reading
Shannon














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