Mental Illness, Shame, and the Art of Asking – 2016 Edition

#LisMentalHealth week is an initiative started by my good friend Cecily Walker and Kelly McElroy. You can follow along on Twitter, add resources to the Google doc, or check out the Storify of Monday’s chat.
Dear Internet,
If you’ve been reading (or following me on social media), it’s no surprise I’m open about my mental health. I talk pretty extensively on being bipolar (especially since I’m bipolar one which means I creep towards mania than depression), mental health in general, borderline personality disorder, adhd, depression when I get it, anxiety, and about my drugs, shrink, and fuck, probably a lot more I’m forgetting.
While I try not let me be these diseases, so much of what they do is an integral part of my life, it’s very hard to talk about them in some sort of context, “I’m being cray today. Ugh!”
So here is a week where I can talk freely and abundantly about my brain with professionals in my chosen career only to find as I opened up this editor to write — I am stumped on what exactly to say.
Three years ago (!), spurned by a TED Talk by Amanda Fucking Palmer, I wrote this piece: “Mental Illness, Shame, and The Art of Asking.”
In case you missed it, here is Amanda’s talk:
What I said three years ago

Yesterday, I was part of a panel at MSU Comics Forum where we gave a presentation on Golden Age: Comics and Graphic Novel Resources in Libraries. Our schtick is to present on this topic at non-library conferences because we knew it was important for artists, writers, creators, educators, and comic book lovers to be aware of what/how libraries are doing with comics and graphic novels. Within the library world, it is a given. Outside the library world, not so much.
While prepping for my talk, I was debating on whether or not to mention I was bipolar and relate that to graphic novels available on the topic. If part of my argument is graphic novels should be in libraries is because they help broach difficult topics, is this not a difficult topic and ergo a perfect example? The other question that would be asked is what kind of obligation do I have in mentioning I am bipolar to anyone about anything? Why does the onus fall on me?
This debate went on in my head up until I took the podium.
When the slide came up I had earmarked to mention being bipolar, I found myself just saying it as naturally if you please:
“I’m bipolar. I’ve had several friends who’ve read Marbles: Mania, Depression, Michelangelo, and Me and say to me, ‘Okay. I understand what you’re going through. It was eye opening.’ And this is perfectly illustrates how graphic novels and comics can help broach difficult topics.”
Several heads in the audience nodded with agreement.
In the space of a few minutes, I had negotiated in my head the trust relationship between myself and the audience. I gave myself permission to be candid. The floor did not open up and swallow me nor did fire come reigning down the heavens.
While I was feeling manic up until that moment, and then the world shifted into focus. When my 15 minutes was done, I felt my body relax for the first time in weeks.
Before watching AFP’s talk last night, I had not realized the mental negotiations taking place in my head about having a mental illness were about exchanges in trust with whomever. Oh, not you Internet, but with those in contact of my daily life, who don’t follow me across the social sphere or read this blog. There is a price tag on honesty, and on revealing, one that was too high in the past to contemplate, and one that is constantly always under scrutinizing but is becoming easier to negotiate.
AFP rationalized it is not about taking a risk, rather it is trust. Shame comes in when those not part of the negotiation attempt to criticize it. I am currying trust with my readership by telling them about my crazy, but someone who doesn’t read my blog, or know me, starts to make judgements on the already established link between me and my readership, they are installing shame on the affair. Anything different is open to criticism and this needs to change.
My name is Lisa and I am bipolar.
It needs to be said, it has to be said, I will continue to say it.

That piece still sums up what I feel today, except when it’s not.
Bipolar can be controlled with drugs and therapy. I’ve been on the same cocktail for over a year now and 9 times out of 10, life is pretty even keel. Now Borderline Personality Disorder is taking center stage, rearing its ugly head and that has been running my life for the last year+.
BPD has ruined a lot of things with the most current such as TheBassist1 breaking up with me not because he didn’t love and want me, but because I was a flight risk2 and will always be a flight risk until I got my shit together.
BPD has ruined not only romantic relationships, but platonic relationships; it’s distorted my world view; it’s fucked a lot of things for me and sometimes I feel utterly and completely out of control. “I hate you, don’t leave me!” “Everyone hates me; I’m the greatest thing since sliced bread.” “I have made a mistake somewhere and now I will be shunned/fired/etc.”
Coupled with being bipolar, I’m often surprised I’ve made it past 40. Hell, past 30.
I talk a lot about the domino effect which has plagued me these last few years. But what I haven’t discussed is exactly how that affected me on a much more personal level:

  • The #teamharpy case has made me a leper in the library world
  • nina and I racked up $15K in legal fees
  • I ran myself into $40K credit card debt between September 2014 and June 2015
  • On paper I’ve been homeless, on and off, since October 2014
  • I’ve had several breakdowns, starting with a long period of mania that lasted for about six months, then a bout of depression, back to mania, which finally came to a head in October when TheBassist broke it off with me.
  • From October to mid-December I rarely left TheExHusband’s condo or got out of my jimjams or did any kind of self-care. I ugly cried nearly every day
  • I’ve rarely smoked more than a couple of cigarettes a month until this past summer where I’m coming up to half a pack a day
  • While not suicidal, I’ve been in crisis at least twice in the last year

I’m probably missing a few things but this is the laundry list of ills that have been the albatross in my life for the last 18 months. A lot of these are my own choices, “If only I had…”

  • …used the word ‘alleged’ in that fucking tweet
  • …stop spending money on useless shit since I don’t have a job
  • …stopped denying everything was great and I was sick
  • …listened to what my loved ones said instead of thinking I could go at this alone

There are a lot of “If onlys.” Aren’t there always?
Being mentally ill is a goddamned highway with lots of on and off ramps. You make decisions based on your illness, it backfires, and you lose something important. You make a decision based on your illness, it comes up smelling of roses. You just never know how the die is going to roll and we keep taking the chance that what we decided was right.
We’re gamblers, we are. We worry by not telling anyone, we’ll not be able to get help when we need it. We worry if we do tell someone, we’ll lose out on life/partners/jobs. We worry how drugs will affect us or if self-care will actually work. We worry about the stigma, the pain, the anguish, the shame. We make ourselves sicker because we cannot disclose our sickness without fear something terrible is going to happen.
And the most painful thing? No one trusts you. TheBassist doesn’t trust me. TheExHusband doesn’t trust me. I’ve lost a lot of friends who can no longer trust me. What comes out of my mouth today can and has been either half-way true or another variation tomorrow3. It’s hard to ask for help when no one trusts you, even if they love you.
A lot of hard questions are coming up in the #lismentalhealth chat. Questions I want to be the queen of all that is mentally ill and bestow my wisdom to everyone as I have all the answers (“I am the greatest thing since sliced bread.”). I’m afraid to post because I don’t want to be seen as a scene stealer (“Everyone hates me.”). I don’t want to seem “weak” (“I can control this thing no matter what you say”), whatever that means, and I don’t want people to take pity on me even though I crave their adoration (“Don’t leave me.”). I’m a raging, sarcastic asshole towards people (“I hate you.”)
Being mentally ill is goddamned exhausting. I think this is one thing we can all agree upon.
One of the questions that did come up I can, somewhat, safely answer is about disclosing your illness to current and future employers. Right now I’m of the mindset of “No.” In my last position, because I was hell bent on being open and honest, I told my immediate boss. Within a few months, they used my illnesses against me. See the revised job description they put up when they did a call after my contact was about to expire. Look particularly at 12. They also would use verbiage such as, “Go take more drugs,” and “have you seen your therapist lately” out of spite. (Yes, I did try to get them reprimanded for such impertinence but since no one heard them, I had no physical proof…you get the idea where this going, right?) Despite the disability act/equal opportunity form you can volunteer to answer when you apply for a job, I choose “no response” to the question or I don’t fill out the damned thing at all. I cannot take the chance if someone sees I’m bipolar they will automatically disqualify me from getting a job. While this is illegal, I’ll never know since I will just get your standard rejection.
I have nothing to say. I have everything to say. I have a zillion answers. I have no answers.
I wish I did.

1. One day there will be a day when I don’t mention him in a piece but today is not that day.
2. I can’t blame him for this part of why our relationship failed this time around. When the love of you life is leaving you every couple of months and then calls you ugly crying, you’d probably cut ties off too. But that’s a post for another time.
3. Pinky swear, on my grandmother’s grave, everything I’ve written in here, my world, has been true. It may have been fucked up, crazy sounding, or depressing as fuck, but this is the only place I have always felt like my safe space and thus can be completely honest.

This Day in Lisa-Universe: 2013, 2011, 2011, 1997

we were all waving flags

Street words on the side of a church delivery door.
Street words on the side of a church delivery door.

Dear Internet,
This morning I cried because I couldn’t put on a pair of shoes.
The inability to put shoes on is not an uncommon thing, but it is a frustrating one. Over a year since my first surgery and six months after the second, I still unable to fit anything beyond flip-flops or Chucks on my feet, with the occasional foray into a ballet flat. This is made even more difficult as my right foot post-surgery is now an 11.5W while my left is a 10.5B.
I’ve been piecing out my shoe wardrobe to keeping only what fits or I absolutely positively love rather than keep everything. While I was never really a heel girl, even the ones I own and loved are almost useless to me at this point and into the pile they go. A recently purchased and rather expensive pair of flats I got at 75% off, talked into buying them via a beloved shoe courtier who silkily promised they most assuredly would fit, turned out to be a “thank fuck I did not buy these at full price” mistake. Several wearings indoors per their instruction and then the eventual public airing of the shoe found they were, after an hour or two, almost unbearable. How a pair of flats could cause so much issue with my feet is beyond me. I do not blame the shoe courtier for the pressure because they do fit at slip-on and comfortably so at that; I blame my feet for their rebeling at being fashionable.
My current obsession is finding a pair of dress boots that are flat heeled (more due to height than comfort) and can accommodate my tennis calves and odd feet. Boxes have been arriving from various vendors for me to try on — funny how I never thought of the shipping of shoes from Zappos and the like to Throbbing Manor to be similar to the receiving of gifts from my subjects but there you are — and again, the frustration at mismarking and advertising of wrong sizes and widths is causing more stress. Last winter, after the first surgery, TheHusband counted I had purchased and returned a dozen pairs of everyday boots before finally finding a pair by happenstance at the mall.
The crying this morning was not simply over the fact my shoes don’t fit, but more about this bottom of this often never ending and seemingly black oil pit I find myself in. Yes, it sucks I couldn’t wear my walking shoes to go on a walk and had to opt for flip-flops, but it’s not the end of the world. Yet to me, it was and also rather symbolic of everything going on in my life.
As I continue the tapering down of Lithium, in fact today is the first day I’ve been Lithium free, my moods have started shifting like a radiograph, even more rapidly in the last week. I started bawling yesterday reading Facebook and then proceeded to go into a several hour depression that quickly, and shockingly, emptied me of life. The black clouds descend so quickly and with such force, I felt powerless. TheHusband spent a couple of hours walking me through my feelings, which continue to be a catalog of everything I feel are to be truths:

  • Nobody loves me
  • Everybody hates me
  • I will never be happy
  • Everyone leaves me
  • I will not amount to anything
  • I will have never accomplished X,Y,Z
  • I will never have the kind of life as seen by X,Y,Z
  • I am too old
  • I am too young

This has been the same laundry list since I could remember keeping track of all of my demons.
TheHusband got me calmed and by bedtime I felt relatively able to sleep with peace. This morning however, when I woke, the black cloud was back and circling with a vengeance. Since we woke at mid-morning, the sun had been up for several hours and our bedroom was bathed in light which was even more depressing.  This blinding happiness depressed me more as the idea of staying shut in all day while the day glowed like the summer. Toss up: Stay indoors and become more depressed because everyone is seemingly having some kind of life, the world looks shiny and new OR go outside, even against your will, to at least experience what it feels like. Which will hurt more?
TheHusband made the executive decision we were going to walk Wednesday and then talk a walk ourselves. Chop-chop, wash your face, put on a sports bra and let’s go. He tempted me with treats from a local bakery conveniently located around the corner from our house if we did at least a quick jaunt around the neighborhood. Instead, we found ourselves roaming farther and longer, and the quick jaunt turned into a four mile walk in flip-flops, which ended with breakfast at a local place and some Gerbera daisies for the dining room.
We made half-heartedly plans for the afternoon, but found ourselves hiding in our offices while I read and wrote and TheHusband played video games. I was also opposed to the idea of having to put on pants for some reason, but that is not a black cloud thing, that is more of a sensibilities thing. Because, well, pants.
On occasion there will be days where I’ll get a glimpse of happiness, where I know that even at the darkest hour there will be a snap and things will become stable again. That as is before, as in the future, and as is the now, I will climb out of this slick pit of despair and change something. It’s hard to remember the positive in your life, when you’ve gotten so used to the idea that happiness is fleeting. HOW DARE YOU NORMAL PEOPLE HAVE HAPPY LIVES? Which is why I cry at Facebook. And stalk some people’s lives online because I find it so fucking hard to believe someone could legitimately be happy. SURELY, they must be faking it. Or projecting it. Or something. The world is unreal, ergo, what I am seeing is also unreal.
It’s hard to remember not everyone is like me, that feelings are felt and gone so fast, their tail is often the only reminder they are there. It’s hard to remember often what I’m seeing in other people is really a projection or a sum of their life, I don’t know everything going on in their world. All I do know, their happiness reinforces my lack of having any. It’s hard to remember a trigger by something sending me into a spiral, should not be reinforced by swimming in that sea.
And even harder to remember, no matter how prickly I may be, I am not unloved.


This day in Lisa-Universe in: 2003

She who sits foremost

Dear Internet,
When I wrote The Summer Tale on my 40th birthday, the intention was to to write more, write raw, write honest of my feelings. Work out the discord, work out the pain, figure how to move forward from that spot, harness it, channel it, make it work for me.
That hasn’t happened.
A recent Friday night, I was working on an old lady craft1 when it came to me this would always be my life. Home. Alone. Doing something that required aloneness. And then I began to panic and then cry.
Shortly after, my thoughts have turned to flight: Divorce TheHusband, quit my job, and then ride the rails. Everything we’ve been working on, dreaming for, saving up for gone in a blink of an eye. Everything good in my life, I want to leave.
I have no idea where I’d go, no idea what I’d do, no idea on cash. I’d leave everything behind, even my beloved dog.
Here is what I said to Kristin earlier today (it echoes what I verbally told TheHusband earlier this morning):

I haven’t been (using my anxiety drugs)
It’s like living in my head in exhausting
I have no motivation or desire for antyhing
I feel like this is it and there is no hope

I haven’t finished a book, listened to a song, or done anything that used to make me happy
I won’t even create something because I feel like what’s the point?

I just feel like I’m missing out on a life
that I don’t know yet

Getting tired of lving in my head
it’s not working anymore if it ever did
And I feel like anytime I try and figure thigns out the depression cockblocks me moving on

LIke with school, the hope was “Well one day I’ll have a good job and pay for things”
and then with Justin it was, “one day we’ll build a life”
I can’t deal with the day to day it seems

So everything that I dreamt about or hoped for came true so now what is THE POINT

I feel crippled.
So since i feel crippled, what’s the point. What’s the point, then might as well read the g-d intenet.

I’ve become quite the self-shamer
I’m not a good writer, why bother. I’m not/would not be a good mother, why bother trying to get pregnant. I’m not a good librarian, why bother trying to work it out.
That kind of thing.

The ellipses represent Kristin’s comments/questions and I’ve left the content in all of its grammatically erred ways. I don’t feel anxious, I just feel consistently sad. My heart feels heavy and all I can think about is flight. I need to leave, need to go, don’t know where, just fly.
During my convalescence this summer, I got really angry at a lot of my local friends for forgetting me. Some relationships were strained, some were broken, some have been repaired. But now, as we delve deeper into fall, the lack of social contact is noticeable, but now it is not because I have been forgotten by friends, it is because I am not reaching out. For the brieftest of moments, I make plans in my head of things to do: Join a club, learn a new language, take up a new hobby that requires me to interact with people other than my husband and I feel too paralyzed to move. Why should I head to X meeting when they probably won’t like me anyway. I sound like an asshole, so might as well save the effort and sit home. It’s too late to call/text X person, so why bother?
And of course it moves on: Why start a book when it probably will suck? Why listen to music when it’s all trite and dumb. Why do anything when it’s already all been done before?
In June I said,

I don’t have a desire to kill myself but I don’t feel like there is any hope. It seems that I’ve presented myself with a conundrum. Perhaps I am my own unreliable narrative for the second I had written the above, I knew it to be a lie: I want this to go away and I want to be happy.

When I can’t listen to a song, read a book by a beloved writer, enjoy a movie, or even want to see the world beyond my door, this is obviously something I cannot easily fix on my own.
I kept the business card of the therapist who worked with me after TheEx and I broke up, and I found it a few months ago. It’s been sitting in a letter holder on my desk, taunting me to call, as I bargained with myself every day to make the call but only if I felt if things were too drastic. But that is the funny thing about depression, it’s slow, wavering hold over you like a snake coiling itself up your body. You almost always don’t notice how depressed you really are until it’s almost too late.
I called him this morning and left a message. A small sense of relief? Yes. A small ray of hope.
Fight. Not flight.

1. Cross-stitching.

Bone chips and Felix

2012 x-ray of my right ankle. Yay bone chips!
I fear I am going insane.
The last couple of weeks, I have become an emotional hot mess. My mind, and my dreams, has been everywhere and nowhere at once, shifting the lines of reality and maybe madness. My thoughts have not been racing, as they were wont to do in the past, but I am having trouble focusing on any particular thing longer than a few seconds. I’ve come out of a dead sleep several times in the last month or two when I’ve thought I’ve seen or felt things in the dark, only to discover they weren’t there. Then I feel like a fool for when I tell people about what I see/heard, because I sound ridiculous. The other night, I had a nightmare bats were dive bombing the bed and I could feel the bed shiver as each bat landed on the mattress. But of course, after waking with a gulping start, there were no bats, there was nothing over head, and the only sounds in the bedroom were the teeter-tottering snores of TheHusband and the pug.
Tonight, I heard the sound of something scratching at the wood inside of the walls in my office, some kind of persistant “scratch, scratch, scratch” that sounded more like something was trying to free itself from its wooden prison, but I couldn’t find a source of the sound. The sound was coming near a joint in the window in my office, and it was loud!, but of course as soon as I called Justin in to investigate, the sound immediately disappeared. Justin reasoned it was probably a squirrel or some other varmint hanging out in the gutters and the noise was ricocheting down into the office, since my office is in a corner room. To appease me, Justin pounded on the wall around the source of the alleged noise but nothing stirred at his thumps, and nothing has stirred since he left.
In the past when I felt like I was going slightly insane, at least my insanity had a rational to it – I could manage the craziness. But this time is different, between the dreams and the sounds, because what if this all in my head? How do I manage that?
It hurts to think. Sometimes, it hurts to read. I feel like I am drowning in information, struggling to clutch on to what is important rather than what wanted. The air is murky here, because there are no clear paths for me to go, there is vague directions, and no real sign for which way for me to wander.
I need a purpose.

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