Giving cigarettes the Axe

My seizure medication (Lamictal, which is being slowly titrated up from 400mg/day to an eventual 800mg/day) hasn’t killed my cigarette-smoke hallucinations, so I’ve resorted to attempting to mask the imaginary stink with one of these plug-in room-smell thingies (in the default—but debatable—Fresh Linen scent):

And even though it’s on the lowest setting and hidden halfway behind a huge piece of furniture, it makes my entire Basement Bachelor BunkerTM smell like a middle-school boys’ locker room the day after a massive sale on Axe Body Spray.

It does mask the cigarette-smoke hallucinations—which get especially strong (or at least acutely noticeable) as I work at my desk—but it’s giving me a low-grade headache.

Even worse, it’s giving me flashbacks to my boyish middle-school waistline, first fuzz of pubescent armpit hair and store-brand parachute pants. Can I borrow some hair mousse?

MRI/OLFACTORY HALLUCINATIONS UPDATE:

My MRI showed no evidence of seizures, but my cigarette-smoke hallucinations are so pervasive and choking that my neurologist had the levels of Lamotrigine—an anti-seizure medication I'm already on to control my bipolar disorder—tested, and since the numbers were so low he wants me to quadruple my dosage.

Quadruple. In one fell swoop. Which is crazy. And since I'm crazy, I KNOW crazy.

So I have a call in to my psychiatrist to get a second opinion. Because it took a decade to test and titrate the med cocktail I'm currently on that finally makes me (relatively—the jury is still out) functional. And I'd rather choke on imaginary cigarette smoke the rest of my life than spend another day in a psych ward with a roommate whose first words to me are that he just got out of prison. Because I've already crossed THAT off my bucket list.

BUTT UPDATE:
The super-handsome leather-clad supposed-to-be-for-a-dining-room chair I use for my work-at-home desk has started leaving crippling pain in my butt and tailbone—please keep your vulgar comments to yourselves—so I ordered an ergonomically designed butt pad to hopefully let me stand up after every hour of writing without shouting epithets at the no-butt-pain gods.

The pad I bought is literally called Everlasting Comfort(R)—which, I'm sorry, should have been snatched up by the funeral industry decades ago, so way to drop the ball, casket-makers—and it's velvety soft and everlasting-comforty cushy and it has a cavernous space for my poor beleaguered tailbone to hang in peace. I can't say the same for the little hill it expects me to rest my boys on, but if I can walk like a bipedal hominid after spending a day writing about pajamas and kitten hats, the boys and I will learn to adjust.

This is my first day riding the Everlasting Comfort Train, and I've been ergonomic-butting and tailbone-hanging and boys-resting on it for six hours of work now. So far it doesn't feel like anything's changed, but that could just be because my existing profound butt pain hasn't cleared itself up yet. So—like Nevada—the boys and I are still tallying votes and we'll announce the results sometime before the peaceful transfer of power.

Some people get MBAs. Or MSWs. Or Mrs.'s.

I just got an MRI. And I have the MRI hair to prove it.

My choking-cigarette-smoke olfactory hallucinations are now in their sixth straight sold-out week, so my neurologist ordered an MRI to see if I might be experiencing seizures. And since I was a bit overdue for my every-other-year MRI to monitor a benign adenoma tumor on my pituitary, my GP ordered one for that as well.

For those of you keeping score at home, that's two MRIs for the price of one Richter-scale bedhead.

And hoo-boy has the MRI spa experience improved in the last two years. Instead of being immobilized in a claustrophobic head cage and jammed full-body into the super-duper-claustrophobic MRI oven that clanks and screams at you like you're about to be devoured by robot ghosts, this time I was given noise-almost-canceling headphones with my choice of music (they cruelly didn't have a Broadway option, which is just rude) under my claustrophobic head cage and I was rolled into the oven only to my shoulders, which allowed a welcome sense of light and air circulation.

Side note: The top of the oven hole that I was rolled into was made of pale plastic molded with two ridged arcs that curved in from the sides and swooped down to meet in the middle and disappear at the bottom. And when you stare at them for over an hour as terrifying robot ghosts clank and scream in your ears, they start to look like ... well ... um ... a hoo-hoo. And once you see an abstract hoo-hoo arcing gracefully mere inches from your face, you totally can't UNsee it. So it's fair to say that I've had more than my fair share of molded abstract hoo-hoo for the day. Or the week. Or the decade.

When the guy who locked me in the claustrophobic head cage and rolled me into the MRI clanking-and-screaming-robot-ghost oven told me that Broadway wasn't an option for my musical distractions, I—in a pique of fluster—blurted out the obvious second choice for a Broadway lover: '70s rock. I have NO idea why I said that, other than the fact that I like The Eagles and "Little Willy" (the SONG, ya perverts), but the genre's stentorian guitar shredding and growled, node-guaranteeing singing ended up making an arguably better robot-ghost-clanking-and-screaming cover-up than "She Used to be Mine" or "Finishing the Hat."

Side note: When you're immobilized in a cage with a molded abstract hoo-hoo glaring in your face and an endless parade of '70s rock anthems you've never heard before blaring in your ears, you have to think of SOMETHING to pass the time. So you inevitably find yourself listening intently and trying to catalog the form and structure of each song.

Cliff's Notes: The '70s were clearly a period of unbridled musical creativity and innovation, because not a single song is written in AABA form. Not even "Old Time Rock and Roll," despite its UNAMBIGUOUSLY STATED allegiance to the AABA Golden Age. Thanks for nothing, Bob Deceiveger.

Medical-stuff conclusion: There is a measurably common—though not necessarily causal—relationship between mental illness and pituitary tumors. Which is one reason we monitor my adenoma every two years with an MRI to see if it's growing or in any way changing. There is also an objectively cruel relationship between my bipolar-meds-induced tardive dyskenesia—a permanent neurological disorder that causes LOTS of involuntary muscle movement—and my regular MRIs that require me to LIE THE FUCK STILL FOR OVER AN HOUR and hold all that twitching in. It's exhausting, which is why I always take a PTO day to recover when I have an MRI.

And to tame my damn bedhead.

Phantosmia isn't just the name of a potential Drag Race contestant

It's also the clinical term for olfactory hallucinations. And I've been choking in a cloud of hallucinatory cigarette smoke for almost a month now.

It gets so bad that I swear it's coating my throat and I almost start to gag. It feels so pervasive that I swear it's soaking deep into my skin like I've just emerged from spending the night in a smoky bar. (Remember when people used to smoke in bars? Remember when they suddenly couldn't anymore and bars slowly became more and more breathable as the stink dissipated and you didn't have to give yourself Silkwood showers every time you got home?)

And it's so everywhere that I've incorporated easily accessible cans of room spray almost permanently into our home décor. Which barely masks the odor, but it at least helps a little.

It may or may not be a side effect of my bipolar meds. It may or may not be a symptom of my bipolar disorder itself. It doesn't appear on any list of side effects I've seen for covid. And it may just be a stand-alone add-on to the pile of weird things about me.

And it doesn't at all appear to be concerning to my doctors, who have repeatedly shrugged it off.

Weirdly, while my mood stabilizers have left me EXTREMELY chill about covid, politics, the derecho and the state of the world in general, this inescapable cloud of cigarette smoke is really beating me down emotionally. I barely leave the house if I don't absolutely have to.

But I've read that people's phantosmia can manifest itself in clouds of feces, decaying meat and sour body odor. So choking on cigarette smoke 24/7 feels in comparison like I won the lottery.

I had these hallucinations for a month back in March and April and they eventually went away. So I'm counting on that happening again. In the mean time, if you're ever near me I'm going to look at you like you're a big stupid insane liar if you say you can't smell all the thick cigarette smoke around us that's so real it's making me gag.

Also: Don't smoke in real life. It's gross. And bad for you. Listen to your Uncle Jake on this.

So I've started writing this mental-health blog ...

Actually, so far I've just been retrofitting it with posts I've made on Facebook and my older blog over the last decade. And there are hundreds more posts buried away in my social-media attics and basements that I want to find and repost here to create a more robust picture of my personal experiences with and observations about bipolar depression.

Unless I have a massive episode or interesting experience to write about, I'll probably focus my efforts here on digging up and reposting older posts, essays, reviews and ruminations for a while. So if you decide to come back, poke around in the labels and archives scrolling down the column to your right to find new old stuff to read.

Getting this blog up and running and filled with (hopefully) meaningful mental-health content is very much a work in progress, and I hope every time you return you find something helpful or interesting or occasionally entertaining.

And I also hope you share the URL far and wide. We bipolar depressives need our validation. And I have dreams of getting a book deal. And eventually a sitcom and a line of action figures. So copy and paste this with wild abandon:

TMIpolar.blogspot.com

Stay healthy and be well!

The tenacity and the fortitude

Sometimes being bipolar means waking up with your head covered in a gray wool blanket in the middle of a hot drenching rain and the weight of it is practically crippling but you know you're not depressed and you know you're not confused and you know you can breathe and you know you're invested in fighting your way out so you treat every blink and every word and every thought as fuel that sparks the next blink and the next word and the next thought and even though you're foggy and slow and maybe even late you're MOVING and no matter how long it takes and how hard you have to work just to achieve your minimum for now you know that it's just for now and you'll sooner than later find your way out of that hot wet scratchy gray wool blanket and you'll know from hard-fought experience that you may not have the power to make the rain go away but you have the tenacity and the fortitude to outlast it and find your clarity and focus again in the warm, restorative sunlight it was trying to hide from you and even though you're never entirely sure you know exactly what that unclouded sunlight feels like you'll always get close enough to know what you're fighting for and how to be stronger and smarter and even more certain of your indestructibility the next time.

Of Two Minds

I stumbled on this documentary about bipolar disorder last night on Amazon Prime, and it is so well done that I didn't even pick up my phone as I watched it. Which says A LOT.

The film follows the lives of four people living with bipolar disorder for over a year and veers off once in a while to profile a handful of others, which I think leaves viewers with a robust understanding of the commonalities bipolar people all deal with but really underscores the fact that no two people's experiences are the same. Some people (like me) have hallucinations, some cut themselves, some find manic episodes to be thrilling, some (like me) find them scary and exhausting, some experience functional depression, some (like me) fall into depression so deep that it's past the point of functioning and therefore safely past the point of being capable of self-harm, some attempt and eventually succeed at suicide, some hate taking meds and even refuse to fill their prescriptions, and some (like me) can never forget how awful it is to be off our meds and therefore take them religiously.

The people profiled are straight, gay and bisexual. Some are religious and some are atheists. Some have money and some are struggling so much that they can't afford their meds and rent and seriously consider leaving the United States for a country that can offer them healthcare. They live in cities all over North America. The documentary really does a deep dive into the environments and experiences that shape the way people manage their mental health—though my only criticism is that there are only three people of color, all of whom are just one-off side interviews, which I think really misses an opportunity to paint a more robust picture of experiences and contexts and cultures and personal decisions.

It's edited deftly to be thorough and intimately informational but not overwhelming. I was left feeling emotionally connected to everyone—to the point that I rooted for all of them but ended up angry at one person and genuinely disliking another.

If you or someone you love is living (or struggling) with bipolar disorder, I highly recommend watching this. It's quite beautiful.

Reason #7,963 that it sucks to have no power in prolonged high heat and humidity:

• Your meds, vitamins and supplements get sticky and melty and refuse to come out of your pill box

Rolling blackouts

I had a rapid succession of near-blackout episodes yesterday—which are a super-fun side effect of my bipolar med cocktail—in a friend’s yard, and she had to social-distance nurse me back to some semblance of mental presence and then drive me home. I usually have 4-5 greyout episodes a week, and I know how to manage them and get on with my day. But yesterday the Mother Ship came by to zap me into foggy, flashing-lights-in-my-eyes submission.

I’m 95% human again this morning, but you can tell I’m still not 100% present on the planet because of my super-fabulous alien hair.

We love anyway

Next to Normal—a searing, brilliant, Pulitzer-winning rock opera examining the lives of a family whose mother is profoundly struggling with bipolar depression—opened on Broadway 11 years ago today. The show beautifully captures the swings between the ridiculous highs and the soul-crushing lows the disease brings to those of us living in its fogs and terrors ... and to the selfless teams of people who care for us.

I’m fortunate enough to have seen the original production, very soon after I’d been diagnosed as bipolar and had found myself caught in a rather terrifying struggle to wrap my confused, exhausted brain around the fact that mental illness was no longer a mysterious entity in other people’s lives; it was MY life, and I had no idea how to manage it or what potential and very real horrors to expect from it.

The musical is rough to experience from any perspective, but seeing it for the first time tore me apart ... and then put me back together with its closing anthem, “Light,” which features an almost casually placed lyric that is at once devastating and hopeful and never fails to sneak up on me and emotionally gut me even though I know it’s coming: “The price of love is loss / but still we pay / we love anyway.”

Back when I saw the show on Broadway, selfies were new and weird and shameful—and for you young folks, it was the Middle Ages when our smartphones had cameras that faced only one way and didn’t let us see on our screens what our selfies would look like so we just had to hold our phones in the air and hope for the best—so I took this one-try selfie as quickly and discreetly as I could to ensure an entire city of complete strangers wouldn’t judge me. It turned out rather well, although I cut off the last letter of the sign. Which means as far as any of you know, I actually just saw a knockoff production called Next to Norma.

I've been invited to be the Bipolar in Residence and talk to the casts of Next to Normal productions at a number of local theaters over the last few years. And while I hope it was helpful for the actors as they rehearsed and found their characters' realities, it was extremely helpful for me to have an opportunity to articulate the swings and uncertainties and terrors of living with a mental illness—both so I could explain any weirdness I've personally exhibited and to help the actors help their audiences better understand these realities.

While every bipolar mind is different and therefore every moment of Next to Normal doesn't exactly mirror my experiences, every note and every word of the show is brilliant. And that closing anthem—sung by the characters not to each other but to the audience and to the present and to the future—encapsulates the struggles and hopes I live with every day in astute prose and powerful, emotional, wall-of-sound vocals:

Day after day,
We'll find the will to find our way.
Knowing that the darkest skies
Will someday see the sun.
When our long night is done,
There will be light.

I hope this is more indicative of me being crazy than me being infected with a high-profile pathogen

but I'm smelling cigarette smoke EVERYWHERE in the house.

Nobody else smells it. Nobody here smokes. We can't even light candles in the house because of Dad's oxygen machine.

And I don't like it. It's almost making me gag.

Pete Buttigieg had another town-hall rally in Cedar Rapids tonight ...

where he continued to inspire and enthrall and impress the hell out of a packed room of supporters and still-undecided caucusers.

His messages of big-tent inclusivity and his standards of decency and his unfailingly measured and principled and educated policy proposals shaped more than his well-rehearsed stump speech; they drove thoughtful, meaningful answers to audience questions drawn randomly from a literal fishbowl in front of everyone. Pete doesn’t just talk for the sake of talking—he has things to say that he’s clearly thought about and taken the time to research and understand and make informed opinions about.

Issues related to mental illness—and caring for people with mental illnesses—came up more than once over the course of the evening, and amid discussions of stigma and a lack of available care and his loan-forgiveness proposals to draw more people into the field, he specifically mentioned bipolar disorder. I was sitting with my dad in the ADA section, wedged between him with his cane and a stranger with hers. My tardive dyskinesia—a permanent tremor disorder brought on by my bipolar meds—happened to be firing on all cylinders tonight, and as I was struggling mightily to sit still and not bounce like an earthquake and jostle everyone wedged around me, my chosen candidate—the measured, educated, thoughtful, egalitarian, inspiring, openly gay, perpetual adult in the room—specifically mentioned ME and my struggles and my family’s struggles ... and he had solid, workable ideas for addressing them for everyone living with our struggles.

And though my meds have also pretty much neutered my emotions and left me virtually unable to cry, I found myself repeatedly choking back tears.

If you’re undecided or overwhelmed or even underwhelmed by the field of Democratic candidates, reach out to me. I’m more than happy to share with you why I find Pete Buttigieg so inspiring and important and eminently capable of leading us all as a citizenry and as a country.

BOOT EDGE EDGE!

Pete Buttigieg had another town-hall rally in Cedar Rapids tonight, where he continued to inspire and enthrall and impress the hell out of a packed room of supporters and still-undecided caucusers. His messages of big-tent inclusivity and his standards of decency and his unfailingly measured and principled and educated policy proposals shaped more than his well-rehearsed stump speech; they drove thoughtful, meaningful answers to audience questions drawn randomly from a literal fishbowl in front of everyone. Pete doesn’t just talk for the sake of talking—he has things to say that he’s clearly thought about and taken the time to research and understand and make informed opinions about.

Issues related to mental illness—and caring for people with mental illnesses—came up more than once over the course of the evening, and amid discussions of stigma and a lack of available care and his loan-forgiveness proposals to draw more people into the field, he specifically mentioned bipolar disorder. I was sitting with my dad in the ADA section, wedged between him with his cane and a stranger with hers. My tardive dyskinesia—a permanent tremor disorder brought on by my bipolar meds—happened to be firing on all cylinders tonight, and as I was struggling mightily to sit still and not bounce like an earthquake and jostle everyone wedged around me, my chosen candidate—the measured, educated, thoughtful, egalitarian, inspiring, openly gay, perpetual adult in the room—specifically mentioned ME and my struggles and my family’s struggles ... and he had solid, workable ideas for addressing them for everyone living with our struggles.

And though my meds have also pretty much neutered my emotions and left me virtually unable to cry, I found myself repeatedly choking back tears.

If you’re undecided or overwhelmed or even underwhelmed by the field of Democratic candidates, reach out to me. I’m more than happy to share with you why I find Pete Buttigieg so inspiring and important and eminently capable of leading us all as a citizenry and as a country.

The mind is the first thing to go ...

It’s the second day of the year and I’ve already forgotten to take my morning bipolar meds. THAT’S ONLY A 50% SUCCESS RATE, PEOPLE.

I’ll never be one of the people who decide that they’re all better and stop taking their meds, but I’m proving over and over again that I’m one of the people who are too groggy every morning to remember to take them in the first place. Which is EXACTLY why I have a mother who obsessively double checks for me and I have a three-morning stash of dated backups at my desk.

Onward!

Some dumbass we all know

... has accidentally taken his night psych meds in the morning enough times lately that his mom finally had to make a bunch of big white paste-on labels for his pill containers so he hopefully won’t get so confused again in the future.

Tardive Dyskinesia Citrus Blend Sparkling Water

Whee!

My tardive dyskinesia—the permanent, involuntary-movement-causing neurological side effect of my bipolar meds—is firing on all cylinders tonight. I’m shaking and twitching and lurching like a sloppy drunk swatting mosquitos on a pogo stick during an earthquake right now. But my week’s obligations are over, I’m finally home, and I’m gonna find a quiet room where I can just go and WIGGLE.

Do you have ANY IDEA how hard it is to take a decent helicopter selfie in a hooded sweatshirt? DO YOU?

The hood opens around you like a massive poppy in full bloom and you end up with a dinner-plate halo like you’re a minor saint in a Medieval altar triptych.

Anyway, when you stave off a bipolar episode by sleeping all day and then chug a pre-workout shake before an evening trip to the gym, you end up wide awake at 11:45 pm. But I wore red for International Women’s Day and I gave a little hug to (I think) every woman at rehearsal tonight (though we were a bit chaotic so I may have missed somebody but please know that you’re all kick-ass and I love all of you every day) and even though I always feel guilty when I miss work, I count today as good but I just REALLY want to fall asleep now.

I felt a little unplugged and unproductive at work yesterday, but I went on to have a killer leg workout

Then I woke up today totally scattered and exhausted, so I took my first sick day in months. It’s hard to discern an off day from the onset of a depressive episode, but I decided today was an onset and I’m glad I called in sick and spent the day sleeping to an Alexa playlist of classical orchestral music. Because I woke up human again. Lingeringly groggy, but human. Onward!

An Unquiet Mind: A Memoir of Moods and Madness

This fearlessly, brutally honest 1995 memoir examines the exhilarating highs and soul-crushing lows of manic-depressive illness (now more commonly called bipolar disorder) from the perspective of a psychiatrist trapped in the disease. Her frank and intimately personal insights bring the disease's cycles of terror, elation and crushing, abject despair into stark and sometimes heartbreaking clarity. It was recommended to me soon after I was diagnosed as bipolar in 2008, and it grabbed me on every level—from its smart writing to the recognizable, relatable, almost comforting details of its narrative—and I all but literally didn’t put the book down until I’d finished it. 

I have an indelible memory of reading it on the Red Line EL train home from work one night in Chicago, and a man who’d clearly seen me reading it made sure we made eye contact as he stood up and then he patted me reassuringly on the shoulder as he got off at the Sheridan stop. That encounter—a direct extension of this book—made me literally weep as I was coming to grips with label mentally ill and discovering the signs I’d never thought to notice until then that I wasn’t alone. 

If you are or love someone who is bipolar—or struggling with any mental illness—this book will make you weep, give you hope and quite possibly change your life.

I probably shouldn’t have been so cavalier

about living my life effortlessly free and clear on my bipolar meds this morning, because by noon I was sliding into a depressive episode fast enough that I left work and came home to crash. But five hours of sleep and shovelfuls of leftover Christmas comfort food have brought me back from the brink. Seeing Kelly Clarkson sing “Fancy” in tribute to Reba McEntire on Kennedy Center Honors didn’t hurt either. I’m profoundly exhausted, but I think I dodged a bullet by canceling the rest of my day to sleep. Onward!

One of us is a bit twitchy and one of us is a Bitch Kitty

But only one of us can blame our issues on our bipolar meds.

Tambourine, the forgotten reindeer

As is the case with many people on psychotropic medications, my bipolar meds have given me a robust case of tardive dyskinesia, a permanent neurological disorder that causes a range of involuntary movements including twitches and wiggles and shakes and grimaces and blinks and OCD things like repetitive face touching.

And I've won the tardive dyskinesia lottery and gotten the full spectrum of these behaviors, with varying degrees of intensity. Some days my knees just shiver. Some days I have epic squinting, face rubbing, rocking and anything else my body can think of to make me super-paranoid I'm irritating the hell out of everyone around me. People often ask me if I'm nervous (which happened once at a job interview I was otherwise rocking, to my eternal mortification) or cold (my veins actually course with reptile blood and I am NEVER cold) when they see me shaking. People have asked me why I'm always on my tiptoes when I sit down (the obvious answer: to help my body shake the living hell out of my legs more annoyingly). People have politely asked me to sit still.

And while these awake behaviors are bad enough, it's the nighttime manifestations of tardive dyskinesia that are killing me. Many, MANY times every EVERY night, I end up on my back with my legs bent and my feet flat and my knees slamming against each other so violently that they wake me up—usually somehow mummified in a tangle of sheets. Or I wake myself by repeatedly running my hands through my hair like I'm a supermodel being all sexy for a shampoo commercial as I ride with the top down along the 101. Or I just rub my face like I'm Lady Macbeth but the damn spots got all over everything and I need to URGENT URGENT WAKE UP AND TELL MACBETH TO ORDER DUNKIN' AND NOT MURDER DUNCAN.

Last night it was the face. Hoo boy, was it the face. And it was so borderline violent that it hurt ... and then it stung like an advanced-degree sunburn when the water hit it in the shower this morning. Which—if you see me today—is why I look like Hobo Santa because my cheeks are ultra-rosy and I'm now on my third day of not shaving and I don't care THAT much about how I'm going to look in the family Thanksgiving photos.

I take Gabatentin three times a day to help control the reason I'm extremely bad at stealing tambourines, but that is a six-paragraph discussion for another day. Key words: opiod epidemic

Anyway, this post started out as a few sentences about how my face hurt in the shower this morning and then I was going to show you all a photo of the Hershey's Kisses I bought last night THAT LOOK LIKE LITTLE SANTA HATS. Sorry for rambling on like this, but look at the Hershey's Kisses I bought last night THAT LOOK LIKE LITTLE SANTA HATS:

Abilify wathdrawal

Nobody told me it would hurt this much.

I'm back from my three-month checkup with my psychiatrist

And she still wants to keep seeing me every three months instead of the every-4-6-week schedule I was on a year ago. This might sound good to you, but it's HUGE to me and my family. The bipolar med cocktail that she's methodically calibrated for me over the last three years seems to be keeping me stable (though the 12+ miles I've been running every week since March might also have something to do with it), and of course the tireless, diligent support of my family and friends has been an enormous part of that success.

I'm so thankful for all of this—and all of you—that I splurged on a massive bucket of Diet Coke and two super-sticky apple fritters on the way to work. Even though caffeine and sugar probably undermine the efficacy of my meds and exacerbate their weight-gain side effects. But I'm pretty sure I can manage these setbacks.