Standard Disclaimer: I am one person, fighting mental illness. I am one perspective. While I hope that my words can connect with someone in a similar situation or the loved ones of someone in a similar situation, they are not to be extrapolated to your friend who “sounds like me” and then taken to mean that your friend “should feel/act like me”.
Specific Disclaimer: I do NOT want to die. I do NOT have thoughts of harming myself or others. I am NOT thinking about a drink. I want this known in advance since many people who may read this know me more personally and may worry about any of those three items.  Also: I didn't proofread this and it is probably rambly. 


I want to tell you a story. This story is about a woman who is struggling right now [okay, this obviously autobiographical, shove off]. A woman who has not stopped doing all of the things that helped her survive and manage in her own life quite successfully for years. She is even trying to add more barriers against the darkness, yet her life and her brain are getting worse. This story isn’t so much about the getting worse, those feelings of dread and betrayal and paranoia. It isn’t about being lost in a fog that she fought through and left behind. It isn’t even really about her. It is about the people around her and the world that surrounds her and their assumptions.

This woman lives in America. In America, the healthcare system is precariously dangling by a thread right now, though it had only been precariously propped upon a precipice before that. :::shrug::: She “has access” to a number of service providers through her welfare-provided insurance coverage because she is disabled and can’t work enough to provide for herself and her family. Some of these providers are excellent. Though, it becomes harder and harder to find them in the sea of the ones who just want to shift you on to the next doctor or glance over your history while never making eye contact before rattling off an opinion.
She has waited 5 months for a referral to a neurologist. The neurologist would prefer to diagnose her condition as psychiatric without even scheduling an appointment, despite her long and continuous psychiatric care team who back the referral.
This woman lives in America, where ableism has taken new forms as people become aware that maybe people who struggle with some things are still humans. Some people are over-compensating and unintentionally now use any good disabled poster child as something that is referred to as “inspiration porn”. This falls neatly into two categories: category A is when poster-child is disabled and does something “remarkable” or manages to “manage” or “appear normal”; category B is when poster-child is not disabled but publicly treats a person with a disability [or any marginalization really] with the respect and dignity one would afford any “normal” person. [The use of quotations around normal is intentional, as my brain isn’t functioning so well these days and I don’t feel like attempting to rattle off all of the terms for people who aren’t disabled, marginalized, or otherwise “othered” for no reason other than circumstance].

This woman lived for years in darkness after her diagnosis and disability crashed her against the rocks right when life seemed to be settling into something beautiful; only a siren song. She tried to die. She missed by merely a hair and became a statistical anomaly. Or a “miracle” depending on where the listener falls on the ableism scale*. [Religious people might also see this as a miracle and not condescend based on disabilities….so I’m not talking about that.] Again, that isn’t the story, the story starts here:

She was told she could get better, that she could get back to a place where life felt beautiful and she felt she had a purpose, if she did all of these things [insert medication, self-care, coping strategies, support, etc etc that she had been trying to do for those dark years]. And if she quit drinking. She had wanted nothing more than to quit drinking once she realized that she couldn’t stop. They showed her how. For the next five years she did everything “right” and her life was amazing. Or, at least, her life was amazing compared to what she knew of life intimately. And she amassed friends who had been there and friends who were struggling still and friends who knew others who struggled, and some who had no personal experience with these kinds of struggles. She shared openly of her experiences and some people’s reactions were expected and humane, some people could relate and empathize, other people reacted oddly. They called her “brave” for breathing and wanting to breathe*. They called her an “inspiration”*. They got angry because why couldn’t [insert friend or relative] just be more like her and take care of their kids better? Well? Why the fuck not?!?
She got worse. Nobody knows why yet. She didn’t stop trying. She didn’t give up. And she is struggling and fighting every day to just get fucking back to when she was better. But her kids are gone because she can’t manage. Guess who isn’t anyone’s inspiration porn right now?
There are new fun reactions. The bubble phenomenon. This is something she hadn’t experienced since The Time Before The Miracle. It is still condescending as fuck. This is when a person, or a group of people, or the whole world shield you from information or experiences because :::whispers::: disabled. When you don’t ask for it. This world needs more accessible support and accommodations for people with disabilities. When they ask for help. When they specifically need a specific accommodation. When you decide what will protect this person without their input, you are not helping. You may actually be hurting them more. She was hurt more. She felt that those she cared about, those whom were supposed to care about her, didn’t trust her. Maybe they never looked up from the her on paper to make eye contact. Maybe they weren’t actually listening and too busy reading between the lines or patting themselves on the back for caring about her. Maybe they met her when she was functional and assume she did something to deserve this [go read Job] or quietly resent her for pointing something out:

There is no getting better for good from mental illness

I mean, maybe there is for some people. I hope so. But, this comes in waves. Nobody told her this. Nobody said, “Hey, you know...you’re doing really fucking awesome right now on this upward trajectory/steady plateau. But, you should be aware that it might all just fucking fall away for no apparent reason. It might get hard again and we may struggle to get you back here. You might have to give your kids away “temporarily”. Let’s add that word because it makes us both FEEL better.”
You might one day pity your inspiration porn. She sees that pretty clearly right now in the microexpressions of her friends. In word choice, or wordlessness.
And all she actually wants. All she ever wanted, was the same dignity and respect afforded to other human beings. She just wants to be human. And right now, she just wants to feel human again. And she will claw her way back to a normal where she can take care of her kids or she will die trying to get there.

So, that’s the story. Just treat your friends and everyone else like humans.


*those asterisks up there (about people’s reactions to shared experiences and the bubble phenomenon) are because when these things are said by people who share in the struggling and it is about hope and empathy in community, it is different and not offensive [again: in my experience. Use caution/judgment/choose your words carefully if you are unclear how a comment might be taken. Sometimes it is better to just listen or ask how you can help. But supportive words are helpful when boundaries aren’t crossed or assumptions made for or about the person.]

Sitting here trying to channel my therapist because I don't see her Til Tuesday (prettttty pretttty pretttty sure that's a bad band) and I'm sure she is overwhelmed on her own and with her gaggle of non-typicals.

*************************
So, what do you wanna work on today?

*Life.  Everything that is going on in the country right now.
Sitting in the middle of the uncertainty is torturous right now.*

Well, you've always had a problem with uncertainty and anything you can't get the facts around, right? How is this any different, Sara?

*It's bigger. Which makes the consequences and choices bigger proportionately. Too big some times for me to even bring it forward to think rationally.*

That's okay. That's normal. Everybody does this when they are overwhelmed or afraid.

*I know. I'm okay when I can look at it logically. But I am so precarious when it comes to stress. And so many people are afraid and it feels like fear-measles...they're just spreading it. STAY THE FUCK HOME WITH THE FEAR. Come out when you are willing to discuss treatment options and ways to stop the outbreak.*

It's good that you are recognizing when your fear has taken over and can step back. But, not everyone can, Sara. You know that.

*I DO know that. And I don't fault them. I fault the fear salesmen. And myself for not being able to help. For not knowing how to help when my efforts have failed for so long. And I feel unheard.*

Ahhhhh. And what does that bring up for you? Because I know this has been a recurring issue in your life, feeling as if your words aren't valid and nobody really listens or wants to understand.

*It is hard to keep that distance. Between who I used to be and who I try to be today. But it's magnified here. My biggest fear is that a lot of people and some friends are "stuck in the fear" right now. And I can't connect. And as the missed connections pile up, I begin to be pushed back across the line into "otherness". And I know that pain intimately and try to never "other" others. So it hurts, personally and it scares me that I see this pattern emerging where perceived teams or tribes are getting smaller and smaller until we begin to lose trust and hope.
Fear and a feeling of having right on your side can make a person do truly horrible things. An ex-member of The Weather Underground said something like that about his own actions during his involvement. *

...

*...*

That's a lot. Are you taking care of yourself? Have you found that thing you can do to be and feel productive so you don't get lost in the fear and hide at home? You have been functioning really well these past few years.

*Honestly, it is harder to do some things. I want to stay inside unless necessary. I know it isn't healthy. I haven't been able to work as much as I should and want to be. And I feel irritable and exhausted with the kids. I am trying to focus on one on one time with them more though. And I have been looking for those concrete ways to help others. Because it *does* help.*

You can't do much more than you are doing, Sara. I know you want to help others through that fear. Because you know how it feels to get stuck in that place and what it can do to you. Just keep reminding them that you are here if they need it and you understand. But you have to take care of yourself, too. It sounds like you are getting pulled into it at times and you can't afford that right now.
So I need you to monitor that. And step away before your get overwhelmed.

*okay*

You're doing great though. You really are. And you know how much I love hearing your perspective. I'm sure others feel the same way.

:::hugs:::
The boys doing alright?
*yes. They're doing pretty great. Growing up too fast*
I hear that. Take care of yourself and call if you need anything.
*Thank you*
...............................................

So, umm. That's embarrassing.
But if you need to talk about anything, I'm here.

This is a bit hard for me to post, but I think it is essential that people hear/read the kinds of internal dialogue that depression sufferers can face occasionally, weekly, daily, or all day some times. It is important to know that there are many people who fight a battle silently in their minds, trying to decipher what the correct perspective is; the one that they fight to see and others assure them is true, or the following.
This is not a cry for help or a cry for attention. Nobody is in imminent danger.
[In fact, this site was glitchy when I wanted to post this, so it is from earlier this week.  But nobody was in danger then either.]
If you ever worry about the well-being of a friend or family member [or even an acquaintance], ask them even if it feels uncomfortable.  Go by and visit.  Give them hugs if they like hugs.  Because this is what they hear in their heads from time to time.  


“I don't want to be a thing anymore. I want all the reals and unreals to quiet themselves (respectively and respectfully) and just allow me to be a nothing for a bit.
I need to not feel the pressure from you or him or that other one to amount to anything other than the randomness that is truth. I need to just sit and not be for a while. Can someone grant me the One Wish™?
I have tried for so long to just amount to a human being which is capable of existence solely for its own satisfaction and amusement. This isn't a thing is it? This must be one of those lies we are sold. I am less than real and I want to become. But, being pulled in the multitude of directions and being touched by the multitude of hands manipulating my actions, I cannot.
I have made an attempt, and it seems as though I have been doomed to remain unreal and quickly becoming unfit even for the service of the reals.
My reals are suffering and they can't stop letting me know. My reals are suffering and I would give up my becoming if I could fix that. But giving up my becoming hasn't fixed anything. Except the idea in their minds that I am unworthy. And my body has heard and is responding. It is breaking like the mind to which it gives a home. And no singularity approaches (not that this mind would aspire to become real or unreal in digitization of life).
I broke when they tried to simply bend me and they liked the sound that it made; unaware of what the rhythmic snap songs had meant, they continued to play my bones and my synapses like percussives. And here we are, sitting in the middle of an echo chamber of my inadequacies and listening to the breakdown of mind that was never perhaps genius and crazy (certainly) all along.
And I did this.
I did it all.
And we all suffer.
So pray for the reals.
The unreals and the inadequates have lost hope enough to know that prayers be useless.
The reals are yes.
And the yes holds the worth.”

I want to talk for a moment about mental health and mental un-health.
"Insanity", (and I am going to use this not-so-politically-correct-apparently-pejorative term because it is the one that makes linguistic sense.), looks different from person to person. I have not been "well" recently...at all. My facebook feed might make some people argue about this. My facebook feed, like many others', is capable of deception. I don't mean to be deceptive...but you don't want to see puffy eyed selfies of me trying to force myself to get dressed or hold a conversation with a toddler. Trust me. I also don't know what I am allowed to admit without some well-intentioned friend having CPS come check on us.



My kids are safe, healthy, fed, clean, and we have people checking on us. Feel free to bring us a casserole or cookies some time if you are truly concerned. We can chat, though I may or may not sob.
I have grown accustomed to relative "wellness" over the past almost 5 years, as such, I feel a bit like poor Algernon slipping back from previously gained strengths. I can tell you that if the idea of this notion when you read the book was torturous, you don't want to live it. I don't want to be *here* right now. Knowing how it was just a couple of months ago and thinking that if I kept doing everything "right" I would never be back here again.
But that isn't how this works.
Mental Health does NOT exist on a linear trajectory.

The past few months have come with a lot of new and increased stresses as well as some significant anniversaries of some significantly bad experiences from my history.  So, I have hit a large wave.  My first TRULY large wave since things really evened out after getting sober and I was NOT prepared for the weepiness, and the moodiness, and the utter exhaustion.  I was not prepared for my brain to start telling me I was worthless again and for me to not be able to recognize that as the depression. 
Don't ever assume that (or ever EVER tell) someone they must be neglecting their treatment plan or trying hard enough if they are experiencing symptoms at a more noticeable rate. Maybe they are. But this shit changes. It adapts. And some day, after doing everything seemingly correct, you end up crying in a closet; well rested, exercised, self-cared, and positive. Just....depressed.
So you try to funnel for as long as possible. The keep moving method. You try to make your world smaller and more manageable. As small as possible until hopefully your coping strategies start working again or you find new ones that do. And you just keep walking through the bits of it that you can.
So my insanity looks like murals and ignoring things that are not necessary or immediately helpful to minimize stressors. It will likely look very different for someone else. We do what we can with what we have at each moment. I believe this is true for every one of us; sane or insane. Some days my best isn’t going to seem good enough to someone, and I am sorry if that someone is you. But I am trying to float and I have to save enough room for the boys.
I might look happy. I might be happy parts of the day. I might sleep for a few hours while my kiddo watches bilingual shows and naps.
I probably feel like a bad mom.
I probably could use a hug.
But I will make it through this wave.

I feel like I finally am making it over that crest.  And hopefully soon I will be able to fully articulate the impact of these anniversaries.  The lasting impact of the events and the bitter remberances as they echo back through my life now. 
  But know that today, we are okay.  I am okay. 

  2017 will be the year of the comeback, I can feel it.  Maybe Natalie Imbruglia will have a new hit, Frank Miller will create us a brand new anti-hero, and we will all rededicate ourselves to the idea that we can create something worthwhile in a sinister world or some such. 
  I have spent the past couple of years attempting to rebuild my fine arts and illustration career and have neglected the writing thing due to time constraints.  In this time, I have realized that I am most useful when I am writing about mental health issues.  Especially when writing about the intersection of mental health issues and parenting.  So, that is likely on what this blog will focus heavily.  In addition to how my parenting and family are affected by my diagnoses, I may also discuss my son's ASD and SPD, especially in regards to neurodiversity, acceptance, and activities/strategies that have helped us to build coping strategies that benefit the entire family without being a detriment to any individual.

  I have been art blogging a bit over at my arts website sarabarcus.com about art related activities, musings, and new works and will use this site for all of my other writing.  Hopefully, I will have something exciting for all of you on the other side of this weekend. 

 
   I love technology.  I do.  I love living in the information age, in which I can instantly and effortlessly access
facts, ideas and opinions on any topic I could desire.  But, I grew up without it.  My brain learned how to
imagine, how to wonder.  I learned how to search, really search, for information that I craved.  How to seek out
the answers to questions that plagued me. I learned to read books, turn their pages, "dog ear" and underline.  I
know what the Dewey Decimal system is.  I like to keep some of that mystery, some of that journey for facts, some
of that time to wonder in my life.  For that reason, I don't have a smart phone.  
   So when my hard drive failed me a few weeks ago, I was left without all access to the great, wide, interweb.  I
did not run out and buy a new hard drive immediately.  I would like to say that this decision was purely mine and
it had nothing to do with finances; that would be a lie.  But, I can tell you, that I took this opportunity to
examine my life and my brain, without the influence of an omniscient search engine or immediate glimpse into the
lives of others.  
   I seemed to go through several different stages psychologically in these two weeks.  It was a mourning period,
apparently.  I had to grieve the loss of a lifestyle that I had become accustomed to, socially, intellectually, and
psychologically.  But, almost instantly, I enjoyed the freedom.  The increased presence I had in my own life and
with my loved ones.  I heard my children's voices with more clarity, we hugged more, and their eyes seemed even
bigger as I gazed into them more often.  We looked for the answers to Bambino's questions in books.  Books who had
been collecting dust for months, lonely on shelves.  I started googling things in dictionaries and reference books
on animals.  In fact, the Smithsonian Institution's big book called Animal is now my son's new favorite book.  Just
like I did as a child, he seems to love the tactile sensation as he can just flip through and land aimlessly on a
page and learn about the wildlife that fate has chosen for him.  We played outside more.  And I called [or texted]
my real-life friends and family for a personal and individual catching up on our lives.  Real questions, real
concerns, real comments, and no leering eyes of acquaintances, friends, or strangers.  We shared stories and my
children's milestones in real time and in private.  I got so much more done without being sucked down the rabbit
hole of increasingly tangential news stories, opinion pieces, and thoughtless comments sections.  It. Was. Bliss. 
At least that part of it was.  Following is my experience grieving the loss of technological accessibility to,
well, everything.
   
   Stage 1: Denial

   The day my computer told me that the hard drive was malfunctioning and that I should back up my information, I
panicked.  I immediately went to the store and purchased a flashdrive large enough to accomodate all the new photos
I had taken, the articles I had downloaded and written, and of course my internet bookmarks.  And I started the
tedious back up process.  But, in the back of my mind, I was thinking, "Maybe this is just a fluke.  Perhaps my
computer will keep working for months...years!"  I kept using it as usual once I had backed up everything vital
until it did indeed shut down the next day.


   Stage 2: Anger

   The day after shutdown...we will call it Day 2.  I became very upset.  I started to wonder what kind of person
would sell a "refurbished" laptop on ebay that breaks down after only a month.  I was incredulous.  I spent a whole
$100.00 on this used computer, where was my warranty?  I, of course, did not express this outrage to the man who
sold me the computer...I thought about it long enough to realize how ridiculous I was.  But, I continued to be
enormously jealous of anyone using their iphone in front of me.  Didn't they know that I had just lost my
connection to the outside world?  How dare they flaunt their good fortune in the face of my grievous loss?  And I
felt the loss; I felt that something was indeed missing.  This lasted roughly 2 days.


   Stage 3: Bargaining

   Around Day 4 [and lasting through the first week], I was feeling withdrawals and began to beg those close to me
to let me use their internet for "just a minute".  I *needed to check my email, my facebook, the news.  I NEEDED to
google something!  I needed a small fix.  One night, I plugged in my old laptop [still slowly dying] to look up a
specific episode of a television show that I had been discussing with a friend.  His googling skills weren't honed
enough to find it.  I felt slightly pathetic.  But only slightly.



   Stage 4: Depression

   The transition from Bargaining to Depression came with a text conversation with a friend...

    I just had to know what was going on in the world!  I felt lost.  Alone.  I was disconnected.  My life was
doomed to forever be dull and uninteresting.  I never deserved internets anyway.  Internets was too good for me and
knew it.


   Stage 5: Acceptance

   Then around Day 10, something miraculous happened.  I woke up and didn't think about jumping online.  I didn't
miss it at all.  There was no pressing desire to let the entire online world know how adorable my toddler was
being.  I just quietly appreciated it.  I didn't care what your breakfast looked like, or what new movie was coming
out [that I would probably never get to see anyway].  I did miss you, so I texted you.  I called you.  We made a
playdate for our kids, I heard your voice, we talked about the family.  When I began to miss the thrill of the
novel idea or the beauty of previously unseen artwork or the comfort of unknown facts...I opened a book.  And I
opened that book with my boys and we learned together, we experienced together, and then we closed the book for
later, while we ran around like dinosaurs.  

   
   The online world in this, our information age, is amazing.  It is wonderful, intriguing, exciting, educational. 
It is divine.  It has a cherished place in my life still, but I am glad to be back to a place in my life where it
doesn't shape my days.  It doesn't determine how good I feel or what I know.  It doesn't shape my interactions with
my loved ones.  This time was quite liberating actually, and so, I plan on keeping the first week of the month a
"No Internets Unless Necessary" week.  Now hopefully, I won't be bending the definition of necessary too much.  
And perhaps, my kids will learn that "disconnected" time has a valued place in our lives.