I wasn’t planning to write about a book this week. That would give people the impression that all I do is read! 😄But I was at the library with G, waiting around to pick up a book we had placed on hold, and while it’s nice and all that my kid likes to read, I got distracted and ended up borrowing a random novel that looked promising.
Either a) autism/Aspergers families are increasingly frequently a feature in books; or b) I just have a radar for these books because I was so excited to find myself once more in Aspergers Land. The book is “Miss You” by Kate Eberlen, and is set mostly in the UK, with forays into New York City and Italy.
This book reads like one that wants to be made into a movie. It’s packaged that way, with the beginning and end framing the story, and with motifs that weave their way around the dialogues and settings. That wasn’t its strongest suit, to be honest. It made it seem ambitious beyond ‘just’ being a written narrative, and it also felt like an overly crafted creative writing exercise.
The best parts were when the two main characters were just being their beautiful, damaged but brave selves. Tess Costello is a young woman whose plans for university are derailed when her mother dies of breast cancer, and her perpetually soused father isn’t up to the task of coming home often enough from the pub to care for Tess’ younger sister Hope, who is eventually diagnosed with Aspergers Syndrome. And Gus MacDonald is the only surviving child of his parents, his brother Ross having died in a skiing accident. Gus is the disappointment, not as golden, not as outgoing, and not as favored as Ross, so he tries to figure out his future in the absence of any real guidance from his grieving, emotionally checked out parents. Until the two of them actually meet, which isn’t until the end, they don’t seem to fit anywhere, but they keep plodding along and trying to make the best of it, which is very touching, and a completely believable portrayal of young people trying to build meaningful lives when their pasts have been defined by loss and attendant neglect by devastated adults.
If you are interested in how Tess and Gus sort out their business, you are going to have to read the book. I want to talk about the special needs caregiving that is so beautifully portrayed, and how it rang true for me in many ways.
I cannot even imagine what it must be like to be suddenly charged with the obligation to step up and parent your sibling with Aspergers or any other developmental issue. What has, up till now, been a part time gig, possible to overlay with gentle humor, polite disinterest, and often outright resentment, now becomes a full time task. Whenever A insists on everyone adhering to his rules, G declares, “We are all being unruly peasants!” and it sends us into fits of laughter. Siblings can often see the irony, where parents have to strive for nobility, and their lighthearted involvement-yet-detachment keeps things from tipping into madness.
Such is not to be for Tess. She is plunged into the world of autism parenting, where we have to accept that we are only intermittently engaged in our clans and communities. Hope falls apart when she realizes her mother’s body is in a coffin at the funeral, and Tess has to take her outside to recover, so she misses the ceremony herself. It kind of breaks my heart that no one else offers to watch Hope so that Tess can participate. The brutal realities have only begun to penetrate. The girls’ older brothers live elsewhere with their spouses, and don’t want to get sucked into looking after their difficult sister. When Tess has to call the university to give up her spot, it enrages me how no one in the family grieves with her. It’s just expected of her to make the sacrifice, and after that, none of the men want to hear about her feelings.
If I’m making the book sound depressing, well, it is. And I love it for being so. I get very tired of having to smirk happily so that people can feel we are all alright all of the time. Sometimes we are drowning in our situation and from all the screams, and a book like this is just dour and achingly beautiful enough to awaken an answering gleam of recognition in us.
Since Tess has to keep things unchanging for Hope, she finds it a challenge to put her own grief behind her. The school offers her the job of being Hope’s teaching assistant, which allows her an income, but essentially ties her into being a full time caregiver. Even more than her father, she masters the art of taking Hope out in public, no mean feat for any of us who know what fear and exhaustion autism elopement inspires.
You know how that factoid always floats around about how autism parenting has similar stress levels as combat soldiering? Well, learning how to watch over all the minutiae of autism is kind of like learning how to be a warrior. Our skills are specific, detailed, and guaranteed to keep us at that level of constant vigilance. As Tess internalizes this level of watchfulness, her mind does stuff I recognize intimately. She processes her emotions in her sleep because that’s the only time she can finish a thought; she frequently opts for less time with other people because she needs solitude more than she wants company; and she views social situations from a sort of foggy remove born of compromised self esteem. When she does finally meet a guy, Dave, he only succeeds in wooing her because he stoically accepts Hope’s presence, and courts the sister’s favor almost as sweetly as he romances Tess.
Predictably, Dave accepts that he is not cut out for the role of combat soldier, and falls in love with Tess’ best friend. He’s not a bad guy. No one who is secondarily connected to autism is, for disconnecting. Primary caregivers don’t judge, but we do mourn, and then we put those people behind us. Each time it happens is like a death, leaving us, like spiritual seekers, with meditative solitude to reflect on what has faded into mist. Dave had to go, anyway. Tess is too young to form a relationship based mostly on sharing caregiving duties, and as readers, we want more for her.
I’m guessing the author either did her research really well, or has some personal connection to autism, because she identifies so clearly the struggles and apprehensions inherent in caregiving–we exist pretty much solely to conduct this vigil. Our own health takes such a back seat, crucial only because we know of no one else who will step up and do what we do with the same commitment. Tess decides to get tested for the breast cancer gene, and is terrified that she won’t survive long enough for Hope to grow up. There is something very hard hitting about this intertwining of autism parenting and breast cancer. Both demand everything a woman has. Both drain her resources. And both ask her to wage ultimate battles of courage while also attacking what is softest and most nurturing about her.
Tess has the same reactions as any parent would, to Hope not having friends, and not being invited to birthday parties. And just like a parent, she tries to be everything to Hope, filling all the spaces so that Hope won’t notice the absence of peer relationships. But when Hope does finally meet a man and is ready to move on to an independent life, she casts her past life with Tess as one where Tess held the reins unfairly tight, and that her new guy is finally flinging the door open for her to live as she would have wished. No one contradicts this account, not even Tess’ father, who benefited from Tess’ constancy by not having to parent, and by being able to marry a woman who doesn’t want Hope living with them permanently. Tess ends up leaving the party where these hurtful words are spoken, and wonders what all the years of sacrifice have been for.
And finally, the true grieving can begin. The PTSD can wash over her. All those years of stifling her thoughts are over. The old/new Tess is ready to be launched. But the new Tess finds a lump in her breast and the next battle has begun before the wounds of the old one have been healed. When Hope comes to see her in the hospital, Tess yearns for the old ease with her, and wants some reassurance:
“I’d always loved Hope unconditionally, but just this once I so wanted to be loved back.”
Perfectly put. After all, what Hope blames Tess for is something that could never have been avoided in autism caregiving–constant tending to endless needs and wants meant that affection flowed only one way. And now there is no way for Tess to ask Hope to show her some caring back. But just when it seems the awkwardness will never dissolve, the musically gifted Hope begins to sing, and that becomes her way of nurturing Tess. It is also Tess’ reminder that her parenting did bear fruit, as Hope now has the means to make a living, and to give back to people through her music.
I love books and movies that insert a writer into the plot. They always manage to say what all of us English majors are thinking. When Tess starts to describe the account of her life that she is working on with her writing group, a nasty woman (who is clearly meant to symbolize the carping voice of everyone who thinks they could do what we do better) declares that what Tess is writing is a “misery memoir.” Thrillingly, Tess walks away from the group. I’ve wanted to do that so many times since becoming an autism parent. Just slam doors shut in people’s faces, hang up on them, pack suitcases and leave their houses of judgment, not bother to explain why what I think matters, just leave a nice, satisfying silence behind me. When Tess leaves Hope’s party in tears–I’ve felt that isolation so many times, I’ve lost count.
This book is for anyone who has carried around a responsibility and an existential void so huge, it couldn’t be sustained by polite conversation or by oily, well meant, rage inducing preachiness. The whole time I’ve been writing this essay, A has been engaging in mood swings so wild, he could be a trapeze artist. I’ve fantasized about ear plugs, about buying a condo. I’ve sat with him and enjoyed his laughter, then listened to it return to wailing. I’ve wiped his tears when there’s nothing else to offer. So this book is for me. I’m so glad it chose me.
Eberlen, Kate. Miss You. New York: Harper Collins, 2017.