Give it a read!
Our next door neighbors are moving out. They’re not just moving across town; we won’t be able to “meet in the middle” somewhere and have lunch. Meeting in the middle would require me to make reservations in Kansas City, and that’s a long way to go unless I’m really craving ribs. They’re going to Phoenix, to live near their family and be with their grandkids.
And I hate it.
My family owns three houses together, in a row on National Road, built by my ancestors one-hundred years ago. My parents live in House #1, I live in House #2, and House #3 is a rental property. We’ve rented it to businesses and we’ve rented it to families. I honestly think I prefer renting it as an office space. Workers show up at 9am and depart at 5. They’re not there on Saturday mornings when I’m feeding my fish in my Hello Kitty fleece pants. They’re not there staring out the window on a Sunday afternoon watching me read a book and scratch my butt. And most importantly, they’re not there to talk to me and be my friend. Because in a rental home, friendships always end in heartbreak.
Some lovely tenants have rented these homes. When I was growing up, a family with five children moved in next door. That day, heaven opened its doors and sent to me, a lonely six-year-old with a boring baby brother, an endless supply of playmates. Our dads built a two-story clubhouse for us. We put on circuses in the backyard and watched Inspector Gadget and He-Man every afternoon. We rode Big Wheels on the driveway and played kickball on summer evenings. And then they had to move out and my heart broke. They moved only a mile down the street, but we went our separate ways as children tend to do when they’re out of sight of one another.
Other memorable and kind families lived in these houses, but just as memorable were the losers. The family to whom my mom, then pregnant with me, gave a puppy she found on the roadside. They tied it up out back and threw water on it when it barked. (She took the dog back.) The people who moved out and left three-quarters of everything they owned for my father and uncle to sort through for four months; the people who moved out and left all of the dirty diapers. And let’s not forget the dude who ran a travel agency scam out of the house. As the FBI was breaking down the door in the front, he was bolting out the back . (We inherited his couch, though I suspect it was tainted with bad vacation mojo given that, for several years in a row, we were plagued with ill-timed weather and a disturbing recurrence of the same awful episode of Suzanne Somers’ 90’s sitcom Step by Step).
Some jerk hammered nails into the beautiful mantles, to hang Christmas lights or stockings or homemade venison sausage. A group of Mormons moved in and somehow released a dwarf hamster named Gray Cloud, only to find it a few weeks later flattened on the road out front. Their kid put holes in our hose with a set of darts.
The jerks are easy to hate, but they’re also so easy to say goodbye to. Though they may leave chaos when they move out, they also take with them a dark cloud of irritation. Boy are we glad those idiots are gone, we say, and then we turn our hopes to the future because the next tenants might be freaking awesome. That’s a grand feeling. It’s like opening a wedding gift to find a tasseled silk throw pillow with your faces on it. It’s appalling, but there’s no way that the next gift won’t be an improvement.
The next gift, the next tenants, were freaking awesome. Sue and Ernie were our friends. They fit in here, and that’s never an easy feat to accomplish because it takes a special family to live in these old Victorian homes. They’re hard to heat, hard to cool. Stairs creak. Ceilings crack. Sometimes water drips down. Once in a while a bat swoops in. While you’re waiting for the shower to heat up you can knit a cowl or write a sonnet; none of the plugs fit the outlets. You need an adaptor. You need a fan. You need pliars. You need a repair guy. There’s a door that won’t shut; a window that won’t open. The kitchen floor slopes to the northwest. The porch kinda sags. There’s a squirrel in the attic. Wrens live in the mailbox.
I once calculated how many times I ascend and descend stairs in my house, on an average day. The number was 64. So in addition to deep pockets for the utility bills and patience with critters in your personal space, you’ll also need healthy knee joints. Because don’t think for a second that the laundry machines are going to be anywhere near the bedroom. That’s right, buddy. The washer is two floors below you, and somebody plastered over the old laundry chute. Start hauling.
Notice: House for rent! Charming old Victorian rich with history. Good bones. High ceilings. Lots of character. Stately entryway with dark wood stairs.
When you find a tenant who sees beyond the quirks and annoyances in your old house, you’ve found a kindred spirit. I’m not here for ease of living or an unburdened bank account. I live here because this is my ancestral home. A tenant, however, shouldn’t be expected to understand or appreciate these things. It’s just a rental, after all. They move in for a few years, and then they move out and move on.
My friends, Sue and Ernie, did appreciate these things. Maybe not the 64 trips up and down the stairs. Maybe not the bats in August. But they knew they’d been woven into the tapestry of a family’s legacy. And in so doing, they became part of our family. When neighbors choose to cross the property line, boundaries blur. When I look at photos of my kids playing outside, I see Sue and Ernie’s house in the background. When I look at Sue’s photos of her yard, her visiting grandchildren, I see my house in the background. We became part of each other’s landscapes.
When I told Ben and Andy that Sue and Ernie were moving back to Phoenix to be with their grandkids, Benjamin said, “But I thought we were their grandkids.” I understand his sentiment. These days, I have many wonderful acquaintances who drift in and out of my day. I know a lot of kind, friendly people. But I have very few dear friends. And as I pause to get up from my desk and realize they’ve just driven away for the last time, I know I now have even fewer.
Next time, I’m not falling for this love-thy-neighbor stuff. I’m sticking to my side of the fence. I’m going to wave and go about my business and never get attached again. No more drinks on the porch. No more happy holiday barbecues and birthday parties. No more hugs, no more chit chat and laughter.
Come on, crappy tenants. Come take a look at the house. Meet your new neighbors. We promise to be gruff and rude and blare music and never share a margarita on the deck. We promise to keep our shades drawn and leave our dogs out to bark. You can rent the house, but don’t fall in love with us.
Because we can’t let ourselves fall in love with you.
A blog series about my struggle with autoimmune disease.
Autoimmune problems start slowly. Sneakily. Autoimmune is a ninja. By the time you realize you don’t feel well, it’s been hiding in the bushes for years, getting to know you and your body. If you woke up one day, as we do with the flu or a norovirus, and felt awful, you’d know you were sick. You’d know something was wrong, that your body was under attack. But when the symptoms come on so slowly that you don’t even notice them, it becomes a psychological game rather than a physiological one. Perhaps in September, you take a few extra naps. In February, you get your third bad sinus infection and bronchitis. In June, your bones hurt. In October, you spend an extra hour in a recliner. In January, you find yourself declining invitations from friends. The change happens so slowly that you’re not even aware you’re deteriorating. But after two years, you’ve gone from an active, happy person to an exhausted couch potato, and you can’t quite remember how or when it happened, but you don’t think you used to be this way, and you’re pretty sure you once had more energy, and some vague feeling tells you this shouldn’t be normal.
But the doctor’s tests say you’re normal. You went several times and returned home with assurances that your body isn’t sick. There’s no infection, no evidence of cancer. You’ve been tested for Lyme Disease and mono. Your thyroid is working and you’re not anemic. You have, however, been asked if you’re under a lot of stress and if your spouse is supportive and if you would like to try something to stabilize your mood. In the absence of any other diagnosis, you’ve probably said yes to the antidepressant, even though it nauseates you in the evenings.
My autoimmune ninja crept into my life in just this way. Quietly. I don’t even remember which symptom came first. Was it the neck pain or the heartburn? Was it the fatigue or the anxiety? The dry eyes or the stomach problems? Was it the sensitive teeth? The receding gums? Was it the bone-breaking pain of phantom influenza that came and went at random? Was it the foggy sensation that crept into my brain and made me forget a face I knew well, recall the title of a book I loved (mortifying in an MFA program), call Andy by his brother’s name, or follow simple directions?
I don’t know. But a year or two after Benjamin was born, I told my family doctor something was wrong. He felt knots in my upper back and neck and gave me injections of cortisone in these trigger points. He told me to take vitamins. He gave me an anti-depressant to help with pain and sadness. He adjusted my neck and prescribed a muscle relaxer.
I saw him many times over the next three years. Stomach problems. Migraines. Flu aches. Urinary tract infections. Back pain. Neck pain. Anxiety. Each time, I left his office with a prescription in my hand for a new pill. Each time, I left his office hopeful that I’d start to feel better and quietly certain I would not.
Eventually, my doctor began to mumble the word fibromyalgia when I’d see him, though he did so quietly. And he refused to write the word in my chart. He said that once the word was in my chart it would be there forever, on every computer and in every doctor’s mind when they treated me. Future doctors would be more likely to prescribe pain pills, or perhaps they’d be more likely to stick to the old theory that it was psychosomatic. I wondered if his reluctance held me back from treatment. Ultimately though, it didn’t matter because a year later his PA would unknowingly write it in my chart. That’s when I understood why he hesitated to commit the diagnosis to digital eternity. That day, I became not just Laura, but Laura Who Has Fibromyalgia.
I understood, once it was written down, that we become our medical conditions. On my own, I was still Laura. To my kids, I was Mommy. To the cat, I was still that clumsy idiot who puts food in the bowl way too slowly. To anyone with a stethoscope around their neck, however, I was “Patient presents signs of fibromyalgia.” That was me. Female, mid-thirties, family history of skin cancer, allergic to sulfa and Cipro, fibromyalgia.
The name of whatever disease you contract carries with it a new blueprint for your future medical endeavors. It’s fun with Greek and Latin. Once you have your very own algia or osis or itis in your chart, they send you to an ologist.
The gastroenterologist looked in my stomach no fewer than four times, took samples of my stomach tissue, and stretched my esophagus to help food go down. (Given that a hearty belch can still propel a Honeycrisp chunk out of my throat and 18 inches across the kitchen table, I’d call his endeavor a failure). He told me to take Prilosec, a proton-pump inhibitor, for my acid issues, which of course could lead to a decrease in bone density and early osteoporosis as well as a heightened risk for a C. difficile, but it was okay because there were pills for those things, too. I also needed to consider Zantac and Prevacid. And everything seemed “fine” to him, overall. No evidence of disease.
Back at my family doctor, I told the PA that my eyes were really dry. And when your eyes are drying out and feeling for all the world like they’re full of silica and charcoal, when you cry and press your sclera (the whites) into the cool mist of a humidifier for the entire length of January, they send you to another ologist. An ophthalmologist. He prescribed drops. He told me to use gel. He told me to use ointment so thick that I walked into a ficus one night. He told me to sleep with a humidifier, to turn off fans and block drafts. He pushed punctal plugs down into my tear ducts to keep the moisture from draining away. He gave me a prescription for Restasis. You know that eyedrop commercial with the pretty ophthalmologist who happens to look like a model? That stuff.
“Be warned,” he said. “It’s very expensive. And you won’t know if it’s working for at least 6-9 months.” I paid $120 for a one-month supply. Later I found out clinical trials had shown Restasis doesn’t even work for people with punctal plugs. When I asked him about it and the $1,080 I’d spent without results, he shrugged.
“I don’t know about that,” he said. “Come back in four months.”
My mouth dried out, my gums receded and exposed nerves. The fatigue worsened, the aches deepened into my bones. I asked my GP for a Lyme Disease test. And I asked to be tested for Sjogren’s Syndrome, an autoimmune disease characterized by dry eyes and dry mouth as well as fatigue and digestive problems. When the blood test detected antibodies for Sjogren’s–another official diagnosis–he wrote it in my chart. And so I became not just Laura with fibromyalgia, but Laura with fibromyalgia and Sjogren’s Syndrome. I became Laura, with autoimmune diseases. There it was, written in my chart. Plural.
There were other ologists: neuro (who insisted I had carpal tunnel and ignored my headaches), gyno (who told me I probably had a cyst and rushed out the door to deliver a baby), and uro (who laid me down on a metal grounding plate and cauterized the inside of my bladder without anesthesia). But the most important ologist for a person with autoimmune problems is the rheumatologist. They are supposed to be the hub of your autoimmune wheel, the doctor who takes over your care, who has spent a lifetime training and learning and trial-ing and error-ing.
I waited for six months to see my new ologist. When I arrived at his office, I had to wait for two hours. He came into the exam room, he reviewed my digital file in silence, and he produced a lab order for bloodwork.
He said, “Seems like Sjogren’s and fibromyalgia. We’ll see what the blood tests say. Come back in six months.” And then he was gone.
There’s a moment when I’m referred to a specialist, to an ologist, in which I’m flooded with hope. I hear my family doctor say, I don’t know how to help you, but here’s someone who can. Here’s someone with an answer for you, who’s spent his or her medical career devoted to people just like you.
But my ologist isn’t devoted to people like me at all. He’s devoted to diseases like mine. He’s devoted to the Latin words in my chart. I just happen to be the living host, the box that contains the puzzle in pieces. I’m far more interesting in my disassembled state.
Find the corner pieces first. Lay them out. Then search for the side pieces. Lay out your framework. Drink tea. Go for a walk. Come back to the puzzle in the future. Take all the time in the world because working a puzzle is a lazy affair, an exercise for a rainy Saturday afternoon when the world moves slowly and life’s urgencies have evaporated.
One piece every six months.
If he ever put the puzzle together, would it be me? Or would it be a Vitruvian Man, his muscles and joints glowing green to indicate a successful treatment of symptoms? Would it be a list of the pills he prescribed me? Would it be a featureless body and a littany of complaints checked off one by one, now addressed and nullified? Neck pain: Tramadol. Stomach issues: Prilosec. Insomnia: Ambien.
Patient’s quality of life: Perfectly acceptable.
Writers consider their words carefully. Endlessly. To the point of madness. When we write, we think. When we revise, we obsess. We delete and replace and delete again. The words must be exact. They must flow. They must be premeditated and thoughtful and absolutely perfect.
That’s writing. When I speak, however, the process isn’t quite so deliberate. Sometimes the things that pop out of my mouth in conversation are really asinine. Like when I plan to respond with either “neat” or “cool” but end up busting out a hearty, “Nool!” Or when a relative stranger asks where my kids are and I reply that they’re duct taped in a closet at home. Not everyone appreciates that sort of comment, I’ve discovered. But just as often, the things that pop out of my mouth are a surprise to me because they’re not just Laura-chatter; they’re statements that reflect my true feelings.
Twice this week I’ve heard myself telling someone that I’d rather be in the woods than around people. The first time, I was sitting with a friend who was asking me if I would be attending a social event this weekend. I grumbled a bit, said yes, and then quipped, “I never go to social events. I’d rather be in the woods.”
Two days later, I had a similar conversation with a different friend. “I don’t like to come out of the woods,” I said, in reference to socializing. “I prefer trees to people.”
On a side note, this week I finally earned my Kooky Hermit Badge from the Girl Scouts of America. It’s one of the hardest badges to earn because it requires an intense effort to be both antisocial and muddy at all times. Nailed it!
It’s true. I’d rather be in the woods than celebrating or drinking or visiting or eating. Now, it’s also true that when I eat lunch with friends, I enjoy it very much. And I suppose I would rather go to Punta Cana with my husband than a tulip poplar. (Well, actually that really depends on if he’s going to do that thing where he packs three minutes before we leave for the airport and then forgets pants. I wrote about it once.)
But generally, I stand by my statements. I do prefer the trees, the mountains. And it’s not that I don’t love and care for the friends I see at a formal social event. It’s just too overwhelming, too overstimulating, and there are never any squirrels or moss or caterpillars in attendance. (Have you ever talked to moss? It is so polite. Never interrupts.) I have to wear high heels rather than hiking shoes and carry a purse rather than a fishing pole or walking stick. I have to check my quippiness at the door, and I can’t utter things like, “Hey, this looks like coyote poop,” or “I’m going to go take a leak in that ravine.” That’s what I’d say out in nature. At a formal event, it sounds a little suspect.
Of course, I always survive encounters of the social variety, and it’s never as stuffy as I imagine it will be, especially if I confine my bladder evacuations to the ladies’ room. Still, I’ll take any chance to disappear into the forest.
Yesterday, I had to take our new car back to the dealership in Morgantown for a repair. The prospect of a day in the repair shop infuriated me until I remembered Mo-town’s proximity to Coopers Rock State Park. I got downright giddy at the thought of sneaking up to the mountains in a rental car, and I did just that. Although the main road to the famous overlook was closed for the winter, I found a separate trail that led down into the canyon along a mountain stream through an eastern hardwood forest, past patches of hemlock and enormous boulders dripping with moss and icicles. I was the only person on the trail – the only person in the woods, even – and it was fricking glorious. And yes, I did pee in a ravine.
I found myself so full of joy, grinning like an idiot. The forest is where I go when I’m in need of spiritual comfort. That’s where I connect with spirit, where I find the divine. It’s the only place I connect with the divine, in fact. But on a more basic level, I’m just a happy nut in those mountains. I didn’t even say much to myself as I hiked, except when I approached boulders that looked like they might house a bear and her cubs, and then I made sure to recite loud, dirty limericks and have heated political discussions with Pete, my walking stick. You don’t want to surprise a bear (and it’s also important to remember that tragic man from Nantucket).
My emotions ran so purely joyful for those three hours that I conducted an experiment. Out loud, I said things to myself that normally embed in my brain and make me miserable. I said, “You’re a hack,” and, “Nobody is ever going to publish that book.” I said, “Your writerly income is pitiful, chicken arms.”
Nada. Nothing. Didn’t bother me in the slightest. The insults bounced right off. At home, I’d have felt awful hearing those things. Out there, I laughed at my chicken arms. Not a drop of negativity could penetrate. That’s the power of nature, of the forest.
And let’s be honest: as a species, trees are way better than people. Aside from their intrinsic usefulness and value to the environment, trees are just plain decent folk. Has a red spruce ever criticized your parenting skills? Has a quaking aspen ever raised an eyebrow and asked why you weren’t in church on Sunday? Has a sugar maple ever called you a slut?
Has the forest ever done anything other than listen patiently to your troubles, block the view of your drunken neighbor in his underwear, provide branches to burn on a campfire and a lovely whistling sound on a windy day? Okay, maybe that one sycamore branch that fell on your tool shed was a bit of a douchebag. But I’m telling you, trees are better than people. I’d rather be with the trees. A tree is the ultimate introvert. Even in a group, they stand sort of awkwardly, straight up, exactly like me at a party before I have a cocktail. Sometimes, like me after a cocktail, they swing their arms a little too wide and whack somebody in the face.
(The palm tree’s an extrovert, though. Look how it stands all saucy and angled, leaning to the left or to the right, they way women pose sometimes. Hi, I’m a palm tree! Check out my coconuts! I’m just going to grow here at an angle with my besties in a cluster and wave my fronds all around and make clacking noises.)
Yesterday, I eventually had to come out of the woods. After a solid, 6-mile solo hike, I was damn tired. (See What’s Wrong With You?–Part One, a tale of fatigue.) But I felt fortified against the world for another day or two. I hate coming down out of the mountains into a world of shopping plazas and office parks. Thankfully, the high lasts for a while, long enough to remind me that the world of humans isn’t always as bad as I imagine.
And I’m going to try to work on the blurting thing.
This is Part One in a series of honest blogs about my journey into autoimmune disease and my fight against it.
I haven’t done a whole lot of blogging since the end of 2016. It’s not that life has been dull; quite the opposite, actually. I’ve just been too tired to blog.
Tired. Now there’s a loaded word in our culture. We use it a lot, especially when we exchange pleasantries when we bump into each other or on Facebook.
“How are you?”
“Fine. Just tired.”
“Worn out, today.”
“Man, I’m tired.”
We’re all tired. It’s sort of the American mantra. We pride ourselves on our exhaustion because it illustrates how damn hard we work, and if there’s one thing Americans love, it’s hard work to the point of exhaustion. I don’t know why. I’m guilty of it, too. I love opening my planner and seeing the entire week covered in ink, scribbles in every corner. Sometimes I’ll actually make checklists of things I’ve already done just so I can have the satisfaction of checking them off. Write possum story? Check! Clean up dog vomit? Check! Got the mail? Check–I got the hell out of that mail, today.
Accomplishments make me feel valuable. But I don’t feel valuable these days.
Until now, I’ve only put snippets of this part of my life on the blog. A mention of autoimmune here, a quick joke about OCD there. I brush it off so you will brush it off, so you won’t think there’s something wrong with me on the inside. Because it’s embarrassing to be sick. Because it’s shameful to be resting. Because when you see me at Kroger, I look just fine, and how can anything serious be wrong if I look fine? (“Fine” is, of course, a relative term–sometimes I go without makeup and you go home and tell your family you had a Kraken encounter.) And because when I tell people I don’t feel so well, they inevitably ask me, “Well, don’t you take supplements?”
“Do you take probiotics? You should really be taking one a day.”
“Don’t you go to the gym? It helps your immune system.”
“You really should do yoga. Lift weights? Walk more?”
“What’s your diet like? I always feel sick when I eat crap.”
And even though I actually have been doing all of these things, eventually, the questions begin to morph into statements that contain just a hint of judgment:
“Boy, you sure get sick a lot.”
“They must have a room reserved for you at Med Express. Hah!”
“You know, too many antibiotics aren’t good for you.”
“When I get a cold I just power through it.”
“At least you don’t have cancer.” And this one is particularly awful because I tell myself the same thing whenever I feel like crap: Hey idiot, you don’t have cancer. You’re not dying–you’re just tired.
How do you respond to those statements when you know that, on the inside, something is genuinely wrong? I knew I was getting sick a lot. I knew I was too tired. And no matter how I fought back, nothing changed. What happens when you do everything right and still feel sick? What do you do when you literally cannot summon the energy to change a light bulb, as I could not last weekend?
After a while, you start to get paranoid. After a while, you wonder if they think that you enjoy being sick, secretly. (Illness is no picnic around here: Shawn maintains a strict schedule of soup, tea, hot baths, and Vicks rubdowns for the unwell, and no, you may not decline.)
For years I’d had general body aches and mild to moderate fatigue. Enough that I felt like a real slacker compared to Shawn, a man born with more than enough energy to power him through life and parenthood. Several years ago, I started having neck and shoulder pain. Huge trigger points formed in my neck–I wrote about it here. My wonderful massage therapist worked them out, but they came right back. My chiropractor moved my spine. The pain refused to abate. Eventually, my GP gave me a fibromyalgia diagnosis, a pain disorder characterized by sensitive nerves and fatigue.
Additionally, I had the weakest immune system imaginable. I caught every cold my kids brought home, and it invariably turned into bronchitis. One year I had to take six courses of antibiotics.
The problems began to compound in graduate school when I found myself under intense stress. True to the American spirit, I couldn’t simply get through academia; I had to beat it into submission. I worked harder and longer and more intensely than I’ve ever done, for anything. I mean, I don’t even work that hard at being a mom (as evidenced by Benjamin’s report card, which says he gets so wound up in class that he destroys his projects before he finishes them.) And while I did well in my MFA program, halfway through I was diagnosed with Sjogren’s Syndrome, an autoimmune disease characterized by dry eyes, dry mouth, digestive problems, fatigue (yes, more!), and widespread pain.
Autoimmune issues are believed to be born of stressful events. In the last ten years of my life, I gave birth to two children, lost several dear friendships, was diagnosed with obsessive-compulsive disorder, and got a master’s degree. It was in the cards, I guess. The doctors told me that once an autoimmune disorder is diagnosed, it never goes away, and they tend to multiply as time goes on. Hashimoto’s, Scleroderma, Lupus, Rheumatoid Arthritis, Sjogrens, Multiple Sclerosis. You can only manage the symptoms. They said it will get worse, over time, and it’s not unheard of for a patient to die.
Well, they didn’t tell me that part, but research filled in the blanks. Dammit, WebMD. I just can’t quit you.
I think it’s time for people like me to
stop being quiet about what’s going on. Fear of being labeled a complaining wimp, fear of being pitied, fear of being judged have all kept me from really talking to people about what has been happening inside my body. No, I don’t want to run into you at CVS and answer, “Crappy,” when you ask how I am. I want to say, “Fine.” (Actually, I want to say, “I’ve just won a Pulitzer,” and smugly buy my Sensodyne.) But when I say I’m fine over and over and over, am I really adding anything good to my world? When I deny that there is something wrong with me, something that I believe affects far more people than we realize, am I missing an important opportunity to speak up and speak out? Am I treating myself like the wimp I’m afraid you’ll think that I am?
My silence buys me a pass to continue to feel sick rather than seeking a scientific answer. The more I say, aloud, “I am sick, I am in pain, I am not well,” the more real it becomes. When it’s real, I can no longer ignore it. When I can no longer ignore it, I have to act. Because this autoimmune problem, this deflated life, will kill me if I don’t. Besides, if I’m going to call myself a writer, don’t I need to use these words to add something to the world? You know, something other than stories about Ben and his hatchet collection.
But it’s hard to ask other people to give a hoot about me. We have a lot to focus on in this country, right now. I’m one tiny person who is, at least, still managing to get through her day. Why am I deserving of the time it takes to read a blog about a sore neck? This is why people keep quiet about their personal struggles, of any kind.
I wrote this blog a week ago but have not yet found the courage to click the publish button. I don’t know when I’ll publish it because I’m not quite sure I’m ready to talk about this. I’m not sure my words matter in the grand scheme of things and I’m not quite sure you won’t roll your eyes when you read this.
I went to a naturopathic doctor recently–not a hippie dippie crystal dealer, but an M.D. and a D.O. who have treated patients like me in their clinic, who have science on their side and a plan for me in mind. It’s another attempt at healing, and I am both hopeful that it will work and protectively skeptical that it will not.
I’ve been reading Sonya Huber’s Pain Woman Takes Your Keys and Other Essays from a Nervous System. She writes far more beautifully about chronic pain and autoimmune disease than I ever could, but she has also inspired me to do the same. I want to write about my journey, a chronicle of sickness and the quest for health. And then I get afraid and close the laptop for another day because I don’t want my headstone to read HERE LIES LAURA: she was sick and tired and forced everybody to read about it.
If you promise to be understanding, I promise to be honest. And funny.
I know that I told you back on the Blogger blog that there would be cookies here. That was a lie.
That’s right – I lied to you right off the bat. How can you trust a single thing I say on this new website, in this foreign land of WordPress? I guess you can’t. I guess you’ll have to go in search of truth elsewhere.
What you’ll continue to find here is my erratic blogging, updates on things I’m doing and writing, references to animals, neuroses, general aches and pains, bad kids, good kids, litterbox thieves, overweight squirrels, and my ever-elusive efforts to complete my almost-finished manuscript.
Oh, and there actually are cookies. But I don’t think you can have any.
I was awake to see the torrential downpour that flooded the National Road on Saturday night. At 1:30 AM I pulled back the curtains beside my bed to watch sheets of rain coming down and ponding on the road. I watched for a long time, listened, and counted the seconds as the traffic light down the road changed from red to green to yellow to red.
I do that a lot, in all kinds of weather. I watched the ice storm the night before. Sometimes I watch our local deer herd pick or race their way across the four-lane road and filter down into the neighborhood via my yard. If it happens between one and four-thirty AM, I’ve seen it, heard it, felt it, or smelt it. (That includes dog farts. They happen more than you think when the dog is asleep, which begs questions about our own fortunate obliviousness.)
My name is Laura and I am an insomniac.
There are two kinds of insomniacs: those who cannot fall asleep and those who cannot stay asleep. I fall into the latter category. My ability to fall asleep is almost super-human; most nights it takes less than a minute. It’s as though I’m a light switch: either on or off. Ben and my father are like that too; we all fall asleep instantly and wake up in the same manner. Shawn and Andy, however, are like irons (the kind I never use because my family doesn’t give a shit about going to school or work looking like they just fell out of the overhead bin on an Airbus A318). They take a while to wind up and a while to unwind. Shawn’s falling-asleep routine takes over an hour. He’s got to shower and get into bed. He reads on his phone and reads his Kindle. He rolls around and thinks Shawnly thoughts. He pets the dog. He pets the cat. And by 12:30 a.m., he’s finally asleep. (Years ago I banished Shawn to another bed because he snores and kicks, so this routine doesn’t affect me at all.)
I consider myself the more fortunate of the two of us. That is, until 2 AM rolls around.
So why is it that I cannot stay asleep? This bizarre pattern began three or four years ago, and I blame my bladder. Everything was going to well until it decided that it could no longer do its job for a full night. I strongly suspect that it’s protesting the fact that I incubated two life forms in its personal space. Bladders are sensitive creatures. They get huffy, and once they’re mad, it seems they stay mad for the rest of our lives: Oh, you’re planning a road trip? How cute. Better allow an extra hour for all of the stops you’ll be making. Caught in a stand-still on the interstate? Hope you have tinted windows and a wide-mouthed water bottle. Oh, do you have to sneeze? Good luck with that because I’m gonna let loose like a pack of kindergarteners at a Christmas cookie party.
So when the little jerk wakes me up to pee, I’m up. That’s it. I can’t fall back to sleep. I pee and then I go back to bed and listen to the dog snore (or fart) and watch whatever varmints are prowling around outside and sometimes eat a
box of cookies handful of carrots and eventually succumb to the blinding light of my phone and the deplorable torrent of social media. It’s proven that the bright screens of our handheld technology keep our brains awake rather than putting them to sleep. In fact, scientists who study insomnia recommend vacating the bedroom entirely when sleeplessness hits. Get up, they say. Leave the scene. The worst thing to do is to lie there and roll around for hours and stare at the clock.
Are you people serious? Show me one person in the entire world who follows this advice. Find me a person who actually gets out of bed and goes downstairs and polishes the silver or scrubs the algae off the side of the fish tank. (Reminder to self: scrub the algae off the side of the fish tank. You don’t even know what’s in there these days.) None of us go any farther than the fridge, and then we take whatever we’ve snatched back to bed and fill our sheets with crumbs and then roll around in the crumbs and look at besweatered basset hounds on YouTube.
My doctor doesn’t know if my insomnia is due to anxiety or my autoimmune issues or just general bad luck, but he prescribed me Ambien.
Don’t flood me with Ambien warnings. Yes, I’ve tried melatonin and it affects me adversely. Yes, I’ve tried chamomile tea–did you read the part about the peeing? How do you people drink a cup of liquid before bed? My kidneys and bladder get together after dinner every night and triple-dog dare me to put the kettle on the stove. Just one cup. It’s only Sleepytime. Everybody’s doing it. You’ll feel great.
So when I really can’t sleep and I really need to sleep, I bite an Ambien in half at 2 AM and swaller that sucker down. Usually it takes about 20 to 30 minutes to fall asleep, but it works. I don’t take them often, but once a week or so, I’m really glad to have that Rx bottle there.
There is, of course, a down side to Ambien. Perhaps you’ve read about people who do things when they take Ambien? In 2006, Rhode Island Rep. Patrick Kennedy crashed his car near Capitol Hill. He had taken Ambien.
Why the hell would you take Ambien and then get into your car, you ask. But the news reports answer back that many motorists have no memory of getting behind the wheel to begin with, that the Ambien made them do it. These people are called “Ambien Zombies” and use the “Ambien Defense” in court, often successfully. In 2009 a flight attendant from Texas took Ambien and woke up in jail, having run over three people. She was sentenced to only 6 months. Other people have figured out that if they can stay awake, the drug gives them a freaky high, complete with flashing lights and moving walls.
Okay, maybe you should be flooding me with Ambien warnings. Fortunately, these side effects and these incidents are extremely rare. But there is one thing I have been known to do on Ambien: I shop online.
In those brief moments before the drug has completely taken hold of me, when I’m irresistibly drowsy but for some reason fighting to stay awake, I get on Amazon. And damn you, Amazon, for storing my credit card information and providing users with that super-convenient Buy It With One Click button. You suck almost as much as my bladder. And at least my bladder only ruins interstate travel. You cost me hard-earned money.
There is, however, an upside. You know that feeling when you come home and there’s a package waiting on your porch? It’s like Christmas. It’s out there, it’s waiting to be brought in and opened, and it’s even more exciting when you have no fucking idea what’s in it. What the crap is that box doing there, you ask yourself. I don’t remember ordering anything. And then you wonder who might have sent you a little surprise. Your mom? Your best friend? Your spouse?
I have no answer to my insomnia problem. Indeed, I don’t even know the cause. I do know that I read some really fantastic articles in the night. I get ideas for essays, I find knitting projects I want to attempt and pasta dishes to try. And I bookmark all of them. And then I forget about them entirely when I wake up quite naturally on my own at 5:30 a.m., no matter how rough the night has been (yet another sign of a sleep issue).
Perhaps I need a sleep study. Perhaps I need a long-term solution that doesn’t depend on pharmaceuticals and
cookies carrots. But my insomnia problem evaporates from the forefront of my mind during the day. I forget all about it until 2AM rolls around again and I remember that, dammit, I should have called somebody or done some research or at the very least purchased a chamber pot. Insomnia is a chronic problem for an estimated 10% of adults, and far more have bouts of sleeplessness. $63 billion is lost in work performance every year due to insomnia. America is losing its health, its productivity, and its sanity to an inability to rest. I’m not quite sure when I’m going to get some.
On the other hand, those three 12-inch nonstick skillets I ordered in the wee hours of Cyber Monday 2014 cook a hell of an omelet.