Tuesday, July 21, 2015

Body or Mind

I wrote briefly about how much I loved Lisa Genova’s Still Alice, but I was also left with several thoughts, through my own experiences and those of my mother. (NB I may disclose some spoilers, so if you plan to read this book, here’s a heads-up!) I could relate well to Alice’s plight, despite the fact that I have MS, a bodily disabler, and Alice had early-onset Alzheimer’s Disease. She was fifty when it hit her; I was a bit younger, but still doing meaningful work. Alice was a professor of linguistics at Harvard and was well educated. My job was different, but I still had the smarts! I could empathize even though I suffered in a different way.

Alice constantly worried about her future, knowing that eventually she’d know little of what was happening to her. Although my mother was twenty years older that Alice, the path to dementia followed a similar route. Alice kept repeating questions, and she couldn’t concentrate well. Those were the earliest symptoms which my mother demonstrated. On the outside, my mother looked and usually acted the same; however, those little quirks were defining her future. My mother gave up sewing and reading because she said it was hard to concentrate. Alice couldn’t read student’s paper all the way through because she became lost and had to read it over and over – an exhausting pursuit! When we were with my mother, she’d ask a question. We’d answer. Then, five minutes later, she’d ask the same question.

Alice had to endure a grueling three-hour neuro-psych test, and the things she described were the same as the test I took. So I knew how tiring it could be. My mother took part of the test with me in the room. She definitely failed the remembering of the three items which were asked over and over during the test. When asked to draw a clock with the hands showing a certain time, my mother totally spazzed out. And she couldn’t reproduce a particular figure accurately. The few things she managed to accomplish dealt with long-term memory and seemingly simple tasks. It broke my heart to watch this once intelligent and vibrant woman reduced to such a level. And these were only the beginning phases!

The book explored the disease from Alice’s vantage point. The reader saw how her life was changing over the course of just one year. My mother’s disease progressed more slowly. What Alice experienced in a month, we saw my mother going through the same changes, but over several years. The forgetting of everyday routines, the panic, the anxiety, the angry outbursts, and the wandering existed in both women, but in different time frames. I still remember when my mother started to get really bad, I mentioned to a friend that I’d rather have a physical handicap than a mental one. Little did I know then that such a desire would eventually rule my life.

As you can see, this book really affected me, and it left me with many thoughts to ponder. Genova has a PhD in neuro science, and she interviewed medical professionals as well as AD patients. She was spot on with her descriptions. I want to read her other books, and I hope they leave me with the same feelings.




  1. i saw the movie....and had a love/hate relationship with it. it was a great movie but it impacted me in such a negative way, as i too, see my future as related to MS!!!

    1. I totally understand! There were times when I wanted to stop reading because I started to get so sad. I'm glad I finished it, though, because at the end, I felt there was still hope left within her family.

  2. I just had lunch with a dear friend who is in the early stages of dementia. Her husband now has to drive her to the restaurant. I am witnessing firsthand the decline of her intelligence. And, get this. Her husband is looking to me to help him understand how to cope with such a devastating disease since, after all, I have managed to cope so well with my own debilitating disease. :)

    He has a hard time understanding, for example, why his wife can't cope with her decline better. I imagine there is some transference there.

    After talking with me, though, he has at least been open to the concept that, in a progressive disease, one doesn't just move on beyond the early stages of grief to achieve finally a stable acceptance. That the stages of grieving begin anew with each new loss. And one of the things that seemed to connect with him was my honesty about the fact that on some days I do better in my coping than I do on other days. That will be clear from my poem tomorrow

    So our lunches have become a sort of group therapy for this married couple in which I am the therapist! They are, by the way, seeing a real therapist, but the husband in particular seems to respond to my insights more readily than he does their therapist.

    It is an ironic position for me to be in. But, perhaps in my becoming the wounded healer, Life is presenting me with an important mission. It is not one I sought or accept comfortably. But, here I am. It turns out that sharing what I have learned on my own healing journey helps others. Who knew?

    1. What a poignant anecdote. I'm sure that simply by listening and sharing your own experiences, you are helping the couple come to terms with their own trouble. I find it interesting that many times, it's the family that has a harder time accepting an illness than it is for the patient. I'm glad this couple chose you to advise them. You have such compassion and empathy, and I'm sure your advice will be of value.

  3. I read the book quite some time ago but have not seen the movie yet. I recognized stages of my own mother's decline with dementia as well. I did like the book.

    1. Sometimes movies don't live up to the book. Since reading this one affected me so much, I'm not sure if I'll see the movie or not.