Friday, May 14, 2010

Be Careful, Handle With Care

This week, my friend's daughter called after me 'Be Careful!' when I was doing something.  She had heard her parents say this often around the new baby and probably in a number of other situations.  It was pretty funny. Cute and funny.
I also watched one of my favourite movies, 'Unbreakable'.  This is a movie about a man who has Osteogenesis Imperfecta, or OI. Although the man in this movie has some pretty significant mental health issues, there are times I can relate to him.  My condition has many similarities to OI, but mostly, that my bones break very easily.  'Be Careful' is something I've heard all my life and it's become a part of my life now.  Always needing to be careful, but I know I have to live and not be focused on the possibility of injury all the time. And, I think I do - I enjoy life and experiences. I had a doctor once that told me I need to live - that I need to take risks sometimes and I can't avoid life experiences (the example was a 4 day canoe trip) just because I might get hurt.

Which brings me to the book I was reading this week, "Handle with Care" by Jodi Picoult.  I started reading it a few weeks ago, then put it down.  I wasn't sure I'd finish it. It hit too close to home for me.  This book is also about someone who has OI.  A young girl, about 6 years old.  The book describes pretty graphically some of her breaks.  That's probably the part that gets me most as this is something I often think about.  I tend to imagine it all too well when I read something like that.  But, more than the breaks, the book is somewhat disturbing because the mother initiates a wrongful birth lawsuit. It appears, at least originally, that the lawsuit is solely about getting a large sum of money to be able to care for the daughter. In some ways, I understand where she's coming from.  They live in the US where healthcare does not cover many of the health related expenses.  Our health care system doesn't either, but it's certainly better than the American system.  For example, the medication I take is not covered by the health care system in all provinces (not the one I live in - wait, no meds are covered by the province here unless you're on social assistance or other government money).  But, it's also a medication that's not covered by all insurance plans.  There are other expenses, too, like mobility equipment, maintenance of it, and buying some things that make life a little safer or easier. Or ensuring housing is accessible enough. In the US, where the book is set, there are many more health related expenses that our healthcare system covers. The family was in debt way over their heads just covering surgeries, casts, and other medically necessary equipment. The mother wanted to provide for her daughter and a lawsuit seemed to be the way to go. At first it seemed like the lawsuit was all about money. I don't agree this is the way to go, but I can see, in desperate situations, how else will they cover the medical expenses that will add up.  It was predicted to cost $30,000 per year for every year the girl lives. But the lawsuit cost a lot more.  A lost friendship.  Family problems from every angle. A sibling feeling unloved and turning to self harm and binging/purging. As you get further in the book, though, it turns out, the mother had considered the idea of abortion and continued to wonder what her life would have been like had she gone through with it throughout the life of the little girl.  Would things have been different or better had she not been born? Would it have been better for her little girl to not have suffered the way she did?  In many ways, it felt like the mother was selfish. Yet, she championed for her girl.  Fought for preventative measures.  She knew the medical system inside and out and knew what to do when 'breaks' happened.  She loved her daughter deeply. It's just hard for me to grasp the idea that it's ok to say the girl shouldn't have been born at all, even if it was 'just to get money'. What makes it worse is the girl heard her mother say this. What kind of message does this send the child?

This book also made me think about my own family.  What it was like when I was growing up.  I don't know how my sisters reacted, really, to the fact I was in and out of the hospital so much, or the fact my bones were breaking so often. In many ways, that was just life. The way I knew it, anyway. Overall, I think I was a happy child. I had to be so careful and couldn't roughhouse, or play outside. That was hard and lonely sometimes. Was it hard on my sisters?  I know I got more attention than them sometimes because of my breaks.  I know that my younger sister was quite protective of me - standing up for me when people teased me, holding my hand when I walked outside.  We're pretty close in age. I'm sure she sacrificed a lot, maybe even without knowing it.  I lived through her, though.  I loved watching her play sports.  I knew I couldn't, but it was a way to be part of things.  I wasn't that close to my older sister when I was young, but I attribute that to our age difference. I'm sure she made sacrifices, too. And, what was it like for my parents? I know my mom was quite overprotective (or so it felt), but in reading this book, it helped me understand a little better why she was the way she was.  I often resented not being allowed to go outside to play with the rest of the kids, although I do understand, and, to be honest, I didn't linger on it long at the time.  I just found something else to do. And I wonder what it was like for my parents to live in fear all the time that I might 'break', as the book puts it. I'm sure it wasn't easy.

I think I had some irrational fears, too, that developed out of the fear of broken bones.  I was so terrified of any animal that moved, even if they were harmless, like a kitty.  Dogs were the worst. I was afraid they'd jump on me and push me over and I'd end up in the hospital again. Now, fortunately, I do like dogs. I read that people who have conditions like OI (although mine is not OI, but GO - Geroderma Osteodysplastica) often experience anxiety and develop some unnatural behaviours to try to protect themselves from getting hurt.  I'm sure I have done this.  I certainly experience anxiety at times when I think about ice, for example. It was evident the author did her research and I was happy to learn that people who have OI can and do have children. Again, I don't have OI, but GO is similar in the brittle bones department. I also feel like I can relate to the girl in the story.  I remember kind of going into shock after some particularly bad breaks, doing a weird shiver. Being so cold.  I also remember being on the outside in school, never quite fitting in. I had to sit out of gym class and had to do physio exercises instead.  Kids were assigned to play with me.  To stay in at recess.  I had friends when the weather was cold or ugly. On nicer days, nobody wanted to be my friend. I was a bit of a showcase, particularly in the hospital, but also in school and other places at times. Also, because I couldn't run and play like the other kids, I read a lot.  I grew in my vocabulary and in odd facts.  I learned to understand Plaut Dietsche fluently because I spent so much time with adults. I learned to enjoy figuring things out mechanically or logically.  I also excelled at playing music. It wasn't until maybe Gr. 5 when I started to have friends who stuck by me and actually wanted to be with me. For me, school got better as I went from elementary to junior high to high school to university.  I'm sure that's not typical, but that's the way it was for me.

After reading the book, I also felt quite blessed.  My condition doesn't seem to be as severe as OI.  Most of my breaks have not been major.  Yes, they're set backs and it sucks when it happens. I do live in fear that it will happen again, but I also can live at peace.  I've learned to relax and just 'be'.  My trust in God to provide has grown immensely in the past few years. I noticed this particularly the last time I 'broke'. It wasn't a major break but it was a set back of a few weeks. I seem to have gotten stronger as I got older. I'm also very glad that I don't remember many of my breaks.  I think the majority happened when I was quite young. I'm also glad for a supportive family that stayed together.  Although my parents may not have known of my diagnosis before I was born, I'm glad they didn't consider the idea of abortion. I have had a good life so far, overall. Yes, there have been set backs and some difficult times. There have been some really good times and experiences too. I'm also thankful for my faith and trust in God.  That has gotten me through some very difficult and lonely times. Like the little girl in the book, I generally maintain a positive attitude and see the positives in others and in situations. I believe things happen the way they do for a reason, even if we don't understand it always or right away.

As far as recommending the book, it depends on why you want to read it.  If you want to get a glimpse of what life is like for someone with OI or other brittle bone conditions, it may be somewhat educational, but keep in mind it's fiction and not entirely accurate. If you want a really good story, you might want to pick a different book.  If you want a book that could potentially make you angry, this is a good one  if you feel strongly about issues brought up in the book. One friend who read it commented the book evoked strong emotions of anger, particularly as she was pregnant at the time she was reading it. It does bring to light the experience of knowing your baby has a strong chance of not living beyond birth or facing significant disability if the child survives. For me, I had mixed feelings about the book.  In some ways, it might give you a tiny glimpse into some things I experienced, but at the same time, my experience was and is quite different.  It's definitely a 'drama' type of story.  The whole idea of a wrongful birth lawsuit is still something I struggle with. If you've read this author's other books, there seems to be a trend in the way she writes.  She writes as if writing letters to the character with the issue (in this case, OI).  When reading the book, I felt like the author was setting up the idea that the girl would die.  It felt a little predictable. Why else would they be writing to her? I won't say whether she does here, but what else is someone to think when it is so obvious the young girl doesn't have sections in the book. Mind you, her young age could maybe explain that. I was surprised I hardly got emotional when reading the book, actually.  I think it would have been different had a good chunk been written from the perspective of the little girl. Mind you, she might have had a much more positive outlook on life. At times, it felt like the book didn't really flow, and I still don't know why there were recipes every few chapters, other than that the mother was a baker. But, overall, it was a decent book. Maybe 3/5.


Elissa said...

i have also read that book Patti. Your thoughts on it are so insightful and really prompted me to think much more about that book. And by the way you are an AMAZING writer. I love reading your posts...i have just become addicted. xxx

Chana said...

Hi patti. As parents of an 11 year old with GO, your comments are real eye openers. Obviously every person is different, but its good to for us to read what YOU went through, in order for us to get an idea of what our daughter goes through a little bit.
BTW, we check in on your blog every so often. It really is great, and you are a great writer!
We also read the book you are refering to, and although it is fiction there are many things that actualy represent things of real life in OI families.
All the best,
Parents of Esther.

tinamarie73 said...

Hi Chana, I have a daughter who is 17 and was diagnosed with GO. I would love for us to be able to connect with each other. It makes living with a rare disorder harder when you feel so alone in a big world. If you want to you can reach me on find me on the Facebook page "Skylar Stacy's Journey with Geroderma Osteodysplastica".
Tina Mullins