Apparently there's a book out called "I Wish My Kids Had Cancer: A Family Surviving the Autism Epidemic." No link -- if you want it, go search it out.
I won't get into any moral outrage over the title of the book, though I will admit to feeling physically ill just reading the title.
But it did bring to mind the question -- which poison would you choose for your child? Potentially lethal poison, but other than that, your child will be "normal"? Or a non-lethal poison whose affects will last your child's entire life? The penultimate Sophie's Choice.
I don't have an apple-apple comparison to make with the book.
But I do have a friend, Nancy, whose blog I follow, and she, mine. I don't remember how we found each other. But we "met" when Little Warrior was going through Cancer Part One. At the time, she was trying to come to terms with the diagnosis given to her only child -- Williams Syndrome.
She and I have never contrasted our children's situations. We have compared notes. There's some overlap between our experiences.
I know that I have never looked at her and thought, "Oh, I wish Little Warrior had that instead of cancer." I have read her blog and felt myself lucky at times. And by the sympathy she has extended to me during hard times, I feel safe in saying there have been times when the last thing she would have wanted was to be in my place.
Nothing's clean in either story. Even if LW makes it to be called "cured," for the rest of her life we will have to worry about cardiac toxicity, secondary cancer caused by the chemos, issues with the radiation .... etc etc etc.
William's syndrome has its own health problems, necessitating trips to various specialists. Like me, she reads stories of other children with the same label as her child ... and some have very sad endings. And she cries. Just like I cry.
I don't wish my child had autism. Or Williams Syndrome. I doubt she wishes her child had cancer.
I wish my child were healthy. I bet she does, too.
Suffering Olympics. Dear god, save us from such idiocy.
ReplyDeleteAll life contains suffering. To even engage in imagining that one's own exquisite suffering is somehow qualitatively worse than another's is madness, perhaps narcissism.
Pain sucks. Fear sucks. Misery sucks.
Wishing for a different pain and misery, thinking that someone else has a better deal is nothing more than screaming is deranged. And it's the most grotesque sort of poor-me-ism, and leads to all kinds of offensive stupidity.
Step back from the stoopid. It's sad. It's rarely curable.
To me, there's something sort of morally repugnant about wishing your kid had cancer (regardless of the circumstances).
ReplyDeleteThough from an editorial point of view, and knowing that authors often don't choose their own book titles, I wonder if the author made an offhand unthinking remark and it was picked up by marketing. There can be a LOT of pressure on an author to go along with titles.
The title is just as offensive from the other direction, if not more so.
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I only wish that when people write things like this that a cosmic foot would give them a swift kick. No one should think that any problem is better to have.
ReplyDeleteIt's a gaff, a mistake. They thought it was a way to say "Autism is really really bad, so bad that it compares to cancer." but they didn't think it through. They didn't think how bad it sounds from the other side, they didn't think how bad cancer really is, they didn't think.
ReplyDeleteWe all make mistakes like that, in casual conversation. But when it's a title of a book, we should have had some time to think about it, check reactions, see what it felt like. Why didn't they? (and it sounds like it probably was the publisher -- it's hard to believe a suffering parent would stick with that for long.)
I am amazed at how much I relate to your feelings. Underneath our diagnoses and struggles, we are fellow mothers. WS has given me many gifts, and one of them is a deeper compassion and understanding of others' pain, no matter what it looks like. I have had people APOLOGIZE to me for complaining about their pain because it's "probably not as bad" as mine is. Pain is pain. Thankfully, mine has opened my eyes in so many ways.
ReplyDeleteThank you for sharing your story with the world. I think many people can relate, even if the diagnoses are different. I admit that I have gone to some pretty awful places in my head since we received our diagnosis. In the dead of night, I remember wishing God had taken limbs instead of our son's cognitive function. Truthfully, I have wished for a lot of messed up things without really wanting them to be true. The reality is, though, I would never truly wish to trade diagnoses. We are both waiting for the other shoe to drop and will for the rest of our lives with regards to our childrens' health. That is something else we have in common. I see more similarities than differences and always have.
Thank you again for sharing your story. Means the world to me.
My kids have special needs. Not cancer. I can't imagine a world in which I'd ever wish cancer on them. It makes me physically ill to read that title too.
ReplyDeleteMoreover, I think there is something really problematic about current thinking around autism. I wrote about it for a while on my blog: http://becausethatiswhatmylifeislikerightnow.blogspot.com/search/label/Autism (start at the bottom and read up).
p.s. I've sat with this for a minute, and honestly, I'm starting to think this is actually more offensive than anything in how it reflects our thinking about autism. That thinking is that the autistic person is not fully human, and certainly not worth the life they inhabit. They are just a "shell of a person," and it would be so much easier if this could simply lead to death. Then everyone could grieve, right?!
ReplyDeleteI can't even begin to address this in the small space of a comments section, but clearly this type of thinking about autistic individuals is very dehumanizing.
Trust me when I say that the title of the book was completely the author's doing - it had nothing to do with the publisher. I know this bc I know the author and am also just as baffled and disgusted by the title as many others out there are. The author tries to justify the title by saying that he really doesn't wish that on his children - then why the hell would you post that as your title? Common sense would dictate otherwise
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