Tuesday, February 22, 2011

Book Reviews

Book Reviews (simply my opinion).

This book is written by a mother who recounts life raising her son who has cerebral palsy and requires 24/7 care.  Her son is now 22 years old and he spends the majority of his time in bed because it is where he is most pain-free.  When I bought the book, I thought it would be more about how the author’s son finds happiness and value in his life despite being bedridden. While the author does touch on her son’s present life, she talks mainly about her son’s life growing up – his schooling, social interactions, his many hospitalizations and surgeries and the challenges faced to get him the services and care he deserves.  The author and her family currently live in the UK, but have also lived in Canada – so her perspective of the services her son received and services she believes he should receive as an adult are looked at from a national healthcare system perspective – which I don't have experience with.

Several points in the book that I flagged as noteworthy:

Something called the “Capability Approach” which focuses on the kind of life that people manage to lead and whether that life has value to the individual, from their perspective, not ours.  For example, some people (including myself) may ask how can Jack be happy when all he does is lay in bed all day. But, from his perspective, he is loved, pain-free, well cared for and entertained every day and that is all he needs to be happy and have a life of value. (Of course, I’m just surmising this, as Jack has never actually told me how he feels – I can only base it on what I observe.)

When talking about mothers of children with severe disabilities, the author states:

“It is a paradox that in order to be free, the mother of a child with severe disabilities has to relinquish the choosing self.  I can remember thinking more than once, Okay, I give up.  I give up on imagining that I have a life.” … “It is ironic and paradoxical that the key to surviving the experience of caring for someone as dependent as my son means giving up on freedom of choice. The capabilities of my family cannot be measured on the same scale as others – it‘s part of our job as people who love someone who is very dependent to redefine happiness and achievement.”

“Mothering a child with medical needs is a very public but lonely endeavor.  Public, because a myriad of professionals weigh in with opinions on how Nicholas should eat, breathe, talk, sit and even be held, but also lonely because all these prescribed therapies are carried out with your child alone at home. There are no neighborhood mother-toddler groups for young children with severe disabilities.”

What I found most interesting was the author’s belief that she has a moral right to the freedom to grow old without being her son’s caregiver 24/7.  “A retirement of sorts, a hope of not changing my son’s diapers when he is forty-five and I am past eighty is a moral ‘right' in my view.”  In this regard, she believes that the community, the government and the families have to come together to find a way to care for people with disabilities (as well as the elderly).

I’m not sure I agree that we are "entitled" to be released from the burdens of caring for our children. Perhaps when our “children” are forty-five and we are eighty, it may be necessary, but I'm not sure it's our right.  I can't even imagine having to put Jack’s care totally in the hands of someone else. I suppose when he’s twenty, I will think differently, but right now, I can’t even “go there”.

Okay, so this book review is way longer than I intended. You still with me?

In summary, I will say that the book was an interesting read, but it had more of a political slant to it rather than being a human interest story.  I prefer the latter.  The book definitely gave you pause and food for thought, so it was worth the read.

This book was written by a Rabbi whose son was diagnosed with a degenerative disease when he was three years old.  His son died when he was in his teens.  The book primarily focuses on God and prayer and the relationship between the two.  Interestingly, the author believes as I do, that God doesn’t answer specific prayer requests.  (See, “The Tough Question” under Blog Thoughts on my sidebar).  The author discusses how prayer does serve a purpose, but not in the way that many people believe it does.  I’m in agreement with the Rabbi for the most part in this book, except for his belief that God doesn’t answer our prayers because some things are too big for even God to handle.  I think God can handle whatever he chooses to handle, but he’s decided some things are best left for us to handle without his intervention -but with his support and guidance.

An excerpt that is good food for thought:

“Everyone is our brother or sister in suffering. No one comes to us from a home which has never known sorrow.  They come to help us because they too know what it feels like to be hurt by life. 

I don’t think we should confront one another with our troubles.  (You think you’ve got problems? Let me tell you my problems, and you’ll realize how well off you are.”) That sort of competitiveness accomplishes nothing. It is as bad as the competitiveness that spawns sibling rivalry and jealousy in the first place. The afflicted person is not looking for an invitation to join the Suffering Olympics. But it would help if we remembered this: Anguish and heartbreak may not be distributed evenly throughout the world, but they are distributed widely. Everyone gets his share.  If we knew the facts, we would very rarely find someone whose life was to be envied.”

I’m not sure the book ever really answered the question “WHY" bad things happen to good people.  I wasn’t overly impressed with the book, but it was an easy read and if I took away one positive point from the book (which I think I did), it was worth the read.


It’s late, so I’ll have to give you my review of “The Essence of Happiness” tomorrow. I’ll also share a list of books that I’ve read over the years that I really like.  No more long book reviews though, I promise!

Seriously, are you still with me?!


worthy said...

Thanks for your comments Ann. I think, based on what you've said, I won't be putting any of these on my 'books to read' list anytime soon. Keep the reviews coming! (I'm amazed you find time to read!!)

CS said...

I'm with you. I think I'll pass on Four Walls of My Freedom for now but keep it on my list. I don't need political at the moment. Maybe I will finish Bad Things. I like, "Anguish and heartbreak may not be distributed evenly throughout the world, but they are distributed widely." So true and and so hard to remember when it's 2am and I'm trying to figure out what's up with The Booger. And FWIW, I like the book reviews. Thanks!

Anonymous said...

yup, still with ya:)
xo christina
looking forward to future reviews...

Susan said...

"But, from his perspective, he is loved, pain-free, well cared for and entertained every day and that is all he needs to be happy and have a life of value. (Of course, I’m just surmising this, as Jack has never actually told me how he feels – I can only base it on what I observe.)"

I think you are right on! He probably has his unhappy moments like we all do but for the most part he seems very happy. Thank God for that, right?!

I'm impressed you've been able to do so much reading. I'm looking forward to hearing which books you do recommend. Based on these reviews I'm not going to rush out to get either of these books.

Anonymous said...

Yes, I was with you all the way to the end. I enjoyed the reviews and look forward to the next one.


Vicki said...

I'm still here, definatly still here. Appreciate the reviews and thought-provoking quotes & comments. Many years ago my mom read "Bad Things" & it helped her through some bad times. I remember reading it and gaining some insights too, gosh, I just realized I must have been in my teens or very early 20's then!

Christy said...

I didn't think that was too long. Very interesting. Thanks for reviewing. Frankly, I'm impressed you read - much less provide reviews! I'm still trying to read "Where is God When it Hurts?" So far it's talking about physical pain and how important our pain system is. Fascinating stuff. Still haven't finished it.

Looking forward to the next. Although I might recommend a comedy? Laughter is the best medicine... ;-)