Book Review: Karen
Dear Mrs. Killlea,
In the spring of last year, somebody told me about your memoir, Karen. I thought you might enjoy hearing that you’re still selling books via word of mouth 60 years after you originally published it, and 31 years after your death.
I read a couple of chapters while on a trip somewhere. I can’t remember where I was going, which is surprising considering how little I’ve traveled over the past couple of years. When I got back home, I unpacked the book, placed it on my nightstand, and promptly didn’t touch it again for over a year.
Part of the reason for my lack of enthusiasm was the subject matter. The book is about your daughter Karen who developed cerebral palsy at birth, which is also true of my daughter Em. You’d think that would make the book quite relevant to me. But it hit too close to home for me, even though our daughters’ situations are a bit different.
Karen was born three-months premature, while Em was born on her exact due date. Karen developed spastic cerebral palsy, whereas Em has dystonic cerebral palsy. In other words, Karen’s muscles were flexed almost constantly, making her quite rigid most of the time, and Em’s are mostly limp but will over-flex when they move, which often happens involuntarily.
The opening of your book is heart-wrenching.
You write about how you visited over 20 different doctors to get additional opinions on Karen’s condition. Your steadfast belief that she wasn’t “retarded” (a word usage that’s widely frowned upon these days, thankfully), despite countless experts telling you otherwise, is remarkable.
I said an audible “wow” to myself when I read what one of those doctors said to you:
“I suggest you take out a good-size insurance policy so that she will always be provided for. Then take your child to an institution and leave her and forget you ever had her.”
I know you were very religious, so I’m sorry for writing this, but holy shit. How could someone, whose profession is ostensibly all about helping people, say something so harsh? I’m 99% sure that’s where I stopped reading last year.
The other reason why I couldn’t get into your book, and why I contemplated not finishing it more than once after I picked it back up, is because it’s just not written very well.
Sure, part of it is probably because the English language evolves and has undoubtedly changed since 1952. But great storytelling is still great storytelling and your skills were lacking in that department. Sorry. There was so much drama in your life, but instead, it often felt like reading a series of “and then”, “and then”, “and then” that droned on for far too many pages.
There was the part at the end when you saw Karen write for the first time. You could’ve held your readers in suspense, and made them want to keep turning the pages to try to find out what happens next. To be fair, you attempted to do it, but you gave away the goods too soon.
Karen wasn’t your only child and I’m sure you felt it critical to tell your readers all about each and every one of them, in detail. I mean, I get it. You cherished all of your kids. But you could’ve cut out so much and the book would’ve still had the same overall impact.
The details I really wanted were sorely lacking. You only briefly touched on how you founded the Cerebral Palsy Association of Westchester County. Then, later on, you were suddenly a co-founder of The National United Cerebral Palsy Foundation. Yet, as far as I can recall, there was no story about how that came to be.
After finishing your book, I know way more about the one time you bought a Christmas tree that was too tall for your living room than how you formed a national organization that still exists today, 73 years after you co-founded it. I know the title of the book is Karen, so the vast majority of it should be about her struggles and triumphs. But you helped start a movement that endures today precisely because of Karen’s disability. Maybe you should’ve written a bit more about that.
But who am I to be overly critical? Your book has sold over 2 million copies—a feat nearly every other author who has ever existed could only dream about. And you’ve impacted myriad more lives than that. There’s a line I could draw directly from the words you penned all those decades ago to the medical services and benefits my daughter is eligible for now. Scientific studies and facts and figures can only do so much to sway public opinion. Stories, even average-written ones, are what move people—and laws—to change.
As I sat down to write this letter, I searched online for some information about Karen. I’m not going to spend time explaining what searching online means to you. Let’s just say that it’s a very quick way to look up stuff about basically anything you can imagine. Anyway, I wanted to know more about Karen’s life after your book was published. I even thought there was a chance she could still be alive.
I learned how she lived a quiet life mostly out of the spotlight, other than meeting with Pope Paul VI twice. But most importantly, from my perspective as a father to a daughter with cerebral palsy, she was able to live an independent life as an adult. This gives me hope—and I know that you know how important hope is.
As I scanned down the page, I read that Karen died at the age of 80 on October 30, 2020—nearly two years ago now on the same day as my birthday. And I felt another line—the one that goes from you sitting in your quiet home writing your words, to me sitting at my home writing mine. Thank you for writing yours.
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I have cerebral palsy too -- I was born premature, in 1994. I don't think I'd like this sort of book either, after actually reading some of it, and after reading this review. I think we need more stories from disabled people themselves, not from their parents or family. We have a lot to say, it's just that many people don't want to listen.
I enjoyed that you wrote this as a letter to the author. I never heard of the author or book before.