Tuesday, April 30, 2013

Life-or-Death Question

     While on vacation I read about a woman named Susan Spencer-Wendel, a former reporter for the Palm Beach Post who, at age 44, found out she had ALS, or Lou Gehrig's disease. The illness causes your nerves to die off, progressing inevitably, from muscle to muscle, until you're paralyzed and you eventually die. There is no cure, no effective treatment. It is a death sentence, and a horrible one at that.

      Spencer-Wendel has a website and a facebook page. And she's written a book, Until I Say Good-Bye, published last month. According to amazon, everyone loves this book. It chronicles her journey as she first notices a weakness in her left hand, then goes to see several doctors, stays in denial for a whole year; and finally gets her official diagnosis. She contemplates suicide, but determines to live instead, and follow her dreams. (For a different experience, see my previous post The Night Visitor.)

     How could anyone not like her book? Well, I read it, and it turns out that the author dreams mostly about traveling, and bores us (or me at least) with extensive accounts of trips to Alaska, Hungary, California, Cyprus, and who knows where else.

     But there is one very affecting episode, when she takes her daughter Marina to New York to attend a friend's wedding. Mother and daughter visit Kleinfeld's, the fancy wedding store featured on the TV program "Say Yes to the Dress." Marina is only 14. But the young teenager is game to try on a wedding dress -- and show herself off as the bride her mother will never get to see.

     One other item caught my eye. At one point Spencer-Wendel makes the statement: "When I think of which role is worse -- to be the spouse dying or the spouse surviving -- I think it's the latter. The survivor will experience the same grief, will live the grief of the children, then must assume the responsibilities and slog on."

     I know my reaction to her point of view. What's yours? Maybe it's different depending on whether you're a man or a woman, since most women expect to outlive their husband, watch him die, and then live on as a widow. It's a natural part of life for a woman, not usually for a man (although my own dad outlived my mother by two years -- but he's the exception that proves the rule).

     Admittedly it's a distressing subject, but I'd be interested to hear what you think. I remember my mother, who admittedly had health problems later in life, wanted to be the first to go. And she was. My father raged against the dying of the light -- even at age 91 he desperately wanted to keep living and couldn't believe he had a fatal disease.

     Anyway, Susan Spencer-Wendel is one brave woman, as is her husband John as well as their three children. There's much to admire about her. And from now on, every morning when I wake up, I will thank God, the Universe and the Fates that I don't have ALS.

    
    

16 comments:

gigihawaii said...

My friend, Dan, died of ALS within a year after diagnosis. He shunned meds, because he wanted to go fast and not be a burden on his family. I miss him all the time.

DJan said...

My husband has a friend with ALS who doesn't live in our town, so he calls him once a month and they talk for a long time. I think about this awful disease and I too give thanks that I don't have it.

But to watch my loved one die of it, the grief and pain I'd feel, well I guess I couldn't choose. I will read this book. Thanks for pointing me in its direction. I just got on the waiting list at my library for it.

Olga said...

ALS is a terrible disease.

I don't know if it would be worse to waste away or watch my spouse have to go through that. I hope I don't find out.

I sometimes assume my husband will go before I do. He has all kinds of chronic conditions--minor enough at this point, but there. I am momentarily quite healthy. But then I remind myself that there are no guarantees. Also, he has had way more experience living on his own than I have. I don't kid myself that he couldn't live on without me.

Stephen Hayes said...

All I can say is that several health issues will more than likely take my wife before I die, and I'm glad I'll be there to help her through this difficult time when it comes. But until then we'll both rage against the dying of the light.

Douglas said...

Faye insists she will "go" first. But she is younger than I and her mother is still strong in her 80's. My father went first, as expected, but not when he thought (mid-60's as his father, grandfather, and great-grandfather did). My mother continued for 7 more years with Alzheimer's. We all face our inevitable end differently, I think, but... finally... with resignation and acceptance. But what do I know? I have not reached that point in the journey.

MerCyn said...

I dread being a burden to my family should I get Alzheimer's (like my Dad), ALS, or something else.

I think the individual's personality determines whether they successfully maneuver widowhood. A lot also depends on their stage in life - being left with young children is so difficult - and, at any age, support from family and friends.

schmidleysscribblins.wordpress.com said...

My paternal grandmother died with ALS. She was 10 years younger than I am today when she died a horrible death. Dad's sister, Aunt Marge cared for her the last years of her life. A difficult time for her too.

I lived in fear of this disease, but my doc says its not genetic and not an infectious disease. No one knows why you get it.

My maternal other grandmother died with Dementia. Don't know what kind, but she spent the last 10 years of her life in a nursing home. Mom's sister Aunt Audrey cared for her.

I am convinced the caretakers have it worst of all, especially with dementia. Dianne

Anonymous said...

Looking at our two family health/death histories, I expect my husband to outlive me by at least 15 years. I can only hope that I drop dead, suddenly. Husband is very, very much like his father who, although a wonderful man, in my view did an appalling job of caring for his wife who (it was confirmed) died of Alzheimer's. Even if I were mostly unaware of my surroundings, I would not wish that treatment upon myself.

There are no easy answers - and - usually no way of knowing what to expect.
Cop Car

Galen Pearl said...

I find it hard to make comparisons like this. I think our challenge in life is to be grateful no matter what. As for being grateful that I don't have a particular disease, I can remind myself that there are people who are grateful they don't have my life in other respects. Hmm.

Having said that, my heart goes out to people dealing with such situations, both the person who is sick and the family who is caring and will survive.

Kathleen McCoy said...

I read the book recently, Tom, and my reaction was much like yours -- finding the author admirable and inspiring and brave, but I also was not as interested in the travel adventures as in the times of personal connection. Her memory-building moments with her children were lovely and heart-breaking.

I had a college friend who died of ALS and her husband said they felt blessed that the course of the disease was very quick with her so she didn't suffer for a long time. I also have a close friend whose husband has dementia as well as other physically immobilizing illnesses and I see what they both go through. Their love is inspiring, their burden exhausting.

I think Galen is right that our challenge is to live in gratitude for whatever cards we're dealt and find joy in special moments we make in our lives. Having lost so many friends and family members already, I'm concentrating on reaching out, having good conversations and spending time with those I love. I think I would do better living alone than my husband would, but I'm hoping such losses for either of us are a long way off. And I felt incredibly grateful to have lived longer already than either of my parents and to be able to savor each day so far.

Lorna said...

I wish you had touched more on the issue of suicide.

Tom Sightings said...

Hi Lorna, like I said, for a different experience, see my previous post The Night Visitor.

Dick Klade said...

I think the more we discuss death, the more we are ready when it happens to us or our spouse. I like to believe I've had a great life and am ready to go, but at the end such thoughts often change.

Bob Lowry said...

I am quite surprised that my dad has lived for 2 1/2 years after my mom's death and is still going strong. They were married for 63 years and totally devoted to each other.

All of us expected him to basically curl up and die. He misses her terribly, but gives no indication that he is ready to have his life end. People can surprise us even when we are sure we know them well.

Anonymous said...

To all that my read this, For the last 72 days of hell in my life with my older brother. They have not given what ever this is a name he has,but reading your list of stories it made me sick and full of fear. My soul heart not my heart.Trust me there is a drifference. I have never felt so much pain in my life, like I have looking at my brother go throw this sickness that he has....I want to run down the street screaming out of my mind. Why is there so much pain in this world.... I HATE it. For all of you that have had love one with this I am so sorry and I will pray for all that this affect. I am just a nobody that really care about other human beings. What can I do to help just tell me.. I dont have much of nothing other than a big heart. Much Love invisiable women.

Retired Syd said...

Well my mom died when she was 44 years old. It was terribly hard for both me and for my dad. But all things considered, at least from my vantage point, I have to say being the surviving spouse looks to be the far better role. Not sure I get her point there.