Today was a black day. I didn’t want to harvest on my FB farm, or cook in my virtual cafe. I didn’t do the exercises I desperately need to maintain my “buns o’steel”, and learn to walk better. Living with this disease is a quiet thing. I have days, like today, where I can’t move at all. There is no energy. Great apathy, though. There is no muse to say “knock this shit off.” And so I watch the morning sun fade into grey, then darkness. Unable to move. Unable to Facebook. And I wonder if I should photograph every wall and space in my home, so when I am in a foster care home I can say “this was mine, and I earned it. And I loved it. Or, “this was Gus, my dog before that great fall down the stairs.” And the frozen annuals and perennials on my deck would have been amazing this last summer, or next spring and for all springs to come after me.
I once had a friend who would challenge me and make be silly. totally playful, but they are gone. Maybe it’s my disease, maybe it’s my changing personality, maybe they are just too busy. He is gone, and much missed. My Muse’s droll humor, and Eeyore-esque mannerisms was what kept me trying. Laughing. But although I have a void, God has sent in new reserves, other kinds of muses.
There is an organization, The Association for Frontotemporal Dementias (FTDs), that has a page for patients and caregivers to blog. Mostly it is for caregivers. But there is nothing on the patient blog. I called two days ago. Basically by the time they find a diagnosis, it is too late to post for patients to post. “too late to post”. Facebook has what 400 million viewers? Isn’t there one person like me out there anywhere?? Am I the only one left who can write and speak?
From “What if it is not Alzheimers?” it lays out my future, which I had just rehearsed with my family while hospitalized. “At the end, they will lose the ability to speak, they will become mute.” There is no cure. There is no treatment. It sounds yucky. Social blunting, apathy, lack of compassion. I have a feeling I won’t be all that nice a person. I think the word I’m looking for rhymes with ‘itchy’.
My dinner lady who brought me a wonderful lasagna, said her cousin, in her 50s was diagnosed with FTD. In 6 months she was mute. In another 6 months she had passed, at 54. Not much time to tell a story. To ask questions. To go to a website and blog about it. I have been blessed.
I know I have seen miracles in my life. I know because I am living one now.
So far, I am a lucky one. Black days come to everyone, but it does remind me of “The Dark Night of the Soul” a bit.
As for the friend, guess it will have to be me sometimes. “So you have bad days. So, each pimple scares you and makes you wonder if it is ‘a sign’. You’ve had your pity day. Now look to tomorrow. Knock that crap off and live a life of believing all things are possible.”
The link to the Association is www.ftd-picks.org. If you know others who could use some support it is a wonderful site.