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What’s Wrong with You? – Part One

This is Part One in a series of honest blogs about my journey into autoimmune disease and my fight against it.

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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.

Six.

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.

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Andy’s Update

The summer got away from me before I could continue the blog, shamefully. After our trip to the mountains of West Virginia, we had a birthday for Andy, and I left for Summer Community of Writers at Chatham University in Pittsburgh to finish my MFA. When I came home, Shawn left for Boston for a week and we reconvened in Fort Myers Beach for ten days of vacation. I’d started to forget what my bed felt like. As with all summers, this one went quickly. I look forward to writing about it.
But for now, I find myself reflecting on the changes our family underwent this summer, changes I have not yet written about. It’s difficult to find the appropriate manner in which to write about your kids, isn’t it? I published an essay about Benjamin, and in it, I shared with the world both his propensity for calamity and, more importantly, my shortcomings as a mother. They are many, and in “Calamity Ben,” I tried to connect with readers about my struggles. Humor writers derive pleasure from their own failures, in a way, because they see each disastrous escapade as fodder for another piece, and thus another way to reach out into the world. I think that’s why I write about my failures, anyway. It’s how I want to touch the world. My children have been the dominant force in my life for the last ten years; thus, they are a fount of inspiration. 
But now, I find that Andy is more than capable of telling his own stories. More importantly, he has a say in whether I may tell them. Often, when I take his photo, he says with trepidation, “You’re not going to put that on Facebook, are you?” I don’t know if he’s yet reached the stage where he’s embarrassed by me, but he’s certainly aware that, as the child of a writer, he’s on a stage of sorts. While things like Calamity Ben-fires and -knives still feel like fair game to me, the adventures and struggles of an older child are no longer mine to share. A great deal has been written lately about parents who share their children’s lives on social media. And while I have yet to decide precisely where the line is (and have done my share of sharing), I do agree that when a child is old enough to object to the idea of his presence on Facebook, he has every right not to be there.
That said, I’ve spoken with Andy about telling his story, here. He gave me his permission and told me it was about time.
In June, we learned that Andy has Tourette Syndrome. 
Andy’s first tic appeared when he was four, I think. Like most kids, it began with a blink. I did the prudent thing and had his eyesight checked, and the doctor told me it was indeed a tic, a very common occurrence for a little kid. Many children will have a tic in their lifetime. But Andy’s tics didn’t disappear as he grew. Though the blinking came and went, at age 7—first grade—we began to notice other tics. Head jerks, often, and there was a grimace. Each time I mentioned it to his teachers they told me they’d never noticed the tics, and this relieved me a great deal. Nevertheless, I was aware of Tourette Syndrome and, being the anxiety-prone crackpot that I am, began to worry about it more than I should have. 

Tics cannot be controlled. It’s difficult to understand, but it’s been likened to the need to blink. It’s an undeniable urge, and though patients can suppress them for short periods, they must come out eventually.

There are multiple tic disorders. The difference between Tourette and Transient Tic Disorder (TTD) is a matter of small degrees. Transient Tic is categorized by one or more tics that have been continuously present for longer than 4 weeks but less than a year. Often, the pediatrician referred to Andy’s tics as TTD. He told me in a frank and calm manner that even if Andy did have Tourette Syndrome, there were far worse conditions with which to be faced. And while that might have come across as patronizing from another mouth, another person, when I heard him say it, I felt relief. I am grateful for our pediatrician for so many reasons, not the least of which is his ability to properly categorize the seriousness of a child’s condition when faced with an adverse parental reaction. (Translation: He calms batshit crazy moms down.)
The tics continued to increase through 2nd and 3rd grade, though, and I admit my anxiety ran away with me. In my heart, I knew we’d moved beyond the textbook definition of Transient Tic Disorder, and that we were only one vocal tic away from a Tourette diagnosis. Looking back, I want to laugh at myself a bit. I spent a disproportionate amount of time worrying about something far beyond my control. I worried about Andy, and his feelings, and his education, but, if I’m to be honest, I worried the most for myself. How was this going to affect me? How hard was this going to be for me? How was I going to handle it? How was I going to get Andy through it?
What an arrogant ass, right?
Well, yeah, sort of. I spent a few months beating myself up for those feelings. And then, in May, when the first vocal tic appeared (a loud voice that sounded much like Fozzie Bear), my anxieties became realities. It was Tourette Syndrome, the doctor confirmed. And suddenly, all those hours of worry and dread no longer mattered, because the here and now had arrived, and nothing I’d obsessed about had any bearing on the next step. Whether or not I was tightly wound from three years of fearing what if, I still had to make one decision at a time.
I need to be honest about the preceding statement, though. That “one step at a time” stuff came from Shawn and my father: my two, rational rocks. I’m not a “one step at a time” gal. I’m the kind of person who sees a gray cloud and goes down into the basement to restock canned beans in the tornado shelter. I’m twelve steps ahead, well on my way to apocalyptic apoplexy, when really, all I need to do is make one small decision: What’s the very next thing I have to do?
I never remember to think that way, though.
The next thing we did was to start Andy on a low dose of a medicine that may or may not help him. He does not take medicine for his ADHD, and we—Andy included—don’t like the idea of meds that aren’t necessary. Often, such meds have side effects far more unpleasant than any tic. What he’s taking now is a tiny dose of a simple drug that has the potential to calm physical symptoms, but the jury is still out on its efficacy. The thing about Tourette Syndrome is that it will likely worsen during his adolescence, peaking sometime in his teenage years. Often the tics wane as the child enters adulthood; sometimes they do not. Andy will always have Tourette Syndrome, but it’s unknown how it will affect him, and how it will change over time.
And of course, I must address the elephant in the room: the cursing. Coprolalia, as it is called, is rare, affecting only 10% of Tourette Syndromers. It’s the pop culture signifier of the disease. It’s funny to some and it’s a comedic favorite—Tourette’s Guy, I think he’s called. The symptom pops up in movies and television sketches. Mention Tourette and that’s what comes to mind. But the vast majority of Tourette patients will never utter a curse word unless they stub their toe. Alternately, some will repeat words they’ve heard (echolalia) or words they themselves have just said (palilalia). There’s no way to know what tics will manifest in a patient. There’s no way for me to know if Andy will ever have to suffer in that rare 10%. Truth: I spend an inordinate amount of time worrying about coprolalia. I have yet to tell him about it; he doesn’t know that there’s a cursing element to Tourette. I can’t bring myself to share it with him, lest the very act of speaking the words strike the tic up within him.
It’s a silly fear, I know. I have to take medicine too.  
On the first day of school, Andy asked me to come into his classroom and explain Tourette Syndrome to his friends. He’s been with his classmates since he was a wee man of four. He’s not the only kid with tics, and I’ve noticed that they aren’t particularly aware of each other’s tics anyway. When I ask him about other kids’ tics, he just shrugs, as do they. The wonder of young children is their ability to accept whatever is presented to them as normal. 
When exactly do we outgrow that? When do we start to perceive each other’s eccentricities and categorize them as flaws? How long before some mean-spirited jerk makes fun of my son?
It was permissible to worry about both Andy and myself. It was human. I’ve let myself off the hook, and in so doing, I’ve realized that Andy is far more capable of handling this obstacle than I ever could be. He thanked me for talking to his class. I worried all day that I’d said something that might embarrass him (What, me? Worry?) but he gave me a tight hug and said I’d done a great thing. His classmates were both accepting and non-nonplussed. They already knew Andy had motor tics and barely paid the movements any mind. Now, it is Andy’s and my hope that they will understand any vocal tics that might manifest. 
Andy’s Tourette Syndrome hasn’t changed life as I feared it would. I make that statement with the caveat that we are lucky: many Tourette patients have behavioral difficulties, but Andy is the same sweet, loving kid he has always been. I try not to worry too much about those what-ifs; life is teaching me far more lessons right now than it is Andy. He is in a loving environment at school, blessed with teachers who will work with him in whatever capacity he requires, no matter how that capacity changes from week to week. We are slated to visit UPMC Children’s Movement Disorder Clinic in November and have been taking him for cranio-sacral work that has minimized his vocal tics for up to a week after treatment.
It’s hard for me, as a parent, to accept that something about my child’s body doesn’t function properly. This seems silly, on paper, doesn’t it? Nobody’s body works perfectly. Look at me: an autoimmune mess. My husband has ADHD and crackly ankles. My dad’s feet turn out too far. And yet, no mother pictures her unborn child with an imperfection. No mother anticipates complications. The challenges come as a surprise to us. 
I do not believe that all challenges have hidden blessings. There is not a good, divine reason for every crappy thing we endure. Sometimes, shit just happens. That said, Andy’s diagnosis has brought me closer to him in a way I’d been seeking for some years. It forced me to strip away everything but the present moment, what I have to do right now, for Andy, today. No, I haven’t stopped worrying or obsessing—that’s part of my own syndrome. But I do see the lack of value in worry, and this helps me to push past it as best I can. If my child must endure tics both annoying, humiliating, and sometimes painful, at least I am now better equipped to support him in our newfound closeness.
I don’t write about Andy’s Tourette Syndrome so that he can receive a pass or sympathy. I write about it because this is our family challenge, for now, and he seems unphased by it. No, he doesn’t like his tics—he despises them. “I would give anything to get rid of these tics,” he told me. But still, he’s unapologetically Andy. The notion that Tourette Syndrome could hinder him even a fraction has never entered his mind. 
I hope that it never does.