Thursday, December 15, 2016

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.

Monday, November 21, 2016

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. 

Monday, November 7, 2016

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.



Thursday, April 14, 2016

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.

Friday, March 4, 2016

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. 

Wednesday, January 6, 2016

Anonymous Letters and Anonymous Turds

I haven't posted here since the demise of the Manny. Nor have I written very much at all, despite the desperate pleading from my legions of fans for the sequel to my novel, The Hundred: Book Two. It's in the works, I assure you, you girl who sleeps with Book One beneath her pillow (that doorstopper must give her a crick in the neck!), you wanna-be author boy in that one school in the Bronx, and you creepy guy in the trench coat at the end of my driveway. Fans!

I just happen to be very busy right now. We moved to a new state two months ago. (Rah Rah Connecticut! And hurrah for our state animal, the Sperm Whale! Really? I just Googled this and I am a little shocked. And thrilled. Did you know that Moby Dick was based on a real Sperm Whale who was called...wait for it...Mocha Dick! He roamed the South Pacific in the 1840s. I'm not kidding at all. From Wikipedia: Mocha Dick was a notorious male sperm whale that lived in the Pacific Ocean in the early 19th century, usually encountered in the waters near the island of Mocha, off southern Chile. He was often accompanied by Whatta Dick and Totall Dick, his brethren, who pretty much destroyed everything. Mocha Dick survived many skirmishes (by some accounts at least 100) with whalers before he was eventually killed.)

Told you Mocha Dick was real! You were inclined to disbelieve me, weren't you? His bwuddahs are real, too!
So, back to me and my writing, or lack thereof. I wrote several songs in the last few months, and they even have real chords! And I can play piano and sing! (Albeit like a dying goat.) I also wrote some anonymous letters to strangers in my old neighborhood, before we moved. No, no, they weren't those sorts of anonymous letters! Not the kind of letters that also include a turd lovingly Scotch-taped to the envelope. (Although, I must say, some individuals might have merited such a delivery.) They were lovely handwritten letters, containing hope, inspiration, intriguing quotes, and sometimes a full shot glass worth of Vodka, if you wrung them out carefully.

I did it as a sort of experiment. I was feeling a little ill-at-ease at times before our move, and also overwhelmed, so I thought: Why not spread some love/happiness/surprise/whatnot into the void of the neighborhood by penning these completely original letters and then slipping them into random mailboxes? I'd write them at night. No copies were made, so I can't prove to you what they said. Of course, there's the beauty in it, right?

Then, on the way to the gym or the post office the next day, I'd scan houses and mailboxes for the right "vibe." When the house felt just right (maybe maybe it would have a little sad feeling, as if the people who lived there might need one of my letters), I would quietly steal up the walkway and slip the letter in the mailbox and then scurry away.

Then I would always get a really pleased feeling, like the kind of feeling you get when you have placed a pickle under your friend's pillow and you can just deliciously picture them discovering it at 3 a.m. and shouting, "What the fuck? Who would put a fucking pickle under my pillow?!?"

This is simply a pickle. Ever found one under your pillow? 
Except this was awesome and different! Not a pickle. A nice letter, written by a former English major with a Master's Degree in Writing. Me! So instead, they might say, "Honey, there is a psychopath around here writing anonymous letters filled with goopy sentiment, and the paper smells a little like Cheetos. In fact, there is some orange detritus on the edge of the paper here. But, gee, I feel so much better suddenly about my life, and now I shall write anonymous letters as well and the joy will spread throughout the world and defeat terrorism and other bad things. Yay!"

Weirdly, after delivery of a letter, something good would often come my way. Not checks and barrels full of money (Poo poo on you, The Secret), but a bit of good news, or a happy day, or someone using the serial comma without provocation, or some such.

I don't know if anyone reading this received one of my letters, but, by gosh, you should note it in the comments if you did.

So when we moved into our new home, a new sort of anonymous "delivery" began to appear. As background, our family loves board games and has often played the game "Balderdash," which is the same thing as the old game "Dictionary." In Balderdash (or "Bladder Dash" as someone most famously called it) you get an obscure word and then everyone has to write a phony definition that will fool people and garner votes. One day when we played, the word was "Thob." Someone submitted the definition: "A poo that doesn't flush." Ever after, should a son fail to flush the toilet after expulsion, it was by definition a "Thob."

Thobbie the Thob!

Then it began.

Day Two in our new house: I enter the downstairs bathroom and find a horrible, fat Thob covered in acres of toilet paper. "J'accuse!" I said to our youngest boy, who denied any part in the matter.

Day Three: A fresh Thob discovered, same toilet. Same acreage of TP. Many fingers were pointed.

Day Four: More Thobs, this time in multiple toilets. We suspect copycats. Guests are present and they are also queried.

Day Five: Another lone Thob in a toilet previously unsullied. The atmosphere is grim in the house, and accusations fly.

Day Six: This time, a Thob in the toilet closest to the boys' bedroom. Middle Child discovers it and reacts with terror and wild running-about. "It smells bad!" he cries.

Day Seven: Quiet and peace reigns. Is it over?

Day Eight: A new Thob! Back to the original, with a full roll of toilet paper nearly hiding its glistening pelt. Horror in the household.

Soon after that, the Wild Thobber left off his repulsive activities, and we have not seen a new Thob since. But I await its arrival, with anticipation and a little bit of glee.

For who amongst us hasn't wanted to leave a surprise for someone else? Or find one. A pickle under the pillow, a Thob in the executive washroom, an anonymous and completely random letter to the lonely, housebound person who used to work in the sad office with the diner plants and the candy trays at every fluorescent-lit cubicle? A little cairn of rocks where there isn't supposed to be one. A note duct-taped underneath a bench in an out-of-the-way train station, from which very few people ever leave. Write letters to the world.