3.05.2015

(let's talk): "I Would Rather Have Cancer"




1 - If I was reincarnated as a shoe, it would be this Kate Spade sparkly pink heel. 2 - Me & my sister at the Nordstrom opening gala 3 & 4 - Opening of Pure Kitchen here in Westboro - amazing! I had the Grateful bowl - mushroom miso with shiitake tofu dumplings. Check it out. 5 - Eyelash update. Sorry to scare you.

Today was like Christmas at my house! (I missed out on having a normal Christmas this year so I reserve the right to celebrate as many Christmas-like mornings as I want until next December hits). I ripped down to my mailbox and anxiously rode up all 4 floors to rip into the new books that have been on my wish list (...not before I snapped a picture though). 


I get so giddy when I get good old fashioned snail mail. For my birthday, Jeff got me a stationary type subscription called Happy Mail which delivers a dose of colourful paper products to my door each month (he is the best gift-giver!). I may be the only one, but when I was younger I used to love to buy those "surprise" bags at Ardene - full of their old and expired products, I now know - I just loved the element of surprise. So when a friend said she'd been looking at my wish list and sent a package my way to keep me company I was delighted. 


I just started We Should All Be Feminists and I'm really excited to get into it (not to mention I think it has a cover that just begs to be instagrammed and blogged). 

I feel much better. I have been enjoying music again (for awhile I went podcast crazy! Still love 'em, but I missed my music time), reading lots, binge watching TV lots, and hibernating for that last little stretch of winter.

I actually just finished reading Still Alice by Lisa Genova last night. There's been some buzz around it recently: the movie is coming out and Julianne Moore is starring in it. I wanted to read it before the movie (I am one of those) and also I don't particularly like Julianne Moore and I wanted to develop Alice as a character for myself! I spent the afternoon telling one of my girlfriends how much I loved it. It hit so close to home for me. I bet you're asking - how? Isn't this book about Alzheimer's?

I didn't particularly think the book was well written. I found it was edited poorly and all characters but Alice were one dimensional. But, I give Still Alice 5 stars. I normally wouldn't turn to my blog for a book review but this book had so many subjects that are so relevant to me right now and create conversation I believe is so important.

Alice Howland is a Harvard professor. One day she is speaking at a lecture, one she has given multiple times, and can't quite remember the word she uses to describe her slide (it was Lexicon, by the way). She doesn't think much of it, until she is walking home from her office (which she has done hundreds of times) and gets lost. She has no idea where "home" is. This is when she starts to worry. 

She looks up her symptoms and sees memory loss can be associated with menopause. That must be it, she thinks. She goes to her doctor, who advises her that she shouldn't worry - take 6 months and come back and see me if things get worse (what is WITH doctor's and deciding to wait and see if things 'get worse'?) Alice is worried and demands to see a neurologist. 

Her neurologist tells her she has early-onset Alzheimer's. 

Her life as she knows it slowly starts to deteriorate. She must leave her job, she can't go out alone. She must give up running, reading, even watching movies - she can't follow the plot. Her husband distances himself from her. Alice struggles with the notion of having a life with Alzheimers - is there such a thing? 

Still Alice is fiction, but reads like a memoir. I did some research before I go running my mouth here, and it seems as if all the facts regarding Alzheimer's check out. At one point in the book, Alice talks about her diagnosis. You'll see immediately why we connected:

"She wished she had cancer instead. She'd trade Alzheimer's for cancer in a heartbeat. She felt ashamed for wishing this and it was certainly a pointless bargaining, but she permitted the fantasy anyway. With cancer, she'd have something that she could fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win. Her family and the community at Harvard would rally behind her battle and consider it noble. And even if defeated in the end, she'd be able to look them knowingly in the eye and say good-bye before she left.

Alzheimer's disease was an entirely different kind of beast. There were no weapons that could slay it. Taking Aricept and Namenda felt like aiming a couple of leaky squirt guns in to the face of a blazing fire. Right now, everyone with Alzheimer's faced the same outcome, whether they were eighty-two or fifty, resident of the Mount Auburn Manor or a full professor of psychology at Harvard University. The blazing fire consumed all. No one got out alive.

And while a bald head and a looped ribbon were seen as badges of courage and hope, her reluctant vocabulary and vanishing memories advertised mental instability and impending insanity. Those with cancer could expect to be supported by their community. Alice expected to be outcast. Even the well-intentioned and educated tended to keep a fearful distance from the mentally ill. She didn't want to become someone people avoided and feared."


When I read "I wished I had cancer instead", I was offended. Who would write that? Who would WISH that? But I kept reading. I thought long and hard about the above quote.


The stigma behind mental illness is a topic that's talked about a lot recently in the media. I think I limited "mental illness" to what we see in the media: depression, mood disorders, etc. I did not think of diseases and disorders such as Dementia and Alzheimer's. I couldn't help but think: if I had been diagnosed with a serious mental illness versus a serious physical illness, would the support I received be the same? Would I still be seen as strong for battling an equally devastating illness? Would I be as confident openly talking about my diagnosis? I really don't think so. That made me so sad. 

Alice's husband refuses to take his sabbatical to spend the year with Alice as her mind slowly depreciates and she starts to lose her surroundings. He can't comprehend that his smart and beautiful wife is sick - her MRI and catscans are fine. He yells at her, tells her to just remember what he is telling her. He is embarrassed of her illness. Why do we find it so hard to be compassionate towards mental illness and find it so easy to support those with physical symptoms? Yet: I didn't hate his character. I sympathized for him. His frustration was believable and I am beginning to realize that sometimes your support system needs support, too. If we aren't as open to talking about mental illness, how can it's patients get support the support they deserve? If we can't even support those directly suffering, how are we supposed to help and support their loved ones?

Alice's children are tested for early onset Alzheimers. One of her daughters doesn't want to have her DNA tested. She would rather not live knowing if she carries the gene. The constant worry of questioning if the Alzheimers has set in every time you can't find your keys. One daughter tests positive and explores new fertility options: we are actually able to test our eggs before IVF and see which ones will carry that specific gene, and we can decide not to use the ones affected. Does this all sound familiar? I could see myself having this exact conversation with my fertility specialist two months ago. 

Her daughter has twins, and Alice is at the hospital and does not recognize her family. She is holding her granddaughter, when suddenly she clues in. 

"'Anna, you had your babies." said Alice. 
"Yes, Mom, you're holding your granddaughter." said Anna.
"She's perfect. I love her."
"And they won't get Alzheimer's like I did?" Asked alice.
"No, they won't."
Alice inhaled deeply, breathing in the scrumptious smell of her beautiful granddaughter, filling herself with a sense of relief and peace she hadn't known in a long time.

I cried my eyes out when I read this part last night at 2:30AM. Maybe it's because I had a drink at the Nordstrom gala (which is beautiful, by the way), but it's likely because I remember the pure relief I felt when I was told I didn't carry the BRCA1 and BRCA2 gene. 

In such a beautiful moment, Alice immediately worries and thinks about her illness. It is all consuming. It touches every part of your life. You can't help but worry about such a small, innocent life having to endure such a hardship. You want pure, simple things for the ones you love.

Mental illness and disorder scares us. It scares me. I read Still Alice and agreed with her at some points: I would rather have cancer. But... it doesn't have to be so scary. We could talk about it like we talk about cancer. 1800 people went to the Nordstrom gala last night where 100% of ticket sales went to support the Ottawa Regional Cancer Foundation. We talk about cancer, we treat cancer, we are comfortable with cancer. It is because of the physical symptoms, the visible ones, that it so easily touches our lives. We see our loved ones suffer through cancer: it's side effects are obvious. Yet, equally as many of us suffer from mental illness, and because it isn't on the surface - there is no bald head or gaping scar - it is harder to talk about. We feel inclined not to. I felt sad, thinking about anyone suffering alone, suffering behind closed doors. Our treatment for an illness should not be different whether it is physical or mental. I related to Alice. While our diagnosis was different, our side effects very different, our thoughts and feelings about being "sick" and how it affects us are the same. One of us doesn't deserve to be alienated while the other one is considered a warrior. 

The real moral of the book is to live in the moment. Mental illness, cancer... it may be curable, or it may not be. I think it's all about taking the good with the bad, trying not to dwell, work your hardest, do your best. It's all we have. As Alice says, "Living in the moment is all I can do".  

xx

Sam

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