The Fibromyalgia Autobiography: We Are the Brave

I don’t know what to do or even how to write. The pain is so bad that it permeates every second of every day; I get no respite. If I thoroughly distract myself with something consuming, such as drawing every fibre and curve of the poinsettia plant on the table, I can sometimes, most fleetingly, eliminate the pain from my top-of-mind consciousness. Even then, I know it’s there. I know it’s glowering at me, demanding that attention must be paid. How dare I presume to ignore it. It should know that I’m most decidedly its prisoner, and ignoring it is impossible. I’ve merely placed it in the second shelf of things I cannot forget.

Imagine internally repeating a word or a string of digits, something you know intimately well, over and over and over. Your name. The numbers 4 8 15 16 23 42. It would seem like madness. So does the word I repeat, but it is more of a tome than a word, a dull and singular autobiography that tells but one incessant story. I repeat it while making coffee, while reading Prince Caspian to my eight-year-old son, while hugging my 11-year-old son goodnight, while I’m making a joke to my 13-year-old son about the “sentient basketball” his kindly and generous godfather gifted him for Christmas. 


(STOP. Okay, the sentient basketball is this basketball that links with an app on your smartphone and it tracks all the shots you take and calculates the trajectory of the ball and it’s seriously smarter than all of you. I have suggested that it may devolve and start shouting things at my son such as “Missed the hoop AGAIN. Sad! Loser!” by which point it will have detained our entire family in a special “camp” while it bounces recklessly across a keyboard linked to its Twitter feed. But I digress.)

The story in my head has the word “pain” is embedded in the title of every chapter, in every monotonous sentence, and in the cliffhanger at chapter’s end. Synonyms for “pain” could of course be employed here: ache, agony, spasm, torment, misery, distress. I’m afraid that, while in pain, I’m not even clever enough to call upon any of these vocabulary words. It’s all simply pain. It makes for extremely dull reading: “This book sucks. One star, but I’d give it a zero if I could! Sad! Loser!”

(But if I were to be imaged and mapped as an electrical grid, I would be very exciting indeed. I would tell a strange story. Spasms, and flares along the knots and hubs, and bright loci, all firing, firing, firing, until the world’s end.)

Even as a prisoner of the very boring and pedestrian pain, I sometimes still think: I wonder if I made this all up. Because if I did, I can fix it. I know I can. Many doctors said it was all in my head before I was diagnosed. They could be right! I will fight like a wounded dog in a ditch to fix this. Because I have beautiful people in my life who love me, and they are counting on me to be brave and beautiful and to ignore the pain. (Sometimes, when I pass a mirror, I think the expression I wear resembles that of a hurt animal that cannot speak and dumbly wishes to be put out of its misery. My friend, the veterinary surgeon, sees this look all the time, before she expires the animal. And then I tend to think that I’m really quite good-looking. And someone this ridiculously good-looking cannot possibly be sick, right? I also have great legs and really decent biceps and fine, upstanding boobs. But I digress.)

If this is all in my head, then all I need to do is relax. Breathe more. Take some Aleve. Do yoga. Stop worrying. Swim when I can. Hot water. Pay attention to my posture. Take supplements. Use the Miracle Balls. Ahem, this is really a thing—“miracle balls” do help.) This was honestly supposed to be part of a different post, the post that listed “All the Things That Help Me With My Fibromyalgia.” I don’t want to suggest that these things don’t help! In fact, they certainly have. The problem is that they are temporary. Maybe I just need to use these remedies more. 

But just when I’m exulting in the moment of finally selecting a new “inner dialogue” volume from my shelves—perhaps its “Just Keep Moving! You Are Fantastic!” or “Bonus Energy Surprise! You Won the Fucking Lottery Today!”—I reach out and pluck out that sad, dog-eared volume on pain whose author looks like she got whacked with a cudgel studded with stabby Christmas ornaments. Whacked hard in the knees, ribs, shoulders, back, elbows, ankles, fingers, collarbones. Still smiling, wanly. Her author photo tells the whole story. She’s an absolute expert on her subject. Not many people can see her pain, because she’s smiling well enough. But I do.

It’s so very hard to choose another book.

But I will. I must.

How do we go on? People who have Fibromyalgia are in constant, sometimes unimaginable pain. Some are in worse pain than I am, which I cannot imagine. How do we even face the day? How do we read a book, or hug our children, or cook dinner, or fold the laundry? How do we commit to jobs that require us to smile at people? How do we shop for groceries and actually return our carts to the cart corrals (please tell me you do; Fibromyalgia is no excuse here.) How do we continue to stand out in the cold wind and gas up the car? How do we limp down the driveway to collect the mail? How do we sit in a chair, as I do, and type out blog posts that will garner us no favors or fame or money?

Because we are the brave. No matter how bleak it seems, we will never just read one simple story. We can acknowledge that we have read, and will read again, that dreadful autobiography: The one that I call Pain. It will always and always sit on our shelves. But it isn’t who we are. We are a great  library of poetry and truth and submarines and whelks and tangerines and fireworks and ocelots and 17th-century history and rockets to the moon. We are here for a reason, and we will be called upon when it counts. Because we already know what heartbreak feels like and we have been brave and strong for so very long. We will never give up, never stand down, never falter.  

If there is to be a resistance, I will be at the forefront. I am not scared. Why would I be? I am well-versed in pain. Maybe I could finally place that awful, boring volume called Pain way down to the fifth or sixth shelf, well below the volumes of Dignity and Honor.

Postscript: Please. Return your carts to the cart corral. Or even to the very door of the store. We aren't the kind of people who leave our carts parked upon the curb, even when we are bone-tired. The carts do tend to get away and cause mayhem.

The Fox and the Rabbit: What Does Fibromyalgia Feel Like?

What does having Fibromyalgia feel like? I've read numerous descriptions and, although there are definite themes shared among us, every person's experience is unique. I tried to find a blog post that captured all of my particular symptoms with perfect eloquence. I couldn't. What I found is that, even though I think I'm suffering like a Christian martyr trudging up a slope strewn with shards of ice, rusty screw guns, and carnivorous sticky buns, there is always someone whose pain is worse. Sometimes much worse. That doesn't offer me much solace. It just makes me sad.

Haven't a clue what I'm talking about? Learn more about Fibromyalgia here or here.

But I do want to explain how Fibromyalgia makes me feel. It might help when a friend or loved one doesn't understand why I keep grimacing during, say, a board game. Maybe after reading this post they will say: "Ah! You feel as if someone has turned your sinews and muscles into sharp metal strands, and is now braiding them quite viciously," or "Well, NO one cares for nails made of hot gravel being pounded into their joints! I'd grimace, too. Carry on, it's your turn." Or even "Malevolent sticky bun latched on to your brainstem again, what? No wonder you're so sluggish and foggy-headed!"

Here's a simple experiment. It may seem unseemly and unpleasant. First clench one hand tight into a fist. Now choose a part of that fist and bite it, for as long as you can tolerate. Your curled fingers will do. Give it a fair amount of pressure. Give it five minutes, if you possibly can. Notice what happens.

The immediate "victim" of the bite, your clenched fist, will begin to protest. It's already remorselessly tight, and now something is biting it? Seriously?! Not good. But, there's more! Soon, your jaw may become tense and tight, even sore. The exertion of holding the fist, along with the bite, will begin to seem intolerable. All you have to do to release the pain is to open your mouth, open your hand. Why are you doing something so ridiculous as biting your fist, just because I suggested it? Please do not do this in public.

If you have Fibromyalgia, you probably know where I'm going with this analogy. If you know a loved one who has Fibromyalgia, you might have your whole fist stuffed in your cakehole at the moment, and are feeling surly, and I appreciate that.

Fibromyalgia feels as if your body is gnawing on itself, every minute of every day. (Even on the "good days," when it's just gnawing with less fervor. On the best days, it still nibbles, like an itch that can never be scratched or eliminated.) As I've suggested, your body itself is already intolerably "tight." It has become a fist that never opens. Then, you visit it with numerous indignities, and they are certainly not confined to the hand—you sink pain into the neck, into the knees, into the edge of the jaw itself. Note that I do not use the passive voice in the sentence above, because you sense that your own body is conducting this cruelty.

I am hideously aware of the pain in my own jaws and also of my victim's pain.
It's not cool.

You become intolerably aware of the pain. You are the jaws of the predator, and there is no pleasure in being the predator. You will never kill your victim. You are a fox worrying the rabbit to death, over and over and over. Unlike an actual fox, you feel the rabbit's pain. You aren't even hungry. You feel remorse for the rabbit. The rabbit and the fox, the jaws and the flesh and the pain and the grief, are bound together forever in a singular dance.

If you are still biting your fist, stop, you fool. You probably look like an idiot, with tears springing to your eyes on the Metro North. You probably look like a woman who wants to scream because she is so heartbreakingly frustrated and is biting her fist to prevent herself from doing so.

Thank you for trying, if you did, but no one should suffer for very long. Where does that leave me? Some mornings, when I wake up to another day of stiffness and aching and mind-numbing pain, the phrase "What did I do to deserve this?" sometimes springs into my head.  I really thought that today might be different. I limp my way down the stairs, leaning heavily on the banister. My entire frame feels off-balance and wobbly. Trembling hot shards of pain fire through my shoulders, knees, elbows. My upper back and neck burn as if I've been beaten heavily with a cudgel, scalded, racked, and seized. I think that maybe the nasty local gang, the "Sharpened Hot Sporks Laced-With-Acid Boys," took me down last night, unawares.

I had a haircut last Friday. My first in many weeks. A woman was washing my hair and massaging my head and I relaxed a little bit and had this random thought: "Hey, I wonder where I would get heroin in this town, if I truly wanted heroin? Because I heard it's a real suburban problem, but I'll bet it would take my pain away. For sure it would. But, goddamnit, it's heroin. I probably should never try heroin, right? I think barfing is involved. OK, forget it. How does one get one's hands on medicinal marijuana? Would I qualify? I don't want the kind of stuff that makes me mistake a can of Mandarin Oranges for a can of Marinara Sauce and serve a very wrong and disgusting meal. I just want the pain to go away."

Not very tasty atop pasta. Oops?

Then there is the horrible malaise and fatigue. Making even the simplest breakfast for my sons feels exhausting. Bending down to pick up a bowl from the cupboard, walking it to the breakfast table, removing a carton of milk from the fridge, returning to retrieve a spoon from the cutlery drawer, extracting a box of cereal from the cupboard, setting it on the table—a series of small steps that is, somehow, torture. Every move hurts, in varying degrees, and depending on the day.

My sons are perfectly capable of all these tasks, of course. But if I were to languidly dictate orders from my fainting chair, I fear I would become the cover girl for Bad Parenting magazine. As I write this, I realize that delegating every single task in the house would be the best thing for my sons. It wouldn't hurt them one single tiny bit, and they have energy to spare. It's just my guilt that keeps me on my feet, thinking "I should be a better parent. I should have more energy. I shouldn't hurt."

I have never been a person to collapse on the couch, except when I've come to the very end of my rope. I have to keep going all the time. I can't sit still. My mother, in her late 80s, is the very same way. She will insist on painfully ascending the stairs to the second floor just to ensure the pillows on the guest bed are fluffed, no matter how many protestations we utter. She will wander around endlessly, buffing the counters, long after she should be in bed. I've despaired of her perseverance, yet I am proud of it in a way I can't explain. Well, yes, I can. I explain it this way: We are not lazy people.

So I don't stop, ever. A day without exercise is wrong. My overactive mind will punish me for it. My body will feel restless and unfulfilled if I didn't swim or bike or walk or run, even if it is simultaneously crying out in agony. I can be utterly exhausted, defeated, and in agonizing pain—in a place where I have no business anywhere but in bed or on the couch—and I still insist on exercising, hauling firewood, dragging around set pieces for the middle-school musical, playing piano, toting groceries.

Being Strong and Tireless is part of who I am. A me that isn't "strong and tireless" isn't someone whom I would recognize or even care to know. I'm the person who can pick up the 80-lb canoe solo, if asked. I'm the mom who can swim a mile and then spend another hour playing "pull-up" with the kids (a vicious form of Sharks and Minnows in which you literally have to dive down deep to capture your minnow and drag him/her to the surface). Why, just two days ago I was hauling a huge and recalcitrant fake Christmas tree, part of the decor for the middle-school musical, out of the school foyer. The damned tree was collapsing on my head, barfing out ornaments and tinsel. I was sweating and grunting. A man paused and asked if I needed help. "Oh, no thank you, I got it," was all I said. Then I went and got another tree, and dragged that one out, too.

I felt good dragging those trees. I felt like the warrior I know myself to be. I didn't hurt a bit while I was dragging those trees. I would have dragged a thousand trees. I don't know if this is true of anyone else with Fibromyalgia, but sometimes the harder things are the easier things. They make you completely forget that you are all torn up inside, because, after all, every day and every moment you are all torn up inside. Lifting rocks and bricks and boards makes the "torn up inside" feeling make sense. Of course it should hurt to drag that heavy load. It would make any healthy person hurt. Therefore, I am healthy. Or just very stupid, because I probably pay for my exertions later. Plus, I won't take a moment to rest.

It's the little things that hurt, the small and ordinary offices of life. Putting away laundry is just dreadful, and that's probably true for people who don't have Fibromyalgia, too. When I hear "I need help turning on the water for my tub!" from up the stairs, my mind bends and wavers. It's a weary climb up one short flight, a cranking of handles. Why does something this small have to be so painful? When I pass the pile of papers and school photos that should be trimmed and filed and put away, I always think: "I'll do that tomorrow. I'm far too tired today."

It all feels rather hopeless, sometimes, because even watching television is painful. How could watching a television be painful? As I sit there, trying to focus on the plot and to lose myself in the story, I am bitterly aware of my muscles spasming, of my utter failure to relax, of the tight hold the invisible, gnawing thing has on my neck and shoulders. Sometimes I stretch, and my tight joints protest. At other times I try a little self-Reiki, palms to jean-clad thighs, and I wish the pain away.

I have been successful on a few occasions. Sometimes it recedes, and I am able to forget (for 1 minute, 2 minutes, 3 minutes?) who I am. This happened two days ago while I was drawing this grasshopper. I used the book Drawing on the Right Side of the Brain and I drew this grasshopper upside down, in an attempt to shut down my anxious time-clock left brain and activate my right brain.

My sketch of a grasshopper. It will probably be devoured by a hungry predator within minutes, its short and fleeting life meaning nothing. 

Guess what, little grasshopper? My pain went away, while I was drawing you. Now that I'm writing this, it's back in full force. It eats away at the base of my skull, and at my shoulder blades, and inside the architecture of my knees, and it burns along my back, and here I am staring at this grasshopper and I know that while I drew it the pain was still there, somewhere waiting on the sidelines. But it didn't matter. Because I wasn't trapped in my body. I was calculating the precise distance between wing and leg, and dreaming of hauling big loads.

I don't have any real wisdom to give. The only things I have ever figured out are to stay busy, to not be lazy, and to keep on, and on. Never give up. Keep doing. I'm still in pain. Sometimes it's bad. Some days, really bad. 

The fox is still dancing with the rabbit. The rabbit gives itself wholly, unwillingly—taut as a wire. The fox digs in with claws and teeth, but it has no love of the conquest. I watch their exertions with my clenched fist held between my teeth, praying for absolution. Praying that I can hold on long enough to be a proper poet for the fox, the rabbit, and the breaking day. Give me enough time. 

Deep Dive: Underwater Therapy for Fibromyalgia

If you have Fibromyalgia, you've probably been told that swimming is one of the best forms of physical therapy to relieve the pain. It's absolutely true. Per my doctor's recommendation, I try to swim laps for 40 minutes first thing in the morning, whenever possible.


She also told me I should do yoga, but I loathe yoga. All those hideous bare feet and tooting noises! All those smug skinny people with their sticky mats and expensive unitards and other sorts of leggings and tards and snoods and things.

Listen, I know that yoga would be good for me if I just had the patience, but my mind operates much like an army of frantic little gerbils galloping away on spinning wheels, all wearing spectacles cut to the wrong prescription and listening to competing radio stations that fluctuate on a spectrum between "BBC Unsettling and Depressing World News" and Top 40 songs with inane lyrics like "Now that I'm without your kisses/I'll be needing stitches." (The logic of such a statement causes me significant pain, wholly unrelated to Fibromyalgia.)

This is exactly why yoga would be good for a person like me.

But when one has only a bare 40 minutes, perhaps, to get in essential exercise that will save one's body and soul, I would choose many other activities, such as:

• Kicking the hoo-ha out of something inanimate
• Digging a ditch
• Climbing a hill
• Moving slabs of concrete from one location to another, for no real purpose
• Swimming!

It is the latter that brings me the most peace. It's a form of moving meditation. I've always been a strong swimmer, so I don't flounder or flail. I just move forward; I'm unstoppable. I never get tired. I prefer lakes and large bodies of water where I can just head to the horizon and go on until I meet the far shore. But I can put up with chlorinated pools when that's all that is available.

(For the record, I have spotted some weird and unpalatable people in pools as well as in yoga studios, displaying their awful naked feet and such.)

It was in such a pool that I recently—and accidentally—discovered an amazing thing about Fibromyalgia and water that dramatically reduced my pain. Here's how it happened.

In preparation for volunteering some of my vacation time at my children's camp, I signed up for Lifeguarding Certification at my local Y. The course takes five full weekend days. I expected that this would involve a great deal of swimming, but it actually involves a fair amount of "sitting in a room and watching videos."

Also there are some exciting scenarios during which one has to revive gravely-injured and non-responsive victims, who happened to be made of a rubbery substance that made me sneeze explosively for five minutes.

Do NOT swim here. For any reason.

The other participants in the course are two 15-year-old girls and two 18-year-old boys. They are amusing to watch during the boring "sit and watch videos" part of the course because they get all itchy-fingered for their cell phones. One of them fell asleep for a few seconds the other day. And one became so bored that he started aimlessly drawing with a pen on his own palm and gazing obsessively at his artwork.

Plus, they have some pimples. Other than that I am jealous of them, except for the fact that lifeguards—who guard your fucking lives, people, and the lives of your children—can expect to make about $10-12/hour max. After five full days of reviving rubbery half-people and listening to lessons that include "Fecal Incident Response Recommendations!" They ought to make more money.



[Aside: I was faster than all of them in the swim test except for one of the 15-year-olds who happens to be on the swim team.]

So, to even qualify for Lifeguarding you have to do three things:

1. Swim 12 laps (6 breaststroke, 6 freestyle)

2. Jump into the water, swim out and dive straight down to 13 feet to retrieve a 10 lb brick, swim up with it and get it back to the wall and yourself out of water within a time limit.
3. Tread water for 2 minutes with your hands out of the water.

I was feeling pretty warmed up and happy after task 1. But, as I stood shivering on the pool deck and watching the nervous teenagers in line ahead of me complete task 2, I got a mite anxious. What if I failed the test and sank like a stone? What if I couldn't find the brick while peering through the shitty, smeary-assed goggles I'd grabbed from the Lost & Found since I'd misplaced my own?

When it was my turn I struck out, sighted the brick, and made the dive. All the way down to 13 feet. I grabbed it, and kicked myself to the surface. It wasn't that hard, but it wasn't particularly fun. I swam to safety with my precious brick and that was that. I got out.

As we did the third task, I noticed something strange. I felt lighter. Better. The persistent ache that I'd felt even after swimming the 12 laps (admittedly not a long distance) was entirely, completely gone.

The synchronized swim team was practicing at the same time, to a bouncy little jazz number. Boy, were they amazing! In perfect unison, they rose out of the water like dolphins and flexed their arms and kicked and then vanished beneath the surface. The timer started, and I pulled my hands out of the water and did a little jazz hands number to accompany my water-treading, just because I felt like it.



The whole rest of the day I felt better than I had in weeks. Now I make a point to swim underwater and I feel a big difference when I do. I go as deep as I can. Something happens down there, under the pressure of pure water.

I think there is some science behind this, according to my sister-in-law, who is a natural healer. Water somehow helps equalize the pressure in the body and helps lymph nodes drain properly and some other stuff I haven't fully explored yet. Google hasn't been very verbose on the subject. Maybe this will work for some, and maybe not for others. I'd be curious to hear your comments, and any research you come across.

All I know is that when I dove deep, it righted something in me; it equalized my hurting self with the world. I was finally a real thing in the world. I didn't need to fight the hurt anymore. At least for that day, and that was enough.

Fibromyalgia: This Is Who I Am

I hurt. I hurt like a bird brought down from flight, a tree limb weighted by ice, a shuddering bolt of metal in a groove. There were times I ran in the sun. I have swum across lakes. I have carried heavy loads. I will still do those things. I will. But I hurt, all over. Something with talons has me about the neck and digs in, and I strive every moment to escape. Signals fire down my limbs. Elbow, wrist, fingers, knees, ankles.

I’ve recently been diagnosed with Fibromyalgia, and I have the most profound relief. Honestly, I wish it had been something worse. Something that would make people really sit up and take notice! Because “Fibromyalgia” sounds sort of like “Oh, you have the Yuppie Flu” or “You have some chronically lazy and fake pain caused by your hatred of being a servile wench at the beck and call of the helpless multitudes” or “You wish to get out of folding the laundry again.”

Well, it’s real, and you can listen to people speak about it in the NY Times here.

And read about it here.

And here.

Fibromyalgia has the following symptoms, at least for me:

• Lots of fucking pain all over your body, most of the time except on those rare "gift" days.

• Crushing fatigue, on and off.

• Fuzzy-headed "fibro-fog:" A condition that makes you feel drunk, but not in a good way.

• A hyper-attuned startle reflex, such that a ringing phone or a sneaky kid with a water-bomb makes me have a small panic attack.

• An unsettling feeling of nerves "firing" in my body when they should not be. Like a series of small bombs going off: Plink! Plink! Plink! Every time they fire, I grow tense and exhausted.

Still, I wish I could have told people I had Lupus, or something like Granuloid MyoOptic Diffusion Carconosmia (doesn’t that sound scary?). My 16-year-old cousin died of Lupus! She really for real did. And that would mean I might die of it too, and people would feel really sorry for me and bring me pies and never once question the veracity of my pain.

I don’t have Lupus, so thinks the doctor. (Still waiting on the blood tests. I might have it, or worse.) And I don’t get any pie. I don't even care for pie! I hate pie. Don't bring me no stinking pies.

For months, years, I have asked doctors to tell me what’s wrong with me. They have all said I’m healthy as a horse.

“Your bloodwork is completely normal and there is nothing at all amiss. You should consult a psychiatrist, because you are clearly a nutter who is looking for attention and is making up a whole lot of fantasy badness in your head.”

“Your MRI shows nothing that would explain this pain. Everything is normal. Normal! I will send you to physical therapy, where they will charge you up the wing-wang to pull at some elastic bands and hoist wimpy 3-pound weights and do stretches. But your physical therapist will be exceedingly white-toothed and attractive, at least.”

“I’ll write you a prescription for Myclobenzaniadreapene. That will relieve some of the pain. Except you’ll be so sleepy you won’t be able to function. In any way. You will be comatose. And during your comatose-ness, you will actually still feel pain! Because the pill is actually just a placebo made of horseradish and marmot sweat, with a touch of sleeping powder as a glaze.”

Before I knew what this thing was, I complained to anyone in range, when I hoped to have a kind ear. My fingers turned cold and numb and white, when the temperature was a mild 62 degrees. I slapped at them and felt nothing at all. I cried, my cheek against the cold bathroom tile. My comb was filled with loose hair and I was as stiff as an 80-year-old, clenching tight upon the banister to get downstairs. Every morning is like that. I’m old before I’m young again.

I get really cold when no-one else in the room is cold. My teeth start chattering. I don't understand.

One friend said: “You're cold? Come on. Women are being enslaved in Syria. Hello, #FirstWorldProblems.”

I stopped complaining, for the most part. 

Well, no I didn't. But I tried hard. I tried to direct my complaints toward kind ears, such as those of my veterinarian friend, who, upon hearing some of my symptoms, suggested I see a rheumatologist. 

"My vet sent me," I told the woman who finally diagnosed me. My vet says she sees dogs gaze at her with the same kind of sad puppy-dog pain-filled eyes that I have. (She's one of the few whom I have allowed to see the full spectrum of unattractive misery.) 

I don't wish to complain, because it is utterly boring. But I want to explain away the grinding exhaustion that casts a dark shadow over my face during a game of Uno. I feel I should account for the fact that I keep grimacing, that I suddenly have to lie down. The raptor of pain has me in its grip. I’m not your mother anymore. I am a thing. I am a thing of want and hope. 

“What’s wrong, Mommy?”

“I’m in a little bit of pain, honey.”

“Are you sick?”

“No, I’m fine. I’m not sick. I would like a healing hug.”

And so they give them, believing in their small powers to cure. And every now and then I feel a frisson of energy awaken me, and my back sings, and my heart thrums, and my very hair starts to vibrate, and I think: “My son is a natural healer!” 

When the hurt settles again, I decide: “That was some powerful mojo. But it didn’t last. But it was for real while it did.”

(I really do believe in things like Reiki. In my next life, I will be a Reiki practitioner. I will help people, and heal them. And I do believe that my sons’ healing energy has given me something. Maybe I am a total whacknut, but littlest son’s last “Ultimate Special Hug With Kiss Attached And Some Chi” packed a big whammy. I'm not joking.)

My doctor gave me a pill. I am waiting for it to work. I don't write anymore. I don't do much of anything anymore, except wait for that pill to work.

It hurts while I am watching a movie. I try to pay attention to the plot, but really I am wondering: “When does the pain end? Will this go on forever and ever?” It hurts while I am watching my eldest son’s basketball game, during which he moves so gracefully, so swiftly, that, for a brief moment, it makes my heart swell and ache beyond comprehension. How could he be more beautiful? He's suddenly so tall, so heart-rendingly tall. And my second son spins through the living room and lands at the piano bench and bangs out a perfect rendition of the Star Wars theme from memory and then spins away, pain free, light as a breeze. And youngest son flails himself without fear from ottoman to couch in gap-toothed ninja derring-do, and I watch it all and feel love and joy and all along the way I can’t help but think I’m in pain I’m in pain I’m in pain.

I wish I could stop thinking about it for just one hour. Five minutes. And I feel incredibly guilty, because here they all pass before my eyes and what am I thinking about? Me. My own pain. Circus caravans and dancing yetis and talking penguins in bras could pass before my door and I would still be crouched in some small corner of my brain, cognizant of only one thing. Pain. Boring selfish whiny stupid ever-present pain eating my days alive.

What a bore. I have become a fucking selfish bore.

I wish I could stop feeling it.

But sometimes I make myself forget, actually. I am learning to play “Linus and Lucy” on the piano. When I sit down at the piano I become not myself, for some pure minutes, and although I feel pain tracing its insidious way down my right hand as I hit the chords, I don’t care.

Last winter, I decided I would learn how to skate, because it was the scariest thing I could imagine. I could twist an ankle! I might fall and crush my coccyx! Or I might fall and a skater would skate right over my hand and slice off all my digits! (OK, you have now probably realized that I suffer from anxiety, too.) I hurt all the time while I was skating, but I didn’t care. I was learning how to fly. One day, while I was clinging hopelessly to the side wall and scratching along, I heard a girl say to her friend, “You’ll never learn to skate if you always hold onto the wall.”

On that day I resolved to let go of the wall, and I was freed.

This winter I went sledding. I learned how to serve in paddle tennis, such that the ball goes in 95% of the time as opposed to 5% of the time. I practiced in my driveway once, against the garage door. I hurt the whole time I was doing it, but I didn’t care. I played one-on-one basketball with my son in the same driveway, and I was terrible­—an embarrassment! He took me down. He was “baller,” in tween lingo. I was a rickety, rusted thing. But I tried, and played, and that is what I care to count. I gave him a run for his money, because I never go halfway.

Every moment hurts. But every moment matters, even when I hurt. Right now, as I type, my neck and back and arms and fingers and knees are a blurred presence of pain. I want so much to walk to the piano and just play, free and clear. I composed songs; I want to finish them. I want to sing. I want to finish that beautiful novel, but after being at a computer all day, hunched and intent, my body betrays me: No more no more no more.

Even writing this hurts. Typing even hurts. But it was worth it, because maybe someone like me will one day read it and think: I am not alone.

We are not accidents. 

The Insects Are Going to Sit On Us

My husband heard on NPR the other day that there are 200 million insects for every human on the planet.

"Just suppose," says he, "That they all got wise, and that they decided to gang up on us. It would be 200 million to one!"

I thought about this, and said, "Yes, even 200 million butterflies would win against one frail human. They could all flap their wings in unison. What about 200 million blackflies or mosquitoes? What if they decided to fight us? They would win!"

"Who said anything about fighting?" said my husband. "All they'd have to do is sit on us."

You see now why I have an anxiety disorder.

I thought, "What a great idea for a new book!" so I wrote one immediately.

My new book THE INSECTS SAT ON US is a YA Paranormal Romance, in which our heroine Brittanee meets Jordan, a football player, but their romance is ruined when they are both sat upon by aphids, earwigs, and termites. It is complete at 32,345 words, which is as far as I got before I was sat upon by a cloud of moths, who ruined my typing skills. I am sending it to you, agent, who are now likely being sat upon by locusts and boll weevils. I don't expect a response, but if you should reach out to some editors you know before they, too, are sat upon by mites and beetles, this book may yet stop the plague which is now upon us.

THE INSECTS SAT ON US is like a cross between ARE YOU THERE, GOD? IT'S ME MARGARET and THE BIBLE. And maybe with a bit of LITTLE HOUSE ON THE PRAIRIE and TWILIGHT and some Kafka and Dante thrown into the mix. It would be best to accept this book because I think now that the insects have become my friends, and will sit on those who spurn me. They will sit with alacrity! They will sit with their antennae fierce and erect! Do not cross them.

Respectfully and now totally controlled by insects, who are cooking my supper and braiding my hair,
The Party Pony

All Food Is Poison and Anything You Eat May Kill You

People with panic and anxiety disorder are very suggestible, and they are especially suggestible to their own stupidity. The story of the last month, below, reveals my extremely scientific approach to food intolerance and how it may affect the brain. Please note: If you read this and decide that you, too, are intolerant to all the things I have listed, then we should have a martini together. Contact me. (Except that martinis are derived from wheat, and are now a terrible poison to me. I will be drinking a tea made out of organic quinoa shavings, while you enjoy your delicious martini.)

About one month ago, I decided I was intolerant to Gluten. Gluten can cause all sorts of bad things, I’d read, and I wanted no part of it. It has been reported to cause indigestion, osteoporosis, rashes, and depression. I cut all Gluten out of my life. By the second day off Gluten, I decided I was cured of every anxious thought I have ever had. I ran about through the wet grass in the night, and hurled a tennis ball at the moon.

“Yah! I am cured!” I said to the moon.

A few days later I started feeling dizzy and anxious again, so I decided I had an intestinal parasite. I researched all kinds of parasites, and found out that some can bore into one’s brain! They really can. They can invade every major organ in the body. I researched some online cures that promised to expunge parasites from the body.

But what if it wasn’t a parasite? What if it was just my own idiocy? Then I would have paid $47 for a revolting “colon cleanse” that would just cleanse the nutrients from my body and make me even more dizzy and ill.

I held off, but still brooded heavily about the parasites.

Another week or two went by. By Thursday 5/19, I decided that I didn’t drink enough water. Water, by God, now that was the solution! If I could gurgle down about 10 glasses a day of water, I would be instantly healed and would wake up with my hair in a braid and a song on my lips. As I woke, I would sing a song that would begin with the words: “Another glorious day to celebrate my life!” I made a chart and started to check off how many glasses of water I imbibed per day. On the first day, I drank 10 glasses of clean, pure water.

I woke up feeling just as rotten as ever. “Perhaps,” I thought, “I was right about the parasites.” I also pondered a bit about brain tumors and incurable mental illness. Or maybe I had lactose intolerance? Maybe I was allergic to coffee. Maybe there was some kind of oil in the coffee bean that was sick-making, and caused incurable mental illness. Why, look at the proliferation of coffee shops, and all the poor sad addicts standing in line.

On Friday 5/20, I gave up coffee.


On Saturday 5/21, I was fully convinced that my troubles were all due to a mysterious malady called Fructose Malabsorption. If you have this problem, you can’t eat most fruits, high fructose corn syrup, asparagus, artichokes, onions, leeks, wheat, and brown rice. Basically, everything that is good for you. Fructose Malabsorption can make one extremely anxious and depressed, and can even make one’s eyeballs ache. Plus, it causes bad poop incidents and a bloated tummy that looks like you just swallowed a dodgeball. All these terrible things have happened to me. Therefore, I had "Fructmal."

I started drinking coffee again. What did it matter? Apples were poison.

By Sunday 5/22, I had discarded the Fructose Malabsorption theory altogether. It would be a bore to never eat an apple again! How would I explain this weird food intolerance at Appletini parties?

Instead, I now determined that my trouble was corn and dairy. Corn, the evil of America! No pretty corn-fed maidens, sipping frothy glasses of milk, would tempt me again. I packed up the industrial-sized bag of Costco tortilla chips and, on Monday 5/23, thrust them at our nanny on my way to work.

“Take them, take the awful things from my sight!” I begged.

“But, we just bought those,” she said.

“And look, I have eaten half the bag,” I cried. “It is no wonder the corn has made me quite ill and mad.”

I glared at the cheese in our fridge with suspicion. No doubt it had been made from mad cows and goats, and eating it would pickle my brain matter. I would eat no cheese. I gave up coffee again. I had some weak tea without sugar and milk. I felt very bitter.

By now there was very little left on the "safe list" that I could eat. I ate a few nuts and a banana for breakfast, and became worried about the Fructose thing all over again. “Suppose I was right, and this banana is not on the ‘safe” list, and it makes me sicker than ever!” I fretted about this on the way to work.

By 11:00 I was so weak and shaky from not eating a proper breakfast that I had a panic attack, and immediately nibbled at the corner of a small Xanax. I felt much better.

If you can cure me of this stupidity, I will send you a package of cookies. They will not contain any wheat, corn, dairy, nuts, fruit juices, or sugar, and will taste like little turds coated in sawdust.

Here's to You, Anita Howard

A few months ago, I was feeling rather low. I was consorting with worms, and sticking my head into the compost bin to drown out the harsh and awful daylight.

The words "pull yourself together" could not be more apt for a person like me who struggles with panic and anxiety on a frequent basis. At its worst, fierce panic makes one feel like one is literally "falling apart." These clichés were born of truth.

I had days that were not good. Sometimes I had maniacal thoughts: that my kneecaps would just plain fall off my legs, or that my teeth would fall out into my soup. It's called "personality disintegration" or "depersonalization."

I tried many things, including fancy lights, tinctures, pills, breathing through only one nostril.

I also had what's called "derealization"--that funny sensation that the world is not real. I swam out into the world wearing fogged and hopeless goggles. I forgot how to get home, sometimes.

(The story of all this is being told in a book I'm writing called PURSUED BY BEARS.  I hope it will one day have a spine, rather than a blinking cursor on a screen.)

Then one day a fellow writer named Anita Howard visited my blog from Query Tracker, and left me one of the nicest comments I have ever received. I had been keeping this blog for a long while, but hadn't even bothered to tell my neighbors about it. (It is a pity that I've told them now, because now I can't write about them as freely. Oh neighbors, I wouldn't say a thing about you, and you know that!)

Some friends had read my blog, sure, and they said awfully nice things as well. But Anita was a stranger. And she talked to me like she was an old friend. I knew right off that she was a good egg.

You probably know her. As another blogger recently said, "she knows all the cool kids." If you don't, go and visit her. I'll bet she'll say something nice to you, too. And she'll mean it. No fakies.

I wanted to say thanks, Anita. Because one never knows when that kind gesture, that thoughtful word of hope, that effort to take time out to reach out to someone will matter. It's true online and in our everyday lives. Smile at a dour person you pass on the street and say hello, and see how his or her face changes. It's magic, ain't it? (Unless they are touched in the head, in which case they may bite you with razor-sharp fangs. Best to be warned. It's not my fault if this happens.)

Here's another fat cliché: Ray of sunshine. And another: Ray of hope.

So yesterday Anita gave me this blog award--one of many that she has given to some other wonderful writers on this Bloggy Wonderland post. It sort of says that I am mad as a hatter. In fact, that's exactly what it says.

If I'm mad enough to startle when a butterfly flaps its wings in Tibet, or despair at my own lurching heart, or count and multiply the ceiling tiles in an effort to avoid staggering into a ditch of my own making, then I am also mad enough to dream, to write, to run for the far borders of my imagination.

Thanks for the reminder, Anita. Oh, and you get the Bacon Award AND the Hot Buttered! I don't suppose you want the sebaceous cyst award? Didn't think so. Damn it.