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. 

The Party Pony Officially Endorses Hillary Clinton for President of the United States

As has been made abundantly clear via my social media messages, I do not care for Mr. Donald Trump aka DRUMPF. But rather than continuing to belabor the fact that Trump is a misogynistic, racist, predatory, bombastic bottom-feeding swine with the temperament and vocabulary of a Lumpen fifth-grade fish-eyed playground bully, possessing zero experience, credibility, or substantive qualities, I'm going to talk about Hillary Clinton.

I am a Lumpen swine. Right? Yes? Fact! Sad! Y'alll are losers.

I was never a particular fan of Hillary. In fact, eight years ago, I wrote a couple of blog posts comparing Hillary unfavorably to Obama. Obama's gift for oratory, his grand plans, and his passion made Hillary seem cold and strident by comparison. I wrote that Hillary's gaze could turn "people's blood to an icy slurry and harden the poo in their bowels." 

There was something about Hillary I just didn't like. Every time I heard her speak, I cringed. Her voice stung my ears. There was something shady about her. Everyone knew the Clintons were a dirty lot! Maybe she'd lied in the past? What about that healthcare reform attempt, when she wasn't even an elected official? Her outfits irked me. Her facial expressions were annoying. Her plans and policies were sound, of course, but that didn't matter. I didn't like her. 

I never occurred to me then, as it has so clearly now, what kind of immense bravery and dedication a woman must have to subject herself to the thousand arrows of the angry mob, to the hideous sniffs of a demagogue who says whatever the fuck he wants and gets away with it, but you make one little misstep like refusing to acknowledge that you have fucking PNEUMONIA, and it will stick to you like shit sprayed out of a trumpet. (Pun intended.)

I have been besmirched with a thousand hurtful sniffs, and yet here I stand!

Who, really, would want this job? Let's take the campaign, hideous in itself. Hillary stood there time and again and calmly defended herself against a man who was behaving like an Internet troll under the bridge, a man lacking any reason or decency. He rudely interrupted her, called her a "nasty woman," told outrageous fictions that any elementary-school child could Google fact-check and debunk within minutes. He made us collectively gasp when he said he'd "keep us in suspense" as to whether he will accept the results of tomorrow's election.

Look, people, I would have lost my shit. I would have flung my shoe at the orangeman's thick skull, declared the entire nation incompetent, and sallied forth into the mist to spew obscenities and throw offal at random people. Hillary did not! She just persevered, talking about her long record of standing up for children, for the poor, for the elderly. She has a long record of public service. I was impressed by this piece today from Fox News, by Lanny Davis, in which he tells a story of Hillary arriving at Yale and asking where she could volunteer for the nearest legal services clinic, because "the reason I came to law school is to help me do public service."

Who among you could stand up to this craziness? Who among you would even want the job known to turn your blonde hair to stark grey in a matter of months? Who would want the nuclear codes, or have the savvy to talk to hostile nations, or would have the wits to work through tax laws and health care and nominating the next Supreme Court justice and everything else that goes into being President of the United States? Who among you would worry every day if the pantsuit you wore on television would inspire rude commentary, if people who wear T-shirts calling you a "bitch" might poo on your lawn, or if second-amendment nutbags might be thinking "Hrhm, I think Trump told us to take her out, but I'm not dead sure 'cause I'm not quite clear on the English language, but I sure gotta stockpile of GUNS!"

Do YOU want that job?

People, I don't. I would be scared. I'm a strong and smart woman, and an opinionated woman, and a clever woman, but I am not afraid to admit that I would probably run and hide and have some tea parties and bake cookies. It's not for me. I am a writer and a comedian and a musician. I'm not as tough as Hillary Clinton. Trump and his goons are genuinely SCARY. Hillary has not run, and she has not hidden. She keeps fighting. She wants this job because she cares, and because she can do this job.

Hillary is amazing!

This is America's biggest job interview. One candidate has prepared herself. The other candidate has randomly grabbed random pussies and bragged about it. Whom would you hire?

Hillary is THE ONLY highly-qualified, experienced candidate—in fact, it is said that she is the most highly-qualified candidate we have ever had. She is smart. She is tireless. I've read many endorsements of Hillary and I have come to not only support Hillary, but...I dare say...I actually like Hillary.

Yes, I like her. I like her, and I respect her. It took me a while. Over the course of this ugly, tumultuous election season, my attitude toward Hillary Clinton has undergone a sharp reversal. Yes, next to Trump, Jiggles the Clown or Bobo the Rat-Faced Boy would likely look "Presidential." But I'd like to expunge the "Presidential Look" terminology from the whole campaign. Why are we so petty as to focus on a pantsuit, a haircut, a stance, facial hair (what candidate in past years has dared to boast a beard?), a tone of voice, a manner of blinking, a host of hideous sniffs? (The latter WAS rather suspect.)

Hillary Clinton has shown the most amazing stamina I have seen in a human being on the public stage. She cannot be destroyed by a demonic clown. In fact, she has engaged in a dialogue with the most ludicrous ass-hat ever seen in this history of our country! A man whose entire career is built on nastiness, real-estate discrimination, tax-evasion, and rump-slapping. Who else would you want to stand in the Presidential office but a tough woman who can stand up to that shit?

C'mon, have any of you been that woman sitting around the conference table, while Mr. Beefy McRedFace shouts YOU down at every opportunity even though you are the smartest person in the room but, because you happen to be a rather introverted woman (not me, I'm more of an extrovert, but I know them well and some of them are super smart and probably smarter than me) you don't raise your voice loudly enough? If you were to speak up, would you need to yell to get over the bloviating sound of Mr. Beefy McRedFace? Wouldn't that make you seem awfully... strident? Shouldn't you be more polite? Because women like Hillary...well, you know...they might actually be MEN in disguise. That's creepy. You're probably up to no good, too, like her.

Let's face it, girls. It's because you have a pussy (ick) that Mr. Beefy McRedFace thought it was okay to shout over your wise words that would have saved the organization from a 5 million deficit! Fact! Sad!

Trump would have grabbed that, and lost millions due to tax loopholes, but you are simply not hot enough. How does that make you feel?

Hillary has made mistakes. We all know about them. And she has apologized, unlike her rival (who apologizes for nothing except maybe once, robotically, via teleprompter). These mistakes do not include inciting violence, damning an entire religion, mocking the disabled, pawing lecherously at unfortunate members of the opposite sex, and telling Mexico they are going to pay for a wall to keep their rapists, drug dealers, and a handful of randomly-chosen "good people" out of this country.

Who the fuck cares what that douchemuppet Trump said? Hillary is the only wise and sensible choice in this horrifying election. She's been steady and sure and has stated her views eloquently. She has real, solid plans with a wealth of experience to inform them; her opponent has nothing but blather and hatred (and won't outline any plan at all). If you simply cannot stand Hillary and are considering a third-party candidate, ask yourself: Exactly why do you despise her? Is it her voice? The perceived taint of Clinton "dirtiness"? The pantsuit? The hairdo? Could it because she's a woman? And women are not supposed to "act this way"? Eh, maybe you really despise her policies and you believe she's damned crook, but I ask you:

Examine your opinions. Examine them closely.

Final note: I asked my three boys tonight (ages 12, 11, and 8) at dinner if they thought that having a woman for President of the United States would be "unusual" or "normal." They all three said, one after the other, "Normal. Normal. Normal."

They also know it's historic. But they are young enough to realize that this isn't really "normal," and innocent enough to believe that it is.

I will be proud if they grow up in a world where a female President of the United States is not just historic, but "normal."

I will be proud if the little daughters of anyone's supporters will say, on Wednesday the 9th, that they could, one day, strive to be President too.

Because anyone can. But only the bravest will. It wouldn't be me, I'll tell you. But Hillary has it.

#I'mwithher