Our Stories…

I’ve just finished a late night chat with a young person diagnosed with FTD/Picks. Healthy specimen of a human, daredevil, entrepreneur, philanthropist; earlier listened to a the daughter of a woman who was a judge, another whose father a professor and linguist. An athlete of world renown. A mother of 3 young children diagnosed last year, whose husband just left her.

The thing we all have in common, besides this damned unknown disease, is our work ethics, our intelligence, our career paths, our life successes. And trying to remember if we ate lunch, or took our meds.

Lawyers, accountants, physicians, musicians … it seems like the more we pushed our brains, and stretched them to get that last project done, wrap up that final paper, meet that deadline, well it’s like our brains have finally snapped. Like we broke them somehow.

We thought it was stress, no, maybe depression or anxiety, plain exhaustion or insomnia. But the lethal mix only threw us from finding the truth earlier. Not that it would change the course of things with our disease. It will consume us, some in a matter of months.

But I would not have waited to enjoy life more. One more customer or one more Catholic won’t matter in the end. But I let my quality of life sift through my hands thinking if I worked just a little harder, a little longer, then ‘someday’ I would catch up with my family and friends. Someday I would see Europe, or Lexington or Indianapolis. I would have enough money. I would spoil my grandchildren. I would have made my mark on the world.

And I guess what I am saying is any marks I was going to make have been made. I will have to be satisfied that my trips get me to the grocery store, maybe not Italy. My world has become smaller. Quieter.

But I am not giving up. That’s one thing I never have been good at: knowing when to say it’s over. And I pray for all who have touched my life on that thing called Facebook and now through this blog.

We are alive!! Just by communicating we are saying we are still here. Not done. Not through.

xo, Vicki

The story of the rainbow is that it was God's promise to Noah that there would be no more destruction to the earth, and a dove brought back an olive branch as a sign of hope, of peace. Even though life looms barren, it will be laced with the colors of the love of my family and friends, and though I lose everything, I will still have more than I could ever, ever hope for.

Permanent link to this article: https://vickisvoice.tv/2010/02/our-stories/


  1. As your family, friends and professional colleagues will attest, you’ve made many important marks on the world. But you’re not finished! In fact, the new marks you’re making now in your quieter world are among the most important in your life. One by one you’re finding other people affected by “this damned unknown disease” and sharing your life with theirs. You’re talking with them, connecting with them online and communicating through e-mail.

    Through Facebook and your blog, you’re telling all of us what it’s like for you to live with this disease, and hopefully reducing at least some of the stigma and awkwardness associated with dementia that so many people feel in our society. Through your notes about FTD and all the wonderful things you’ve written online about personal and family memories, you’re clearly showing the world that you’re very much alive and enriching each of our lives.

    From your quiet home, you’re reaching minds and hearts at the times they need it most. And we’re able to reach back to you even when we can’t be with you. I believe this time in your life is more special and important than anyone can imagine. You’re alive. Not done. Not through.

    • Anna on February 8, 2010 at 9:49 am
    • Reply

    The rainbow signifies that God would not make another flood. It was a sign for Noah. We will still have natural disasters but the world it self will not be flooded like it was in Gen. 6:14

  2. Thank you, Anna, for the correct interpretation. I was using the symbol as it has come to mean for so many of us. I hope God foresaw that we tiny Noahs need a sign of hope, too.

    I’m glad you pointed that out, because it may have sounded like God had fibbed. ;o) Blessings, Vicki

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