Wednesday, January 29, 2014
Time is My Enemy, While I Still Can
I don't have time. Anyone who has dementia has this problem. To those of us that are still in the early to mid stage of this disease we know this.
It's something we face every day of our life. Time. Time indeed is slipping away. And it is that very time that most of us can't even deal with.
Time to me is now, right now, today, this hour, this minute. I look at the clock and it means nothing to me. I look at a calendar and its the same thing. Meaningless.
"Time is my enemy". One of the things we wrote Dan Mitchell wrote in our song "While I Sill Can..."
"That's why I'm living for right now. Tomorrow just to far to think about, my heart only knows one task..."
It's that very song that tells the story of dementia without ever mentioning the word.
I wish that song never had to be wrote. I wish that this disease was indeed a memory, instead of stealing ours.
Everything you do today is because you remember and planned for it. You took "time" for it.
The very thing we as patients have all been robbed of. "While I Still Can..." began as a phrase that I used way back in the beginning of this journey.
I knew then and know now that my time is limited as to what I can/could accomplish.
Doing speaking engagements was very important to me. Time stole that from me. The same way with the video's I once did everyday. Time again stole them from me.
Writing the book, "While I Still Can...' indeed took time. I knew I had to do the book when I did, because time was escaping me. It took me over 500 hours of recordings to do the book.
Recording I had to do cause I simply could not remember from day to day where I was at in the story line.
The book itself is about my journey with Early On-Set Alzheimer's Disease. But it is mostly about time. Time I lost with family, with my friends, with my self.
I hope you have taken the time to listen to our song, and have indeed read the book. The time it will take you to do will be helpful in the care of your loved one.
I have posted here the first studio recording of "While I Still Can..." Dan didn't want me to release it, cause it was the first time he had sang it in the studio.
However, it is so powerful. Without the backup singers, and with the full studio musicians I had to share it with others. If you haven't seen it, take a minute to watch.
My friend Dan Mitchell gave me a gift in writing this song, putting pen to paper. Something I will forever be grateful for...