A response piece to Lisa Genova’s Still Alice

I think my reaction surprised me more than anything else.

Usually movies will get me, RARELY television shows and NEVER books. But this one did.

As I came to the final chapters of “Still Alice” I reached the most pivotal, climatic part…..  and just cried. I couldn’t stop the tears that rolled down my face as I kept turning page after page. I kept wiping my eyes in hopes that I would be able to see the words on the page to finish the book, but the slow tedious process only led me to misty eyes again and again. I cried until I reached the very last word on the very final page.

Never would I have thought that I would have such a strong emotional reaction to this book. I have always been kind of indifferent to the disease. My great grand mother was diagnosed with Alzheimer’s when I was just finishing up high school. I had heard about the severity of the disease before, seen movies about it, and heard student presentations on it, yet I was emotionless. I guess I took it as “this is just something that happens and you just deal with it”. But looking back, I never fully understood what it was: this internal fight to retain the person you have created after so many years, only to watch yourself disappear in less than half the time.

This course has really forced me to stop and think about how much my great grandmother has changed over the years. Now she lives with my grandmother who, I know, has a hard time seeing her mother like this.  And my absence, being all the way in Michigan for large chunks of the year, has left her with almost no recollection of me when I return home to California and go to church with her every Sunday.  The biggest difference in my acceptance of the disease versus my grandmother’s, would probably be that I am not her constant caregiver. Other than interacting a lot with her on the few Sundays and holidays when I am back home, I do not have to deal with the disease consistently at all.  Which I think, has greatly kept me me emotionless.

So my reaction to “Still Alice” shocked me, to say the least.

I think the realization of what THEY have to go through just hit home to me. Not being able to be the person you were. Stripped of all your abilities, physically and mentally. People treating you drastically different. Not being able to formulate your own thoughts. Lost in your own mind.

It wasn’t that I was sad that she was diagnosed with it… it wasn’t that I was sad that this disease is so terrible…I was sad for those who have to suffer through it because I could not even fathom that daily suffering.

As I closed the book and wiped my blood shot red eyes dripping with soggy mascara, I realized how many times I had cried about it (zero) versus the amount of times my family and I have all laughed at the situation (too many to count). My great grandmother is still the spry, ballsy, little woman I used to know. Though she set a lamp on fire last winter break, can get totally fixated on one thing, and randomly gets up and dances in front of the pulpit at church, she is still just as bright and lively as I remember her just a few years ago.

I think the biggest factor in understanding dementia, is being able to find that connection to spark their ability, so just for that moment you can look right into their minds. I try to take this into the Elderberry center each week when I work with my member. If I can find just one thing that clicks, one connection that either makes them understand or gets them to really laugh, then I feel like I have succeeded.  I really can’t tell if the members appreciate us being there to just spend time with them, but I am not looking for a pat on the back or recognition. I am looking for a smile on my member’s face and a single moment each week that gets me thinking… no Alzheimer’s will defeat this spectacular, full life.

~Keyana Thompson-Shaw, U of M student

 

 

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