Here's why:
The main reason is because I think that this book/movie sheds light on a subject that is not often talked about and very seldom discussed. Before this turn of events in my life I had heard of early-onset but I had no idea that it can strike people as early as their 30''s. It is a vicious disease. I'd seen what happened first hand with my grandmother, but hers was different and honestly I just didn't realize how fast and devastating it can be for a person in their 50's. Anyways I think it's so important that more people start talking about and truly understanding what this disease really is. More people talking about this can lead to more people searching for a cure and I like that possibility.
I also have an ulterior motive. I think that this book/movie is a good way for people to understand what life is like when you are living with someone with early onset. So many people have told me and other family members that we need to read this book. My response is almost always I LIVE this book ... but I hope that when you read it, you gain a better understanding of what my family is going through.
I want to just throw this out there. I've taken some flack for making comments about how I get tired of hearing that someone knows exactly what I'm going through because their grandparent had Alzheimer's at 75 or 85 years old. I don't mean to be heartless...I really don't. I just wish I could get people to understand. If my mom had developed this disease in her 70's or her 80's ... I wouldn't have loved it, but I could deal with it. It would still be ugly and horrible and devastating...but it would be different. She'd have lived her life and enjoyed watching her grandkids grow up and while it would be awful ... we'd make it.
We will still make it now ... I know that, but my mom is only 55. In the past year we have already lost so much. This disease has progressed so quickly. That means our good years are fleeting and that breaks me in ways I never knew I could break. My mom is going to miss so much. The hubs and I were talking the other day and I told him I feel like I am stuck in a never ending grieving process. But honestly that is what it's like. I'm grieving the loss of the mother I knew ... but she's still here. It's just all so hard.
Anyways back to Still Alice, here's are my thoughts, sort of random and thrown together, so take them for what they are worth - just opinions from a girl living this nightmare.
It was so painful for me to read what the main character was going through as she began to notice the trouble she was having. I saw so many things that I felt like if I had been paying attention sooner I might have noticed that! It was difficult to read about her struggling and searching for words and things she'd just always known. However, I think it gave me a really good picture of how my mom was feeling. It broke my heart into a million pieces because I saw in the main character my mother and I saw the fear and it just hurts to know that is how my mom feels so often and there is really nothing we can do about it.
I don't want to spoil the book/movie for those of you who haven't read it, but I will tell you I struggled greatly with "the plan." But I totally get it. Like more than you would believe. I totally understand what would cause someone to set up a plan like that. I think for us mom was already so advanced by the time she was diagnosed that even if she wanted to come up with a plan like that it would be too difficult. But I will tell you this ... on many occasions my mom has mentioned wishing she had a way out. The depression that comes along with this disease in and of itself is enough to cause that kind of thinking, but add to that the fear, confusion and devastation that the person is dealing with and you can only imagine.
Another part that was hard for me was that this family just ran right out and got tested to see if they had the gene. I'll be really honest this is a point that a lot of us disagree on. I for one think I want to know for no other reason than it will determine for me if the boy is the only birth child I have, if that makes sense. But then there is a part of me that wonders how I will live knowing I have it. It's something I think about A LOT and something that I go back and forth on, honestly.
The disease moved extremely rapidly in the book. Some people have argued that's not realistic. Honestly, I don't know what I think. I think that in the past year my mother has progressed so quickly it hurts to think about the future. I'm not sure how much longer I'll get to have her "with" me. So I'm trying really hard to just take every single day and make the most of it. I don't want to have regrets when it's all said and done.
So I know this is a lot of random thoughts, but overall I really liked the book. I won't let my mother read it. She doesn't need to read about the experiences that are to come. I don't want to put any of those thoughts in her head. However, I made my dad read it and I think on some level it has helped us both to be more patient and understanding (which is not to say at times it is not the most overwhelming thing ever, but more on that later). I do think it will give outsiders a better idea of what our life is like...then again maybe you have to live it day in and day out to understand it.
The people pleaser in me feels like I should offer this disclaimer: I in no way mean to diminish other peoples battles and struggles. One thing I am learning daily is that we all have our mountains to climb. While my struggle might look different from yours it doesn't make it harder or more difficult it just makes it different. When my grandmother was still alive and suffering from the brutal disease or dementia - it was AWFUL. It was just a different kind of awful. I don't know if that makes sense or not, but I want people to understand I'm not trying to be woe is me and look how awful our life is. I'm trying to be honest. This disease sucks. But for today I still have my mother. She still knows who I am and while we definitely have our struggles and this stupid disease is stealing bits and pieces from us every day ... she is still here with me and I am grateful for that every second of every day!
I'll leave you with this for tonight. These are my two very favorite passages from the book.
"You're so beautiful," said Alice. "I'm afraid of looking at you and not knowing who you are."
"I think that even if you don't know who I am someday, you'll still know that I love you."
"What if I see you, and I don't know that you're my daughter, and I don't know that you love me?"
"Then, I'll tell you that I do, and you'll believe me."
- Still Alice
I love that one because it just cements in me that even when she can't remember I still will. I will remind her of the love and moments we have shared ... and she will know. She will know how loved she is.
"And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I can't offer it the names of the US Presidents in exchange for the names of my children. I can't give it the names of state capitals and keep the memories of my husband.
...My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I'll forget that I stood before you and gave this speech, but just because I'll forget it some tomorrow doesn't mean that I didn't live every second of it today. I will forget today, but that doesn't mean that today doesn't matter."
- Still Alice
No comments:
Post a Comment