It's extremely rare to get serious, deep December snow in Atlanta, and even rarer for the power to stay on (though many aren't as lucky as we are). Hope you're getting a chance to enjoy some snow, to comfortably enjoy the warm indoors, and feel comfortable telling relatives to back off of your holiday food choices. See you in 2018!
I’d wince as the home health nurse pinched my belly, before she even jabbed the needle into the skin, and before the real pain—the Cimzia medication being pushed in by the syringe plunger—began. Her Southern accent was soothing, but she would come up with distraction techniques I wasn’t the biggest fan of:
“You’re on a beach, sipping a strawberry daiquiri.”
I prefer pina coladas.
“You’re looking at the face of the best-lookin’ guy you’ve ever seen.”
Not sure how that’s supposed to be meditative. It did distract me, but in an irritating way that wasn’t within my control, and so I felt the pain just as strongly, plus a quiet rage.
But it was fine. She was the one doing the injection, and so I just had to get through it, cloying cocktails and all.
But then one day, metro Atlanta flooded. In a way people had never seen; people couldn’t get out of their neighborhoods. Others were navigating the Krog Street tunnel by kayak, which was the only part of this crazy flood that made me really jealous. For days, no one could go anywhere—including my home health nurse, when my injection was due.
I was flaring already, and so being a week late with my injection made me really anxious. I already had the syringes; all I had to do was … purposely injure my own body and mechanically shove a foreign liquid into it. NBD. The home health nurse said she’d even talk me through the steps over the phone, although I already knew them by heart, having watched her do it dozens of times. So I gathered my alcohol wipes, nitrile gloves, sharps container and courage together, and … chickened out. The nurse came three days later.
I started hating myself for my cowardice. I know I CAN do it, so why WON’T I? Later, when I was much sicker, I was put on a high dose of prednisone in addition to my Cimzia. Somehow, the prednisone gave me the most badass, f&*%-it attitude ever, which directly led to me being able to inject the medication myself like it was nothing. The same nurse came and trained me to do it myself. It hurt like a wasp attack, but it was fast and over and easy.
Then, I had a major surgery, to remove 10 centimeters of intestine. The surgery wrecked me emotionally. I had had to defer starting grad school for it, so I had nothing to do during my recovery but watch Roseanne reruns and weep in my pajamas, which I had also worn the day before. Suddenly, I was filled with injection anxiety again. I can’t do this; it’s too important! If I do it wrong, my medication won’t work, and the surgery will have been pointless! I need my nurse back!
The same nurse came back, concerned that I’d somehow regressed, hoping to re-teach some skill that might’ve fallen out of my head from the anesthesia. I insisted that things had changed and I just couldn’t do it any more.
Eventually, I got switched to Humira, and was forced onto the auto-injector pen, which comes with zero nurse assistance. I had to do it by myself. I had to admit it was very easy, but it was also extremely painful. Nothing could distract me from the pain of 10,000 wasps burrowing into my skin butt-first to lay their liquidy eggs under my flesh. All within about 6 seconds.
Then, I got a refill of the Humira, and forgot to remind them to give me the auto-injector pen, NOT the prefilled syringes. A cooler of 6 very expensive syringes shows up on my doorstep. My mind cannot find a way to justify not just doing it my own damn self.
It was a really big deal at first. I required a church-like reverence for the conditions I required in my home before I injected. Now, I could be sitting on a bed that someone is jumping up and down on, carrying on a conversation, and still inject it. How did I get here? My best tips:
Watch TV. Something fast-paced and dialogue-heavy and breezy, but interesting enough that you can get a little engrossed in it. I use Grey’s Anatomy. It’s very tempting to make the whole experience almost a dogmatic religious one—nothing else can be happening! The whole house needs to shut down so I can do this one thing! It’s as if there’s a home birth going on and we all need to pray and light candles. This is the opposite of what you want; you want distraction. You want it to feel casual and routine, and you have to fake it until you make it. Singing along to a song also works, but I prefer the passivity of TV-viewing. Just don't pick something that requires a lot of concentration.
YOU have to do it. This is hard to do once it’s already been a big deal, but that’s the mindset you have to have. It needs to be something casual that can be done while carrying on a conversation, while watching TV. You may think it’s better to not have control over it, but it really isn’t. It’s better if it’s something you’re doing to yourself, and will be better for all your relationships. Unless this is a parent doing this for a child, it's not really fair to cast your partner as the jerk who assaults you with a sharp object twice a month.
Slowly. Veeeeery slowly. It’s the speed of the med going in that is often the biggest pain-inducer. First, jab the needle in and leave it there (unless it’s an auto-injector. If you're on an auto-injector and you hate it, then switch to a regular syringe. Auto-injectors are painful no matter what, because they’re so fast. But TV can still help somewhat.). Once the needle is in place, veeeeery slowly start pushing down on the syringe plunger, one little step at a time. If you start to feel pain, back off for a minute till the pain goes away and watch TV for a few seconds, then right back to it, but very, very slowly. If you have control over it, and do it very slowly, this takes care of the vast majority of the intense pain.
Online videos: If you get overwhelmed when someone is trying to teach you something in real time (I’m a slow learner, likely due to the anxiety of worrying I’m learning a skill too slowly and thus embarrassing myself). But online demo videos take that pressure away.
Other tricks: I haven’t tried ice, but I’ve heard from others that they got mediocre results with this. Maybe pinching yourself in another part of your body would help. But honestly, this all sounds like ways to make a bigger deal out of it, which could backfire. But if it works for you, you should of course keep doing it. If envisioning strawberry daiquiris and attractive people works for you--or if drinking strawberry daiquiris works for you--who am I to say to stop?
It’s OK to backslide. It’s OK to be thrown by major life events and need to regain a schema for injecting. Just set a deadline for yourself for where you’ll try to do it yourself again. Hating yourself over it will only make you more anxious.
Halloween is my absolute favorite. But my absolute favorite things often cause Crohn's trouble, because I throw myself into doing them to the extreme, at the expense of sleep, eating well, and just general calm and self-care. I'm really trying not to do that this year, trying to actually follow the total of 12 tips I've come up with in past Octobers to having a healthier Halloween while haunted by Crohn's. May your IBD be a wispy spirit appearing faintly in the background and only in Polaroids, and not a mean-faced devil doll that won't stay in the garbage can no matter what you do.
Also, go see the movie IT. And if you haven't seen it before, please go rent and watch 1408. These are just general life tips.
5 tips for making a Halloween with IBD spooky, but not scary
7 tricks to making IBD less scary
The tagline is best embroidered on a pillow, then burned.
Cover image from Wikipedia
I adored everything about "Everything, Everything." At first. After reading the e-book sample, I had absolutely no doubt when I purchased the whole book. I was really looking forward to spending time with this protagonist, Maddy, based on what I'd read so far, and the young romance was adorable and believable. And she has a chronic illness, like meeee!
Maddy's voice is immediately clear and distinct, charming and authentic. She's cooped up in her bedroom because she can't be exposed to germs or allergens. But because she's been exposed to the world through movies, books and the internet, she often thinks similarly to a typical teenager. The main difference is she gets along almost perfectly with her mom, because her mom is most of her very small world. And because rebellion can't reasonably compete with the legitimate threat of certain death since before you can remember. At least not until Maddy has something or someone specific worth rebelling for.
I felt like I could relate to Maddy, because I have been a sickly (if un-diagnosed) teenage girl with a very protective mom, and I know what it's like to just want to live, and see, and do, but be limited by your body and your mom. This early-novel Maddy is actually way more limited than I have ever been, which has the bonus of letting me feel a little sorry for her, instead of the other way around like in real life.
I started writing this post having not seen any other reviews of the book, but having read and agreed with the awesome Ava Jae on the problems in general with literary Miracle Cure or dead-protagonist endings. But now I've read some of these reviews, and it's made me consider new aspects of the book, while also feeling like some points were made so well by those reviews that I won't attempt to thoroughly re-address them here.
I should say that this review is meant for people who have already read the book, or who are trying to decide whether to read the book or not and don't care whether major and minor plot points are revealed to them (including people who may have seen the movie, which I have not yet). And this is a good time to warn anyone else that ...
Wikipedia: CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=165258
Spoilers from here on out. We quickly learn that Maddy is trapped inside because she tells us she has SCID, or severe combined immunodeficiency. A lot of people refer to this as "bubble boy disease" or some variant of that, which might be incredibly irritating or offensive to some people with SCID, while some people with SCID might not care, or even use the term themselves. Just like how not all people with Crohn's love (or hate) diarrhea jokes, and not all accountants like blueberry muffins. Sick people: They're just like us!
I guessed the twist ending to the book at some mid-book point, maybe partly because I'm sick a lot and scrutinize medical care depicted in fiction, but also because despite my hatred of other people spoiling plot twists for me, I like to try guessing early on. And also because it's not that hard to guess in this case, if you notice the red flags the author has planted for us:
First red flag: Maddy never sees any doctors other than her mom. Ever. Her architecture teacher is allowed in sometimes, because apparently that's very important. But Maddy's mom is the only MD who ever monitors her health (and the nurse's monitoring seems to be both not substantial enough--blood pressure and heart rate--but also irrationally frequent considering she's trapped indoors, at a level only warranted for someone exposed to both Ebola and OCD).
Second red flag: And the whole backstory with the traumatic loss of Maddy's father and brother seemed an important detail that would be largely irrelevant to the story if not to explain and foreshadow something else (mom's mental state), and also to conveniently not have any family members around to question why Maddy's freedom is so severely limited.
Third flag, pink and half-mast: I'm not sure how much of this was intentional, but there were some "soft" red flags for me as well. It seemed like Maddy's future aspirations had been too quashed (presumably by her mom, at some point, overt or implied) and were framed more around her always relying on her mom. For instance, couldn't Maddy reasonably move out into her own house, maybe even where Olly comes home to an airlock each day? Couldn't Maddy study to be an architect, even in her little bubble? Couldn't she have at least gone on birthday joy rides with her mom around town in a purified car (and hell, why not swing by the immunologist's office while we're out?)? Couldn't a lot of different people have safely communicated with her through their big windows downstairs? And shouldn't her mom be training her to be at least a little independent financially and emotionally, since her mom could die before Maddy did (and then who would play Fonetik Scrabble with her and pay off her Hawaii-trip credit card balances?)?
(As an aside, as another reviewer pointed out, it's a little hard to believe that Maddy never, ever thought to Google her own illness, see what treatments might be available, even join an online SCID support group or message board. So that's less a red flag for the twist ending than just a seemingly overlooked or ignored detail.)
Several things were just a little off, which is of course intentional, to give the reader the "ohhhh!" reaction instead of the " Wha ... but wait, though ... " when we find out. We're supposed to both have not guessed it, but also realize we had the clues all along (*like the ending for "The Sixth Sense"*) so we're not angry at the storyteller for tricking us.
That is how it's supposed to go.
So, the plot cranks forward. Ultra Sick Girl meets a super-healthy and fearless (but secretly some fears related to his family, which will help us swoon over him) boy, they fall in love and even kiss despite the risks, and Maddy runs away with him to Hawaii. But then she gets extremely sick and is rushed to the hospital, presumably proving her mom was right all along. But theeeeeen, Maddy gets an email from the hospital doctor who treated her in Hawaii (her first encounter with a non-Mom MD in maybe 17 years) that says she doesn't think she's ever had SCID and to see another doctor about it, confronts her mom about this, her mom's all weird about it and has no good explanation, yadda yadda, then Maddy says: "And that's when I know for sure. I am not sick and I never have been."
And that's when I knew for sure: I'm gonna have some major issues with this ending. I started feeling fidgety and filled with mild dread, because while I loved the main characters and the story up until that point, and even agreed that "whoa, that is a big twist that could be interesting," I couldn't help but feel resentful that I'd been duped. I was made to feel like this character and I shared this fate--a chronic illness that was often a heavy fog over our capacities to live our lives how we wanted. And then it turns out Maddy, my new sick friend, got The &$%@# Miracle Cure and ditched me.
It's better than her dying, for sure--I was worried for a short while that that would be the ending. But the same type of damage is done by her being cured. Because as YA author and blogger Ava Jae has discussed, these YA illness books killing or curing all their chronically ill characters sends the message that your life isn't worth living if you have to be sick. They tell teens they should devote every scrap of the limited energy they have not to making the best of the situation and acting in reasonably healthy ways, but in "solving" their illness problem once and for all, and if that doesn't work out, just blow a ton of borrowed money and risk your entire life to go on one kick-ass trip, even if it kills you. Be cured, or risk death! Which is a terrible message, because you don't have to make your one purpose in life be getting completely better or even halfway better, because:
A) This may never happen,
B) For many of us, this is very, very unlikely to ever happen,
C) You're likely a person who has other, more important qualities than your illness,
D) You are a person worthy of love, admiration and respect, the same as anyone else, and your life is just as worth living as a Perfectly Healthy Person's (whoever that mysterious, obnoxious person may be), and
D) This whole outlook of "the key was inside you all along" sets illness up to be viewed in our culture as a moral failing--that you just want to be sick, that you gave up and stopped trying to get well just because you won't pay $400 for LEAP testing, or try Whole 30 just in case it cures everything for everyone everywhere. It's a culture that is uniquely set up both to blame you for not eliminating gluten/dairy/cats/onions/mushrooms or whatever to cure yourself, and then to mock you for eliminating these same things. You're either lazy and self-defeating, or an obsessively obnoxious dork, or an insufferable damaged snowflake. You can't win--unless of course you do manage to cure yourself, in which case phew, you're one of us now, and we can stop making pouty sympathy faces at you and admit that we're super-annoyed when you dine out and request a special order for "health reasons."
It's a culture that is uniquely set up both to blame you for not eliminating gluten/dairy/cats/onions/mushrooms or whatever to cure yourself, and then to mock you for eliminating these same things.
But maybe we should lay off, one might argue; I mean, surely this woman should just be allowed to tell a good story, right? Do we all have to be so sensitive and trigger-warning-happy that we can't even create a decent, high-stakes twist at the end of a book?
I'd say yeah, you can tell whatever story you want. And no, you don't have to be sensitive; you can write whatever someone will publish, including if that publisher is you. But if you aren't a member of the group you're writing about, and you're writing something you care about and want to be proud of, wouldn't you want to actually talk to real people with the illness you're writing about, to make sure you're not way off about some part of their experience? Won't that only make the creative process easier for you? Note: If all this sounds like a real drag, you could always set your book in a made-up universe with a fictional illness, and make your main character non-human.
One extremely successful example of someone writing thoughtfully on an illness they don't themselves have: John Green wrote "The Fault in Our Stars" without being female, teenaged, or having terminal cancer, but he had experience as a children's hospital chaplain. Because he's exceptional at what he does AND did his research on the people and not just the disease, he was able to pick up the voices of both Hazel and Gus and write a book that felt incredibly real. But then again, it felt incredibly real to me, and I am not a teenaged girl with terminal cancer, either, and neither are most of Green's readers who made the book so successful. It might be successful because it talks about this experience in a way that a lot of us think we'd experience it, but I'd bet his sensitivity readers were fantastic; he talks a little about his pre- and post-publication readers here. (Here's one young cancer patient's mixed take on the movie.)
So I didn't like everything, everything, but ...
“So, if I could change one moment, which one would I pick? And would I get the results I want? Would I still be Maddy? Would I have lived in this house? Would a boy named Olly have moved in next door? Would we have fallen in love?”
If I wasn't sick, would I have even met my wonderful husband? Would I have even transferred to the college he was attending? Would I have been at the animal shelter at the exact right time to adopt my sweetie of a dog?
And if Nicola Yoon had made Maddy's immune system even weaker and more vulnerable after being held captive by her mom's false belief, would the story have been as good? I wondered at first, but I think it actually could've been even better.
"Everything, Everything" does some of the emotional part of this -- "Who will I be if I'm not sick?" But because I'm still sick--and she would be, too--then I'd like us to not gloss over this and run so carelessly into the omigosh unburdened future of Maddy's healthy life.
And that brings us back to the real problem with the book--the consequences of her illness (getting the viral infection in Hawaii) are totally brushed under the rug when it's revealed she doesn't have SCID, and then the narrative IS truly careless in pretty much endorsing her brushing off her new doctor's warnings to go slowly. (Again, not that she wouldn't actually do this, because I think it's likely a teenager in this scenario absolutely would've. But could you not have thrown a nasty bout of flu her way between then and meeting Olly at the NYC used bookstore? Or even show her secretly wearing nitrile rubber gloves under her winter gloves? This would show that Maddy's growth and change (essential for a compelling story) isn't exclusively about being independent enough to rack up credit card debt and turn off the air filter, but also about her developing and calibrating her own responsibilities to her health.
It felt a little like a "Twilight Zone" episode ending (spoilers of classics ahead)--they're all pig-faced! They cook humans! Her mom was the sick one all along!
I guess if I could change one thing, it's the book's tagline, at the top of its cover: "The greatest risk is not taking one." Oh, really? That's the greatest risk to someone who's almost never been exposed to germs, then develops a severe heart infection the first time her immune system is really tested? It might be true of risks like falling in love, asking your crush to prom, moving out and going away to college, changing careers, trying out for the lead role in the school play. For me, someone without SCID but with a GI Illness, it'd be international travel to low-risk destinations, eating organic cheeseburgers, and drinking my share of high-quality pina coladas (check, check, cheeeeck). But if you're fighting to maintain fair health or even stay alive, like so many young people with chronic diseases? It's a little scary to promote this notion. The tagline is best embroidered on a pillow, then burned.
If the author had chosen another ending entirely, one that might make Maddy a "bubble girl" forever, would that make me happier? Not necessarily, depending on how it was handled--that could either be pretty depressing, or handled in a way that showed the value of a life while sick. I really just want a little more about the consequences of her captivity. Because as the book and movie "Room" explored, even if you leave your little prison that a mentally unstable person crafted for you, you can never really leave that prison. You can physically escape, but it will change you; you will lose things and you will gain things. The damage is inside your head, and will take more than a plane ticket and a cell phone to fix. The book and movie "Room" devoted as much time to *spoiler alert, even though it's in the previews* post-escape life as to pre-escape. We get a much more haunting and lasting impression of the toll that mental illness and abuse takes.
A way to modify the plot could be that Maddy was diagnosed as a baby with SCID, but there were (or eventually were, since there are) treatments that could have given her more freedom, but her mom was so anxious that she wouldn't even think of it. Maybe Maddy would always have to avoid eating the top allergens but could go to college to study architecture, on a reduced schedule. She could have hugged friends and designed buildings and kissed boys and birthed babies, but with caution and modifications and lots of rest, and non-maternal medical care.
Or it could be that she never had SCID, but now has a moderately severe immune deficiency due to being hidden away for so long, that may or may not need to be treated with stem cell therapy. But the author doesn't explore much of this. And because of this, the big twist to shake things up doesn't live up to the initial hype. The narrative fizzles soon after the big reveal, especially around issues of Maddy's mom's mental illness, their relationship going forward, and the aforementioned ongoing medical consequences. Readers with parents with mental illness could have found that to be a point where they really identified with Maddy, having beared the consequences of harm from an unstable caregiver. And that would've been great, but we didn't stay with it for long enough.
It seemed like after Yoon revealed the secret, she was ready to wrap this book up ASAP, not really interested in writing about any of this fallout. It felt a little like a "Twilight Zone" episode ending (vague spoilers of classics ahead)--they're all pig-faced! they cook humans! her mom was the sick one all along! If it was leaving room for a sequel to explore all of this, it didn't give me a ton of faith that it'd deliver on that.
Yoon is clearly a very gifted YA writer; I still enjoyed this book to a large degree, really enjoying everything before I saw that her not having SCID meant that we'd see her being a "cured" person. But I wonder what her illness-having sensitivity readers had to say about how this twist ending made them feel. Were they able to separate themselves from identifying with Maddy's condition from the beginning, so it didn't feel like a rejection? Did they feel like bubble illness was too extreme to identify with that closely? Did they give advice that wasn't taken?
It's only recently that the actual groups of people you're writing about had any kind of real influence over what gets chosen to be published, or in critiquing what already got published, and this is a very good thing for books overall, and can be a good thing for authors who embrace this. One wonderful way to make sure chronic-illness fiction gets the illness parts right is to have it written (or at least edited) by a person with a chronic illness. But if that's not an option for your book, that doesn't mean there's no good way to write your book (just ask John Green!). Just please don't focus all your research on the illness as opposed to the person having to deal with it. Ask me or some other eager reader to be one of your sensitivity readers, especially if you're as talented as Yoon. (Better yet, pick sensitivity readers who have the specific illness you're writing about if you can. But sensitivity reads aren't insurance, don't excuse lazy writing, and are found problematic by some marginalized people--more on this here.)
Show people with chronic illnesses living joyful, sad, adventurous, frightened, brave, complicated, long sick lives, with no literary escape hatches. Or if you're not interested enough in our experiences to do the work to do that, maybe you could find yourself a different topic.