April 26, 2009

Still Alice

I finished reading Still Alice today. Meagan said she was excited that I was reading it. Her book group read it last month. I'm curious what she experienced during her reading. I wonder how much she remembers about Granny.

Have you read this book? I think its fairly new. Maybe not, but I'd not heard of it till Meagan had it on her blog. I chose to read it because she recommended it. And then I read what it was about and I wanted to read it. Still Alice is the story of a woman who finds out at the age of 50 that she has Early Onset Alzheimer's disease. It is the story of her struggle and losses with the disease. And it is told from her perspective. Reading Still Alice, I was touched and terrified.

I was touched because the story was touching. It reached into me and touched emotions. I laughed a little, teared up a number of times, and got angry.

Deep down in my gut it terrified me. I feel disturbed. It re-awakened questions I haven't thought of for a long time, primarily, what if I have those genes? I can't remember how old I was, or what was going on in my life at the time that Granny started loosing herself. And I refer to it in that manner now because Alice in the book referred to it as loosing herself, and it truly was like that. I don't have distinct memories of when Granny first got sick. And when she was really bad, I wonder if we didn't go around much, because I don't remember details about that either. I was in high school when she didn't know who I was anymore, and I was in college when her body died. In reality, I don't even remember mourning much when she died. Honestly, she had died years before. The funeral I went to was for the body of a person I didn't know, a person who didn't know any of us. She was a stranger. I was sad of course, but the raw emotion of loosing a close relative wasn't there. I had lost her years before.

How much do you remember Meagan? Until recently I didn't realize that you had such different memories than I did. I didn't know 4 1/2 years could make that much difference in perspective. Do you remember her before she was sick, when she was sick?

Of the person with Alzheimer's, what I mostly remember is not her, but what her disease did to those around her, mostly my Dad and aunt and uncle, and my Papaw. They made the choice not to put Granny in a home. They took care of her themselves and hired a nurse when it was time. The disease that stole their mother from them one memory at a time drained their energy and youth. They always looked tired to me. And Papaw, who for the longest time seemed in denial, who insisted to Granny that she did remember. He was slower to accept things for how they were, and I think a little resentful at first of having the nurse coming to their house, and then later oh so grateful and relieved when she showed up, when he could escape for a little while to go sit in the kitchen of Dad's restaurant and get away.

I remember mostly stories I think, stories told of what happened, like my saint of a grandmother cussing. She never cussed. And when she still worked at the restaurant, or at least tried to help out, one of the ladies that worked there told me that Granny had seen me in the parking lot and told her "That girl out there sure is pretty" and the lady told Granny "That's your grand-daughter." Looking back, I wonder at the ladies intelligence in telling me that. I didn't need to know that my granny didn't recognize me. But at the same time, I'm glad she did. Its nice to know my Granny thought I was pretty, even when she didn't know me.
I guess my actual memories of her are of when she first started loosing herself, and then it skips everything in the middle and goes to when she was bed ridden, couldn't communicate, and wouldn't eat. I was old enough to remember. Maybe the disease stole my memories of that time as well as hers.

Why the book terrified me...
...because of the what ifs.

What if I have the genes?
What if I wake up one day and turn over and there's a stranger laying in bed next to me?
What if I sit down with a book, and find that I can't follow the story and have to re-read pages and passages and still can't finish the book?
What if one day I go to the grocery store and can't find my way home?
What if....

I know I shouldn't' be worried about it. My approach used to be that the family suffered more than the patient. That though they were loosing themselves, at least once the disease was well on its path of destruction the person didn't know it. At least I would be oblivious that something was wrong. But I was wrong.
I didn't consider that it can take years before your so far lost that you don't know anyone, and in the mean time you have these nagging thoughts in the back of your head reminding you that you've just made a mistake, that you've lost another piece of information. You might live with that for years. And I never considered the terror of living in a world of people you don't know, how frightening it must be to have people in your home, asking you things, requiring you to do things, and insisting on things, and you don't even know who they are.

And then I think, maybe it would be even worse to not have those strangers, the ones that you don't know, but that are there everyday, and that even though you don't know who they are, you can tell they care about you and that they are kind. What happens to people who don't have children. What happens to me if I get this disease, and Malcolm is ill too or already gone. Who takes care of me? Do I get tied down in a chair in some government funded nursing home somewhere? I know that's a totally depressing, self-absorbed, morbid thought. But I think about that sometimes.

That's why the book terrified me. Because there are a lot of real fears and threats in it for me. I agree with Alice. I'd rather have cancer, something that I could fight, something that I had a chance of winning against, even if it is slim. If I have to get something, I'd rather have something that's not a garunteed loosing battle.

I don't know if I'll get Alzheimer's or not. I hope not. I don't know what my chances are, but I seem to have always felt that they were high, considering Granny having it. I think I've had this niggling thought in the back of my head for years that I'll have it one day. I'm not going to sit around worrying over it, planning for it, thinking about that day. I guess if I get it, I'll deal with it then. But reading Still Alice was an opening of my eyes, a reminder that each day is to be used to its fullest. And though I may not remember what I do with them, who I knew, or even who I was, others will.

If I loose myself one day, I want others to have me still in their memories. And I want those memories to be worth holding on to for them.

I don't remember Granny much during the years she was sick with Alzheimer's. I remember my Granny fixing me bowls of frozen strawberries and peaches with sugar, Sunday dinner at her house after church, how she loved red, Christmas, and me. I remember climbing the apple tree in her yard, even though Papaw didn't like it, and her telling him to let us do it. I remember her gigantic pink rose bush, jumping on the bed in the guest room, spending the night at her house, riding in the car with her to the store, watching Wheel of Fortune and Dallas with them at night, and sitting on the porch with her watching cars go by swinging on the metal glider. My mind is full of memories of her, my Granny. She was a saint and one of my hero's. She still is.

1 comment:

Meagan said...

WOW. I am teary eyed. We had the exact same preception and emotions evoked from reading this book. I remember Granny before... the house on Ooltewah Ringgold (which is impressive because I was little) the plastic grapes on the dining room table and the prisms hanging from the living room lamps. I remember playing in "the cold room" and the big rose bush outside the back door. At the house on the hill I remember Sunday dinners, walking down to Couch's, big breakfasts, spending the night she always slept with me in the guest room, etc. I remember the time Daddy came home when she first got sick and was upset because she had made a BBQ sandwich for herself and put the tomato on top of the bun and insisted that is how she always ate it. I think that was the very beginning. I remember her "hospital" bed in the living room and her refusing to drink anything unless it was in a glass coke bottle. I remember daddy having to change her diapers. I remember.

Reading Still Alice gave me a whole new perspective. The possible perspective of the patient, of knowing. It's scary and I too wonder, and sometimes assume, one day I'll have it.

I really enjoyed your comments on the book. I am so glad you read it. It was so thought provoking!