When I was pregnant with my son, I sat in my bed one evening reading a book. I was more than halfway through. I knew all the characters and the story and the plot. But I started the chapter and didn't recognize any of the names. I was so confused, I must have skipped ahead. So I went back to the previous chapter, then the next, then the next. I went all the way back to the beginning of the book, and that's when I really got scared, because all of it was foreign. I didn't recognize any of the characters' names. I shut the book and waited for my husband to get home from his walk. He came up to me beside the bed and told me he ran into our neighbor, the one with the friendly dog we liked. He said their names—Theresa and Sunshine. I stared at him, knowing I should know who he was talking about by the look on his face, but having absolutely no idea who Theresa and Sunshine were. We both got scared and went to the Emergency Room. By the time I arrived my memory was back. I remembered our neighbors' names, and the next day, I went back to where I was in my book. The amnesia was brief, maybe thirty minutes, but reading this post brought me back to it. Such a scary disease.
Charlie, that sounds absolutely terrifying. Did they ever figure out what caused it?
I know sleep deprivation, hormones, stress, and all the physical upheaval of pregnancy and new babies can do such strange things to our brains, but I can only imagine how frightening it must have been to suddenly have no access to things you knew you should know.
And yes, I completely agree. I can’t imagine waking up each day with no history or context to stand on. It must be so scary. The people who live with this disease are so brave to keep operating in the world with a kind of blind trust in the people around them, even when they don’t recognize them.
Thank you so much for reading and for sharing this ◡̈
They never figured out what caused it. All they could do was shrug and say something about being pregnant... maybe the hormones but they really didn't know. Such a glimpse into a scary possibility of what could be. If it ran in my family, like yours, I know that would hang over me. I love your ability to write about something so emotional with such an even tone.
That seems so scary, especially not getting a real explanation for it. I can see why that memory would stay with you.
And thank you so much for saying that. In a way, the “even tone” is sort of my attempt to do what you so often write about so beautifully—not telling the reader what to think, but leaving enough space for them to feel their own way through it.
Thank you Rachel for writing this. So sorry to hear Alzheimer’s has been a part of life your family has had to navigate. This was a wonderful post. Really enjoyed the balance of story and science in this one. The title is perfect.
One of the hardest things I’ve seen through two parents (MIL with Alzheimer’s, she lived with us for ~6 months before agreeing to go to a memory care facility, and my own mother with LB dementia) is how unforgiving it is on family members. As the patients lose themselves, often times loved ones lose their own sense of self, portions of it at least, trying to care for them. It is the ultimate test of saving someone who’s drowning, which, in the water, sometimes also results in the rescuer drowning. My only advice for people is to try and make yourself as healthy as you can before the storm, physically, mentally, in your relationships, in your faith, if that’s a part of your life. That part of your essay genuinely made me smile, about the connections we make in our brains, and less scientifically, in our hearts, to help stave off or slow the effects. I saw Still Alice before my MIL and mother were diagnosed. I should read the book at some point but my memories of the film, significant sadness at the time, now seem quaint as I look back on it. Reading about the end of the book here in this post helped provide some hope at a point where I don’t feel or find much in that disease. Appreciate what you bring to your writing on here. 🙏
Matt, thank you so much for this thoughtful comment. I’m so sorry your family has been hit so hard by Alzheimer’s and dementia. To walk through that with both your mother-in-law and your own mother must have been incredibly painful.
I agree with you completely that this disease is such a strenuous test for caregivers, too. What you said about loved ones losing parts of themselves while trying to save someone else felt painfully true. That image of the rescuer also drowning is so powerful.
Your advice is very well taken, and clearly given by someone who has lived it. I think you’re right that we have to build as much strength, connection, health, and meaning as we can before the storm comes, in whatever forms those take.
Thank you again for taking the time to read and comment. It means a lot to know this piece resonated with you, especially given your personal history with this disease.
I had a major health issue a few years ago that caused me to have to very seriously consider the possibility that I might die. And honestly, I don’t really fear death now…in the way that I used to.
But I can 100% say that I’m scared to death of the possibility of winding up like Alice.
Henny, I’m so glad your health scare is hopefully behind you. And yes, I completely agree. The tragedy of losing your family while you are still here is almost unimaginable to me.
The fact that Alice was still able to experience childlike moments of joy at the end gave me a flicker of hope that even then, not all is lost. Love still reached her somehow. Maybe that is one of the few mercies of such a cruel disease. I know with my own grandmother and other relatives who’ve had Alzheimer’s, it certainly forces you not to take any moments with them for granted.
Rachel, thank you for taking the time to write this. Alzheimer’s touches so many of us these days. As I think you know, my mom passed away last year at 86 and she too had Alzheimer’s that started to show at about age 70.
I love it when your writing shows up in my inbox.
Your essay here was so beautiful and tender while at the same time educational. I found that I was rapt by what I was learning and emotionally being wound tighter as you told the story of Alice. That’s a delicate balancing act and you completely pulled it off. 🙌
James, thank you so much for these incredibly kind words. And yes, I do remember reading about your mom. I’m so sorry your family had to walk through that too.
Alzheimer’s is such a merciless disease. It runs pretty deep in my family as well, and it has been heartbreaking to watch generation after generation of women receive that diagnosis and then slowly be lost to it. And it is just as painful to watch what it asks of the spouses and children who love them.
I really appreciate you taking the time to read this so thoughtfully and to leave such a generous comment. It means a lot.
Beautifully written Rachel, on a topic that truly resonates in my family...Alzheimer's is such a scary disease and one which slowly takes our loved ones "away" from us while they are still alive. I sure do love you sweet daughter and am so proud of you!
Thanks Mom ◡̈ Yes, this topic has been very top of mind (and heart) lately for us. It is such a cruel disease. Thank you for reading, always appreciate the support. Love you too!
This is a wonderful essay Rachel. As always, your writing is a pleasure to read. It’s poignant for me personally, as my Dad has dementia (not Alzheimer’s) and my best friend’s mother recently passed away due to dementia complications. I remember watching the movie Still Alice and feeling quite disturbed, watching Alice lose all parts of herself except for her essence. At the same time, in my own experience of lived ones with dementia I have come to believe that there is something in this process that serves humanity, as painful as it is. It illuminates the truth that we are more than our memories and egos, it provides the opportunity for unconditional love of people taking care of each other even when they’re not remembered or recognized, and helps us recognize that what we take for granted, our memories and the poetry of it, are a beautiful part of life. My Dad’s dementia has allowed me to be a daughter in the fullest sense of love ad service to the mystery of being alive.
Wow, Emily. These words really touched me. I don’t think I could have said it better myself.
I’m so sorry your family has had to walk through this as well. But what you said here is so beautifully expressed. In every hard thing I’ve lived through or witnessed, I’ve found that there is usually some form of beauty hidden inside the pain. You illuminated that so tenderly. And this line:
“to be a daughter in the fullest sense of love and service to the mystery of being alive”
Stunning.
Thank you so much for reading and for leaving such a thoughtful, moving comment.
I have not read the book but saw Julianne Moore as the lead in the movie. Exquisite story/film which made me cry. Your unpacking of who the author is and how she wrote this book, the interwoven story/science patterns and the conclusion about love is so beautifully written as always. Thank you Rachel.!
Dana, thank you so much for these kind words. I actually haven’t seen the movie yet, but I would love to check it out, especially after spending so much time with the book.
I can imagine Julianne Moore would be incredible in that role.
Thank you again for reading and commenting. I really appreciate it.
Scary disease--very thoughtful and moving piece-- thank you for your efforts to inform Rachel. I understand there may be some advances in meds that slow the disease's progression. A friend of mine, a highly educated man who ran a significant DC institution, took the medication and showed remarkable progress in some areas of his life. While still unable to prepare a meal, drive, or even walk from one familiar point to another without getting lost, he maintained the ability to enjoy his family life, to read, attend lectures,and apparently enjoy serious literature, opera, etc., right up to the final months of his life .
Ed, thank you so much for sharing this. It’s good to hear even a small note of hope in a conversation about such a brutal disease.
From what I understand, some of the newer medications can slow the progression for certain patients. Your story is a great example.
I’m so glad your friend was able to keep enjoying family life, books, lectures, literature, and opera for as long as he did. Every extra stretch of real, meaningful life with the people and things someone loves feels like a win.
Thank you again for reading and commenting. I really appreciated hearing this perspective.
What Alzheimer's is and what it does used be something I knew the definition of, but with my mother now on the downslope of the disease, I know the full dread of it. Some days are better than others for my mom, and honestly, her attitude about it and grace in the midst of it couldn't be any better of a model. And yet, it's the most disturbing fate to witness or consider for oneself. It is driving me to question what is available to me in presence alone, outside of the capacity to identify myself in place and time with a name and history. But that is a difficult thing to imagine, that one could feel they had anything at all without memory to hold it with.
Rick, I’m so sorry you’re walking through this right now with your mom. It is so different to know Alzheimer’s as a definition versus knowing it through someone you love.
I had exactly the same reaction to Still Alice—both awe at the bravery and grace of people who are living with the disease, and this haunting question of what remains when every thread of memory is slowly disassembled. What a true example of living moment to moment, without the usual scaffolding of name, history, place, and time.
Rachel, I echo all of the feedback here thus far: Alzheimer's is such a devastating disease. Watching your body slowly succumb to age is one thing, but losing your mind ... I can't begin to imagine that – though both you and Lisa Genova do a helluva job showing us what this is all about, through story and dogged research.
And I'm floored to hear about the disparity of Alzheimer's cases between women and men; I hope the research into this goes somewhere! Fingers crossed. (And let's pray for more research funding.)
Finally, what stands out for me is this: "A lifetime of consistent learning builds redundancy into the brain, allowing the same piece of information to be reached by many different pathways." I cannot think of a better argument (and a swift, heavy kick in the ass) to take classes, learn a new hobby, ponder opposing viewpoints, do crosswords puzzles ... Perhaps the trite "Use it or lose it" applies to the brain, though that's not the end-all-be-all. In any event, I appreciate your critical reminder to keep those neurons a-firing.
Larry, thank you so much for these kind words. I completely agree. It is hard to imagine anything more tragic than losing the ability to recognize the people you love, and just as heartbreaking is the pain it causes the people who love the person diagnosed.
I was fascinated by the gender disparity, too. Anecdotally, I’ve mostly known women who have had Alzheimer’s, but I didn’t realize the extent of the disparity until recently. I also hope the research keeps moving forward, and yes, absolutely, that it receives the funding it deserves.
And I felt the same way about the lifelong learning piece. I found it genuinely hopeful to realize that constantly learning new things doesn’t just bring joy and vivacity to life, but may also help protect the brain. It really is one of the best arguments I’ve heard for staying intellectually alive.
Thank you again for reading so thoughtfully and for always engaging in such a generous way.
Rachel, this is a hard subject to write about, and you've handled it with care. Hard topics reveal the writer, and this one revealed yours.
Unfortunately, I've also seen this disease up close in my own family.
But what stayed with me after reading was a thought I hadn't considered before. Presence and memory are not the same thing. Memory is recalled and pieced together. Presence is the moment itself — already whole.
The novel shows what fades. What you helped me see is what remains. The memory goes. But the presence stays. And maybe that is how we learn to carry it.
Shams, thank you so much for these incredibly kind words. And I’m so sorry you’ve had to see this disease up close in your own family too.
I love the way you describe that presence and memory are not the same thing. That is exactly the hope I took from the book and the research, so I’m really glad that came through.
After everything Alice loses, and despite all the pain of this disease, Alice is still Alice. There is still some fundamental presence that remains. And she can still feel love.
Rachel, thanks for this enlightening piece on such a difficult topic. I saw the movie several years ago, and remember being shocked to realize it can begin so young. I'm sorry this is something so close to home for you-- and others who left comments. It seems like as these pieces of identity get stripped away, the ones suffering from dementia in different forms are left with their soul-essence, which is beyond identity. Maybe it's actually hardest for those around the person- who perhaps isn't aware what they are missing....
Linda, thank you so much for taking the time to read and comment. I love the idea of the soul-essence being what remains when so many other pieces of identity have been stripped away. I think that’s why Alice is "Still Alice" at the end. Even when she no longer has access to her memories, her roles, her expertise, or even the names of the people she loves, something essential in her still recognizes love.
And I agree, in some ways it may be hardest for the people around the person, because they are watching each loss happen in real time. The person experiencing it may not always understand what has been lost, but the people who love them do. Such a heartbreaking disease. Thank you again for commenting.
Wow, excellent read. My dad has memory problems that we haven’t fully got a clear diagnosis for yet, partly because of distance and missed updates, so this really made me think. I also struggle with memory retention myself, or at least it feels that way when my nervous system/amygdala is overactive. It’s like trying to hold information while a tiny gun is going off in my head. Still Alice unsettles me for that reason, because it shows the terror of losing access to yourself, but also the strange question of what still remains when memory starts slipping.
Thank you so much for taking the time to read and comment. And I’m so sorry you’re in the midst of trying to figure this out with your dad right now. The uncertainty alone can be so hard.
I love what you said about struggling with memory when your nervous system/amygdala is overactive. There’s actually a lot of research showing that memory is affected by stress, fear, and distraction. Lisa Genova writes a lot about that in her nonfiction book Remember, too. Often what feels like a “memory problem” is really an attention/stress problem. So hopefully you can worry a little less about that part, though I know that’s much easier said than done ◡̈
And I agree completely about Still Alice. It really does make you think about what is left when we lose access to our memories. What a great title for a novel.
Ugh, this is so heart-wrenching and scary.
When I was pregnant with my son, I sat in my bed one evening reading a book. I was more than halfway through. I knew all the characters and the story and the plot. But I started the chapter and didn't recognize any of the names. I was so confused, I must have skipped ahead. So I went back to the previous chapter, then the next, then the next. I went all the way back to the beginning of the book, and that's when I really got scared, because all of it was foreign. I didn't recognize any of the characters' names. I shut the book and waited for my husband to get home from his walk. He came up to me beside the bed and told me he ran into our neighbor, the one with the friendly dog we liked. He said their names—Theresa and Sunshine. I stared at him, knowing I should know who he was talking about by the look on his face, but having absolutely no idea who Theresa and Sunshine were. We both got scared and went to the Emergency Room. By the time I arrived my memory was back. I remembered our neighbors' names, and the next day, I went back to where I was in my book. The amnesia was brief, maybe thirty minutes, but reading this post brought me back to it. Such a scary disease.
Charlie, that sounds absolutely terrifying. Did they ever figure out what caused it?
I know sleep deprivation, hormones, stress, and all the physical upheaval of pregnancy and new babies can do such strange things to our brains, but I can only imagine how frightening it must have been to suddenly have no access to things you knew you should know.
And yes, I completely agree. I can’t imagine waking up each day with no history or context to stand on. It must be so scary. The people who live with this disease are so brave to keep operating in the world with a kind of blind trust in the people around them, even when they don’t recognize them.
Thank you so much for reading and for sharing this ◡̈
They never figured out what caused it. All they could do was shrug and say something about being pregnant... maybe the hormones but they really didn't know. Such a glimpse into a scary possibility of what could be. If it ran in my family, like yours, I know that would hang over me. I love your ability to write about something so emotional with such an even tone.
That seems so scary, especially not getting a real explanation for it. I can see why that memory would stay with you.
And thank you so much for saying that. In a way, the “even tone” is sort of my attempt to do what you so often write about so beautifully—not telling the reader what to think, but leaving enough space for them to feel their own way through it.
My father had an episode like this, and the doctors called it "temporary global amnesia." They didn't have an explanation for it, either.
Temporary global amnesia... wow thank you for naming this.
I just looked it up, and I had it wrong. It's “transient global amnesia.”
Ugh. So glad it was so short-lived. But still. So scary.
Yes took "pregnancy brain" to a new level.
That sounds horrific. Glad you pulled out of it so quickly.
Thank you Rachel for writing this. So sorry to hear Alzheimer’s has been a part of life your family has had to navigate. This was a wonderful post. Really enjoyed the balance of story and science in this one. The title is perfect.
One of the hardest things I’ve seen through two parents (MIL with Alzheimer’s, she lived with us for ~6 months before agreeing to go to a memory care facility, and my own mother with LB dementia) is how unforgiving it is on family members. As the patients lose themselves, often times loved ones lose their own sense of self, portions of it at least, trying to care for them. It is the ultimate test of saving someone who’s drowning, which, in the water, sometimes also results in the rescuer drowning. My only advice for people is to try and make yourself as healthy as you can before the storm, physically, mentally, in your relationships, in your faith, if that’s a part of your life. That part of your essay genuinely made me smile, about the connections we make in our brains, and less scientifically, in our hearts, to help stave off or slow the effects. I saw Still Alice before my MIL and mother were diagnosed. I should read the book at some point but my memories of the film, significant sadness at the time, now seem quaint as I look back on it. Reading about the end of the book here in this post helped provide some hope at a point where I don’t feel or find much in that disease. Appreciate what you bring to your writing on here. 🙏
Matt, thank you so much for this thoughtful comment. I’m so sorry your family has been hit so hard by Alzheimer’s and dementia. To walk through that with both your mother-in-law and your own mother must have been incredibly painful.
I agree with you completely that this disease is such a strenuous test for caregivers, too. What you said about loved ones losing parts of themselves while trying to save someone else felt painfully true. That image of the rescuer also drowning is so powerful.
Your advice is very well taken, and clearly given by someone who has lived it. I think you’re right that we have to build as much strength, connection, health, and meaning as we can before the storm comes, in whatever forms those take.
Thank you again for taking the time to read and comment. It means a lot to know this piece resonated with you, especially given your personal history with this disease.
I had a major health issue a few years ago that caused me to have to very seriously consider the possibility that I might die. And honestly, I don’t really fear death now…in the way that I used to.
But I can 100% say that I’m scared to death of the possibility of winding up like Alice.
Henny, I’m so glad your health scare is hopefully behind you. And yes, I completely agree. The tragedy of losing your family while you are still here is almost unimaginable to me.
The fact that Alice was still able to experience childlike moments of joy at the end gave me a flicker of hope that even then, not all is lost. Love still reached her somehow. Maybe that is one of the few mercies of such a cruel disease. I know with my own grandmother and other relatives who’ve had Alzheimer’s, it certainly forces you not to take any moments with them for granted.
For sure
Rachel, thank you for taking the time to write this. Alzheimer’s touches so many of us these days. As I think you know, my mom passed away last year at 86 and she too had Alzheimer’s that started to show at about age 70.
I love it when your writing shows up in my inbox.
Your essay here was so beautiful and tender while at the same time educational. I found that I was rapt by what I was learning and emotionally being wound tighter as you told the story of Alice. That’s a delicate balancing act and you completely pulled it off. 🙌
James, thank you so much for these incredibly kind words. And yes, I do remember reading about your mom. I’m so sorry your family had to walk through that too.
Alzheimer’s is such a merciless disease. It runs pretty deep in my family as well, and it has been heartbreaking to watch generation after generation of women receive that diagnosis and then slowly be lost to it. And it is just as painful to watch what it asks of the spouses and children who love them.
I really appreciate you taking the time to read this so thoughtfully and to leave such a generous comment. It means a lot.
Beautifully written Rachel, on a topic that truly resonates in my family...Alzheimer's is such a scary disease and one which slowly takes our loved ones "away" from us while they are still alive. I sure do love you sweet daughter and am so proud of you!
Thanks Mom ◡̈ Yes, this topic has been very top of mind (and heart) lately for us. It is such a cruel disease. Thank you for reading, always appreciate the support. Love you too!
This is a wonderful essay Rachel. As always, your writing is a pleasure to read. It’s poignant for me personally, as my Dad has dementia (not Alzheimer’s) and my best friend’s mother recently passed away due to dementia complications. I remember watching the movie Still Alice and feeling quite disturbed, watching Alice lose all parts of herself except for her essence. At the same time, in my own experience of lived ones with dementia I have come to believe that there is something in this process that serves humanity, as painful as it is. It illuminates the truth that we are more than our memories and egos, it provides the opportunity for unconditional love of people taking care of each other even when they’re not remembered or recognized, and helps us recognize that what we take for granted, our memories and the poetry of it, are a beautiful part of life. My Dad’s dementia has allowed me to be a daughter in the fullest sense of love ad service to the mystery of being alive.
Wow, Emily. These words really touched me. I don’t think I could have said it better myself.
I’m so sorry your family has had to walk through this as well. But what you said here is so beautifully expressed. In every hard thing I’ve lived through or witnessed, I’ve found that there is usually some form of beauty hidden inside the pain. You illuminated that so tenderly. And this line:
“to be a daughter in the fullest sense of love and service to the mystery of being alive”
Stunning.
Thank you so much for reading and for leaving such a thoughtful, moving comment.
I have not read the book but saw Julianne Moore as the lead in the movie. Exquisite story/film which made me cry. Your unpacking of who the author is and how she wrote this book, the interwoven story/science patterns and the conclusion about love is so beautifully written as always. Thank you Rachel.!
Dana, thank you so much for these kind words. I actually haven’t seen the movie yet, but I would love to check it out, especially after spending so much time with the book.
I can imagine Julianne Moore would be incredible in that role.
Thank you again for reading and commenting. I really appreciate it.
Scary disease--very thoughtful and moving piece-- thank you for your efforts to inform Rachel. I understand there may be some advances in meds that slow the disease's progression. A friend of mine, a highly educated man who ran a significant DC institution, took the medication and showed remarkable progress in some areas of his life. While still unable to prepare a meal, drive, or even walk from one familiar point to another without getting lost, he maintained the ability to enjoy his family life, to read, attend lectures,and apparently enjoy serious literature, opera, etc., right up to the final months of his life .
Ed, thank you so much for sharing this. It’s good to hear even a small note of hope in a conversation about such a brutal disease.
From what I understand, some of the newer medications can slow the progression for certain patients. Your story is a great example.
I’m so glad your friend was able to keep enjoying family life, books, lectures, literature, and opera for as long as he did. Every extra stretch of real, meaningful life with the people and things someone loves feels like a win.
Thank you again for reading and commenting. I really appreciated hearing this perspective.
What Alzheimer's is and what it does used be something I knew the definition of, but with my mother now on the downslope of the disease, I know the full dread of it. Some days are better than others for my mom, and honestly, her attitude about it and grace in the midst of it couldn't be any better of a model. And yet, it's the most disturbing fate to witness or consider for oneself. It is driving me to question what is available to me in presence alone, outside of the capacity to identify myself in place and time with a name and history. But that is a difficult thing to imagine, that one could feel they had anything at all without memory to hold it with.
Rick, I’m so sorry you’re walking through this right now with your mom. It is so different to know Alzheimer’s as a definition versus knowing it through someone you love.
I had exactly the same reaction to Still Alice—both awe at the bravery and grace of people who are living with the disease, and this haunting question of what remains when every thread of memory is slowly disassembled. What a true example of living moment to moment, without the usual scaffolding of name, history, place, and time.
Thank you for sharing this.
Rachel, I echo all of the feedback here thus far: Alzheimer's is such a devastating disease. Watching your body slowly succumb to age is one thing, but losing your mind ... I can't begin to imagine that – though both you and Lisa Genova do a helluva job showing us what this is all about, through story and dogged research.
And I'm floored to hear about the disparity of Alzheimer's cases between women and men; I hope the research into this goes somewhere! Fingers crossed. (And let's pray for more research funding.)
Finally, what stands out for me is this: "A lifetime of consistent learning builds redundancy into the brain, allowing the same piece of information to be reached by many different pathways." I cannot think of a better argument (and a swift, heavy kick in the ass) to take classes, learn a new hobby, ponder opposing viewpoints, do crosswords puzzles ... Perhaps the trite "Use it or lose it" applies to the brain, though that's not the end-all-be-all. In any event, I appreciate your critical reminder to keep those neurons a-firing.
Larry, thank you so much for these kind words. I completely agree. It is hard to imagine anything more tragic than losing the ability to recognize the people you love, and just as heartbreaking is the pain it causes the people who love the person diagnosed.
I was fascinated by the gender disparity, too. Anecdotally, I’ve mostly known women who have had Alzheimer’s, but I didn’t realize the extent of the disparity until recently. I also hope the research keeps moving forward, and yes, absolutely, that it receives the funding it deserves.
And I felt the same way about the lifelong learning piece. I found it genuinely hopeful to realize that constantly learning new things doesn’t just bring joy and vivacity to life, but may also help protect the brain. It really is one of the best arguments I’ve heard for staying intellectually alive.
Thank you again for reading so thoughtfully and for always engaging in such a generous way.
Rachel, this is a hard subject to write about, and you've handled it with care. Hard topics reveal the writer, and this one revealed yours.
Unfortunately, I've also seen this disease up close in my own family.
But what stayed with me after reading was a thought I hadn't considered before. Presence and memory are not the same thing. Memory is recalled and pieced together. Presence is the moment itself — already whole.
The novel shows what fades. What you helped me see is what remains. The memory goes. But the presence stays. And maybe that is how we learn to carry it.
Shams, thank you so much for these incredibly kind words. And I’m so sorry you’ve had to see this disease up close in your own family too.
I love the way you describe that presence and memory are not the same thing. That is exactly the hope I took from the book and the research, so I’m really glad that came through.
After everything Alice loses, and despite all the pain of this disease, Alice is still Alice. There is still some fundamental presence that remains. And she can still feel love.
Rachel, thanks for this enlightening piece on such a difficult topic. I saw the movie several years ago, and remember being shocked to realize it can begin so young. I'm sorry this is something so close to home for you-- and others who left comments. It seems like as these pieces of identity get stripped away, the ones suffering from dementia in different forms are left with their soul-essence, which is beyond identity. Maybe it's actually hardest for those around the person- who perhaps isn't aware what they are missing....
Linda, thank you so much for taking the time to read and comment. I love the idea of the soul-essence being what remains when so many other pieces of identity have been stripped away. I think that’s why Alice is "Still Alice" at the end. Even when she no longer has access to her memories, her roles, her expertise, or even the names of the people she loves, something essential in her still recognizes love.
And I agree, in some ways it may be hardest for the people around the person, because they are watching each loss happen in real time. The person experiencing it may not always understand what has been lost, but the people who love them do. Such a heartbreaking disease. Thank you again for commenting.
Wow, excellent read. My dad has memory problems that we haven’t fully got a clear diagnosis for yet, partly because of distance and missed updates, so this really made me think. I also struggle with memory retention myself, or at least it feels that way when my nervous system/amygdala is overactive. It’s like trying to hold information while a tiny gun is going off in my head. Still Alice unsettles me for that reason, because it shows the terror of losing access to yourself, but also the strange question of what still remains when memory starts slipping.
Thank you so much for taking the time to read and comment. And I’m so sorry you’re in the midst of trying to figure this out with your dad right now. The uncertainty alone can be so hard.
I love what you said about struggling with memory when your nervous system/amygdala is overactive. There’s actually a lot of research showing that memory is affected by stress, fear, and distraction. Lisa Genova writes a lot about that in her nonfiction book Remember, too. Often what feels like a “memory problem” is really an attention/stress problem. So hopefully you can worry a little less about that part, though I know that’s much easier said than done ◡̈
And I agree completely about Still Alice. It really does make you think about what is left when we lose access to our memories. What a great title for a novel.
Thank you again for reading!