If you haven’t heard of Lurlene McDaniel before, then congratulations, you probably didn’t grow up in the 90s with a strange passion for morbid stories about teenagers dying from serious illnesses. Aaaand I just outed myself with that one sentence, didn’t I?
I used to love her novels. I read pretty much every one I could get my hands on. Couldn’t tell you why I found them so fascinating. I always had an interest in medicine, dating right back to childhood. When I was a kid, I would tell people I wanted to be a pediatric oncologist when I grew up, and I knew what those words meant. McDaniel’s novels about teens dealing with illnesses like cancer, HIV, cystic fibrosis, were thus right up my strange little alley.
McDaniel apparently started writing these sorts of books after her son was diagnosed with diabetes, as a way of coping with the implications of a young person dealing with a serious illness. After a while, though, I suspect that the books became less about a coping mechanism and more about capitalizing on tragedy, as so many of her novels involve the protagonist dying.
Now, I can’t say that for certain, because I’m not her. But a lot of the books I read as a kid featured death as the end-point. Not characters coping with the idea of mortality, but then dying beautifully and tragedy when their respective illnesses progress too far. There were some educational aspects to the stories, informing readers about what a lot of disabled and chronically ill people experience in their lives, but for the most part, it was pure tragedy/inspiration porn.
The first book of hers that I ever read was Sixteen and Dying, the story of a teenage girl who contracted HIV through an emergency blood transfusion as a child and who just learns of her diagnosis.It was published in 1992, when the odds of surviving and thriving with HIV or AIDS was significantly lower than it is today. As a kid, I thought it was an amazing story of a girl trying to overcome horrible odds but succumbing in the end because disease is just too powerful.
As an adult, I think, “Damn, that girl could have lived a much better life if she hadn’t been more concerned with completely denying her diagnosis for 3/4 of the novel.”
That was often a big theme with early McDaniel novels, when I think back on it. A lot of the protagonists ended up dying because they didn’t take care of themselves properly. Not freak accidents, not pure rotten luck, just… denial and poor health management. The characters were often pretty caught up in trying to appear “normal” that they would hide and deny the realities of their lives (especially from The New Cute Boy in Town) that it ended up biting them in the ass in a very fatal way. A lot of the characters were Quintessential American Teenage Girls, after all, so naturally it’s just perfectly understandable that they’d be more concerned with dating than staying healthy.
This wasn’t the case for all of them. But it was enough of a recurring theme, even in the books I read recently, that it got old very quickly.
Another theme I noticed while rereading a lot of these books was that all of the characters were from very comfortably well-off families. If there was a novel where the story’s tragic aspects came from someone getting diagnosed with a chronic illness that was easy to treat but they couldn’t afford the medication, I didn’t encounter it. No, the characters nearly always came from families who owned sizable houses, had parents with good solid well-paying jobs, where cost was never a real issue even when it very much should have been. There were some poorer characters in the books, but they were often side-characters. The struggle was never about the protagonist being able to afford necessities.
This was doubly true in the One Last Wish series, in which characters are given a huge financial gift by a mysterious benefactor, to allow them to have one great expensive hurrah and make their dreams come true before they die. Only a couple of times do I remember reading that some of that money went toward caring for their health. Most of the time, part of the story’s conflict was about how they should spend that very large amount of money.
Also… Okay, I know that in many ways, I am not the target audience for these books, and my priorities are not the same as everyone else’s. I also know that even when I was as old as most of the characters in these novels, my mindset toward fashion and attractiveness were not the average person’s mindset. But… There is a damaging mentality behind a lot of aspects of these books when it comes to appearance. In I’ll be Seeing You, the protagonist has a slight facial deformity, so when she start falling for a blind guy, she starts hoping he’ll never see her oh-so-ugly face, and part of the novel’s triumph is that her families agrees to get her cosmetic surgery to make those pesky imperfections disappear. In Goodbye Doesn’t Mean Forever, the rich character reflects that she was able to buy a real-hair wig for her best friend who was undergoing cancer treatment, and when her parents say that she probably ought to back off and focus more on her own life than that of her friend, she says, “At least I made her pretty again.”
I’m sorry, but that attitude is toxic as hell. Imagine being a kid or teen newly diagnosed with cancer, and coming across one of these books. You think to yourself, “Wow, there are books written about people like me. Maybe I’ll read this so that I don’t feel so alone and like nobody understands what I’m going through.” And then you come across crap that reinforces the idea that oh yeah, when chemo makes your hair fall out, you’re not going to be pretty anymore. Not until you have long luxurious locks again. And don’t get dare end up with any scars!
A Time to Die had a “delightful” line in it about the how when the main character, a girl with cystic fibrosis, breathed, it sounded like a kitten purring. This line was said by the dude she had a crush on (the crush was mutual, but I don’t think they actually got together in the book). This is supposed to be all sweet and sexy. Now, I don’t have CF, but my asthmatic lungs have harboured some nasty infections over the years, and lemme tell ya: the wheezy crackle of lungs filled with mucus? It ain’t sexy!
I’m going to be completely honest here: a lot of these books fed into young-me’s desire to grow up disabled. That sounds horrible. It is horrible. But between this stuff and some early disability activism, I got it into my head that the only way I would ever be special was to be sick. Look at those kids on the Easter Seals stamps! They might have cancer, but they’re smiling, and god knows my face will never be on a stamp. Look at the characters in Lurlene McDaniel’s novels. They’re pretty and tragic and people like them, and nobody’s ever going to write a book about my boring-ass life. Not unless I get terribly ill like them.
Maybe it’s universal payback that I ended up becoming disabled as an adult. “Oh, you think that makes you special, do ya? Well, enjoy pain so bad you sometimes can’t get out of bed, declining mobility, and the idea that it might take years and years of seeing multiple doctors to ever get a diagnosis or treatment plan. And still nobody’s going to write a book about your boring-ass life.”
I read a while ago that tuberculosis used to be used as a romantic plot point in old-timey novels because it gave female characters that breathy voice and retiring personality and was “a pretty death” that could be exploited for a tragic angle. McDaniel’s novels have that in spades. Not all of them… but the vast majority of them. And since they’re often fairly heavy on the romance (never fear, it’s “appropriate romance” where kissing is the most anyone does and rarely do people actually think about sex unless it’s to think about how they’re Not Ready For It), chronic illness and disability in her novels are used very much the same way tuberculosis used to be. AIDS lets you just slip gently away. Cancer lets you just slip gently away. Cystic fibrosis just lets you slip gently away. And aren’t those attractive boys just so good for loving girls who are so very sick, when any relationship is doomed to genteel tragedy?
I’m being very scathing in this post, and that’s entirely intentional. McDaniel’s novels may have been some groundbreaking representation back in the very early 90s, but once you read a few of them, the gloss really starts to rub off and you see so many of the problems underneath. I had hoped, upon doing this binge-read, that I might find something really positive to say about them, something to redeem the stories I once perversely enjoyed.
Really, the one I can speak most highly of is To Live Again, the 5th novel about Dawn Rochelle. Diagnosed with leukemia at age 13, she goes through chemo, a bone marrow transplant, worry about rejecting that bone marrow, enduring the loss of friends while she keeps living, and she does a whole lot of growing up over the course of the series. To Live Again actually addresses a less commonly-known side effect of her cancer treatment — in her final year of high school, she has a stroke that was caused by side effects from her medications, and she has to learn to deal with partial paralysis. I don’t see too many stories address the fact that just because you’re in remission, just because you might even be past that 5-year milestone and be considered cured, sometimes you’re going to have to deal with additional struggles brought on by the very thing that saved you.
When so many stories about cancer either end in death or, “Congratulations, you’re cured, now cancer is just this bad memory tucked firmly away in your past,” it was actually refreshing to encounter something that said, “You’d think that, but.”
So do these books hold up to my youthful memories? Not one freaking bit. They’re honestly quite bad, and not even just from the standpoint of being tragedy/inspiration porn. Where once I thought that the pure medical aspects of the story were fascinating and educational, the ones I read recently had so very many errors. In one, a lumbar puncture was confused with a bone marrow aspiration. One involves a needle stuck in your spine, the other involves a needle stuck in your hip. And I’d hand-wave this as a simple mistake if I hadn’t seen both procedures referred to correctly in multiple other novels. They are so terribly bad, filled with misinformation and toxic attitudes and characters that could be carbon copies of other characters, just with different names.
When Rachael Lippincott’s Five Feet Apart came out, I read it. It had its problems (contradictory medical info, a Bury Your Gays trope example, etc), but it was a lot better than McDaniel’s stuff. A lot of people in the disabled community liked it. I saw a lot of people with cystic fibrosis comment that it was good representation for the lives that they live. I had my reasons for not liking it, but I can appreciate that others do.
Then Lippincott wrote All This Time. And The Lucky List. And they’re getting the same kind of good reviews I still see Lurlene McDaniel’s books get. And I can’t help but wonder if this is the beginning of a new wave of tragedy/inspiration porn in YA novels. Written better and with greater accuracy and representation, yes, and I’m not going to pretend those aren’t good things, but as someone who read a whole load of McDaniel’s novels, I can’t help but see loads of similarities, and it makes me anxious with the idea that someone (not necessarily Lippincott) will take the same road. Going from well-intentioned to capitalizing on the experienced pain of people who already find that most of their representation is, well, Lurlene McDaniel novels.
Here’s hoping that’s not what happens.