30 Days of Mental Illness Awareness Challenge: Day Eight

Question: At what age were you diagnosed? At what age do you think your symptoms began?

 

I’m going to answer this question backward (as is my inalienable right as a willing participant), because my brain is malfunctioning lately and these things seem to happen outside of chronological order for me when I write in this condition.

Like every kid, I had imaginary friends. The difference between my friends and I was that I would talk to these imaginary pals openly, in front of everyone, up until the age of … well, I guess I never stopped. That’s the chief difference: mine didn’t go away. When others’ imaginary friends “moved away” or “disappeared” or lost their “magic”, mine continued in intensity and frequency. (Except the ones who died. For example, I watched “Katy” burn to death when I was 4, and even my older sister couldn’t convince me it didn’t happen and wasn’t real. It was extremely graphic – especially for my age – and I was a bit emotionally scarred by it. But this is another story.)

I’ve been talking to The People in My Head since I began to talk. I have no idea when this all began. It’s always been a part of, a piece of who I am, like an arm or a freckle. Around the age of 12 or 13, I started to believe I could see ghosts. I was special because I could communicate with the dead. Even celebrities joined in the mix. By the time I was 14, I was totally lost and batshit off-the-wall delusional. Three sheets to the wind psychotic. I lost my “real” friends (the few I had), because there was just no relating to me and the nonsense babbling I did about the chaos of my mind. I spent 5 years in the hole of schizophrenia without a diagnosis. My parents searched the house frantically for any drugs I might be taking, but of course found none. (I was actually so clean it hurt. I never had a big attraction to drugs, though I did try pot a few times in high school. All it did was make me paranoid, and I couldn’t understand why people deliberately made themselves paranoid and delusional, so I left it as a novel footnote to my existence. I pursued drugs no farther than that. Just in case you were wondering.)

Just a few days shy of my 19^th birthday, my mother drew a proverbial “line of death” in the sand of our household. It was demanded I see a psychiatrist. He diagnosed me with “schizophreniform” almost immediately. He gave me an anti-psychotic. It made me tired, but

THE WORLD WENT QUIET.

The official diagnosis of full-on schizophrenia followed in 6 months.

PTSD took a little longer. I had no memories of what I had endured as a teen (either because I was so out of it with the Crazies, or because the truth of it was too terrible, or a combination of the two). When I finally found a therapist I could trust, I opened up. This was about 2 years ago now, and she told me I did indeed suffer from post-traumatic stress disorder.

GAH.

It’s so sad to me, because I was so smart! I could’ve done almost anything! I could’ve BEEN almost anything! So here’s a poem I wrote some time ago that sums up some of my despondency over What Might’ve Been:

"The Sense of Senselessness"

You had too many faces in the first place.

You moved too quickly.

You had me neatly packed into you.

Your calloused fingers were nastily possessive from the start.

I was tied too tightly to the ligature of your doubt

so no one could pull us apart.

Now without you, I splinter into anonymity,

as if someone spliced through my ocean

but the water of me is undeterred.

I belong to no one.

I am no longer cohesive,

my holy seal broken

as you seethe and break in tantrums and traumas.

You used to be the air all around me,

but now I am too big for toys.

Seeking out my center

I have given you away, removed you from my diameter.

But here is a turning point,

a twist in the plot:

however sleep comes,

we still glide together

where the ice in your iris contracts

where you make more black space for hatred.

Your light was ingratiating and I folded like ash beneath its boot.

You’ve never been fair.

Like me, you’ve grown beyond opposites.

I was two halves of a single snapshot, imposed

by your impartial retina.

I split in the center of your eye.

Your image is stenciled in the black of my typeface,

an optical illusion.

And if I thought the world was equally weighted,

I would have measured myself

by my name tag.

And if I paid deferment to a deity,

I may have hidden behind my incomes and outcomes.

But no one ever wins a war between two.

My god! You were always in me.

 

30 Days of Mental Illness Awareness Challenge: Day 7

Question: Do you think there are any patterns or triggers to how your illness affects you?

YES … and there’s so much!

You know those “before and after” pictures make-over people get? If you want to think of my PTSD diagnosis and subsequent therapy as a bit of a mental health make-over, you’ll understand why I am going to bifurcate my answer into two, easy-to-swallow, dissolvable, before and after gel caps for ease of consumption.

BEFORE I ventured into the realm of truth telling in therapy, I assumed any kind of stress, including but not limited to being touched, loud noises, bright lights, and startling movements triggered my schizophrenia. With the smallest worry, I would launch into a black whirlpool of hallucinations of “People” trying to rape me, who told me lies, poisoned my food, and tried to trick me into killing myself. I couldn’t keep a schedule or routine because I couldn’t predict what might trigger me or toss me into a paranoia so profound I couldn’t leave the house. (This still happens, but less now.) The People kept me up at night until I would collapse completely after about 3 days of no sleep. My eyes would sometimes involuntarily roll back into my head and I would pass out into sleep for 4 hours, only to get up and do it again for another 3 days. Unfortunately, I had no accompanying mania. (Unfortunate, because there was no productive output, although I’ve heard mania can be pretty hellish, too.) I was the victim of complete a-volition. Agitated inertia and distress followed. Oh yeah, and don’t forget my total loss of touch with reality. It wasn’t until I spoke to an excellent group of folks online that I began to suspect my sense of being invaded and made powerless had something to do with trauma.

AFTER I recognized stressors related to trauma, I realized what could set off an already schizophrenic mind into a tailspin. Anything that surprises me and which I can’t prepare myself for triggers me – and no wonder! – into dissociation. I’ll have to retreat to home or a ‘safe place’ to clear my head. That is one pattern, and possibly the most common one.

Unwelcome touch, people sitting too close to me, and long periods of time in public, are all triggers. If I have to hold The People in for too long, I feel like I am going to explode and have to escape the scene.

I’m learning now about people in my past who were manipulative, which also triggers me so subtly I don’t always see it right away. This push-me-pull-you, passive aggressive waltz some people like to do is crazy making for me in the end. In therapy, I am also learning how to pay attention to my body. My stomach and bowels are the organs most affected by stress (except, of course, my brain). I’ve also noticed I react quite strongly to scenes of violence/rape/unfairness in movies, television, and even books. Either I cry endlessly over it, or I assimilate the characters into my delusions and try over and over to save them. This limits the amount of fun I can have, too: I miss out on all those science fiction mind-fucker movies I love. 

Patterns I recognize are that I am not usually able to follow through with plans or finish projects. And I am extremely codependent; I always assume the things that go wrong are my fault somehow. But I see boundaries now, and am learning to set them. With therapy I am learning the compassion embedded in the word NO.

30 Days of Mental Illness Awareness Challenge: Day Six

"... But a black sheep with a crumpled horn." - Dylan Thomas

Question: Do you have a family history of mental illness or mental health issues?

The answer to this is No ... at least, not that we know of.

I have no family history of "disappearing grandmothers" or "eccentric uncles," or anything else of the sort. But the important thing to remember about this is that I was born in the mid 1970's, and people just didn't talk about these things then ... and certainly not before then. So, who knows? Maybe there is a history and the people in my family were really adept at concealing the afflicted, or the poor sufferer(s) were extremely good actors? It's possible, but the answer is still, "No ... not that we know of." I know that's strange, especially since I had such early onset and my symptoms are considered "high acuity." Researchers and pshrinks will shake their heads (believe me, I've seen them do it when I answer this question for them), and Medical Model doctors get their panties in a bunch about it. No genetic markers? How can this be?? (I refer you back to Day Five, and the 1.5 post in the middle of Day 3.) Not that I think mental illness is a choice. Not that at all. But a reaction to trauma in the very place we have allowed America to become ...? That certainly must be a factor.

All I know is I can't solve it for-sure-sies. (Unless the CDC or some independent researcher finally finds the elusive "genetic marker" for certain and we exhume all the bodies of my ancestors to test their DNA. But this seems unlikely.) Sorry I have no juicy stories of gothic-style, pure, literary madness to astound you. But then, maybe the odd fact that I seem to be the first one in our family's history to come up with schizophrenia might be astounding enough.

ETA: At first I wrote out "Metal Illness" in the title and didn't catch the rather apropos typo. *Jams to metal on the MP3* Jungian slip, perhaps?

30 Days Mental Illness Awareness Challenge: Day Five

Question: Do you believe nature (biology/physiology), nurture (environment), a mix, or something else has an impact on mental health?

Warning: I'm gonna get a bit nit picky. If I take this question apart critically, "believe" and "impact" change the tone of what it's really asking.

I can understand the word "believe", because after all the millenia of mental illness, no one is yet able to say just WHAT makes it begin its malicious circles. And not for lack of trying. Scientists, psychologists, doctors, politicians, religious authorities, and just about everyone else have been struggling to find some objective, empirical truth that will clear up the cause of these monsters in the human mind. To no avail. No such luck, pal.

So we're down to belief. No physical tests exist that pin down mental illness. It's hit and miss, and even the medications to treat it are trial and error. Psychological testing is slightly more accurate ... but only slightly. They tell you the WHAT, but not the HOW. So yeah, belief kicks in. It's almost mystical these days. Perhaps it always was? Perhaps that's why so many were thought of as shamans, or mediums, or witches? Perhaps that's why many were either revered or destroyed, depending on their culture? But the word "impact" strains too hard to be politically correct. Of course EVERYTHING has an impact on mental health, just as EVERYTHING has an impact on EVERYTHING ELSE. The wording of the question is misleading.

What the question means to ask, quite plainly and let's admit it, is "What do you think caused your mental illness?" Don't get me wrong; it's a fair question. It's even an important question. It's a big deal, but it isn't a question for which I have hope of a definite answer to in my lifetime. So let's go back to the word "believe", since it's all we have. In the meantime, we'll pretend the phrase "has an impact on mental health" really means "is the cause of mental illness." Just for clarity.

Nature or Nurture? A mix? Something else?

I believe the fact that I hallucinate and get paranoid and have delusions is biological. However, contrary to the Medical Model, I believe that what I am hallucinating, paranoid, or delusional ABOUT is purely psychological.

If my brain produces too much dopamine (the current, accepted theory on schizophrenia), who knows if it was "built in" that way with my genes, or brought on by a chemical change from trauma? Both are plausible in my mind, but I am no neuro-expert. In my opinion, it's most likely a mix of so many factors we just can't wrap our heads around it all yet.

With medication, my life is better than it was without it. (It was a total malfunctioning breakdown.) Still, I can't ignore that therapy is progressing to a point for me that I am doing pretty well, as long as I can cut out stressors. If it is a mix, or one, or the other, or something else, it has been my experience that different things work for different people. Boxes and compartments are useless within the multitudinous dimensions of the human animal as a whole.

It's a game of 'chicken or the egg' for me. It's an endless loop of speculation and guesses at this point in history. And to be honest, at the end of my day it doesn't matter much. It is what it is. When someone self-identifies that medication (and nothing else) helps them, I believe them. If they testify the case is the opposite for them, I believe them too. Until someone figures it out, my (unasked for) advice is to try anything you think will help you.

PS And be wary of people who advise you to do things that do NOT help you. You are the only one who can decide what works for you and your relationships with those around you.

30 Days of Mental Illness Challenge: Day Four

Question: What are the pros & cons of having a mental illness, or your specific illness(es)?

For ease of reading all this enormous text I've been posting, I'm reverting to bullet points this time. There is no other way to shorten it!

PTSD. PROS (I can't believe I actually came up with a few. It took some thinking!) :

•  Being able to alleviate some of my schizo symptoms simply by recognizing where a few of them originate. 
• It opened the door for the telling of my toxic "secret", which helped me get the support and help I needed.
• Forced me to be more aware of my self and my body and my reactions to triggers. Previous to this diagnosis, I just tried to numb it all away with medication and shuffled it under the grim sentence of schizophrenia.
• Therapy for it is more effective (at this point) than the known treatments for schizophrenia alone.
• The stigma against it is not as enormous as ... some others I could name.
• Support groups for it are numerous and higher profile. They are the reason I have the support I have in my friends/life. 
• I am more sensitive to others have lived through abuse or trauma of whatever sort. I believe people when they say they have PTSD by default action, which is healing for everyone.

                       CONS:

• Nobody deserves to be brutalized and it's not fucking fair. It hurts so much.
• You don't get to choose when PTSD (or triggers) will sneak up on you.
• The only way to heal it is to re-live it. (Hopefully with a competent therapist.)
• Flashbacks, nightmares, paranoia, being in combat-mode, and never trusting.
• Hating touch, and an all out phobia panic reaction to sex (for my particular case, anyway).
• Blaming myself and never feeling "good enough." 
• Irrational anger at people who didn't try to stop it from happening, even if those people didn't know it was happening.

Schizophrenia. PROS:

• I've learned a lot about being "different", including the amazing phenomenon of EVERYONE feeling they are "different" somehow, and can relate to others on that level.
• I get a unique perspective on how to teach others that we're not all crazed idiots with assault rifles. We are real people with real friends and loves and cares and thoughts of profundity. Sometimes I do so through poems and art, and sometimes with actual public speaking about mental illness and schizophrenia.
• Um ... it sure beats dining alone? XD 

                     CONS:

• The unbelievable stigma I get when I am taken seriously, and the unbelievable doubt when I present well on a good day. 
• The medication. All the damned, poisonous, toxic medication.
• Lowered life-expectancy.
• The inability to hold a job (or get a job due to silent discrimination).
• Avolition and the inability to handle stress.
• Relationship failure. When the "mask" comes off and the boyfriend (whomever he might be at the moment) realizes I really am too sick in private settings and the whole thing goes down the crapper.
• The symptoms! Oh dear god, the symptoms! ALL THE SYMPTOMS.
• There is no real cure. You just have to learn to live with it and cope with your own personal entourage of demons.

Then there is the one con that traverses all mental illness or "abnormal" diagnoses:

          THE INVISIBLE DAMAGE. "You don't look sick!" Or, "I can't see it, so you must not be that bad." Or (the worst): "You should be able to fill in blank. You seem fine." Because, if you already knew all of this (especially about schizophrenia) and you still think we're all violent, unpredictable weirdos, I should let you in on a very public secret:

Those with mental illnesses are EIGHT TIMES more likely to be the victims of violent crimes than to be the perpetrators of one. So here's a bonus CON for your edification:

• America has turned into a giant "One Flew Over the Coo-coo's Nest" nightmare. Think about it. If something violent went down between me (a total peacenik weakling), and some neurotypical person (do any actually exist anymore?), who do you think they would listen to in a court of law, whether I started the altercation or not? Whether I even fought back or not? Who would a jury believe? Probably not ME, I'll tell you that. (And just to rest your unquiet minds on the subject, I have never been violent. And I have no desire to become so. I abhor guns and bigotry and hatred and all sorts of other horrible things. You are perfectly safe within my diameter.) End rant. 

30 Days of Mental Illness Challenge: Day Three

Question: What treatment or coping skills are most effective for you?

*sigh* Okay, dammit. I guess I have to include a “hidden” post now. It’s not in your computer settings and there’s no “hide me” button. (I wish I owned a “hide me” button. But then, doesn’t everyone?) This is something I wrote out on Day one, but didn’t include. It’s tightly tied to the methods that calm me and will help me answer the list a little more completely.

Here it is! TA-DA!

Day 1.5 Question: Any other diagnoses? Explain it a little.

Post-Traumatic Stress Disorder

About 2 years ago, I heard about a sexual abuse survivor’s support group. I always knew it happened to me: as a child and again as a teenager, by two different people. I also knew the bullying I received in school was a little different from the others’. I was SINGLED OUT. I was never into the popular stuff the others were into, and besides that, I had a blossoming mental illness with extremely early onset. (I lost touch with reality totally by the time I was14.) It only served to isolate me and complicate matters. Although I already had a therapist, I had never been truly honest with them. I decided to find a therapist I could trust and relate to right before I found the survivor group. I finally laid out my story.

I argued with myself over this post. Should I, or shouldn’t I? Honesty that might heal, or silence that might protect? A friend pointed out that I have already been scathingly honest as it is with Lost On Ethel. It also brought up the question of how many people have been hurt (mental illness or no) with the so-called “protection” of silence in the matter of abuse? So I name my second diagnosis here, but I really don’t feel I need to hand you the details like a gift-wrapped box of poisoned bon bons. The minutiae of my past are dented and bruised by too many hands already. There are enough fingerprints in my private spaces to last me a lifetime. I’ve swam through enough muck to know the danger of an audience I can’t see.

“It’s no wonder,” you’ll say, “that the haunting, horrible Hands grope at her. It’s no wonder she doesn’t sleep or feel safe. It’s no wonder she doesn’t trust us.” And I don’t. Not really. Sometimes my delusions and hallucinations and paranoia are simply flashbacks to a childhood I wish had never happened.

But this is not for you to worry about. I do what I can with my new therapist. Even some of my “treatment resistant” symptoms of schizophrenia have subsided from psychotherapy and EMDR. The groping hands are less intrusive, and I am FINALLY learning (at this late stage), about boundaries and real social interaction. I draw a line, then, by sparing you the blood and gore and guts of my tale in full. I’m not proud to have been so horribly wounded, but I am honest enough to say that I have been scarred and left a little dead by what others have done. How this affects the positive and negative symptoms of schizophrenia – and how schizophrenia affects PTSD – is a story for another day. But this is key: if someone out there is reading along and this turn slaps them in the face with an ice hand and they realize they are not alone in whatever diagnosis they might have, I’ll have done something worthwhile. 

collage of my brain matter 2014

… And now back to our regularly scheduled program.

Day Three

Obviously, I do continue to take medication for schizophrenia. Without it, I spiral into a down-sliding vortex of delusions that eventually lead to catatonia. It’s nearly impossible to communicate with me in such a condition: just ask anyone who attempted to relate to me in high school.

I don’t name the names of the drugs I have to swallow to create my prosthetic synapses. I don’t feel it’s a good idea to suggest that what works in my case works for anyone else. Besides that, I’m not a big endorser of Big Pharma. (America seems to prefer to medicate the living fuck out of people to meet standards we don’t even comprehend. If you don’t agree, take a poll of 10 different people’s idea of “normal” and compare them. I’ll bet you’ll get at least 11 opinions.) I choose to sacrifice my body for the sake of my mind, but I refuse to pigeonhole another person into mandated treatment. However, I will say anti-psychotics have helped me and they continue to do so. But they’re not the only trick in my magic show.

Talk therapy and dream analysis have helped me unravel quite a bit, although without a specific therapy (called EMDR), it does little more than help me identify my feelings (which is important), and keep me coping for another week.

EMDR (eye movement desensitization and reprocessing) is a fucking Relief Bucket of Wonder. I wrote out the words in the acronym so it will be easier for you to look it up if you wanted to. Perhaps you’re already aware of the benefits it affords people with trauma, though, and I don’t want to waste time explaining its finer points. I hope it suffices to say the hallucinations of the Groping Hands have been recognized in EMDR for what they are (flashbacks), and I have almost completely reprocessed them.

Mindfulness is a great therapeutic endeavor for me. It puts me back inside a dissociated body that needs paying attention to. Once I feel my stomach cramping before the stress hits, I know how to combat the stress. I pay attention. It makes a bigger difference than you’d think.

These are the treatments that keep me grounded. Of coping skills, I only know two.

The first is creativity. I write and draw and collage and knit my way through the heavy days, when the world is a weight in my skull. Those are the days I have to be alone, the days when I need insulation and solitude.  My poems are cryptic, doused in a language that loves riddles. My short stories are often disjointed and not-quite-right. My doodles are painful to absorb. Knitting is a great distraction. Its challenges keep my mind occupied, and its rhythm calms me at the same time. My journal entries (and I guess this blog too), are the most straight forward ways I have of communicating my struggle for sanity.

The second is the community I’ve accumulated around me for support. There is my family, who are always willing to embrace me and hold the space for me and my crazy… even when it’s out in the open on my sleeve. Then there are the friends I’ve gathered in the last few years, when I finally decided to step out of my shell and realized it’s okay to reach out. (You know who you are, and thank you.)

Wow. This was a long post. I hope the collage aided in the consumption of so much information. If not, I hope you come back and finish reading sometime. I also hope I helped someone.

These are large chunks of me. Be kind to them, please.