In response to the October 29, 2019, article by Dr. David Osser, I would like to share insight into diagnostic modeling from the patient perspective.
I’ve got bipolar. Both I and II. And schizoaffective disorder. And . . . anything else diagnosed in that 15 minute span of presentation at the ER, which is where I received each of these diagnoses.
For me, an initial diagnosis is a great place to start deciding how to treat my symptoms. After that, the game plan is to treat my specific symptoms and not the diagnosis. Providers sometimes miss this essential progression in treating peers because of adherence to diagnostic criteria.
My significant issue with bickering about manic durations is that showing symptoms for too short a span (it appears 7 days for mania and 4 days for hypomania) serves the primary medical rationale “We might treat it wrong if we don’t have the proper diagnostic definition.”
I’ve been riding this rodeo since 1987, diagnosed in 1999. I’ve had rapid cycling with frequencies every hour and not days. Some providers question the existence of mixed episodes. I’ve had a provider insist I treat psychosis first because of the schizoaffective diagnosis, when the psychosis is consequential of severe depression. Treat the depression, the psychosis goes away.
In all this time messing about with treatment, there is one constant:
So, does it really matter about the duration of mania in treatment? I’m showing mania-oid symptoms that happen to last three days. Try me out on some LiCO3. If my mania-oid symptons abate, bam, good job. It’s mania. If not, then . . . let’s trial and error other treatment options.
Being practically cynical, adhering to a minimum episodic duration means peers like me won’t receive the proper treatment of mania because I don’t meet the diagnostic criteria. This is exactly the contrary argument being debated for a revised two day episodic duration . . . even with the proposed revision, my true treatment needs again fall outside the diagnostic capture zone.
Being fully cynical, I often believe the DSM is a billing manual more than a diagnostic treatment manual. This is borne primarily from years of trial and error treatment efficacy frustrations and probably isn’t a reflection of actual purpose.
All said, my sincere recommendation for providers is treat the person and the empirical symptoms and not the diagnosis and diagnostic criteria. This is what works best for me in my recovery journey.
Founder, Stand Up To Stigma
My divorce . . . I wasn’t fond of my divorce. The only difference between my divorce and a bloody, puss-filled, and inflamed hemorrhoidal tissue is nothing. It was icky and messy, it hurt really really really bad, and it was a world-class pain in my arsecrack. So uncomfortable, so ouchy.
After my divorce, I did that most natural of bipolar activities. I isolated. Big time. Calls went unanswered and window shades unopened. The thought of retrieving mail brought on such anxiety-ridden bouts of sleeplessness and self-doubt I questioned my ability or willingness to breathe. My Blanket Fortress was in a perpetual threatened state of being saturated in urine because, in practical terms, it would be easier to change my sheets later than to take on the Himalayan expedition of crawling to the bathroom to use the toilet. I kid you not. This was a serious debate I had each day. My divorce left me in razor-thin mortal existence and my bipolar depressive symptoms were insistent on knocking me off this ragged edge.
I have friends. And, with some of these friends, I was missed. This longing for my presence elicited concern and this longing also elicited an unsolicited visit to my home. I have friends, and I have very good friends who know about my bipolar symptoms and I have very good friends who like me alive. One such friend is Michael.
After a month of completely ignoring the world, Michael and his boyfriend came to my home and kept unrelentedly ringing the doorbell, and despite my bipolar depression sensibilities, I had to answer the door just so I could murder whoever was incessantly leaning on the doorbell button. No, I don’t want another copy of The Watchtower. I appreciate you dropping by. Oh, yes. Stand very still. You have to be murdered.
Drats. It was Michael at the door with Geoffrey. They were smiling, although Geoffrey appeared nauseous over my appearance and aroma. Yes, I was nasty gross from weeks of hygienic neglect. Still, don’t invest too much weight in Geoffrey’s reaction because a used bandaid floating in a public pool triggers Geoffrey’s gag reflex so badly that he dry heaves until his entire body is turned inside-out.
Michael said, “Get ready. You’re going out with us tonight.”
I said, “Michael, leave me alone. I feel like shit.”
Michael said, “No choice, buddy. Get in the shower.”
I said, “Michael, I don’t have the energy for a shower. Just go away.”
Michael said, “Fine. We’ll give you a bath.”
I said, “Michael, I’ve told you a trillion times, I’m not gay and regardless of sexual preference I’m not into threesomes.”
Michael said, “You can’t insult me until I go away. Off to the bath.”
I said, “Fine.”
Geoffrey said, “Uggggg!!! I just threw up a little bit in the back of my throat!”
I said, “You had to wait to say that until my clothes were off? What an excellent ego boost you offer.”
Michael said, “Grow up. And don’t bother deciding on your outfit for the night. We have something special set for you.”
For Michael and Geoffrey, the outfit was more important than hygiene, but only just. What they had planned for me involved many razors and many parts of my body. It involved the makeup aisle at Walmart. It involved a trip to Savers. It involved viewing clothing sized “14” rather than sized “L.”
Shit. I hate my friends.
After the rigorous scrubbing so I didn’t smell like a dumpster fire in the alley behind a curry house, I had so little energy to argue or struggle. I just said, “Shit, Michael. Fine. Whatever. I have only one demand or I’m not going.”
“And what’s that?” inquired Michael, already boasting a smile that wouldn’t fade.
With no hesitation, Michael and Geoffrey agreed to my non-negotiable. Perhaps demanding EVERYONE hit on me would have made them go away.
Painted up with cheap, vibrant face makeup so I looked like a Teletubby vomited a bag of Skittles on my head, and spruced up in a Prince-purple discoball sequined full length prom dress and electric-shock blonde wig, Michael and Geoffrey shared we were going to dinner at my favorite restaurant at the time (Trombino’s on Academy, still a fave) and then off we’d go to shake the night away at Pulse (admittedly, the best dance club with the best dance music in Q-Town). I barely picked at my thick and rich chicken/pasta plate. I barely had the energy to lift my chin above 24 degrees off my chest. How the hell was I supposed to go dancing to a bass-soaked 350 bpm reimaging of INXS’s “Need You To Night”? Collapse was imminent. I didn’t drive myself, effectively without escape. I was screwed.
“I’m not kidding, Michael. Nobody better hit on me tonight. Get the word around as soon as we get to Pulse.” My mood sucked and I was exhausted from bipolar depression increasing the gravitational constant of the universe for only me. I had nothing left in me to ward off unwanted romantic attention. It’d be easier to melt into a puddle of infected off-green sinus-goo and take residence in a CDC petri dish for all eternity. Michael sighed his reply.
We got to Pulse and I wearily pleaded with Michael and Geoffrey to crack the window and leave me in the car. No go. Michael is slim and Geoffrey is short. How they hauled my 6’3″ nearly-dead weight frame into the club and kept me upright on the dance floor for three hours is Herculean and I learned that night that either bloke could kick my ass if wanted, even when I am at full strength. Very humbling, although it did make me feel very safe and protected. This was important.
The three hours were the worst three hours I’ve ever spent immediately following a meal at Trombino’s while dressed up like a prom date drunk on steroids. It couldn’t end soon enough and it didn’t. The saving grace is Michael and Geoffrey were true to my demand and I wasn’t hit on all night.
Finally, my upright misery could turn into prone misery as Michael and Geoffrey ferried me back to my house and the safety of my Blanket Fortress. It was the first time I was out of the house in over three weeks, and truth told I didn’t hate being out of the house. This is entirely credited to the love and caring Michael and Geoffrey showed me. This sort of adoration is energizing I’ve come to appreciate in my very best friends.
Collapsed in the back seat of their Prius, I forcibly mumbled out, “Hey, guys. Thanks for getting me out of the house. And really thanks for honoring my wish. No one hit on me all night and that means everything. Thank you.”
Michael looked at Geoffrey and Geoffrey looked at Michael as if thumb wrestling to decide who would acknowledge my gratitude. It was Michael who lost.
After leveling that devastating full-body ego slam, my friends stayed the night to make sure I didn’t kill myself.
It was one of the best nights of my life.
Kindly reprinted from Steve’s Thoughtcrimes.
Please tune-in to this incredibly difficult and exhausting SUTS Podcast episode where I detail why I no longer trust the Albuquerque Police Department to know how to deescalate peers in crisis.
I did have the professional courtesy to inform my former APD colleagues when we posted the podcast.
Sharing my story with the love and support of my friends and family is my first step to reempowerment after silencing myself for months. I’m proud of this episode.
As soon as there are no more uncomfortable truths, there is no need for Stand Up To Stigma.
Sharing my story with the love and support of my friends and family is my first step to reempowerment after silencing myself for months. I’m proud of this episode.
Having been attending STS support groups (formerly DBSA Albuquerque) since October 14, 2010, I’ve heard said, “All I could do today was take a shower. I was exhausted. I feel like such a failure.”
I’ve heard similar words out of my own mouth, although mine was more akin to “All I could do today was make it halfway to the toilet from my bed, decided I wouldn’t have the strength to lift the toilet seat if traversing the entire remaining distance, so I moistened the carpeted floor over which I stood, and then my knees buckled from the exertion of urinating, never making it back to bed, and lightly moistened myself. Big win!”
Thing is, that was all the strength I had that day. Every. Last. Ounce. Of. Strength. Getting halfway to the bathroom took all the effort I had that day.
Contrast that with a few months on, and I’m training for a marathon. Truly. And that was the strength I had that day. Every. Last. Ounce. Of. Strength. Training for a marathon took all the effort I had that day.
Let’s say it together.
And let’s have me counter immediately this fallacy.
Why, that makes no sense, says some. How can I make such a claim?
This is because, as a peer, I measure my accomplishments in terms of “effort.” If all the effort I have gets me halfway to the bathroom from the bed, it is EXACTLY equivalent of all the effort I have to train for a marathon. It’s the magnitude of the effort, not a qualitative “that is so much more than this” stigma.
Where I’m going to with this is to say to my fellow peers, pat yourself on the back, on the front, on the arse, wherever, because any accomplishment that expends all your effort for the day is HUGE!
I don’t beat myself up any longer, with “Geesh, I’m pathetic and weak. Why am I so exhausted?” I’m exhausted because I put every last bit of effort I have in me into whatever supposedly pathetic, weak task I accomplished. Some days, it’s making it to the toilet and back into bed. Some days, it’s pushing hard so I can beat a three hour finish time on the marathon.
Give yourself credit, peers. You didn’t ask for this life, with a brain condition that determines how your effort can be expended that day. Give yourself credit because you accomplished something amazing.
Self-disclosure. Before losing Clare, I felt I had unlimited reserves of effort. Nowadays, just making it to STS support group takes everything I have not to stay home and isolate instead.
Measure your deeds in the amount of effort you put into it. It’s that magnitude of effort that defines your accomplishment. Such as, reading through this entire article wondering if my meds are working properly. I know how much effort this takes. I’ve been told so very many times.
Have you ever had a sibling you just couldn’t get along with and always bickered with and even though you were at each other’s throat you could still sit down at the family dinner table and love each other anyway?
This is nothing like that.
I am so aware of my reputation in the behavioral health community as a brash, diagreealbe peer advocate who turns people off because I am quick to challenge established protocol and quicker to express peer needs in blunt, direct terms. And my reply?
You see, I didn’t start out in behavioral health advocacy to make friends with the world and attend hugfests in a peer-hostile echo chamber. I started out in peer advocacy because I had friends in DBSA Albuquerque who didn’t even know how to apply for Medicaid (nor did I) and these friends desperately needed services and medications. Without insurance, this doesn’t happen. So, my friends suffer needlessly. They suffer. And I watched them suffer. Every week I watched them suffer. So why did I start attending meetings like LC2?
Some eight years later, I’m still out there finding answers. Better, I’m out there creating answers. The State of New Mexico gave me this Lifetime Achievement Award in Behavioral Health Innovation I think in part because . . . I have no idea why they thought I’ve accomplished everything I’m going to do by age 46. Am I supposed to stop living now? Weirdness.
In any case, with the help of my friends, we endeavor to help others understand our needs by sharing of ourselves and our life experiences. In this, we have the best opportunity of reaching Muggles, policy makers, providers, legislators, and the community. In fact, this is what Stand Up To Stigma is ENITRELY built upon. Peers openly telling tales of challenge and triumph to help others understand . . . by way of sharing their stories living with mental health issues.
As an important deviation, grammar style guides insist that all numbers between zero and ten be fully spelled out and not expressed with the digit character. Given the example above, “Some eight years later” is proper. “Some 8 years later” means you were too distracted from learning because of passing notes in first grade of the ilk “Do you like me? Yes. No. Maybe.” It must lag hard you got so many “no” notes passed back. Jenny Caruthers’ reply included a sketch of her vomiting all over your head. She showed me. That must be traumatic, any time a woman vomits in your presence. And then draws it. And sends it to you. I know this happened in the Cottonwood Mall food court on Sunday. It’s on YouTube and viral. Go check. You can run away from my blog but you can’t run away from the truth.
Hey, did you know that the beautiful bosque cottonwoods were not always as lush and established as now we enjoy? Farming upstream in the San Luis Valley of Colorado led to increased siltation and seasonal flooding as the Rio Grande passed through Albuquerque. The result was hyperalkaline swamps along the banks of the river making once-profitable farming in Albuquerque a historic relic beginning in the late 19th and early 20th centuries. Read up on Aldo Leopold and the Middle Rio Grande Conservancy. The reclamation he developed and initiated not only saved farming along the Rio Grande, it also provided the ideal habitat for lush, dense cottonwood forests along the Rio Grande. And, we got Tingley Beach, the Zoo, and the Botanical Park out of the deal. And a country club. And a path for Route 66. Speaking of cool historical stuff to read up on, research the history of Conservancy Beach … Municipal Beach . . . Ernie Pyle Beach . . . Tingley Beach before the polio fright in 1951. By all accounts it was magical.
Get this. I embrace my controversial slash & burn advocacy stylings . . . much like I embraced Jenny Caruthers behind the handball court and then told you about it right after recess in algebra class . . . because I’m proud of my ability to weather either reciprocated or reflexive defensiveness from those who tug gently the strings of peer wellness. It’s the frustration of penetrating the geometric din of the peer-hostile echo chamber (PHEC). Frustration. I’m sure destructive interference resonance within the PHEC is annoying. It’s natural to experience something you don’t want to hear as combative. I fault no one. I offer to embrace you if it helps you empower yourself to feel better.
By the by, my primary emotion at many behavioral health meetings is this frustration. It is not the emotion of pissiness. When I see my friends suffering and when I attend a meeting voicing their issues, concerns, and needs and join my friends later sharing that we’ve made no headway, I don’t feel like a very effective or successful peer representative. And by the by again, the honor of peer representation is often mistaken for showing up and being a peer placeholder. A dedicated representative listens to friends and represents THEIR issues, concerns, and needs. And ultimately, what is represented is our peer solutions. And by the by once more, it often feels like I’m talking in some weird moonman language. There must be moonman prejudices on these committees. I heard rumbles of building a wall between the US of A and the moon. For shame.
We’ve done a Stand Up To Stigma podcast where I share openly – with the support, encouragement, and love of my dearest friends – my experience with PTSD borne of my choice to be on the Mental Health Response Advisory Committee (MHRAC). The motivation for the podcast was for me to reempower myself through personal accountability and responsibility and create the effective reality of taking back the power I gave others on loan. The gift is as a team member of an independent peer collaborative I no longer am required to ask for permission to do what’s right in my heart and the hearts of my friends. The greater gift is our community now has a pure peer voice guided by this benevolent principle:
Our Stand Up To Stigma peer focus group is trained, is activated, and is coming to MHRAC. And we’re excited for the opportunity we’ve created for peers. We’re moving into the community. We’re offering our voice. We will share with you the solutions that will work best for us. Free of charge.
I’m happy to share I’ve come to terms with my PTSD symptoms. I’m happier to say I’ve reempowered myself. I’m happiest to say I’m back to the person I know I am. I’ve missed everyone so much it hurts. Let’s embrace.
By the by, this article is just a little tongue in cheek. Only just.
Reprinted with kind permission of Steve’s Thoughtcrimes.
Stigmatization is a cruddy reality for those contending with the symptoms of illnesses, mental and medical alike. There’s a group of terms affiliated with stigmas I really don’t like in the least, the most, and all points betwixt:
I’d like you to look at this photo of the NAMI Challenger. The front page article is one I composed during my time on the NAMI Albuquerque board. I ask you to look at this photo and remember it because when we travel full-circle back to “in the closet, “coming out,” and “outing myself,” the importance of this image will make sense.
So, I’ve got a buddy who is deaf (“Big D” as she calls it), and she is not the best at “reading lips.” That’s great for Hollywood scripts, she tells me, but not so great for actually carrying on a conversation. There are two things that bug her about people:
1.) When they raise their voices to talk to her, as if shouting will bring her hearing back.
2.) When people think she’s stupid, as in intellectually deficient, because her speaking voice is different than those of us whose ears collect noises and whose brains interpret the noises as sound.
These stigmas, when she was young and soon after she lost her ability to hear, had her hiding from the neighbor kids who were once her friends. After the accident that took her hearing, these “friends” became cruel, taunting, and vicious in the teasing and gossip they spread into the community that the accident made her stupid and deaf. She just wanted to hide, she just didn’t want to be with people anymore, she just wanted to die.
Now, she is a strong peer voice in the hearing impaired community (and I use the word “voice” purposely, and she likes it a lot), and she works with children with hearing impairment sharing her life stories and experiences to hopefully spare them the feeling of worthlessness and self-doubt that comes from being stigmatized.
In our chats, I shared with her that I, too, had feelings of worthlessness and self-doubt tied to my bipolar. I had a friend of two decades who stopped calling (after my wife… ex-wife now… told him I had a mental illness), I’d been fired from job after job, my marriage was a disaster and a failure, I’d been kicked out of New Mexico Tech… what I thought of myself was equivalent to what I thought of dog squeeze on the bottom of a nice pair of Nikes. I dreaded that point where someone caught whiff of me and tried to wipe me off on the lawn, the entire time cursing they ever met me… and the bottom of their shoe.
Stigmas abound beyond only medical and mental considerations. I gave a presentation to a group of kids at Polk Middle School earlier this year, and part of the presentation is asking the kids what stigmas they contend with in their lives. The typical teen-angstiness identified “We’re always on our phones,” “Everyone thinks we’re lazy,” and “All we think about is boys/girls.” I think they meant teen crushes, but I didn’t explore that one.
One young man shared a stigma that broke my heart. And, I could sense when he shared his stigma with the class that there was an implicit understanding with his peers:
The quality of this stigma, the impact it had upon the class, was tangible. It was real. It was beyond “always being on the phone” or “being boy/girl crazy.” A young lady followed up saying “That’s why I never tell anyone where I go to school.” Too many of her classmates nodded in agreement.
That sense of accepted worthlessness is something I realize and understand is part of any marginalized group’s mainstay. It’s a community bond built upon a foundation of presumptions, misconceptions, and lies. These kids believe that people think less of them because of where they live, and that this stigma they overwhelmingly feel is part of their identity is a preordained limitation on what they can accomplish. I’m not too proud to say I started tearing up when I heard the kids speak about this unfair assumption.
The word “unfair” is thrown out there so much and so often that it’s all but lost meaning. It’s unfair I have to wait until Sunday to see Force Awakens. It’s unfair she got to go to the company picnic while I had to stay at work and finish billing reports. It’s unfair he buys a brand new car every year and I’m stuck driving this clunker. Given these qualifications for “unfairness,” it’s easy to see why “unfair” is a nearly worthless word.
Yet when you hear from these Polk Middle School kids, the word “unfair” is afforded a clarity all but lost in the vernacular, that the magnitude and direction of vectored fairness is so real and succinct that stigmatization is unavoidable. These kids were all a part of a leadership class, and there is no mistaking why they were chosen for this class. Their leadership talents define them so much more than the geographic locality of their community.
That’s the crux of stigmatization. It is unfair and immediate, created by an unenlightened, self-appointed mob judiciary over generations. More than that, though, is stigmas become so pervasive and saturating that the people being marginalized come to accept the prejudice, and when this happens stigmatization mutates from prejudice to shame.
What is shameful about living in the South Valley? For me, it’s a gorgeous place to walk the old trails and follow the irrigation canals between neighborhoods. The history and culture are rich and so much more a part of New Mexico’s identity than my tract housing neighborhood. For some reason, though, kids living in the South Valley are ashamed to tell other kids where they live and where they go to school, and this is baffling to me. If anything, being part of such an important community is a trophy of pride and not shame.
Looking at different stigmas, and looking at my own life living with bipolar and how I’ve often devalued myself, there is a common link expressed almost universally by marginalized groups:
In fact, the shame is so powerful that people feel they have to hide themselves from public view and scrutiny. My Big D friend hid from kids who used to be her friends. The young lady from Polk Middle School won’t tell other kids where she goes to school. And me? I pretended that I was “normal” and dreaded that people would see the symptoms of bipolar that alter my behavior so detrimentally (read: I’m weird, I know it, and I hope nobody notices me because I just can’t handle another failed job, failed relationship, and failed self). I was ashamed of myself for having bipolar.
“In The Closet,” “Coming Out,” and “Outing Myself.” We touched on this at the beginning of this article, and as promised we’ve gotten to the reason I started the article talking about “in the closet,” “coming out,” and “outing myself.” This is a concept attributed initially to the LGBT community (I don’t know the full acronym any longer – please send me the entire list of letters if you know it and I’ll edit the text). Being “in the closet” was being homosexual and not sharing this with others. There are valid reasons for this, with the policy of the U.S. military being a fine example. “Don’t Ask, Don’t Tell” was actual policy and not just a catch phrase. Serving our country, protecting our freedom, rights, and liberty meant you couldn’t tell anyone you are gay. Where’s the logic in that? And yet there it was, and it was a policy that if you wanted to commit yourself to serving our country, it meant you couldn’t be homosexual, of if you were, you were required to hide it. It’s shameful to be gay while serving our country. It was official federal policy to keep people “in the closet.”
Now, stating proudly “I’m a guy who likes guys” or “I’m a girl who likes girls” is part of our American culture. Being “in the closet” has become more passe than “coming out of the closet.” Yet, the term remains. To share with those you love that you are gay still entails the idea of “I’m coming out of the closet,” shortened as “coming out,” and the choice and act of leaving “the closet” as “outing myself.”
I don’t like “in the closet,” “coming out,” and “outing myself” in word and concept, and this goes to the etymology of the phrase. The connotation retains the artifact consideration that “coming out” or “outing myself” meant I was hiding something that I felt was deeply shameful, and that I didn’t like who I was based upon others’ presumptions, misconceptions, and lies about what it is to be someone with bipolar.
I don’t like “in the closet,” “coming out,” and “outing myself” with such directed, purposeful zeal that it is part of my peer advocacy playbook. I don’t feel like I’ve “come out” to the public to share openly that I have bipolar. When I decided to start speaking in public about my challenges and triumphs living with bipolar, I wasn’t “outing myself.” I share openly that I have bipolar because I like who I am, and I’m hoping that my openness can inspire other peers to have the innate pride in themselves that every person on the planet has a right to.
Exactly like with “journey to recovery” versus “recovery journey” (I NEVER say “journey to recovery”), I NEVER say anywhere at anytime that me sharing my life experiences with others is the a process of being “in the closet,” “coming out,” and “outing myself.” You will NEVER hear me say “I’ve come out of the closet as someone with bipolar, and when I did I outed myself and you can, too.”
Why? Because while I felt inferior at the beginning of my recovery journey, and I felt I had to hide my shame away, the way I feel about the world and my place in it has evolved dramatically, and I’m exceptionally proud of who I am, and part of that is being a peer and a peer advocate. When I first began this peer advocacy phase of my recovery journey, I discovered in myself that I had no shame of having bipolar and I didn’t feel I had to hide my bipolar symptoms. There was no “coming out.” I didn’t “out myself.” There was only me sharing my life experiences with others in a celebration of life and all the quirky nuances that is the human condition.
So here is that photo again, zoomed in on a very specific sector of the article. “In the closet,” “coming out,” and in this article “outing myself” is not part of my vernacular, and I actively advocate removing “in the closet,” “coming out,” “outing myself” from the vocabulary of my peers.
That “outing myself” is presented in italics is a good indicator that my original article met with less-than-adept editing skills prior to publication. Sorry if anyone got the wrong impression, which many peers did at the time questioning, “Steve, ‘outing myself’ doesn’t sound like something you’d say.” Exactly. And please notice the “journey to recovery” kicking off the article as well. I covered this in an earlier “Letter to the NAMI Editor” article. “Journey to recovery” and “outing myself” in the same initial paragraph of my article are not my words or what I submitted for publication. Quality control and professional editing was not a priority for this issue of NAMI Challenger, so let this serve (vanity press) notice in lieu of a wordy editorial retraction in a future issue of NAMI Challenger.
If you’d like a copy of this NAMI Challenger issue, I’d highly recommend this specific issue. There is a very good article on WRAP, and a free WRAP class is taught at the NAMI Albuquerque office every Sunday.
Okay, so here’s the rub. I’ve learned a lot about myself as I understood more about stigmas. For you, I share a pocket-size version to take with you:
Dedicated to Mary Tabor, for without your warmth, leadership, and encouragement this article would not be possible. Thank you for everything!
Reprinted with kind permission of Steve’s Thoughtcrimes.
There was a seven month window in 2015 where I dedicated a bunch of my volunteer peer advocacy hours to helping out on the NAMI Albuquerque board. It was best of times, and it was the best of times. See how chipper and chock full o’ golden sunbeams I am?
Jim Ogle, the then president of our crew, was a tireless champion for behavioral health legislation designed to help peers and their families and friends. He’s the dude who brought me on to the NAMI Albuquerque board. Jim rocks.
Our first project together was the Community Engagement Team, which I will talk about at another time. Always with the “another time” rhetoric. Look, I’ve got a few decades of bipolar experiences tucked away inside of my Bag o’ Wisdom and the anecdotes aren’t going nowhere. Patience, Grasshopper. My Kung Fu is stronger than yours.
Tireless. Jim was tireless. He still is tireless. He’s a committee chair for legislation at NAMI New Mexico nowadays. Tireless. Without tires. Like the cliche redneck tireless truck on cinder blocks on the weedy front lawn where the ratio of weed to lawn definitely favors the weeds. Tireless. I hate myself for starting this article with a pun. Puns suck.
Apparently, I love to write. Steve’s Thoughtcrimes has been live again for about 12 minutes now and I’ve pumped out a good half dozen articles already, each rivaling the collected works of Charles Dickens in length and content, only people will enjoy reading my blog. Dickens also sucks because he relies heavily upon puns. “There’s more of gravy than the grave about you…” Idiot. Lazy writer and an idiot. Puns. Sucky sucky puns.
Back on target: During my tenure on the NAMI Albuquerque board, I submitted three or four articles for the recently-in-limbo NAMI Challenger, our affiliate’s physical newsletter that is in transition to becoming a reality again from what I’m told. The articles I submitted are good articles, with topics like the Community Engagement Team (mentioned earlier), Minds Interrupted (mentioned now), and NAMI’s Peer To Peer (also mentioned now).
I am proud my articles were chosen for publication. I am thrilled with how many folks still approach me at behavioral health shindigs to talk about what I wrote. It’s cool beans, the coolest of beans. However, here comes the “however.”
However, the editorial quality control was somewhere between indifferent to ineffective. Shall I explain? Let me do so through the magic of “The Letter to the Editor” I never got around to sending.
To be fair (because I am always the epitome of tolerance and justice), the editorial staff was in great flux during my tenure, and Felicia (our treasurer) was the only one on the board doing anything to keep all the balls in the air and all the plates spinning on sticks without any of it crashing to the ground. Sigh. Tired metaphors. The point is Felicia was doing tons of work and that there was no oversight of our Challenger editor is not her doing.
Okay, let’s get to my Letter to the NAMI Albuquerque Challenger Editor.
NAMI Albuquerque Challenger editor:
As an editor, you are tasked with handling words. That’s the distilled job description. Editors handle words.
I’ve been an editor many times through the years. Looking back, my first editorial position was stealing like/love letters from my 3rd grade classmates, spicing them up a bit (as a 3rd grader, “spicing it up” was akin to “and I want to kiss you on the mouth with our eyes closed”), and then giving them to the intended recipients. Granted, this was more “being a jerk” than “being an editor”, but how appropriate the unintended parallel between “jerk” and “editor” I made in third grade to how “adult editors” behave?
Let me give you an example from my own days as an editor of our college newsletter.
We had a dude named Chris Becker who was getting ready to defend his PhD dissertation, and he asked me if I could include his abstract in our school newsletter so he had something in print with the college’s name on it to send to his mom and dad. Sure thing! Chris and I played volleyball together, and he was a fellow geology student, so you bet, Chris, I’m thrilled to post your abstract to the newsletter.
As many editors are keenly aware, there are a finite number of words you can cram into the pages of a physical publication. Sometimes, snipping even a few letters here and there (not even whole words) can free up real estate on one page so words will fit on the next page. Handling words. I was handling words.
Part of Chris’ abstract dealt with iron oxidation and iron reduction in sedimentary lithologies, with localized iron reduction spots in rocks being the result of carbonaceous biotic material like plants and dinosaur poop.
There are two types of iron:
Fe+2 – Oxidizing iron – Ferric
Fe+3 – Reduction iron – Ferrous
Now, “iron is iron”, right? How can the type of iron make a difference, and more importantly, how can using “ferric” and “ferrous” make a difference? I mean, other than ferric iron carries oxygen to the myriad of cells in your body on its way from the heart (it’s red, and it’s ferric) and on the way back to the heart the blood is without oxygen and won’t counterproductively strip oxygen away from the cells during this return journey (it’s blue, and it’s ferrous), and that our ability to live is predicated on nature providing us ferric and ferrous iron, about the only real, important difference is “ferrous” is one letter longer than “ferric”. And since Chris’ abstract inefficiently uses “ferrous” four times, heck, total bonus. I can free up four letters for use elsewhere making the edit from “ferrous” to “ferric.”
I’m a brilliant editor! Four letters! Enough for a four letter word in another article! “Pump.” “Cats.” “Full.” “of.” “Lead.” All four letter words. Sorry, I took liberty with “of” which is not a four letter word. No matter. I’m editor!
The newsletter came out. I proudly delivered a copy to Chris myself. He read the article. He turned red (a ferric emotional reaction, perhaps?). Chris had many four letter words for me. So many. So so so many.
For scientific accuracy, the difference between “ferric” and “ferrous” is like the difference between “man parts” and “woman parts” when choosing a romantic partner. It matters. It’s not just an edit of a few letters here and there. It’s completely changing the purpose and credibility of the author’s intent.
Chris is my friend, and I felt so horrible. I had to take him out and get him drunk that night on my nickel so he would slur his words and I could no longer decipher which four letter words he was using any more.
Where did I go wrong? Let’s see. I changed the words of the author without asking, although as editor it was my job to handle words efficiently and this fell under my purview. More crucially, though, I didn’t check with Chris after I changed these words.
This is the perfect example of editing without self-oversight, and I learned two very important lessons about being a responsible editor from this experience:
Had I followed these two rules of being a responsible editor, I wouldn’t have made such a huge blunder. And, I wouldn’t have had to use a good 500 characters in the next newsletter printing a retraction.
This ends the analogy and exposition segment of my letter. Let’s move to the issue I have with how you edited my article. Let’s move on to the point I’m making.
As a behavioral health peer advocate, I choose my words with great care and deliberate forethought. When I submit an article for publication, even though I’m exceptionally “wordy” and love things like nested prepositional phrases, I will all the same choose very specific words for very specific purposes to convey a very specific point to share a very specific message.
There is a huge difference between:
Since you seem unaware of how important of an advocacy talking point this is to me, and that I NEVER use “journey to recovery” in articles, public presentations, and behavioral health events, I’d like to educate you on this vital difference so you will not make the same error again with another peer’s article.
A “Journey to Recovery” implies that recovery is a destination, and if I work hard enough on myself I can reach recovery and be cured. To me, this is a ludicrous idea that does not speak to the reality of having a chronic condition like bipolar.
Conversely, my using “Recovery Journey” speaks to my managing the symptoms of bipolar. I do this through a proper medication regimen, exercise, diet, sleep schedule, playing my ukulele, tormenting my rabbits by shaving them and then petting them with steel wool (joke… I’m getting bored with writing but don’t want to take a breather), regular socialization, peer support groups, peer advocacy, and just keeping track of how my mood is doing.
Every day of my life for the rest of my life I am on this journey. Every day I’m in recovery. This is an important message I share with peers in my advocacy efforts. It is central to my advocacy.
It’s not an argument of semantics or “being touchy.” I am known and respected by our peer communities, and I am loud and obnoxious in my advocacy (some say “slash and burn” advocacy, although I prefer “If you people would stop and listen to me and my friends I wouldn’t have to drive my point home over and over and over” advocacy), and because of this I must be exceptionally responsible and aware of the message I present to my peers.
I am in a privileged position of being able to help guide my friends in their recovery journey through sharing my experiences in my own recovery journey. I speak regularly on exactly why I don’t use “journey to recovery” and insist on stating I am on my RECOVERY JOURNEY. Honestly. I’m a total, complete, and utter pain in the neck about this.
Do you know how I came to learn of your editorial error? A friend called me and said, “Steve, you didn’t write ‘journey to recovery’ in your Challenger article, did you? That doesn’t sound like you.”
This sentiment was echoed by quite a few more friends over the following week. Recovery journey, not journey to recovery. It is important to my message, it is important to my advocacy, and it is important to me as a peer with bipolar.
I have bipolar. I will always have bipolar. I will always have to manage the symptoms of bipolar. This is my recovery journey.
I need to be absolutely clear about this:
Had you sent me your incorrectly edited version of my article prior to publication, this error on your part would have never made it to print.
I’m a solutions kind of guy and will be presenting a proposal on how to professionally and responsibly manage our affiliate’s Challenger newsletter at our next board meeting. I welcome your input by inviting you to the NAMI Albuquerque board meeting.
Chair, NAMI Albuquerque Peer Action Team
President, DBSA Albuquerque
Ed. note: I know this letter was kind of saucy and bordering on condescending (and I can’t fib and say it wasn’t therapeutic to an extent… even though my calmer head prevailed and I didn’t send this letter), although I ask for you to consider that the editor made this “revision” by request of another NAMI Albuquerque board member who knew it’d bug me.
Ah, to be adults and in love/hate.
I’ve got bipolar. It’s a fairly straightforward, mundane flavor of bipolar with the ups and the downs. Way up and I’m driving to Nova Scotia in three days from Albuquerque, whilst my kidnapped roommate scribbles a “Being Held Against My Will. Call Police. Please Help.” on the back of a Howard Johnson’s napkin, plastering it against his passenger side window for passing motorists to glance at and ignore. Who wants to help a kidnap victim jetting along at 75 mph? By the time they called the police (these are the days before cell phones where really effort needed to be made to “call the police”), the poor kidnapped roommate would be 200 miles down the road where we could have turned off anywhere going to any place. Like Nova Scotia. In three days. From Albuquerque.
Way down and I’m not getting out of bed, barely feeding myself, and I’m debating the necessity of a bed pan as a convenience or merely an unfortunate middleman.
Something else happens when I get exceptionally depressed. I get psychotic. This is no mood disorder thing. I enter a reality no one else can see or hear or taste or understand. My brain has decided that depression is just not fun enough, like a girlfriend who decides a new apple red Miata would go great with the 20 carat diamond engagement ring you just got her by eating ramen and forgoing dental visits since your very first paper route, scrimping penny by penny just dreaming about the day you meet that ungrateful gold digger of your dreams.
This is the girl I married. Susan. Social climber, social debutante, social parasite. The majority of our relationship was spent with me being undiagnosed with bipolar. The symptoms were all there. It was the diagnosis and treatment that were missing. And the love. There wasn’t a lot of true love there. Not the type of love humans typically had for each other. My love for her was more like the love a neglected Chihuahua shows the person who occasionally throws wilted kale leaves into the garage, and lives most of his life in a mouse-chewed Adidas box in the back corner of the garage, and the single garage lightbulb burned out in 1992, and the Chihuahua was born in 1994 in that Adidas box with his seven puppy brothers and sisters, and the Chihuahua was the only one to survive birth, including his mother, and the corpses of pups and mum were never removed or noticed, and kale leaves were not on the menu for the first two months of his life and yet the Chihuahua wasn’t undernourished until his third month of life…
I grew to hate kale.
And the ex-wife, she had this to say to me during the divorce:
“I only loved you when you were successful.”
Our power couple name mash up was “SusanateluciferwholeandnowlordsoverhellSteve”. Not quite Bragelina or Bennifer in brevity or intent, but there it is.
So psychosis. I get supermega-depressed and I go psychotic. Full bore, engine in redline psychotic. Typically, this manifests as delusions and paranoia. During my divorce and the endless court dates to fight for custody of my very favorite son (my only son), my psychotic symptoms reached a new zenith, a trajectory even Icarus would envy.
The court battles sucked. The proto-ex-wife sucked worse. And she was kicking my ass in court. I couldn’t figure out how she knew so much of the strategy my excellent attorney engineered, but dude, it was like she was in my head, which I know is impossible because my skull was both lead and niobium-shielded. Yep, I was already well on the way to Disney’s Dimentialand. Every character there is named “Goofy.” Too easy. Sorry. Better joke writers for the next blog post.
So one early morning, around 2 AM-ish, I finally figured out how she was getting all the “insider information” she was using against me in court. If there was no way for her to penetrate my mind (because lead and niobium thwart pure, unfiltered evil very effectively), obviously my mind must be broadcasting my thoughts to her. Obviously. And it was the neighbor’s tree that was amplifying my thoughts and broadcasting them to the soon to be ex-wife. Obviously. Clearly. Variance denied.
I’m a solution guy. I’m all about creating my own solutions. The neighbor’s tree was broadcasting my thoughts. If my neighbor’s ham radio array was broadcasting video of me in the shower (I’m sure it was), what would I have done? I would take out that radio array. I’d topple it. I’d kill that broadcast suddenly and definitively.
A tree is very much like a ham radio array. Only it is alive and it’s made of wood. To kill the broadcast, the tree must die. The tree was like Jenny Picket in fifth grade who gossiped a lot. Jenny needed to die, too. But that’s hyperbole. You hope. I hope. Where was I?
Right! The tree had to die. And seeing as it was made of wood, I had the perfect instrument of “arborcide.” My camping axe. So at 3 AM-ish in the morning, I chopped down my neighbor’s tree. It had to be done immediately at 3 AM, before the soon to be ex-wife could wake up and start taking notes again. Guess what? I felled the tree… and the broadcast stopped!
Funny thing happened, though. When a tree thought-broadcasting array stops transmission, the Albuquerque Police Department picks up another form of transmission I understand is termed “The Neighbor Who Owned The Tree Called 911.”
That’s a tangential story. Enough for now.