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.

Well, THAT was awkward

We were running along at a nice pace down the Cedar River Trail, the sky started thundering at us, the rain started ... and I started having my own flashes of light. And the gray sand washing down my face that I feel when I’m about to have a blackout episode. Because bipolar meds are fun.

This happens multiple times a day when I stand up too fast. But it’s never happened when I’m running. I tried to slog through it, hoping it would pass ... and I got about half a mile before I noticed I was zigzagging so I wisely let what little common sense I had left prevail and I stopped. It was mile 3.12, which was almost our turnaround point. But it WAS a complete 5K, so I deserve a medal.

You know who else deserves medals? Rob and Scott, who stopped their run and insisted walking the 3.12 miles back with me. I kept insisting I was fine. I kept insisting that they run ahead and get their miles in. But they kept insisting on being awesome friends and not leaving me. Those jerks.

I feel normal now. The flashes of light and gray sand are gone. But I’m frustrated and a little concerned and totally embarrassed about the whole thing. And very soaked from the rain.

Shit.

Yawn

When you accidentally took your night bipolar meds—which include the sedating Clozapine—instead of your morning ones plus you didn’t rehydrate nearly enough after your morning run so you’re profoundly sleepy and your entire body feels like an immolated corpse and you need all the stimulation and moisture you can get before work:

And on all days to screw up my meds, I had my three-month psychiatrist appointment this morning. I’m apparently still normal enough to be allowed to roam among the unsuspecting citizenry, but I’ve been having near-blackouts multiple times a day for months and my blood pressure is on the alarmingly low side of normal, so now I have another compelling reason—the other one being I’m 50 and need to be responsible and get a colonoscopy—to visit my GP.

I did NOT just talk about my colon on my blog. Did I?

Anyway, I’ll call to schedule an (yawn) appointment with my (yawn) GP just as (yawn) soon as I rehydrate my (yawn) cells and wake the hell (yawn) up.

Yawn. Colon.

Fire and music

When you apparently mention being bipolar too much on social media and it cosmically triggers a depressive episode that lands you in bed for 18 hours when you get home from work and it’s bad enough that you call in sick the next day even though you’re hoarding all your PTO for all your summer vacations but it turns out to be the right decision because you sleep long and rough and alarmingly sweaty and you eventually start to punch your way out of the wet wool blanket and see the light through the fog and your mom gets out your favorite mattress-ticking sheet to put on the couch so you can convalesce in the living room by the radio that’s currently playing a Fauré harp sonata which isn’t totally your thing but you still have some lingering fog so you really have bigger fish to fry which is just an expression because you don’t really like seafood where was I oh yes I had a damn depressive episode yesterday that ended up being worse than I’d expected and I always feel guilty calling in sick but these episodes have gone from one a month to about three a year and it’s better it happened today instead of tomorrow when I’d have to fight my way out of a fog on stage in my show which I’ve done many times before but it’s not ideal and it usually alarms my castmates so WHEW! to that timing and now the radio is playing a Rossini overture that’s filled with fire and music just like Eve Harrington which is way more my style and I have my mattress-ticking sheet and a feisty-cherry-flavored whatever the hell that means Diet Coke and I managed to take a decent selfie not that I have a lot of practice or anything and if I time everything just right this manically run-on non-sentence will post just ... as ... the ... Rossini ... comes ... to ... its ... triumphant ... CONCLUSION.

This shirt may be the best part of my day

When your damn hip injury seems to be creeping up into your lower back so you still can't run and it's a cool overcast day which is your favorite running weather but it's still your favorite weather for anything and your candidate won the Democratic gubernatorial primary last night and you found a totally cool stretch-cotton batik-print paisley polo this morning that you'd forgotten you had and your car is so totally clean and free of clutter that you can actually take a wide-view selfie to show off the back seat and even though you're a little bit bipolar-foggy today you're still functional enough to write a staggeringly long run-on sentence that technically has neither a subject nor a predicate but you're a writer and you can get away with such brazen linguistic abominationness plus you make up words with shameless abandon plus you end blog posts with needless prepositions at.

Why is the hold music at my psychiatrist’s office playing “Send in the Clowns”?

 Making my entrance again with my usual flair ...

Well, shit

When you get home from an amazingly awesome vacation and you set down your painstakingly-filled-by-your-mother container of bipolar meds divided into an entire week of morning and evening handfuls of pills and it slips and lands face-down on the carpet and pops open and basically her worst nightmare explodes right before your eyes ...

I seem to be having a bit of a bipolar depressive episode today

I’m functional enough that I’m at work, but I’m dysfunctional enough that I. CAN’T. FUCKING. SIT. STILL. Being bipolar is weird.

Plus my boyfriend won’t even talk to me.

I just had my six-week checkup

(I'm still crazypants biploar but things continue to be stable and we're not altering my meds this time, thanks for asking) and when my psychiatrist met me in the waiting room she asked me if it was OK if a residency doctor observed my visit and of course I said yes because I'm clearly not a hide-my-crazypants-biploarness person and when we got to her office and she opened the door and he was politely standing there waiting to shake hands and introduce himself OH MY GOD HE WAS TALL AND HANDSOME AND LET'S NOT MINCE WORDS HERE HOT HOT HOT and we sat down for my visit but I kept looking over at his let's still not mince words here sexy forearms because that's all I could see besides his face because he rudely wasn't wearing a Speedo and WHY ARE YOU SO HOT STOP DISTRACTING ME and we talked about all the usual stuff like my moods and my appetite and my feelings of control and my ability to concen OH MY GOD I CAN'T CONCENTRATE BECAUSE JUST LOOK AT HIM HE'S TOO HOT TO WALK THIS EARTH trate and any side effects of my meds (still lingering exhaustion, but thankfully it's not 24 hours a day like it has been) and is there anything else I think would be relevant to tell her WHY ARE YOU TALKING TO ME HAVE YOU EVEN NOTICED THE LET'S AGAIN NOT MINCE WORDS HERE HOT HOT HOT MAN WHO'S ABOUT TO BE A DOCTOR AND I THINK WE CAN ALL AGREE IT WOULD BE A VERY GOOD THING FOR ME TO MARRY A DOCTOR AND HE'S SITTING IN THAT CHAIR RIGHT THERE SO CLOSE I COULD STARE AT HIM FOR HOURS WHOOPS I JUST DID and I said that I've actually ramped up the activities in my life like Follies rehearsals and editing a massive book pro bono and making my bedroom renovation finally really start to happen and cleaning out the storage room in our basement AND WHY WHY WHY DOES THIS INSANELY HANDSOME MAN HAVE TO KNOW I'M CRAZYPANTS BIPOLAR PLUS NOW HAVE A DOCTOR-PATIENT RELATIONSHIP WITH ME BECAUSE THAT PRETTY MUCH GUARANTEES THAT'S THE ONLY KIND OF RELATIONSHIP WE'LL EVER HAVE BUT HOLY SHIT WE'D LOOK HANDSOME IN OUR WEDDING PHOTOS and she gave me some more free samples of my really expensive medication and we scheduled my next six-week visit AND FOR THE LOVE OF ALL THINGS GOOD AND HOLY MAKE SURE HE'S STILL RESIDENTING WITH YOU WHEN I GET BACK IN SIX WEEKS and I think we had a really productive visit.

I’ve had a couple am/pm mixups in the fistfuls of bipolar meds I choke down twice a day

Mom has now ever-so-subtly tried to fix my absent-mindedness: