Sick & successful.

blonde asian woman lying down

 

The other day I was crying, as you do sometimes, out of self-pity. I try to avoid bemoaning my fate because I am highly privileged in a number of ways, but I’m also human, and so I was crying in bed at noon because I’ve been struggling with late-stage Lyme disease for three years and mental illness for over two decades. Which is very tiring. At times, you just become overwhelmed by how weary you are of fighting–I’d been notified the day before by my doctor that according to a medical report sent by my insurance company, I’d been followed by a private investigator for three days and was seen “smiling and laughing,” among other atrocities, and thus could no longer be seen as disabled, which means losing my benefits. There was the matter of the insurance company, right on the tail of a horrible flare-up that meant being half-conscious and bed-bound most of the week. There was the matter of folks saying insensitive things to me without meaning to. There was my headache, which is thought to be caused by inflammation (Lyme meningitis).

Anyway. So I was crying and texting and browsing the Internet (does anyone say “surfing the Internet” anymore?), and I suddenly stopped crying. Because I saw this.

the border of paradise amazon page

This, my friends, is the Amazon page for my debut novel, The Border of Paradise. My editor had told me that the book would stealthily make an appearance online months before its April 2016 release date, but I wasn’t told about it; in fact, I hadn’t even seen the cover until this popped up.

Immediately, I began to have All the Feelings. Fear. Anxiety. Criticism. Excitement. Pride. Self-doubt. If not for the fact of my antibiotic regimen, I would have had a shot of whiskey. I immediately told everyone I could think of. My friend Dyana forwarded me the email receipt of her pre-order–I’m pretty sure she’s the first pre-order that exists of the thing. I was reeling.

Because this is a story about an idea that grew in my mind, and sprouted roots and branches and snagging twigs; this is a story about a book that took five years to write and edit and polish and two years to find a publisher that would stand behind its wonderful-ness and put it into the world for people to read; this is a story about a world that is as real to me as the one I exist in right now, tapping out these thoughts for you, dear Reader. This is a story about working hard and cultivating inspiration, while also building resilience through hardship.

This is a story about Sick and Successful.

There is a book description on the book’s Amazon/B&N pages, which was written by marketing people and not by me. I’m also aware that I’m scheduled to attend my first promotional event in October, and will be expected to answer, “So what’s the book about?” without stammering and assiduously looking at my hands.

My novel is about the way that we can do terrible things to people that we love, and that we can do those things because we love, because we’re doing our best. It’s a multigenerational saga about one New York family, the wealthy owners of a piano manufactory in mid-century America, and its ostracized son, who suffers from mental illness. It’s about how this ostracized son, David Nowak, meets a Taiwanese woman named Jia-Hui, and brings her to America for what he calls a better life. It’s about the exquisite isolation that the two cultivate in the foothills of the Sierra Nevadas, where they raise their two children, and what catastrophic shifts occur in the family after David ends his life in a motel room far from home. Obsession. Loneliness. A sort of Immigrant Gothic. I hope you love it.

You can pre-order the book here.

The whole experience, from texting and crying (the new “Netflix and chill”) to finding my novel on pre-sale was one that I interpret as a divine sign about my purpose. I’m still figuring it out, but it sounded something like, “It’s true that you are sick, but it is also true that you are magnificent.”

Perhaps you’re sick and successful, too. Give yourself a pat on the back, because you, too, are magnificent.

Perhaps you’re not sick–you’re in terrific health–but you feel broken in some other way.

Broken and successful. You’re doing it. We see your work toward healing. KEEP GOING. YOU’RE DOING GREAT, you magnificent creature.

Let this be a reminder to you who struggles, who wonders why everyone else seems to have their shit together more than you, who both self-doubts and has moments of grandiosity, who tries to put a brave face on awful pain. You who makes things, despite the struggle or because of it, and holds them close.

Magnificent.

Esmé

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  • Dear Esmé – your post started on a heartbreaking note and ended with one of the most wonderful news I may have ever read. I’m so happy for you! I wish you and your work all the best in the world.

    • Thank you so much; it’s true that life surprises us with things both “good” and “bad,” isn’t it? Wishing you all the best, as well.

  • Tired. Overwhelmed. I hear you, I feel it. And your situation with the investigator? Chills my bones. It utterly disgusts me (and I apologise for ugly words over here) that anyone can suggest that being outside, smiling, is something someone with an illness couldn’t do. Shouldn’t do. A line, a line between. Always a line.

    The novel? Know that I will pre-order as soon as I get myself a bring-in-some-funds something or other (soon. I hope, soon!). And it sounds so utterly intriguing that I can wait to bury myself in your words – as I do, so often, but this time at great length (oh! The joy!). And I will love it, by the way. I know.

    And thank you for the reminder. Thank you for the powerful message. Thank you for writing. Thank you for sharing. Thank you for being here. Magnificent, magical you.

    • Thank you so much, Tori. You are such a bright spot in the world, you know that? I think what you’re seeking out–how you’re going about seeking out–you future work is absolutely right. I love watching you flourish. & thank you for your support.

  • I think the private investigator’s note that you’d been seen “smiling and laughing” is a symptom of one of the things I’ve internalised: that to be chronically ill and disabled, I can’t also have good moments where I’m smiling and laughing. I’m starting to label myself “person with disabilities” because of my chronic illnesses, which dominate my world, but I didn’t really feel like “one of them” because… I had so many periods of being happy. So there’s a dichotomy that it’s time to smash: you can be chronically ill and/or a person with disabilities AND have good days where you smile and laugh. Living with disabilities is not a death sentence for us.

    And, I have to mention, I am flabbergasted that an insurance company did that to you, that it even *matters* how you looked on any given day.

  • Great post, Esmé. I feel that many people don’t understand that those who suffer from depression, anxiety, or even Lyme disease, actually have the capacity to function and be productive IN SPITE of it all. It’s as if all of those constructive moments completely nullify any health concerns you have. I hope that one day people realise that wellness fluctuates and exists on an ever-changing spectrum, not some steady, definite state.
    x

  • You got me m-esmé-rized!

    My first time at your website was yesterday. Suffering from the ever returning blues of mine, in trying to understand something about myself, what I was and why I was it I ended up here (while googling different concepts of the mental dimension). I found it comforting to take part of your honest and outspoken outlook on the world, while allowing the mental hardships to be a part of it and not repressed as is common. Comforting to know that, even if I might have some sort of mental “disturbance” it could be included in the colourful interpretation of the world, and is not doomed to be my shame and exclusion from it. Now the day after, instead of working on my master thesis I find myself returning to your page to read about how you are doing. I am thinking about the Lyme disease and rooting for that it can be conquered – I believe so and want to send you the strength of that thought. I will return here in hopes of being able to share the unfiltered nature of existence – mine, yours and others. My words sound so pretentious and I hope not to be judged by it – so often have I experienced negative feedback when I want to share a deeper sense of presence and mind – but since your page feels abscent of that kind of limitation I have hopes to not be judged. It is still with fear that I will press “post” on this comment but I will be brave and do it anyway 🙂 Thank you for an inspiring and insight-giving perspective on the world!

    Josefin from Sweden

  • I so love that you are bringing this all around to being both ill or broken in some way and wonderfully whole and magnificent. I couldn’t agree more. Feels to me, and has for so long, that real life happens in the tension between the two – that our work is to contain both truths with tenacity and compassion. Thanks for sharing your story, as you always do so eloquently. Your tenderness and strength are continuously inspiring to me.

  • I’m glad that a moment of suffering ended with a moment of hope. I struggle with various chronic issues too and I can’t believe that smiling is not allowed for anyone with a disability. I guess he needed to figure out a way to stop your benefits. Ridiculous!

    I am really looking forward to your book and will preorder now that I know it’s available! I can’t wait to read the rest of the story! I really hope that it grips the heart of the world, as it has gripped mine.

    I hope that glimmer of hope is still burning softly by your side and giving you the warmth that you need.

  • I so enjoy your authenticity and your ability to hold the tension of creativity, mental health/illness, and physical illness all together while you create beautiful writing. As a 25-year sufferer of migraines, and recent addition of fibromyalgia, I too balance creativity, reduced energy, self care, and pain. Laughter is a critical element in dealing with pain.