Category Archives: Joy and Fun

Dealing With Our Chronic Pain Through Art

Y’all might not know this, but I have another blog, The Black Hole Tango, over on Tumblr, where I publish poetry and little creative bits and snippets, my own and others’ work as well.  Mostly my own. It’s just a little free space for sharing my work, which was my big goal in 2010, and yes, it’s taken me until the end of October to start actually fulfilling that goal. Hey,  better late, etc.

So, I just posted a poem over there that I wrote some time ago, and when I started to format it for the blog, it hit me:

This is my only poem about pain. Ever.

OK, I found that odd. I’ve been writing poems ever since my chubby hands could hold those big fat stubby pencils they gave us in first grade with the lined paper (although I’ve never shared them–except once on Father’s Day with my ex-husband). And I’m a big believer in using art to transform pain and other so-called negative life experiences.

So why did it take me that long to write a poem about my own chronic pain? And why haven’t I written any others?

I honestly don’t know. I suspect–I fear, that is–that it has something to do with that queasy feeling we all get when we write or think about sharing our physical pain with others. (Or, OK, maybe that’s just me. I shouldn’t assume.) And that’s no good for a poet. Or for anyone alive, really.

But in any event, there it is. It’s called “Legacy,” and you’re welcome to repost it anywhere, just please attribute it properly and if you’d be so kind as to give me a link back to that site (the Black Hole Tango) I’d be grateful, ’cause it’s brand spanking new and a little lonely out there in blogland.

And what I want to know is this: What do you do to process your pain through art? Do you dance it out? Paint the pain? Share your story with me, please!

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Halloween, Candy, and the Chronically Pained: Coping Tips for Parents

Oh, it’s my favorite time of year.

No, I’m really not kidding. I truly do love Halloween. I love the spooky vibe, the crisp chill in the air, the feeling that anything can happen, if you just look closely enough …

And, unfortunately, I’m also being sarcastic. Yeah, I just love Halloween. Walking around for four hours on end, hauling bags of candy which turn my child into a raging tornado of “GIMME!” and trash my house and … oh, yeah, did I mention the WALKING?! Halloween HURTS, people.

Well, fortunately, this year it seems my kid has decided to forego the usual trek around the neighborhood in favor of more centrally-located festivities. (Phew.) But for those of you with younger kids out there, Halloween truly presents some challenges.

Here’s how I handled it in years gone by:

Abdicate Early and Often

I totally let the kiddo’s dad take over the walking duties. In turn, I stayed home, passed out candy, and baked cookies. Yes, more sugar to give the Gimme Monster. It got me out of walking. Your point?

Rest Up/Dose Up

Ah, the old stand by trick of the chronically pained. Take a good long nap before any activities requiring lots of effort, and make sure you take your meds half an hour before starting up.

Have a Plan

I negotiated ahead of time with the kiddo to specify which houses we’d be going to, and in what order, and what would happen when Mommy cried “Uncle.” It didn’t eliminate the disappointment but it went a long way towards reducing the fallout.

What do you do to deal with Halloween? Do any of you eschew the holiday altogether — just turn the lights off and watch old episodes of Dexter? Do you give out stuff other than candy — you know, like, maybe that nutritious stuff instead? (I can’t fathom, but I hear some people . . .)  Give us your best coping tips in the comments!

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When Your Pain Level is “Too Serious For Numbers” – A Funny For You

No, seriously. It’s FUNNY. Pain can be FUNNY.

Exhibit A, ladies and gentlemen of the jury: Hyperbole and a Half‘s “Boyfriend Doesn’t Have Ebola. Probably.”

This came to my attention from a friend in response to a Facebook message I posted about how the recent trip really did a number on me and my average daily pain levels. (It was the graphic with the “Too Serious for Numbers” caption.)

And now I have a new online pharmacy for my daily dose of FUNNY pills!

Taking Time to Take Care of Yourself? E! Thinks You’re Self-Indulgent

One of my deep down dirty shameful secrets (besides the ever-colorful live-action Penthouse Forum that has been my dream life here lately, but that’s an entirely separate blog post) is that I crave celebrity gossip. I could defend this embarrassing addiction on the grounds that I’m really being ironic in my perusal of the paparazzi-provided snaps and accompanying blurbs but, really, why bother? I just dig reading about those crazy stars and their crazy, crazy ways.

But every so often something snaps me out of my glazed-over high while I’m devouring the scandalous details of Robsten or, y’know, whoever — something that reminds me it’s actually the real world in which I live, and that world bears absolutely zero resemblance to the one in which movie stars move and gossip rags and sites blab about said movements. (Heh. I said “movements.” Yes, I’m an 8-year-old boy, apparently.)

One such virtual two-by-four upside the head just slapped me silly. It was on the E! Online website, in the infuriatingly-titled piece “Is Julia Roberts the New Kristen Stewart?“:

Box office prestidigitators fully expect Eat Pray Love to dominate theaters this weekend, or, at the very least, contend for the top one or two spots. They largely credit the source material—Elizabeth Gilbert’s wildly successful and profoundly self-indulgent memoir by the same name.

(emphasis revised by Annie.)

Now, to understand fully the depth of my rage at the bolded accusation, you must know something about the book being referenced. In case you’ve been spending copious amounts of time underground lately, you’ll probably be aware that there is a book called Eat, Pray, Love; that it’s by Elizabeth Gilbert, a wonderful writer who (among many other things) wrote the terrific first-person nonfiction narrative which ultimately turned into the not-so-terrific movie Coyote Ugly; that it’s a memoir (i.e., it’s nonfiction and recounts the author’s personal experiences); that the focus of the book is on the year-long period in which Gilbert, recovering from a messy divorce and even messier love affair, traveled in turn to Italy, India, and Bali, in search of some self-awareness and ultimately peace.

What you might not know:

  • Gilbert arranged the trip and financed it through an advance from her publisher; the goal all along was to write the book about her experiences, and in this vein, the trip was both the experience itself and the research for the book about the experience. (Nonfiction authors, by the way, do this routinely. Unlike selling a novel, say, where the book gets written first, the nonfiction author will basically presell the book on the basis of a proposal; the publisher buys it and gives the author an advance against royalties; the author goes off and writes the book. That’s just the way it rolls.)
  • During her time in each country, she focused her attention on her relationship with food  and her body (Italy – “Eat”), herself and her spirituality (India – “Pray”), and others (Bali – “Love”).
  • Oprah loved her so much she had her on the show twice.
  • The book was then adapted into a movie starring Julia Roberts and Javier Bardem.

Then, in the midst of all this public adoration — Oprah! The New York Times bestseller list! A movie deal and Julia Roberts playing the author! — comes the perhaps-inevitable backlash. It became chic and de rigeur to mock Gilbert, to chastise her and her book, to rail against the audacity of a woman like Gilbert (whatever that means) advocating taking a year off and traveling all over the world to “find yourself” – as if real women (whatever that means) anywhere could afford to do such a thing.

It seemed to me that the backlash became ugly when it started focusing on her gender. That gender bias was expressed in comments on book-review sites across the web such as these gems:

  • It borders absurd that this story could be glorified to the degree of being considered a personal “triumph.” I would love to see how her story would have turned out minus the huge bank account that allowed her to take the vacation of her life. There is no depth of soul here…she had nothing to overcome and only herself to think about and all the money in the world to do it.
  • I found it hard to relate to a woman and her struggles when she is so fortunate to be able to travel and live freely for a year with the money she got from her book deal!!
  • I didn’t enjoy the book at all due to EG’s self-indulgence. In fact, I found several, “book chucking” moments where I almost threw the book across the room. . . . I honestly think the reason this book is so popular is shear vicariousness. Who wouldn’t want to spend an all-expense paid year of eating, self-reflecting, and falling in love?
  • WHY? I cringe to think why so many women want to feel that this was a true spiritual journey. It was a pre-paid journey.
  • It took me nearly a year to finish it. I was so disgusted by the writer’s apparent lack of awareness of her own privilege, her trite observations, and the unbelievably shallow way in which she represents a journey initiated by grief, that I initially couldn’t bear to read beyond Italy.
  • Liz decides to undertake a “spiritual journey” as well as a geographical one, all the while planning and being paid to write this book about it. She’d been able to take this journey of hers because of the advance she’d acquired in preparation for this book. Sound fishy already?
  • Lastly, it’s very disheartening that a book ostensibly about a spiritual journey to the self begins with details about her Manhattan real estate holdings and ends with… her landing herself a man. Well, congratulations on all fronts. How spiritually evolved.
  • I just kept thinking wahhhhhh the whole time. Poor woman wants out of her marriage so she leaves…. wahhhh. Poor woman is depressed so she whines wahhhhh. Life is so unfair for the poor woman wahhhh.
What’s perfectly horrifying to me: some of those comments were (putatively) made by other women.

So, never mind that almost all traditionally-published nonfiction books started out the same way. Never mind that this is Gilbert’s JOB. Never mind that her prose is masterful, or that she’s repeatedly protested that EPL is NOT some recipe she’s advocating for enlightenment, to be applied across the board, step by step, by any and every woman on earth — that, in fact, she’s repeatedly made it clear she’s only telling her story, and to the extent she’s advocating anything, it’s solely for women to give themselves the time and space they need to become self-aware, whatever that means for them individually.

No, never mind all that. Gilbert is to be vilified and excoriated personally because … she didn’t spend her year working in an orphanage in Mumbai? I don’t know. I confess I don’t quite understand it all myself.

Which brings me full circle to E!’s snarky dig: “profoundly self-indulgent.” Not just “self-indulgent” mind you but it’s profoundly so. Why? Because Gilbert, a female writer, had the audacity to come up with a creative way to give herself some much-needed personal time and then (the gall of her!) shared it with other uppity women? Because she actually focused on herself instead of others for a period of time? (Quelle horreur.) Because she got paid for doing her job?

What does any of this have to do with chronic pain? Plenty. Chronic pain turns your life upside down and inside out, to the point it resembles nothing like your life B.P. (before pain). It takes a profound amount of time, energy, and attention to even get diagnosed properly.  Then you have to come up with a suitable treatment plan, and then actually follow said plan. It’s exhausting, and it requires the reallocation of personal resources (i.e., time, energy, attention). Spend more time taking care of yourself  = spend less time taking care of others. It’s just simple math.

And it’s apparently an equation with which some women are still, after all these years, highly uncomfortable, to the point that they excoriate other women for doing just that.

Yet, here’s the thing: self-attention does not equal self-absorption or self-indulgence. It simply means attention to self.  That’s it. When it’s approached with open-mindedness, humor, and just the right amount of irreverent playfulness, as it is in Gilbert’s writings, attention paid to self (whether it’s your physical life, your spiritual essence, or your inner monologue) can be a profound act of grace both given and received.

To those women who think I’m self-indulgent for taking care of myself, then, I can only say: Eat (Pray Love) me.

The Wall: Stress Will Make You Worthless

Image of a brick wall

Harsh words in that headline, and I mean every single one of them.

Here’s what happened: Last week, my housing plans fell through. I’d been staying with an acquaintance, which was always a temporary solution and the plan was that my daughter and I would be moving in with another friend and her family, to share expenses. Then friend’s house had a temper tantrum, losing both its air conditioning and the downstairs plumbing in the space of 48 hours.

So I had to scramble to find something else. I’d had a back-up plan but in the comedy of errors that is my life, that also imploded hilariously, leaving me with about one week in which to find a place to live.

So, with the aid of a friend and Craigslist, I set about scrambling for Plan C. Thankfully, I now have Plans C AND D, and that’s pretty awesome to have options — nothing firm yet, but we’ll know tomorrow, almost surely by Tuesday at the latest.

OK, crisis averted. But the thing that struck me like a ton of bricks late Friday night, after five full days of escalating efforts and exponentially skyrocketing stress levels, was summed up in this Facebook status update:

Screenshot of Facebook update about stress and energy levels

Something Alice Cooper can’t cure? That’s new …

In all seriousness, this feeling — as if someone tilted me over and let everything run right out into the ground — was totally new to me, despite ten-plus years of living with fibromyalgia and degenerative disk disease.

See, I’ve always been a very optimistic person. And the best thing about that kind of optimism, the kind that’s bred into your bones, is that it provides its own energy source. Even in the worst of times, the certain conviction that things will get better keeps me going.

But not this time. I hit the wall. I couldn’t move. I couldn’t think. I couldn’t even write, which has always been my best form of therapy.

I didn’t know what to do. So I went to bed. (And then promptly stayed awake for four more hours while the current housemates sang Venetian folk songs and argued about who was “right from the beginning.” Sigh.)

The next day, I felt much better. So we can assume fairly safely that if you hit this stress-induced wall, sleep helps.

What else makes it better? I honestly don’t know. I’ve never felt that way before so it’s a completely new experience.  So I’m asking you all — have you ever experienced The Wall? What helped, if anything? What doesn’t work? Let’s share our collective wisdom!

How to Be a Good Friend to Someone With Chronic Pain

Today’s post is aimed at a slightly different reader — not the fibromyalgia sufferer or any other chronic pain patient for that matter, but the friends of people with chronic pain.

The Gift of Friendship — The Challenge of Chronic Pain

I know it’s not easy being the friend of someone who’s in pain most or all of the time. You probably have a lot of mixed emotions about your friend’s new reality. You might be concerned for your friend’s prognosis. You may miss doing fun things together, or even resent how much of your friend’s time and attention her condition now consumes. You may even have some doubts about whether her health is really “that bad” — especially if she “doesn’t look sick.”

But you’re also in a wonderful position, in a way. You’ve got some objectivity, of course — the pain isn’t happening to you, so you can be an incredible source of guidance and feedback when it comes to trying new therapies or making adjustments to daily life. You’re also motivated by friendship and that means you’ve got compassion for your friend’s new challenges. That compassion is something all of us need from time to time, no one more so than a chronic pain sufferer.

Straight From the Horse’s Mouth: How You Can Be a Good Friend to a Chronic Pain Sufferer

I asked some of my “fibro-friends” on Twitter what they thought about this question: “What piece of advice would you give to someone who wanted to be a better friend to someone struggling with chronic pain?” The responses I got were incredibly moving and may help you in your quest to be a better friend.

Just Listen, Even When It’s Hard

First, they said, it would help tremendously if you would just be there for us. Be a shoulder to cry on, listen to us rant and whine on occasion when the pain stops us from doing what we really long to do. It’s hard to listen to someone you care about who’s in pain, we know, but your presence really does help. We need people to listen to us — to hear our stories — and to hear us with compassion. That’s something you can do better than anyone else.

Send Us Good Information, But Beware of Claims of “Cures”

Second, we welcome your interest in our condition. Please do keep emailing us news clippings that you find about our condition. But we do have one request: ignore the ones that say we can be “cured” with one simple supplement, or readily available substance.

For most of us, there is no cure yet, although researchers are constantly at work on these conditions and we’re all hopeful. The most that we can hope for in the immediate future, however, is successful management of our symptoms. So, check out the source of that article you’re thinking of sending. If it’s a press release, you can skip it. If it’s a true news piece, send it on.

Understand What We’re Talking About When We Say “We Hurt”

Third: please understand that our pain is not like the normal, average everyday aches and pains that almost everybody endures as they get older. This stuff is potent pain of the highest magnitude, and it interferes with everyday life.

When a fibromyalgia patient says she hurts or is experiencing a flare, for instance, you can understand what she’s going through by remembering what it feels like to have the flu — not the stuff you call the flu when you’re really just not feeling well and don’t want to go to work, but the honest-to-goodness, kills-people-every-year influenza. Remember those deep-rooted widespread body aches? That’s what a flareup feels like, only it doesn’t go away with Tylenol.

The One Thing You Should Never Say to a Chronic Pain Sufferer

So, while it’s perfectly normal to think “Well, everyone hurts now and then …” — keep that thought to yourself, please.

We know everyone hurts — but not everyone hurts like we hurt, and when you say things like that, it just makes us feel (A) terribly alone and (B) that you don’t believe us, that you think we’re just malingering. Please trust me: we’re not hypochondriacs or malingerers. We hope for nothing more out of life than one more good day, one pain-free day, and, please God, a cure for what ails us.

Grace Us With Your Presence

Finally, please don’t forget about us. It’s going to be hard, we know. Especially when we’ve both lived with this condition for awhile, and you start to realize that there’s really not much you can do to make us feel better, and there’s not much we can do to rejoin life as we used to know it.

You’re going to start telling yourself, “Well, there’s nothing I can do to help. And I know she doesn’t want to or can’t go do __________ (whatever you’ve got planned for the day).” Then, the next thing you know, you’re not calling or emailing, and we haven’t seen each other in ages.

Please resist that temptation. Even if you know we can’t join you, it still feels good to be invited from time to time.

And even though, yes, you’re right, there’s not much you can do to make us feel better, there is one thing you can do — and that’s grace us with your friendship and your presence. Call and see if you can just drop by for a chat. Tell us about fun things you’ve been doing — even if we seem envious, we’re really happy that we can at least live vicariously through you! Keep us in touch with what’s going on out there in your world, because we do care about you, even though it seems sometimes as if all we can think about is our chronic pain condition.

We need friendship, just as much as we need good pain relief and a caring, competent doctor. We hope that our pain doesn’t scare you off, because your friendship does mean so much to us. Take us as we are, but please don’t forget that underneath all the new stuff that any serious health condition brings, it’s still us in there — the same friend who’s loved you and relished your love for years.

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