There are a couple of jokes I tell about Irritable Bowel Syndrome:
“Solid, liquid, or gas?” is both a third-grade science lesson and IBS.
IBS is like a box of chocolates; you never know what you’re going to get.
I joke, but it’s serious.
I’m not really sure when my illness first developed. Maybe I’ve had it my whole life; if so, it’s got worse as I’ve got older. In my twenties, I blamed it on the medications I’d just begun, known side effects and all that. This one time, I’d gone straight from the shower to my off-white sofa for a nap, sans everything. Just as I was about to nod off, the rumble below that hadn’t been there a minute before decided just then to explode, with no time to run to the bathroom, and no realization I needed to run since I thought it was just gas. Quick as anything, I was on the phone with my mom, panicked and embarrassed, asking how I’d get a, um, certain kind of stain out of my upholstery.
My prescription regimen has changed several times since the incontinent incident on the couch, and the medication most suspect at the time has long since fallen out of my repertoire. But my bowels still rage against me, more and more every year. Resounding gurgles and grumbles in the quiet of a library or as I’m teaching class. Passed gas pretty much anywhere and everywhere with no way to control it. I plan my walking routes so that I have easy access to public restrooms, facilities which grow scarcer every year as architects and city planners, business owners and cops conspire to screw homeless folks out of fulfilling their biological necessities. When my condition is at its worst, I’m stuck at home for the day, running to the bathroom every ten, twenty minutes—no good if you have a half-hour walk to work and there are almost no businesses in between, which is the case at present. I’m just glad I don’t have to mortify myself further by explaining to the boss exactly which kind of sick I am.
Earlier this year, my doctor asked me to eat Greek yogurt every day to get more probiotics into my gut—one of my favorite foods, so no complaints here. Many days the yogurt cultures successfully regulate my digestive system, but sometimes my condition is so bad that the only thing I can do is ensure I have ready access to a toilet.
I know I could have it so much worse. I know folks with colostomies, folks with more food allergies than fingers. For me, IBS is most often a mere inconvenience, an embarrassment. Rarely does it incapacitate me. And if it were my only issue, I could totally live with it.
My doctor felt my jaw as she said, “Open… close… open… close.”
“It looks like you have TMJ.”
“C’mon, you don’t have to use baby-talk and buzzwords with me. What’s it called really?”
“You mean there’s a medical condition called Tight Muscled Jaw?”
“That’s… not what it stands for. Temporomandibular joint. Really, it should be TMJ disorder, but it gets shortened.”
“Wow, never knew. Thanks for correcting me.”
Like my IBS, it’s usually not an interference with day-to-day functioning. And also like my IBS, the TMJ issues didn’t crop up until my twenties. At first, I assumed my tetanus shot of years before had somehow failed me. Nope, just stress, complicated by a slight misalignment on the right side that produces a noticeable click when I open up.
My TMJ doesn’t flare up as often as it used to, but when it’s at its worst, I get some inkling of life with lockjaw. I talk through clenched teeth, sip broth because I can’t chew, sometimes try to slip in an aspirin to bring down the swelling. I know of no other treatment, but also, I haven’t been sufficiently incapacitated to look one up.
I spent the summer of 2015 in Fairbanks, Alaska. I spent the summer of 2015 in bed. For me, those two statements are inextricably one and the same.
The fatigue first hit right at the end of April, just as I was wrapping up my second semester of graduate school, and just as I needed to look for summer employment. I was going to bed earlier, waking up later, and guzzling coffee to get through the day. Nothing going wrong there, I thought; finishing my term papers and tying up the loose ends of the course I was teaching were bound to wear me out, and coffee is considered statewide as the single most essential survival tool for Alaska’s extremes of daylight. For the record, Fairbanks gets nearly four months of daylight in the summer, but not four months of darkness in winter. In fact, we get nearly five hours of daylight on the shortest day of the year. Hard to explain how this works, but this isn’t an astronomy textbook so I’m not going to bother here.
Anyway, I thought nothing of my feeling out of sorts. At first. May went by, with days when I didn’t bother to leave my bed, tapping away at my laptop as I continued strategizing my summer. By mid-June, my strategy was in as much disarray as my apartment, my energy sapped from me so that I could make progress in neither income nor household. We now had daylight all day and all night. Every time I looked out the window, the light remained unchanged. Monotonous. Depressing. There was nothing I hated more than the sun, its utter sameness, washing out the surrounding forest like an old, sad, overexposed photograph. By mid-July, my meager savings had run out, and I was stuck begging money from friends and running to the food bank for canned soup.
Finally, in August, I roused myself from a full week in bed—no shave, no shower, no underwear once I ran out of clean briefs—and made a long-overdue appointment with my therapist. I practically rolled myself down the hill from graduate housing to the student clinic, but once there, it took only ten minutes of conversation for my therapist to deduce the issue at hand.
By now, you probably know about SAD—the aptly acronymed Seasonal Affective Disorder. Basically, the brains of people who have SAD react adversely to the cold and minimal daylight of winter, leading to fatigue, malaise, and depression. Meet SAD’s backwards cousin, RSAD, or Reverse Seasonal Affective Disorder. It’s one-tenth as common, so it’s less likely you’ve heard of it. For some sufferers, RSAD symptoms resemble those of mania; for me, it looks just like SAD except in summer instead of winter, heat and light my dreaded enemies.
The diagnosis made perfect sense. Ever since I was a kid, I hated pretty much everything from April to October. Halloween is like my Christmas because finally things start feeling right. Last year, when I was diagnosed, there wasn’t much for me to do, as, soon enough, short, cool days would return and my body and brain would return to normal.
This year is different. I’m cognizant, not only that my mood and energy will change, but that I must compensate for my symptoms by setting a strict schedule, ensuring I enjoy adequate social time (unmediated by my laptop), and honoring my body when my energy is too low.
Oh, and I got the hell out of Fairbanks for the summer.
I opened my eyes to a clinician staring down at me. “You need to get up now, Mr. Strong,” she said.
“I just need to go back to sleep a little longer,” I mumbled.
“You’ve been awake at least fifteen minutes, and we’re required to end the study now.”
“What? I’ve only been awake maybe five minutes.”
“You’ve been awake twenty, actually.”
“Wait, what time is it?”
“Damn, I swore it was, like, seven.”
“You were asleep for almost ten hours.”
“Whoa. Is that bad?”
“It’s the high side of normal, but it is normal.”
A couple of weeks later, the sleep-study results showed no problems, despite the sleep journal I was required to submit beforehand that documented clearly erratic patterns. The study was a bust, and it was back to the drawing board. Or, more precisely, the internet.
All my life I had issues with sleep, tossing and turning for two or three hours each night, waking only to find myself so exhausted I was lucky to get out of bed at all. Oversleeping was the norm; one time, I woke up at 3:00 p.m. when I had to be at work at 8:00 a.m. Yeah, I didn’t get to keep that job for long. For years I found myself yelling and screaming at doctors (not literally, but it felt like it), me insisting that there had to be something deeply wrong with my sleep and them insisting that I simply needed to eliminate caffeine (done, until I got to Alaska) or to maintain a more regular bedtime (which did no good.)
Despite the inconclusive sleep study, I knew something wasn’t right and that there had to be a solution. So I started googling my symptoms. They tell you not to do that, but what else can you do when medical science has failed you? I came up with a short list of possible suspects. Then I had a long talk with my psychiatrist, who by complete coincidence was one of the world’s leading experts on sleep disorders. And together we zeroed in on the answer: Delayed Sleep Phase Syndrome, or DSPS.
This disorder wouldn’t have shown up in the feedback from all the wires hooked up to my cranium because I don’t actually have a sleep disorder. Except for my frequent nightmares, I sleep normally. Rather, I have a circadian-rhythm disorder. DSPS means my brain wants to run a twenty-five hour day, rather than twenty-four. So, with no constraints on my life, my instinct is to wake one hour later and go to sleep one hour later every day, changing me from day-person to night-person back to day-person over a period of three to four weeks. But, of course, I have constraints on my life—work, school, socializing—and maintaining my natural cycle is incompatible with 21st-century living. The same with getting six to seven hours of sleep a night, per the usual recommendation, since I’m left with woefully insufficient sleep, leading to excessive caffeine consumption, oversleeping, and fatigue.
The bad news about DSPS is that it’s notoriously difficult to diagnose since it’s so rare. For a long time, doctors attributed my wonky sleep patterns to bipolar disorder (a diagnosis abandoned several years ago.) The good news is that it’s relatively simple to treat: a consistent bedtime, a nightly dose of melatonin (an over-the-counter supplement), and a half-hour of light therapy each morning. I actually gave up the light box after a loose wire converted it into a strobe light, and besides, my RSAD actually helps my DSPS since I’m better adapted to winter light anyway.
It sucks that I don’t get to socialize as much because I must do whatever I can to be in bed by 10:00 p.m., about an hour before my grad-school colleagues begin their hanging-out time. It sucks that I start winding down around 7:00 p.m., meaning I wouldn’t have much energy to hang out with my friends even if they got together earlier. It sucks that it’s not uncommon for me to doze off in my evening classes as my medications kick in. And even though ten hours of sleep a night isn’t considered a part of the disorder, it sucks that I get fewer hours in the day than other folks I know to get things done.
It sucks in a lot of ways. But I make do the best I can. I have no choice.
There’s this Olan Mills Studios photo of my siblings and me when I was four. In front of the woodsy backdrop we sit in a row, none of us wanting to be there. My sister, posture sunken in, looks as if she might vanish behind her impish smile. One brother glares sullenly at the photographer, and my other brother is crying for posterity. Me, I’m a spring about to leap off the grey velveteen mat, hunched over, fists balled up, ready to explode. The physical signs of Generalized Anxiety Disorder are right there on film, even when I was just a preschooler.
Flash forward eighteen years to 1997. I’m sitting in the ER of the psychiatric hospital in St. Louis, stuck in this mental loop, prattling on about Rosa Parks and stringing together some explanation as to how she related to my aborted attempt at leaping from the Washington/Elizabeth overpass. I rock back and forth in my chair, eyes darting about, fearful that anything I say or do might somehow incriminate me. After five minutes of observation, and a brief discussion of my erratic sleep patterns intertwined with Rosa Parks, I’m diagnosed with bipolar disorder.
I began a medicinal regimen that piled on the pounds and flat-lined my mood. This is okay, I told myself, because I have to follow doctor’s orders, and as long as I’m not too happy or excitable, and thus in the throes of the mania that led me to try to kill myself, then all is well. A deadened soul was preferable to a dead body.
For a full fifteen years I labored under the bipolar diagnosis, until finally I began seeing a psychologist who concluded that I wasn’t bipolar. He saw zero evidence of mania and couldn’t understand how the ER so long ago had drawn such a diagnosis off one brief observation; what they had witnessed, my doctor told me, was not mania but anxiety. My depression could mostly be written off as situational; it was just that I found myself in an endless string of calamitous situations about which I could do little and which would have triggered depression in just about anyone. He passed on the message to my psychiatrist—“This man does not have bipolar disorder, but Generalized Anxiety Disorder”—and my medications were changed.
With a new frame of self-understanding, I paid closer attention to what triggered these attacks that continue to leave me nauseous and vertiginous, or fatigued and bedbound, or stammering and stuttering—whatever way the disease wishes to manifest itself that particular day. And, in truth, I’m triggered by just about everything.
Jeff, the caseworker from my clinic, looked over the annual-review paperwork and said, “Looks like things are good. You’re managing your symptoms well.”
“I’m not sure that I am, though,” I replied. “I mean, is it normal to have the same three dreams over and over? I haven’t really talked about it with anyone, but I’ve been wondering.”
“What are the dreams like?”
“In one, I’m stuck at my old job—the one I got laid off from—and I’m just volunteering there, but everything’s going wrong and I can’t do anything about it because I’m not an employee anymore. There’s the dream where I’m back in Bible college in St. Louis, and they’re making some weird arrangements to allow me to remain at school even though I’m openly gay, like, I can’t date till I graduate, or something like that. I was buried deep in the closet there, of course, and the pressure led me to try to commit suicide. Not sure that’s in my records. Anyway, then there’s the one where my father comes back to life and apologizes to my family for everything he did.”
“Hm,” said Jeff. “A layoff that screwed you over financially, homophobia that drove you suicidal, and an abusive father trying to make amends. Sounds like textbook traumatic situations. I’m going to set you up with an appointment with my friend Sally, she’s out in Golden Valley, same network my clinic is in.”
“What can she do?”
“Could be a case of PTSD. Sally’s an expert; I’ll defer to her opinion.”
Three weeks later, I met with Sally, and she agreed with Jeff that I most definitely suffered from PTSD. The week after that, we began weekly EMDR therapy.
EMDR stands for Eye Movement Desensitization and Reprocessing, and as it was originally conceived, it involved visual stimuli that triggered the brain hemispheres separately. But this was not the method Sally used with me. Instead, I held these two devices in my hand—I must admit, I held back a twelve-year-old’s guffaw because they reminded me of large testicles—and as Sally talked me through a simple calming meditation, the devices vibrated alternately and rapidly, left right left right left, about a half-second each.
After attuning my brain to the EMDR device, Sally and I met once a week for treatment. At each appointment, we addressed one of the three most traumatic events in my life that I related to her when first we met.
I held the electrical testicles as I talked through the time in seventh-grade gym class when three boys ambushed me, stripped me of my towel, and held me down naked as they mocked my modest manhood. Gym class was hell that whole year. I was surrounded by boys more mature and better-looking than me, and the greatest horror I could imagine was getting an erection in the locker room and thus revealing my deepest secret of all, a secret that I kept all through high school, that I kept as best I could through Bible college until the pressures of keeping myself closeted so I wouldn’t be kicked out of school drove me to the breaking point and I dropped out, struggled to find a job as my sanity deteriorated, found myself at a payphone shortly before reaching the Washington/Elizabeth overpass, babbled on and on in an ER about Rosa Parks because in my addled state, she was the only symbol of persecution I could muster, my substitute for the sin I dared not tell the doctors—I was a homosexual.
As the balls buzzed in my hands, Sally crafted a new narrative that wedged deep in my brain—yes, those boys assaulted me, but I was making something of myself, even planning to go back to school to finish my Bachelor’s degree, whereas my brain couldn’t even dignify the teenage trio by remembering their names. And I was indeed a man. I’d grown; I’d matured both physically and mentally; I was no longer the little boy trapped on the locker-room bench.
When next we met, Sally led me through another childhood scenario. I’m seven, and my father is walking with us four kids out of the Baskin-Robbins and towards the car on the other side of the parking lot. And my father is chugging along, won’t slow down, my three more athletic siblings racing to keep up, and I’m trailing behind, and a car is coming my way, and I’m frozen in the middle of the drive, screaming for my father, the car honking its horn, me screaming, my father finally, halfway across the lot, turning back towards me, the car’s screeching brakes, my father berating the driver, my siblings cowered at my father’s knee.
“Yes,” Sally intones in the midst of my worried reverie, “your father was wrong. He should have kept your pace. And to be abandoned in the road was frightening. But your father wasn’t your only parent. You had your mother. And you’ve said she looked out for you, and loved you, and cared for you very much. And if she had been with you at the Baskin-Robbins, she would never have left you in the road. And she didn’t leave you. She raised you and cared for and loves you still. You are very lucky to have her in your life. Her love triumphed over your father’s abandonment.”
Third session. My story: Age seven, coloring at the dining room table, Mom washing dishes always washing dishes next to the broken dishwasher my father won’t repair so that my mother will always, always be washing dishes so she will have no time with her four children (my sister withdrawn my brother angry my other brother terrified me tense) the separation my father’s way of finding yet another way to hurt Mom he at the head of the table mute the silent treatment NO the silent treatment because you don’t know when he’ll blow up and then he POUNDS the table shakes my drawing of a red cat Mom turns my father stares at her his finger to his throat draws it across I KNOW what that means points to Mom points to himself my GOD he’s going to kill Mom and himself I’m going to be an orphan no one’s going to take care of me my life is over my life is over I run out the kitchen door onto the patio and SCREAM
“But you survived,” Sally says. “You and your mom and your brothers and sister went to the shelter that very night. You escaped. And once the divorce was final, you didn’t live with your father anymore, and he faded away, and then he died, and he can’t terrorize you anymore. And you are not him. Look what a good and kind and caring man you are. You are as far from him as you can get. And he can’t hurt you anymore.”
I wish I could say that EMDR cured my PTSD. It helped; the trauma-induced nightmares are far less frequent. But I will always carry the trauma in my body: the PTSD keeping me awake when the meds won’t work, thus feeding into my DSPS; the helplessness of DSPS, the shame of not being able to control something so simple as sleep; the hypervigilance of PTSD, me always looking out for what terror might strike next, exhausting my brain, fatiguing my body further than DSPS and RSAD and GAD already do; too tired to cook, I stock up on alphabet soup, easy to microwave, easy to eat, the diet contributing to IBS; the inability to eat right leading to guilt that feeds the GAD, always fearful I can’t do anything right; the tension of guilt activating TMJ; the ache in my jaw from TMJ or the mortifying stutter of GAD silencing me; IBS TMJ RSAD DSPS GAD PTSD always conspiring to silence me.
And so I write.