I spent yesterday afternoon reading on the sunporch and got into a really good story (written by woman with a PhD in neuroscience at Harvard) about a woman and her experience with early onset Alzheimers. I am in no way saying that I have experienced the devastating losses the main character experiences living with a brain ravaging condition, but about mid-way though the book I burst into tears. Guess I could relate to her early indicators that something wasn't quite right. I share her frustration at not remembering things that she knew deep in her bones, at missing out on the life she could have lived and the frustration the people she loved expressed about her limitations. Some were in denial, as in, oh, everybody forgets things. Or, if you get help it means you are "giving In" to your condition and not fighting back, or worse yet, you're getting lazy. Part of the reason I got upset was that some of the tougher comments Alice's family expressed, I've said to myself! It's that inner voice I want to quiet when it tells me how it really is and what I really have lost. I want it all back and I want it NOW! Enough already. Can't I just wave some magic wand and make this all go away? Can we just pretend this has been a bad dream and I am about to wake up to my old life?
I seem to fly back and forth between two polar opposites. There's peace and acceptance when I face fibro with an eye toward making the best of what I've got and with the optimism to think it can get better. And yet on another day I can feel pure despair. I don't want to be like this. I don't. In my down moments I am frustrated, annoyed with myself, sick and tired of being sick and tired, and not wanting anyone to help me with ANYTHING!!!, thank you very much. I am capable and I can handle this (maybe?). Some days there aren't enough words in my vocabulary to express the ups and downs that I feel because my days are so unpredictable. "Take it easy, don't do too much, you should rest, how are you today?" All reminders that I feel "less than". I love that people are so caring, but it seems that every moment of my life is infused with fibro and I love those times when I forget it's there and I can do exactly what I want to do, for as long as I can do it.
Two days ago I was feeling appreciation and acceptance. I was happy with my life and saw fibro with an eye on potential. I still am happy with my life and the opportunities I have to live it well. But then I read that book, Still Alice and I was once again faced with the fact that yes, the essence of me remains the same, but my expression of who I am is what gets limited. Yesterday I lost my voice, maybe what I needed was a good rant to get it back. Sweet and happy, loud and grumpy - it's all me. I have to hold onto the thought that this is where I am and that's that. I can be somewhere else tomorrow - but if I am going to love myself in a way that empowers me and encourages me to grow - I have to love it all. I'm feeling a bit better after spilling this all out and it's time to go to work. It's just another day and I'm Still Diana.
I seem to fly back and forth between two polar opposites. There's peace and acceptance when I face fibro with an eye toward making the best of what I've got and with the optimism to think it can get better. And yet on another day I can feel pure despair. I don't want to be like this. I don't. In my down moments I am frustrated, annoyed with myself, sick and tired of being sick and tired, and not wanting anyone to help me with ANYTHING!!!, thank you very much. I am capable and I can handle this (maybe?). Some days there aren't enough words in my vocabulary to express the ups and downs that I feel because my days are so unpredictable. "Take it easy, don't do too much, you should rest, how are you today?" All reminders that I feel "less than". I love that people are so caring, but it seems that every moment of my life is infused with fibro and I love those times when I forget it's there and I can do exactly what I want to do, for as long as I can do it.
Two days ago I was feeling appreciation and acceptance. I was happy with my life and saw fibro with an eye on potential. I still am happy with my life and the opportunities I have to live it well. But then I read that book, Still Alice and I was once again faced with the fact that yes, the essence of me remains the same, but my expression of who I am is what gets limited. Yesterday I lost my voice, maybe what I needed was a good rant to get it back. Sweet and happy, loud and grumpy - it's all me. I have to hold onto the thought that this is where I am and that's that. I can be somewhere else tomorrow - but if I am going to love myself in a way that empowers me and encourages me to grow - I have to love it all. I'm feeling a bit better after spilling this all out and it's time to go to work. It's just another day and I'm Still Diana.
Lately, I have come in contact with so many people who lost so much or have so much to lose.....your fighting back strong not letting it beat you...WAY TO GO...I still like Diana and I'm glad your still you!!!
ReplyDeleteThanks, Dawn. I think the part of the book that hit me hard was when the character, Alice had to give up teaching. Working with kids and teachers was a great love of mine and it was hard to say good-bye to that part of my life. I could relate to the Alice's disappointment at leaving her profession. I could also relate to her lack of confidence in herself standing in front of her students and not being able to trust her brain to pull out the information she was sure she knew. The rest of it will all balance out, but I will always miss that part of my life.
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