I used to write, like all the time and on anything I found laying around. It sometimes annoyed my mom, but usually only when I grabbed something of hers that was umm, well, important.
Now, I am lost. And along the way I lost my thoughts and my words. I tried, for awhile, to catch them with nets, but too often I wasn’t fast enough or became distracted and forgot what I was doing, or why.
Alzheimer’s is a terrible beast. I really think they should call it something else as it seems wrong to call something so horrible after someone who probably wasn’t.
I am 56 years old and will turn 57 in November. They started me on medication for this in September, 2007. I was 43 and had actually started having trouble, noticeable trouble, maybe 5 years earlier. Though when my mom sat down and really thought about it she realized I may have started showing signs in my late 20’s or early 30’s.
Me, I really wouldn’t know the earliest. I had an exceptional memory. One some might have even called a Hyper-Memory. Looking back, right now at this moment, it’s almost an oxymoron. If that is the right word.
My life is nothing like it was and nothing like I might have imagined it would be.
Recently I woke from a nap and the first thought I had was, “Why is it light?” Then I tried going back to sleep because I honestly felt as though I had lost something, it felt like I was missing something in me. That feeling never left. So once again things changed.
Now I wonder will I go to sleep and always wake up so different I feel it? Will a day come when I wake up I am no longer there? No longer me?
I’ve managed to stick around longer than I thought I would, but recently things have speeded up, considerably. And that is frightening. Just a few days ago I couldn’t recognize my husband and barely recognized my son. Needless to say that day was a real bummer.
And it isn’t getting better. Of course, with Alzheimer’s, you never get better. It is a one way trip to oblivion and you have no choice in how you go. Or whether you go. It lets you know, very much so, that you are not, nor were you ever, in control of your life.
Sleep is a welcome escape. One I never thought I would ever welcome or use. It is so welcomed the further I go along this nightmare. My dreams are seldom as scary as the world is right now. Actually, considering the way things have been going for the last 4 years I imagine a lot of people are saying the same thing, all for different reasons.
For me the nightmare will end, I just can’t say when and I won’t know when the end comes most likely as I, the ME, the person or being I am, would have very likely checked out long before if recent events are anything to go by.
I used to write, A LOT! My mom called me a true artist. More than a wordsmith, though there were many who called me, and still do. She said she could here the sounds I wanted people to hear, she could here the music, see everything I described and felt everything physically and emotionally. She called me a true Artist.
Right now I feel like I am walking through an enormous home or maybe a museum/ library/ music hall with everything I have ever written, or drew somewhere in the place filling it to overflowing. With music, songs, stories, poems, paintings, drawings and so much more. Colors and sounds fill what isn’t filled so there is no emptiness. I am so overwhelmed I don’t know what to do.
I have no idea how much longer I will be on this journey, or for how long I can ask you along with me. I do thank each and every person who has travelled this difficult, yet amazing, journey. I thank you with every fiber of my being. I will carry all of you with me in my heart always. Even when it seems I have forgotten everyone and everything, I will always have you tucked safely in my heart.
Love is strong, stronger than anyone realizes and it carries us through what we think might destroy us. It keeps us safe even when we think we aren’t and is there for us when we feel like there is no one anywhere who cares whether we live or not or ever did. I will be part of that, part of you.
So, even if I stop writing, remember, I am still here, somewhere even if it isn’t “HERE”.