Monday, July 7, 2014

The Purgatory of Illness (and Jokes)


This picture will make more sense
by the end of the essay.

We weren’t sure what was wrong, but this week doctors believed either my body was rejecting all of my medication or I’d had a nervous breakdown. Even if you know nothing about my condition, we can all agree that if you can’t tell which of those two things is wrong, you’re in deep.

If you know nothing of my condition, it’s possibly because I scarcely write about it. It’s never appeared in my fiction, rather drawing me to sympathy and study of the illnesses and disabilities of others. But ever since I was thirteen and the recipient of some radical medical malpractice, I have had a crap immune system and have been in constant pain in every part of my body. Most recently, it began taking my hearing and my ability to focus thought.

If you didn’t know that every time we’ve ever talked I’ve secretly been in pain, it’s because I’ve been conditioning myself since puberty to manage the load. Two months ago, when I could no longer speak in coherent sentences, and when walking to the mailbox became too much of an ordeal for me to imagine (literally: I could no longer think straight enough to envision the trip), pain management was all I had left. Empathy seemed to evaporate from my mind. Beneath compassion, humor and creativity, all I had was the ability to not lose my grip on my body.

Today, I’m proud of that. I’m proud of having held onto that much when my entire nervous system turned against me.

At the time, I had no idea what was going on and felt guilty for bothering so many people about it. This is why The Bathroom Monologues have been particularly quiet for the last two months. I’ve completed no piece of fiction in the entire period; editing a novel became excruciating in ways I wish upon none of you. That little review of X-Men: Days of Future Past went up a week late because it took me an entire week to type that many coherent sentences.

If you’ve made it through those five paragraphs, then please bear with me for this: I don’t want you to apologize for my pain. Some of the worst parts of the last two months have been people frowning and trying to commiserate with me. All it does it perpetuate mood and fatalism.

Instead, join me in regarding the few instances of hope people gave me by being ridiculous. The first time it felt like anything could improve was walking through a Wal-Mart (of all places on earth). Out of the freezer section came a cart, pushed by a teenaged girl in huge, furry boots. Sitting inside the wire cart (not on the baby seat, but lounging inside the food carriage) was another teenaged girl in huge, furry boots, with as demure a grin as grins can allow within their city limits. They were half-grown adults enjoying something ridiculous, chatting about what to put on their Eggos.

I’m pretty that the next time I smiled was in learning someone had the gall to name their band “The Style Council.” Or it was a reclusive friend linking me to the strangest Vines he’d found that month.

Of everyone, my mother was the most worried for me. It’s something moms excel at, isn’t it? Some days she’d invite me out, I think just to give me a change of scenery. Funny to think asking someone to drop off the recycling is altruistic, yet in my easily overwhelmed state, I showed up to the car half an hour late. I was sure she’d be furious, and was prepared to apologize into her frustrations.

Instead she had found a rope swing and was happily spinning around a tree in the yard. She didn’t even hear me come out. She reminded me what a damned good role model is.

This is what I need, and in bulk. Don’t wish me well, and don’t put on grave tones, and don’t say the hardest part is over or is yet to come. I’ll take your prayers (and thank you, Father Andre and David Twiddy – that really did mean something to me), but I’ll also be glad to see you decorating this world with quirks. It reminds me of my purpose.

21 comments:

  1. So, the giant yellow duck is to remind you to "duck" when your mind swims through debris of its own making. Clever, if a bit quacky. ;) I need one of those.

    ReplyDelete
  2. Then I'll just say I'm praying for you.
    And you have a really cool mother.

    ReplyDelete
    Replies
    1. She's better than I ever could have asked for. Thank you, Alex!

      Delete
  3. If I was able to walk both ways to school in my bare feet, in the snow--especially difficult considering I was raised in New Orleans--live in a closet while I worked my way up the corporate ladder, give birth to five children on my lunch breaks after 43 hours of labor each and invent the Internet, I can easily wait for you to entertain me once again. In the meantime, I'll go into semi-Mom mode, and worry a bit, because we rock the Worry. I don't mind if you go back to WalMart, just be careful not to dress that way. X

    Quin

    ReplyDelete
    Replies
    1. I spent half of this comment worrying you were going to take me to task for being a wimp. What a relief!

      Delete
  4. Well that's AWESOME! Smiling at furry boots at the Wally World! A victory if there ever was one. I'd squeeze you like a sausage if you was here - lucky for you, you ain't. (I don't know why I started talking like that just now ... feck, I'm losing it.)

    ReplyDelete
    Replies
    1. That is the nicest expression of a hug I've read in some time. Thanks, Cathy! I think you've still got it.

      Delete
  5. Odd how in the depth of despair or the bog of unquenchable stench it is humanity, with all its quacks and quirks, that restores our own humanity and that thing called hope.

    ReplyDelete
  6. Love it. Pain is a sucky, soul destroying beast - and nothing puts it back in its corner for me faster than quirky fun. Which I hope your world is full of. And your mama is way cool.

    ReplyDelete
  7. Laurence BrothersJuly 7, 2014 at 3:25 PM

    Of course the worst thing is to feel bad about suffering. Well, no, the worst thing is to suffer, but in response to that it's ridiculous to blame yourself, no matter how natural it may be, so it's great to be able to overcome that tendency. I'm happy you've been able to find some pleasantness and solace during this period. The ability to do that is obviously crucial to recovery. Will be very happy to see you at Readercon.

    ReplyDelete
  8. Being sick sucks, being a great big yellow duck, now that's awesome - shall I call you ducky from now on? ^_^ Be well John.

    ReplyDelete
  9. I was hoping you'd mention The Style Council again! 'Cos if you liked them, you have to check out Stanley Road, a more recent solo album by Paul Weller. It's good for both chilling out to and powering up.

    Here:
    PAUL WELLER - Stanley Road (1995) - Full Album: http://youtu.be/lzZQHPhsdxk

    (Did I do that right?)

    ReplyDelete
  10. I will add my prayers to the chorus. And wear my shoes on the wrong feet. (That's a thing I do enough it's a local legend.)

    ReplyDelete
  11. Your mom sounds awesome. It's good to hear from you again and I'll add myself to the growing list of people wishing you well.

    ReplyDelete
  12. I may be missing something, but why are furry boots NOT appropriate clothing to wear in the freezer section? :)

    Sometimes, our sense of the ridiculous - including ourselves - is all that stands between us and the madness that lurks at the edge of our mental maps - a sort of psychological "Here be dragons" and I hope yours continues to keep you well away from those dangerous waters.

    ReplyDelete
  13. Here's a little something about current affairs in publishing: http://www.slate.com/articles/video/video/2014/07/malcolm_gladwell_video_outliers_writer_meets_with_amazon_executive_in_spoof.html

    ReplyDelete
  14. A little anecdotal humor then: My sister just texted me that her 9-year old son got up from the dinner table and started rubbing his butt on the kitchen cabinet. He then came back and sat down and continued to eat. When she asked what he was doing he replied, "I guess it is impossible to open a cabinet with your butt."

    Also, serious high five to your mom. I should bake her something. And you too. :)

    ReplyDelete
  15. I had wondered where you'd popped off to... hadn't been getting as much entertainment in my inbox as I'm used to. I suppose you had a good excuse. :) (My excuse is that my website disappeared for a few weeks... which was annoying, but definitely less painful).

    Walmart is an interesting place. Especially if you go there with children (who provide most of my entertainment these days, as I have little time for much else). When entering Walmart with a 2-5-year old, it can be quite fun (and perhaps mortifying) to hear the things that they will point out about strangers. (This is why I generally avoid Walmart).

    For example: my daughter pointed out a lady one time and shouted, "That lady isn't wearing a bra!"

    (She was right... but I still wanted to sink through the floor)

    Or the time she saw a man who was most likely a midget when we got off the elevator and yelled, "Mommy, that man is so SHORT!"

    Oh dear.

    I do hope you are feeling better soon, will be praying for you! Whenever my 5 year old doesn't feel well, she announces that, "Mommy, I feel like a pig in a dump truck." (I have no idea where she got that saying from... I'm pretty sure she made it up... but here's hoping you don't feel like a pig in a dump truck... or at the very least, if you do, that you can get a smile out of this comment)!

    ReplyDelete
    Replies
    1. Obviously, the elevator instance was not in Walmart, but a different building. Never been in a Walmart with an elevator....

      Delete
  16. I, too, wondered what had happened to you. So glad to see you still have the fighting spirit, John. Keep it up, and keep writing. We all need voices like yours in this sad and strange world.

    ReplyDelete

Counter est. March 2, 2008