psychiatric abuse

The Fear Prison

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It’s been one of those weeks where a number of seemingly unconnected events have been signs pointing me in a single direction.

I had a conversation with a friend on Monday (one which I will inaccurately paraphrase here) about the concept of a fear prison.  The concept as I understood it describes the moments when something becomes legal, permissible, even encouraged, but we are unable to embrace, accept or even explore it because we remain trapped in the FEAR of horrible consequences.  The fear remains, despite our logic brains reminding us that the actual danger has passed.  We can remain trapped, capturing ourselves into custom built, highly individualized fear prisons.  No amount of intellectual reasoning or reassurance from friends and family can truly convince us that the danger has passed, that we are safe and that the “risk” we perceive as insurmountable is, in fact, no longer a risk at all.  The fear prison is both irrational (because no actual danger exists) and extremely rational (because it exists based on threats which were at one time real).   The fact that it simultaneously FEELS real and is in fact not true, makes it a particularly challenging concept to work with.

As a survivor of abuse, sexual assault, family violence, relationship abuse and systemic discrimination and institutional violence caused by the very systems that were presented as existing to protect survivors, I have built a complex and sturdy fear prison.

This fear prison is the driving force behind, and explanation for, so many of my decisions and so many of the symptoms of PTSD which weigh down my mind, body and spirit.

Just under two months ago, my ex-husband signed court documents which were stamped and sealed by a judge, giving me sole legal custody of my two children.  In reality, this piece of paper opened the doors of a real prison.  It represented an actual, tangible increase in safety, decision making power and freedom of choice.  People in my life, knowing how long and hard I’ve fought for this piece of paper, celebrated for me.  They were happy and congratulated me for “winning” after a long fight.

I think many people are confused and somewhat disappointed by my inability to celebrate.  I don’t feel relieved.  I don’t feel safe.  I don’t feel like I have won ANYTHING.  I don’t find it easier to make decisions.  I don’t feel free.

I’m still caught in my fear prison.

The walls of the prison are built by a trifecta of related fears.

First, the fear that I can’t trust him and can’t trust the unpredictable nature of violence.  This is the fear that he might come back, that he might try to hurt me or hurt my children when I least expect it.  The fear that if I let my guard down and allow a feeling of safety to exist, that I will be most at risk.   This is entwined with a fear that if I allow myself to relax and feel happiness or relief that it will be taken away from me: swiftly, without warning and in a terrifying manner.  This is the fear that every decision I make, every plan I make, every step forward I take, everything I build can be taken away. That it will be MY fault it is taken away because I foolishly let myself believe I was safe.

Second, the fear that I can’t trust anyone.  The fear that if I’m honest with doctors about how I feel then they will judge me and find me wanting.  The fear that people don’t believe me about the events of my life and my experiences.  The fear that people find me annoying, whiny, controlling, and generally too needy.  The fear that if I open up, I will risk being hurt again.  The fear that honesty will result in terrible consequences and that I should be careful about sharing TOO much or needing TOO much because it might result in me losing my children.   This fear at a deeper levels is that other people believe that I am crazy, insane, mentally ill, hysterical or mad.

Third, the fear that rules them all, is the fear that I cannot trust myself.  The fear that I am crazy, broken, damaged and maybe delusional.  The fear that I can’t trust my own memories of the past.  The fear that I exaggerated or invented the abuse.  The fear that I’ve accused innocent people of crimes they didn’t actually commit. The fear that I’m making too much out of too little and that a “normal” person wouldn’t react this way, have these thoughts or these experiences.   The fear that all of the challenges, abuse and violence in my life have been either my own fault or creations of my own mentally ill mind.  This fear keeps me frozen, analyzing and picking apart all my flaws and potential flaws.  This fear fills me with shame and makes me feel worthless.  Or maybe I feel ashamed and worthless because of this fear.

Believing that others think you are crazy, that you can’t trust others and that you can’t trust yourself because you might actually BE crazy builds up an extremely secure fear prison.  A fear prison so strong, that no amount of reality, court orders, locks on doors, or distance can break down.

This fear prison can only be dismantled through my own healing process.  By gradually challenging my fearful thoughts and looking for evidence that my fears are no longer true or real.  It may be that some of the fears were NEVER true or real, but were creations of my abusers, projected on me and designed, plotted and crafted to drive me insane.

The path to “winning” is not in the court orders or external victories.  The winning is my stubborn refusal to give up.  The winning is staying alive despite the intense desire to die.  The winning is getting up each morning and living my life, in spite of the fears.  The winning is parenting and protecting my children each day. The winning is behaving as if I’m valid and sane, even when I believe I am worthless and crazy.  The winning is reminding myself that I am a good person and that only a very BAD person would abuse someone and gaslight them hoping they would kill themselves so they could be proven “right.”

In his mind, the only way my ex-husband can be proven right, be proven not to be an abuser, be proven to be righteous and a good person, is for me to kill myself.  If I kill myself it proves to him that I am, and have always been, CRAZY.   If I die, his narrative becomes the truth and my accusations become just the ramblings of a mentally unstable person, not to be trusted.   I will live forever just to prove him wrong!

There are reasons I have my particular type of fear prison.  I fear that I am crazy because I was led to believe this.  I was led to believe I was crazy by abusers who gaslighted me.  I was led to believe I was crazy by doctors who labelled me as borderline.  I was led to believe I was crazy by the police officer who never properly investigated my report of sexual assault.  I was led to believe I was crazy by the doctors and school principals who lied, under OATH, during my family law trial.  I was led to believe I was crazy by child protection workers who told me that I was projecting my anxiety onto my children and that I needed to be more neutral in my reactions towards my ex-husband’s transphobic violence.  I was led to believe I was crazy by family law judges, who denied that I had been abused (or denied that it was relevant to the custody arrangements).  The entire system, from the moment I was first assaulted (and even before) has been a set up to create in me the belief that I can’t trust myself, my memories, my body or my mind.

Breaking down my fear prison means trusting myself.  Breaking down the fear prison means living as if I am sane.  Breaking down the fear prison means that my memories are true and that the injustices I’ve survived actually happened.  Breaking down my fear prison means accepting that so much of the violence was completely and utterly out of my control.  That is TERRIFYING.   Believing that I was helpless to stop it and that it wasn’t my fault is terrifying.  Believing that I did everything I could and that I did my absolute best at every step and that I still was powerless to stop the abuse is terrifying.

But not as terrifying as the fear prison of believing that I am crazy.

I’m not crazy.

13 years ago…my last admission at South Street

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FarewellSSH

Photo credit: http://www.lhsc.on.ca

For me, PTSD is extremely linked to anniversaries of dates.  January into February is a difficult time, with the memories of my last extended hospital stay in 2005 and my family law trial in 2016.  I often have flashbacks, memories and symptoms, and then notice the date and realize what is triggering them.

My last admission to South Street was in early January 2005.  I was there for about 5 weeks, my longest admission at that facility.  I was transferred in early February to the Regional Mental Health Care facility, the former London Psychiatric Hospital, where I stayed until sometime in March.  Since then, I’ve largely been free from in-patient admissions.

In my mind, I can walk through the buildings at South Street, especially the main building.  The large stone steps which led to the main entrance.  The single stall washroom off the lobby where I cut myself on a number of occasions, with sharps I brought back inside from walks.   The smell of institutional brown paper towel, and the cheap, strong soap found in hospitals everywhere still brings me back to South Street.  The smell of adhesive first aid tape and band aids, bring back the rusty smell of blood harden on towels during long emergency room waits.

Past the lobby was a small gift shop on the right side of the hall.  I would go down there to browse sometimes or to buy a magazine.   Just past the shop was a cafeteria.  It was more of a snack bar, I suppose they had meals there, but at that time I rarely ate more than a muffin or rice krispie square.  Being in the hospital was an excuse for Ana to get away with restricting more, when nobody was watching me eat or expecting me to do so.  I remember walking through the line style cafeteria.  I’m not sure what I bought, maybe cookies.   A little further, past the first set of elevators was a Tim Hortons kiosk.  It was small and didn’t carry a full selection of items.  It was open longer hours than the cafeteria, which shut at the end of the office hour work day.  I remember it being more dimly lit in the evenings.  There was a second set of elevators, the only ones which went all the way to the 7th and 8th floor: psychiatry.   If you kept walking to the rear of the building, there was a door to the “patio” which was where people went to smoke.   It was also the place where psych patients who had off unit privileges but not full privileges to leave the property, went to get fresh air.   The hallway split into a Y shape at this point.  To the left was the admitting department.  You could walk down a long hallway and exit there as well.

That last time I was admitted, I was a patient on the 7th floor.   There was an orderly who sat at a desk at the entrance to the inpatient unit, which was to the left side of the Y.  The stem of the Y had offices and the right hand side of the Y had other departments, like occupational therapy, and a patient dining room.   The hall was carpeted.   The carpet was dirty, even though it was vacuumed daily.   Patients and visitors had to sign in at the desk.   As a patient, passes off the unit were awarded in increments.  Maybe a 15 minute pass, lead to 30 minutes, led to 4 hours and then to an overnight pass.  Smokers were given 15 minute breaks at intervals throughout the day.  Visiting hours ended at 8pm and at that time the orderly went home and the door to the unit was locked.  Patients returning after 8pm had to ring a bell which alerted the nurses to let us in.  I remember coming back after an evening home, or out with my ex-husband.  The hospital was quiet, the main floor abandoned with the exception of security at the main entrance.  The elevator ride was quiet, the halls semi darkened.  It was easy to believe the building was haunted.  I would be buzzed back onto the unit, check in with the nurses to get my evening medication and then get ready for bed.

The rooms all had reinforced glass windows, many of them had metal grills covering them.  Some of them opened a tiny crack and others did not.   The hallway seemed impossibly long, with the nursing station 3/4 of the way towards the far end.  For all intents and purposes, it wasn’t all that safe.  The nurses were quite far away from most of the patient rooms.   They didn’t search us when we came back from passes.  It was quite easy to smuggle in anything.   On a different admission, I had a roommate who used cocaine and cut herself in our shared washroom. Another time, a patient who was supposed to be recovering from an eating disorder continually smuggled in laxatives which she took by the handful.   A third patient, being tube fed and struggling with bulimia would order large amounts of food and then purge.

It wasn’t exactly a safe place.

I spent a lot of time sleeping, resting and talking to other patients.  I filed out my menus and looked forward to the muffins and cereal at breakfast.   I ordered peanut butter and jam sandwiches for lunch.  The vegetarian and vegan options for dinner were largely inedible.  Sometimes I went home for dinner, sometimes I just didn’t eat.  The meals arrived at 8am, 12pm and 5pm on trays, covered with burgundy or dark blue coloured domes to keep the food hot.   There was a fridge with cheap Colt Ginger ale cans (regular and diet).   Sometimes I brought cereal from home.  I often went for a walk to the Tim Horton’s down the road where I would order caramel coffee cake and black coffee.   They don’t make that cake anymore, but you could order extra caramel sauce drizzled over it.

I coloured and read books.  I waited, sometimes what seemed like endlessly, for the doctor to arrive.  Sometimes the doctors checked in with you ever week day.   Sometimes they didn’t appear for days.  They appeared at unpredictable intervals.  Much of the time they spoke to us in our rooms, even in ward rooms with 4 beds, affording us little privacy.   If we were lucky we might get 15 minutes to talk to the Dr.    That last admission I had a very kind doctor.  He spoke to me in a private room.  It wasn’t his office, just a room for meeting with patients.  He believed me.  He talked about referring me to the mood disorders program at the RMHC.  He didn’t think I was borderline.   Sometimes there would be medical students or nursing students.  I liked them because they were allowed longer to talk to us.  It was lonely and there was little actual treatment in the hospital, aside from medication and medication adjustments.  The medical students gave each patient a physical exam within 24 hours of being admitted.  Even when I was in and out of South Street, I got the check up every time.  In reality, these 1st year medical students were just using us to practice doing physical exams.  But I didn’t mind.  I liked the attention and the chance to speak to someone.  The days were often long, and even the nurses were busy, assigned to multiple patients each shift.

Sometimes, if I was having a rough night, my nurse would bring me into a small room attached to the nursing station.  We would talk about how I was doing.  Mainly I talked about the urges I had to self harm.  Even in the hospital I generally harmed myself on an almost daily basis.   Looking back it’s hard to see exactly how I was helped by these admissions.  Once I even ended up needing stitches, while I was admitted.  I cut myself in the ground floor washroom, then went up to the 7th floor to confess.  A different medical student, maybe a psychiatry resident stitched it for me in my room.

In the sad, lonely state of mind I was in, there was something about the ritual of having my cuts sutured, that comforted me deeply.  I think it was a moment of literal relief to have something FIXED.  The inner trauma I was struggling with was coming back to the surface with frightening intensity.  I was in a new relationship that had rapidly become all consuming, emotionally and then sexually abusive.  I felt trapped.  I felt numb, depressed and hypomanic, agitated and anxious all at once.  I was in a frantic state which was triggered by SSRIs and other antidepressants.  I wasn’t thinking clearly for over 4 years.  I was afraid all the time, and yet I felt invincible in a way.  I knew only peripherally that my impulsive self harm and suicide attempts were extremely dangerous.  I both wanted to die, and felt like I was not at risk from the self harm.  I felt torn, tangled and pulled down, like I was drowning in trauma and suicidal thoughts.  I felt like a mechanical robot, and a wind up toy spinning out of control.

When I look back at myself during those 4 years, I barely recognize any aspects of my true self.  I was changed, and not in a positive way.

I was so young.  I was 20-24 years old.   I felt like a child, colouring, whining for help, begging for someone to SEE me.  I didn’t feel truly SEEN by anyone at that time.  I think I’d felt invisible and misunderstood for so long, that I actually was disappearing, even to myself.  I felt like I’d aged decades in a few short months.  I felt like a child trapped in the body of an older person.   My health was poor, due to medication side effects, self harm, self starvation and lack of structure and routine.  I became more and more socially isolated.  I lost connection with the “normal” world and I became a full time psych patient.  I filled out and inhabited the role of a sick person.  So much so that I no longer realized I was playing a role.  It became all I knew of ME.  I lost myself.   I lost myself in more ways that I can express in words.  I wanted to be rescued.  With all my heart I wanted to be rescued, but I learned to carefully shut people out.  I was also being isolated by my abusive partner.

That last winter in South Street, I was so suicidal I couldn’t leave the hospital alone.  I was perpetually compelled by thoughts of throwing myself in front of traffic on the busy road near the hospital.  I didn’t trust myself to walk anymore.  I knew all the train tracks that criss crossed the  neighbourhood, and all the shops which sold sharps I could use to harm myself.  I was a dead person walking.  I was more than half dead, I had more than one foot out the door of life.  I had 95% given up.

But somehow that last doctor who admitted me, he didn’t see my case as hopeless.  He didn’t see me as someone who was just “trying to get attention” or “manipulate the system”   I think he realized that it was possible the medication was making me worse.  I think he realized, and actually believed me that my next suicide attempt would be a completion.  He quietly talked to me, and quietly sent the referral to the specialist.  I didn’t have much hope, but I sensed that things were different.  Instead of lying to get myself discharged, I stayed there until the bed became available on the mood disorder unit.

5 weeks later, I was off all anti-depressants and on a new mood stabilizer.  The mood disorder specialist retrieved my life from the purgatory and hell of anti-depressant side effects, including medication induced hypomania.

Less than a year later, I was pregnant with my first child.

I never had another extended hospital admission.

South Street has been demolished for years now.  I visited the site last summer to see for myself that it was gone.

But South Street haunts my memories.  The images are so vivid, but in the faded colours of a worn down, dirty building.  Those years were brightly intense simultaneously to being muted and grey.

I expect they will be with me always.  But 13 years ago, I never imagined I would even get out alive.

All mental health care, all health care, needs to be TRAUMA INFORMED CARE.

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Barriers-to-LGBTQ-Parenting-e1348467432735

I’m feeling frustrated about the barriers to receiving high quality, publicly funded, trauma informed mental health care.  Especially the barriers faced by trans and gender non-conforming folks.

I know that I’m blessed to live in a country that has free universal health care, but we still have a two-tiered system.  Psychological care, social work and counseling that happens outside hospital settings is fee-for-service.  There are many barriers for those without finances or work place insurance in terms of accessing mental health care.  Based on my own experiences, I believe that medication alone should almost never be the first line of treatment for mental illness, and that medication should never be used without corresponding counseling of some type.   This does not mean that I’m anti-medication or anti-choice or even fully anti-psychiatry.  It just means that I see mental health as more than just a chemical imbalance in the brain.  It means that I know that supportive, validating counseling can be helpful in treating most illnesses.  I highly value feminist based counseling, intersectional approaches, peer support models and any type of counseling where the patient has a say in what happens and is treated like the expert in their own lives.

I’m personally quite negatively biased against cognitive behavioural therapy.  That does not mean that I don’t think it has a place, or that it can never be useful.  I believe it can be helpful with certain types of issues, such as OCD.   But CBT leaves a LOT to be desired in relation to trauma therapy.  It focuses too much on the individual thoughts, feelings and behaviours and too little on trauma, societal oppression and practical barriers.

When I was younger, and I first entered into the mental health care system, my parents found a clinic and doctors that supposedly were experts in the field of eating disorders.  Now, maybe they were good doctors, but I can say with absolute certainty that they were not trauma informed.  I don’t really remember every being asked exactly WHY I had developed anorexia, or if anything had happened to me.

I’m not an expert, by any means, but I know that young people rarely (if ever) develop eating disorders and self harm just on a whim, out of the blue.  Generally eating disorders are symptoms of a larger problem, generally eating behaviours are coping techniques to deal with something.

I was a smart teenager.  I knew to some extent why I wasn’t eating.  I had learned that it was an effective way to zone out, feel lighter, feel empty and take up less space.  I became addicted to that feeling of zoning out, it helped me cope with the sexual abuse I was experiencing.  It wasn’t about my looks, it wasn’t about losing weight and it wasn’t about existential angst (per se).   I’m not sure if anyone actually ever asked me why I wasn’t eating.  And after a certain amount of time had passed, it became irrelevant to everyone.  Nobody cared why, they only cared about me eating so I wouldn’t die.  I didn’t believe I could die.   I’m not sure I REALLY cared if I died. I think I did at that time, but I certainly didn’t care by the time I started taking anti-depressants.  I pretty much welcomed the idea of death and started to think about suicide at 17.

These psychologists I went to see worked from a CBT model.  I remember being 16 and sitting in the psychologist’s office while he drew diagrams of how thoughts impacted feelings which impacted behaviours which further influenced thoughts and feelings.  I quickly picked up on the pattern of it.  I realized that a very specific set of responses were the desired outcome.  I followed the pattern and started saying what he wanted to hear.  I didn’t internalize any of it.  It became a game to me, not a game to manipulate or hurt anyone, but a test to see if I said what was expected if I’d be allowed to go back to school and stop missing music class for the appointments (which to me appeared pointless).

Fairly soon after that, I became physically starved to the point my brain wasn’t really working rationally anymore.  The physical side effects of the disease confused my brain and the restricting and exercising became obsessive to the point of OCD.  The behaviour self perpetuated and I lost track of why I started doing it.  I lost track of what happened to me.  I lost track of the abuse.  I lost track of everything.  I felt panicky most of the time.  I was always cold.

When someone is that sick, no type of therapy is going to work.  Eating is the only treatment.  I went to an inpatient program, started the process of weight restoration and my mind gradually cleared.  I don’t remember being asked in treatment why I starved myself to the point of near death.  I think people were relieved that I was eating and that I returned to some level of semi-normalcy.   I was still thin.  I still had strange eating habits and anxiety around food.  I still avoided eating with most people.  But I was well enough to “pass” as recovered.

I began to recover some memories around the age of 18.  But they weren’t concrete at first.  They were flashbacks, physical reactions, nightmares.  I remember talking about it indirectly to my boyfriend at the end of high school.  Telling him that something had happened with my last boyfriend.  I don’t remember if I shared many details.  I think the idea was only slightly formed in my head.   I didn’t connect the dots and fully disclose until I was 20.

Then I was thrust into the psychiatric, medical model.  I was drugged and drugged and drugged more.  The worse I got, the more drugs were given.  I was medicated to the point I could barely stay awake during the day time. I felt foggy.  I gained weight.   I was diagnosed with PTSD, but I still didn’t receive trauma informed care.

I did an inpatient program for PTSD.  It helped a LOT.  I learned a lot.  But I couldn’t fully actualize the learning because I was on too much medication and I was in an abusive unhealthy relationship.  I knew by then that the trauma piece was at the centre of my struggles, but I didn’t fully comprehend that my current situation was a major factor.

All this to say, that my life story is a testament to the perils of practicing medicine without considering the impact of trauma on physical and mental health.

I’m so passionate about looking at the roots of why people cope in the ways they do.  What societal circumstances and traumas caused them to cope in the ways they do?

Now I’m a parent.  My children struggle with anxiety.  My younger child is transgender.  She has secrets.  There are things she won’t talk about to anyone.  She struggles with focusing sometimes.  I see a lot of signs of trauma and of the impacts of things she has lived through.  Experiencing transphobia in and of itself is trauma.  Being misgendered, people using her old name, being treated as less than a real girl, being told that her mom is crazy for “forcing her” to be a girl….I could go on, but it’s a lot.  A lot for a child.  Rejection by a parental figure is one of the clearest predictors of mental illness in trans children and youth.  Acceptance is the highest predictor of mental health.

Again.  It’s not rocket science.  Of course a child will feel safer if they are accepted.

Now I’m the one trying to find the doctors, trying to access the care, trying to get referrals, wait on lists, be taken seriously.  20 years later, I’m still fighting to find a mental health care provider who truly understands the impact of trauma on a child and who is willing to practice trans positive, trauma informed care.  I don’t want her forced into CBT.  I don’t want her to be medicated.  I want someone to help her feel safe enough to express what is on her mind.  I want someone to hear why SHE uses the coping she does.  I don’t want doctors to guess and assume.  I don’t want them to misdiagnose her as well as mis-gendering her.

She deserves to be heard.  I don’t want her to be writing a post like this in 20 years.

Kids will say what they think adults want to hear.  They may do it consciously, or unconsciously or for their own reasons.  They do it to please, to stay safe, to feel a sense of control and many other reasons.  It takes a special type of doctor or counselor to help a child feel safe enough to tell their truth.   Because after enough time hiding, even she will be confused about what her truth is.

Mental health care for children should be free.  The practitioners should be trauma informed.  There should be enough funding that kids can access the care they need without lengthy wait lists.  There should not be a two tiered system where those who can pay can access things those in poverty cannot.  Poverty is a risk factor as it is, without it also limiting access to care.  Ideally there should be a system that is easier to navigate, where parents don’t feel they are fighting and advocating to the point of exhaustion.

Mental health care is a right, not a privilege.

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Photo: https://makingmomentsmeaningful.blog/2017/04/13/trauma-informed-care-values-youth-worker-values/

What to do when PTSD tells you that the entire world is unsafe?

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I don’t know what to do when PTSD tells me that the entire world is  unsafe.

Trust no one.  Trust no one.  Trust no one.

Everyone will let me down.  Nobody understands me.  It’s not safe to trust.  It’s not safe to open up.  The system is broken.  Nobody believes me.

Maybe it’s me.  Maybe I’m the common link.  Maybe I’m so deeply flawed that people are better off away from me.  Maybe I deserved to be abused.  Maybe I’m the real abuser.  Maybe I’m broken and selfish.  Maybe I am controlling.  Maybe I am incapable of loving someone.

PTSD lies a lot.

PTSD makes me push people away over tiny mistakes.  PTSD makes me feel like a small vulnerable child, when someone says one harsh word.  PTSD makes me freeze in a conflict or do anything to get out of it, even if that course of action doesn’t make long term sense.

PTSD at its root tells me that the world is unsafe.  PTSD tells me that I’m unsafe and that I’ll never be safe.

It also tells me that situations are either perfectly safe or completely unsafe and dangerous.

PTSD doesn’t find a middle ground easily.

I need to get safe and grounded before the middle ground reappears.

When I’m triggered it’s all or nothing.  All the fear.  All the self criticism.  Pushing people completely away.  Feeling hopeless and that nothing has meaning.

PTSD makes me feel like trust is completely destroyed when someone makes a mistake that hurts me.  PTSD tells me that person can no longer be trusted because they will only hurt me again.  PTSD tells me that I’m safer alone.  Or that others are safer away from me.

PTSD is not a realistic judge of anything.  It doesn’t accurately assess danger.  It doesn’t accurately assess me.  It doesn’t analyze situations clearly.  It doesn’t forgive.  It doesn’t forget.  It never forgets ANYTHING that makes me feel unsafe.  And it all gets tied together in a giant clump of tangled unsafe, danger.

On the other hand, PTSD tends to forget the good times, the moments of safety.  The moments of laughter.  The moments when life has so much meaning it hurts.  It forgets the perfect moments, or tells me they are worthless because they ended.

I’m not a perfectionist.  PTSD is a perfectionist.  I’m not a control freak.  PTSD is a control freak.   I’m not a judgmental person.  PTSD is judgmental.

PTSD changes me into a person I don’t even like.

I know people have limits and boundaries and are fallible.  I know I have limits and flaws.  I know that life has good times and bad.  I know that it’s important to be grateful and see the joy in little things.

I know.

But I don’t believe.  PTSD doesn’t let me believe.  PTSD doesn’t want to risk losing the good things, so it doesn’t want to get attached to them.  PTSD is always expecting the next crisis, the next drama, the next danger, the next heart break and the next pain.  PTSD is a child cowering in the corner waiting to be hit. PTSD doesn’t let me “just calm down” or “just smile.”

I’m always waiting to be abused again.  I’m always expecting to be hurt again.

Deep down inside I’m scared that I deserve it.  That I’m not a good person.

PTSD makes me believe that I’m not a good person and that I don’t deserve happiness and health.

PTSD makes me neglect my health, because “what’s the point anyways?”

PTSD tells me that nobody believes me.

PTSD is the combined voice of all the people who have abused and hurt me over the course of my life.  PTSD isn’t me.  It’s not my voice.  It’s not random and it’s not a character flaw.   It’s the cumulative result of years of gaslighting, emotional, physical and sexual violence.  It’s the result of a broken system, systemic/institutionalized abuse which did not validate my experiences.  It’s the result of the psychiatric system, the legal system, the police, child protection and violations of trust by people in authority.

PTSD is the reason I’ve spent more than half of my life not really caring about living (at best) or actively wanting to die (at worst).

Sometimes when I’m triggered it’s not just Ana (my angry teenager) who is on the scene.  It’s a much younger child, almost pre-verbal.  All that younger part wants is to be wrapped in warm quilts and be held.   She wants her hair stroked as she cries.  She wants to be cradled and rocked and shushed.  Gently and patiently, like a parent with an infant.   That part isn’t angry like Ana,  she’s just a deep well of unmet needs.  She just wants to be safe.  This inner child has been around a lot the past few weeks.

I just want to be safe.

But I’m an adult.  And I have to take care of my needs myself now.

Another abandoned hospital.

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I visited another hospital where I spent time as a patient.  This is the now abandoned Regional Mental Health Care Centre, otherwise known as the LPH, or prior to that the Asylum for the Insane.  There has been a psychiatric hospital on this site since 1870.

I walked around the large property.   Back in the late 1870s, asylums were located on large properties where patients lived and worked.  This property included a farm and a separate chapel.  For a time, there was a type of treatment known as “moral therapy” which included involving the patients in activities such as farming asylum land.  This site also witnessed many tragic and scary “cures”, like surgeries and electroshock treatments.

When I was a patient at the Regional Mental Health Centre, the facility was already operating at a much reduced patient capacity.  It has now been closed altogether and patients relocated to a modern, newly built site.

This site was creepy then and it is even more creepy now that it is abandoned.  I felt the energy around the property to be cool and sinister, despite the beautiful sunny day.

When I was a patient, we used to go for walks around the property.  There are long tree lined roads, which provide shade.   There was also the abandoned insane asylum.  The new building stands in it’s shadow.

This is what the building looks like today.  10+ years ago, it was even more run down.  The ceiling was falling in.  The glass in the windows was shattered in many places.  At night it was frightening.  I imagined ghosts and spirits of dead patients haunting the property.   On this visit I noticed that the city has added a new roof and boarded up all the windows.  Today, the building looks more like a museum.   The chapel and barns have also been boarded over and trees and grass are beginning to reclaim the entire site.

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It’s strange to think that the hospitals where I was treated are now torn down and abandoned.  I wonder what will happen to the brand new build in another 50-75 years time?

The time I spent at this hospital was a turning point in my recovery.  The mood disorder specialist who treated me recognized that I was being made sicker by the psychiatric drug cocktail I was on.  He changed all my medication, and within 5 weeks I was released from the hospital a significantly more stable person.  This marked the end of the 4 years I spent in and out of hospital.  It marked the beginning of the next chapter in my life.  It allowed me to become a parent.  My mood disorder specialist followed me closely during both my pregnancies and postpartum periods.  Without him, I would probably be dead and I certainly would not be a mother of two healthy children.

I have mixed feelings walking around the site.  I’ve always been fascinated by the history of medicine in general, but more specifically the history of psychiatry.  I feel captivated by the old building, while at the same time frightened and ill at ease.  I feel thankful that I was able to get the care I needed to begin my recovery.  But I feel unsettled that I had to spend time in a place like this.

The roots of an abusive relationship.

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Through some parts of my youth I kept diaries.  Never entirely consistently, but consistently for periods of time, especially when I was in treatment or in hospital.  I’ve been thinking back to this time of year in 2001.  My first year with my abusive ex husband.  My first year in psychiatric care.  My first year engaging in severe self harm.  My first psychiatric admissions (aside from eating disorder treatment).  My first suicide attempts. It’s interesting how all these “firsts” coincided so neatly in time with my new relationship.  At the time I thought it was because memories of the abuse I survived as a teenager were triggered and surfaced when I became sexually active.   That was part of it.  But there was more to it than that.  There was subtle abuse in my relationship with my ex husband that started very early on.  The seeds of gaslighting and emotional abuse were being planted.

It started with showering me with affection and attention.  It started with making me feel special and loved, almost to the point of making me uncomfortable.  It started with planning for the life we’d have together, the kids we’d have, the marriage…within months of meeting me (I was 19!).  It started with gifts, cards, flowers, spending all our time together.  It started with gradually isolating me from my other friends and social outlets.

Then some lies started.  And the lies were repeated so often I believed them to be true.

These lies were focused around my mental health problems and their link to my feelings about his abusive  behaviours.   He would tell me that it was because of my PTSD that I was uncomfortable with something.  He would tell me that a “normal woman” would be okay with it.  He would make me feel guilty, tell me that he felt like there were three people in the relationship: me, him and X.  He made me feel like I was CHOOSING to have flashbacks, like I was CHOOSING to think about X rather than him.  Almost like X was someone I never quite got over, a lost lover, rather than an abuser who had traumatized me to the point I often had flashbacks during any type of intimacy.  Over time, the lies were repeated to the point that I felt crazy.  I felt like I was to blame for the problems with intimacy in our relationship.  We even sought out support from a sex therapist to talk about this.  I had blood tests and was checked to ensure my hormone levels were normal.  I was completely manipulated into believing that the issues in the relationship were entirely my fault.

Today, in 2017, I realize I like some types of sex just fine.  I just prefer consent to be a factor in that sex!  In other words, I like sex, but I don’t like sexual abuse!  It turns out, I’m not physically broken.  I have PTSD.  I have flashbacks, but with a safe, trusted and patient partner I can be okay.  But because of the lasting impacts of gaslighting, I struggle with saying no. I struggle with blaming myself for anything that might go wrong. I struggle with identifying and communicating what I want or enjoy.  And I still fall back into patterns of believing that I’m crazy.

When I left my ex husband, I mainly remembered and talked about the sexual abuse that happened in the last 5-6 years of our marriage.  These were the incidents I felt most comfortable labeling “sexual assault” and “rape.”  When asked, I couldn’t really describe when the sexual abuse started.  I couldn’t really remember the first time.  I couldn’t really say when things started to go wrong.

But reading back in my diary from 2001, the first year we were together, there are so many red flags.  I can hear my 20 year old self trying to convince herself that things were okay.  I can hear my 20 year old self trying to believe that she loved this man she barely knew. I can hear my 20 year old self trying to rationalize that things would be better with him when SHE was better, when SHE stopped cutting, when SHE stopping being so depressed.  I can hear her trying to convince herself it was the right choice, and I feel deeply sad for her.

June 8, 2001

“The evening went well until the car ride home.  Before getting in the car I was feeling panic starting. [He] tried to kiss me but I pulled away.  He got offended.  I tried to explain but he got angry and said he felt stifled like he couldn’t be spontaneous.  He said I only make love to him out of duty.  I got really upset and started crying and I couldn’t breathe. It was like a panic attack and I couldn’t stop hyperventilating. I just was so very scared.  I’m terrified of being with [him], but I do love him too.  It’s such a dilemma all the time. I feel like it would be easier for me to get better without the strong feelings of a relationship.  But on the other hand [he] is my support.  I don’t know.  It’s so tough right now.  I’m so scared of my life and everything in it”

Looking back on the things I wrote, I realize that I was barely more than a child myself. Just turned 20 years old.  I had just disclosed the abuse from my childhood, just started counseling.   I was talking about abuse I’d kept inside for 5 years.  I was in full PTSD crisis mode, complete with flashbacks, hyper vigilance, anxiety and nightmares.  I was on psychiatric medication cocktails for the first time.  I was self harming almost daily and had recently attempted suicide.

It was perfectly normal that I didn’t always want to be intimate with someone.

Perfectly normal.

Today, I choose to forgive my 20 year old self for not knowing this.  I choose to forgive her for not knowing that she was having normal coping reactions to trauma and that she was not crazy.  I choose to forgive her for being tricked into a situation where, instead of healing and support, she found gaslighting, confusion, entrapment and more sexual abuse.

I know I’ll wake up tomorrow, or the next day and feel confused again.  I’ll wonder if the abuse was my fault.  I’ll think that I’m exaggerating or that I’m making things up.  I’ll start to feel the thoughts creep in that I’m not normal.  I’ll start to wish that I had died all those years ago when I attempted suicide.  I’ll start to believe his lies again, because a long term emotionally abusive relationship includes an element of near brainwashing which can take years of healing, therapy, patience, self love and self forgiveness to recover from.

But just for today, I want 20 year old me to know that her reactions were normal.  That she was allowed to say no to that kiss for any reason.  She was especially allowed to say no to that kiss when she was triggered.  She had the right to say no without consequence, without anger, without bullying and blaming.  She had the right to have needs and preferences and anxieties.

It wasn’t her fault that he didn’t understand consent.

South Street.

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Photo credits to the London Health Sciences Centre website documenting the decommissioning and destruction of South Street Hospital.

I’ve been thinking about South Street.   It’s been completely demolished now, destroyed and decommissioned but it’s still alive in my memory.

I haven’t written many posts about being in the hospital since I started this blog almost a year ago now.  Those were first posts, the first thoughts on my mind which I wanted to share.

I think people who have never spent time on a psych ward often have a dark curiosity about what they might be like.  I find myself filled with the same morbid curiosity as I search through pictures of the abandoned South Street hospital online.  How can a place where I survived so much just be demolished?  On one hand I’m glad it is gone.  It was a horrible place!  On the other hand, I feel like it should have stood there forever as a monument to the suffering and the intensity I felt there.

What were days like as a patient at South Street?

The days varied slightly depending on which unit I was on.  There was something comforting about the meals being delivered on neatly organized trays.  In the morning you could select your choices for the following day, marking them off on a paper slip.  The selection for vegetarians was rather poor.  The food in general was awful, but they would bring me a peanut butter and jam sandwich for lunch.  I wrote in my request beside the offered choices.   In the morning there were little boxes of cereal and tiny muffins.  Breakfast was always my favourite meal.   For your first day or two, your meals are delivered directly to your room.  After that you were encouraged to eat with the other patients in a small dining room which was unlocked at meal times for this purpose. I never ate there.  I carried my tray carefully back to my room where I ate alone.  The meals arrived like clockwork at 8AM, 12PM and 5PM.  You could order ginger ale as a snack or a treat, it arrived in a paper bag with your name.   I used to order Colt diet ginger ale, but I’d use the edge of the can to hurt myself, I never drank the pop.   Dinner was the worst meal.  There were a selection of about 4 different vegan dinners that came in plastic trays, preheated.   I would peel the plastic wrap off and sample them, sometimes eating very little.   The arrival of the trays marked the passage of time through the day and the long hours after dinner stretched out, especially if you didn’t have a visitor.

Medication times were another way to tell the time.  At first my nurse would come to my room to give me the selection of pills (at one time I was taking more than 11 pills a day).  After settling in, patients reported to the nursing station at set times to receive their pills.  Each pill came in a tiny sealed plastic bag, labelled with my name and patient number (I still have it memorized!).  The nurse would check my wristband carefully against the name on the plastic bags.  Then the nurse would rip them open carefully and tip the pills out into a small paper cup or into my hand.  I would get another small cup with water and the nurse would watch me swallow the pills.  Night time medication was always greatly anticipated as it marked the end of the day and the time at which it was acceptable to go to sleep for the night.  Realistically, on high doses of anti-anxiety and anti-psychotic medication I often slept during the day as well.   Floating in between high levels of anxiety and thoughts of self harm and suicide, and drugged, sluggish, words slurred together medication induced slumber.

There were no cell phones at that time, difficult to imagine!  There was a Bell payphone at the end of the hall in the TV lounge area.  There was a black leather chair you could sit in while you were on a call.  There was another payphone halfway down the hall, at the edge between the Y and Middlesex portions of the 7th floor (older and comparatively newer parts of the wing).  Talking on the phone to friends and family members was one way to pass the time.  Some patients also sat in the TV room watching whatever was on. I rarely sat there, preferring to stay in my room or in the room of a co-patient I had befriended.

If you were upset, you could ask to speak one on one with your nurse.  There was a small room attached to the nursing station where we could sit.   Sometimes the nurses would speak to me in my room.   The psychiatrist would visit once every few days.  These visits were highly anticipated.  Sometimes I would wait around the floor for hours, figuring that my Dr might check in on me.   Visits from the psychiatrist meant changes in medication, changes in privilege levels, and often discharge from the hospital.  The doctor generally just spoke to me in my room, even when the room was shared with 1-3 other people.  The level of privacy on the psych ward was very low, unless you were lucky enough to be moved to a private room.

Private rooms were highly coveted.  On the psych ward private rooms had nothing to do with the insurance coverage you had and everything to do with privileges.   When I arrived on the 7th floor I was generally in a ward room, 4 beds separated with curtains.  I didn’t mind this as long as I had one of the two beds by the window rather than one of the two beds by the door.   Patients who just arrived on the unit were placed in the ward rooms closer to the nursing station.  Aggressive or self destructive patients were placed in these rooms.  If I stayed longer, I would often be allowed to move further down the hall, further from the nursing station and closer to the exit (both literally and symbolically).   I loved the single rooms which had their own washrooms.  All the rooms had these chain link grills over the windows, but some of them did open a crack.   There were also double rooms, some of which did not have washrooms.  There was a shared shower room.  It had space for 3 people to shower or bathe at the same time, but the showers were separated by curtains.   Rumors circulated that people had completed suicide in these shower rooms and all the patients believed them.  There was also a laundry room where longer staying patients could wash their clothes.

The best part of staying at South Street was that I was generally allowed to come and go for brief periods on my own.  Sometimes I was allowed only on hospital ground, in which case I would go down to the patio at the back of the building.  This was a place where smokers could smoke and psych patients who were not allowed to leave could get some fresh air.  I would go down there with fellow patients sometimes and it was almost like an outing.  Smokers looked forward to the scheduled times we were allowed to leave the unit.

Other times I was allowed to go for short walks around the neighbourhood.   I used to walk down to the river by the hospital.  I’d walk around the streets in the area.  Sometimes I’d walk to Tim Horton’s and buy a piece of caramel coffee cake.  There was a walking path along the river to a small waterfall.  I know we sometimes though of jumping into it.  There were ducks which could be fed if you ordered extra bread with your meal.  Sometimes I walked alone, sometimes with visitors and sometimes with other patients.   I made some friends at South Street.  A few of them I still stay in touch with today.

Ironically enough, many of the patients were allowed to basically come and go as they pleased.  At night the door was locked and you needed permission from your psychiatrist to have a pass home for the evening or overnight.  Sometimes I had accompanied passes which meant my boyfriend had to sign me in and out.  Other times he would just drop me at the front entrance.   Ironically, though I was often admitted to the hospital for self harm and suicidal thoughts or attempts, I was still allowed freedom to leave the floor unaccompanied.   In reality I could have harmed myself pretty much anytime I wanted, even when in the hospital.  Sometimes I did, but other times I didn’t.

I often wonder exactly what made the hospital safer than being at home.   I think it was the thought, or the hope, or the desperate idea that it was safer which kept bringing me back there.  I was almost hypomanic and highly impulsive about self harm while I was taking anti-depressants.  I felt unsafe, I thought I’d be safer in the hospital, admitted myself then realized I felt trapped.  I was generally a voluntary patient, so I soon discharged myself and the cycle began again.  I never really felt safe anywhere.

Sometimes the hospital was a comfort.  The routines, the quiet, the break from real life.

Sometimes the hospital was terrifying, like when one of my roommates was cutting and snorting cocaine in our shared washroom.  Leaving blood and white powder traces for me to find.   Like when a patient who dressed in black and openly worshiped Satan was restrained by multiple security guards and wheeled down the hall on a gurney screaming.   Like when an old man came up behind me in the hall and placed his hands around my neck, whispering that he would kill me.  Like the blood stains on the 7th floor carpet, from where a man had been seriously injured trying to escape.

There was  tenuous grasp on order there, and we all knew it.   Sometimes people think of the psych ward as being filled with crazy people.   But in reality, I was neither more nor less crazy than the other people there.  I wasn’t psychotic, like some of them were, but I was destructive and depressed.  Everyone was there because they weren’t safe.  Our reasons were different, but the result was the same.  We all lined up for our pills.  We all ate our meals off plastic trays.  Some of us were allowed real cutlery and others only plastic.   The lines were drawn in terms of privileges, delineating various levels of “crazy.”  But in the end we were all there together.  We were all psych patients.  I see myself as being no different from the others.

Even today, over a decade later, there is a part of me that still holds that identity.  The identity of being on a psych ward, of being hospitalized against my will.  It did change me and it did shape me.  But it no longer defines me.

 

 

No, you don’t have the right to torture me

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This is what the stigma of being misdiagnosed with borderline personality disorder means to me.  Trigger warning for description of self harm and abuse.

Monday November 8, 2004

I presented to the Emergency Room at South Street Hospital with a self inflicted cut on my arm.  By this time I had been using hospital psychiatric services for over 3 years.  I was a frequent flyer, a regular, a repeat customer and I was not popular.  I had experienced many unpleasant experiences in the ER.  I had grown accustomed to medical students poking at me and asking ridiculously offensive questions.  The worst was “Why don’t you cut yourself deeper so it would hurt more?”

I’m only going to say this once.  In my opinion someone who uses psychiatric services heavily is actually in MORE need, likely MORE desperate and experiencing MORE complex issues that someone who is visiting for the first time.  As mental illnesses progress folks become sicker and more marginalized by society.  What is needed are more individualized care plans, more compassionate care, more empathy and more listening to the survivor.  The survivor themselves is the expert in her own healing.  One size fits all models of care do not work, they have never worked, and will never work.  Each person is unique and experiences a unique mix of oppression and marginalization as they live with their illness.  Social and structural factors are an important thing to consider.  The survivor does not exist in a vacuum.

Believe me, if someone truly had options, they would NOT choose to spend their lives in psychiatric institutions.

Part of the reason I used the Emergency Room so frequently at that time was because I had neither a family doctor, nor a psychiatrist seeing me for ongoing care.  Lack of access to primary and preventative mental health care is a huge issue.  Another major barrier is the existence of a two-tiered mental health care system; whereby folks who have financial resources are able to access private care from psychologists and social workers and economically marginalized people (the sickest and most at risk) often face long waiting lists, lack of affordable housing and gaps in services.

By that time Dr. X had stopped seeing me.  This happened over a period of months.  First he would cancel appointments, then not show up for them.  I was busing across town to meet him and he just would not be there.  Then he switched from an outpatient practice and seeing inpatients on the 7th and 8th floor to working full time in the Urgent Psychiatry Clinic and the ER.  When he switched his practice I was not assigned to another doctor, nor was a given a community referral.  Thus, my only option was to attend at the ER to get a psych consult and an appointment with Urgent Psychiatry.  I begged and pleaded and searched for a new doctor but I was not able to find one.  I found out later that Dr. X had essentially blacklisted me at South Street and no psychiatrist would take me on because I had “borderline personality disorder.”  I was also denied access to the PTSD treatment program, after waiting on their list for 18 months.  I was told I didn’t meet the criteria for the program.  Ironic since PTSD is my main, if not only, diagnosis.

But I digress…back to November 8, 2004.

I waiting in the waiting room for about 1 hour before being brought back into the curtained treatment area known as OR 2.  When I was directed to a bed I began crying and was visibly upset.  A nurse arrived to take my history, but she was interrupted by Dr. P who dismissed her saying “you are wasting your time.”   Dr. P spoke to me in a curt and derogatory manner, asking to see my laceration.  He took a quick look at it and said he was going to staple it.  I began crying and asking him to please stitch the cut instead because staples really scared and triggered me.  Dr. P laughed at me and asked me to lie down and proceeded to quickly clean the cut.  He then held my arm down and proceeded to place 8 sutures into my forearm without using any local freezing or pain relief.  I was sobbing and screaming and he continued offering no sign of sympathy or concern.  I couldn’t understand why he was not following procedure and I was confused and distressed.  I felt as though I was being purposely targeted and tortured because my wound was self inflicted.  I felt like Dr. P wanted to “teach me a lesson.”  I was known to him from previous visits and I got the sense he did not want to see me in “his” ER again.

After he was finished the nurse came back and tried to calm me down.  She reported the incident to the charge nurse who also comforted me and offered me Advil.  I was then taken to the psych waiting area to meet with the doctor on call.  I was very upset, triggered and in a lot of pain.  I remember curling up into the smallest ball I could make in the uncomfortable plastic chair which was bolted to the ground.  The floor was covered in green tiles.  All the furniture was bolted down, presumably to stop patients from injuring themselves of others.  It was a cold room, I remember I was shaking and probably in shock.

I reported the incident to the College of Physicians and Surgeons a few days later.  The treatment I received was abusive and was physical assault.  I came to the hospital (already living with PTSD) and I was traumatized in a time of crisis.  I firmly believe that if my cut had not been self inflicted and if I had not been labelled within the hospital as a “hopeless case” this assault would not have taken place.

Procedure allowed Dr. P to write a response to my complaint.  In his response he actually admitted to speaking with Dr. X who told him that I “had long standing borderline personality disorder and that none of his colleagues would take [me] because of this.”  Incredible!  Psychiatrists in the hospital were actively denying me care due to a psychiatric misdiagnosis?  I wouldn’t believe it except I’ve seen my charts and I know it to be true.

Dr. P’s explanation for not using freezing was that he thought my arm was so full of scar tissue that I would not be able to feel the sutures.  This made no sense since I was screaming while he stitched my arm.  He wrote that he offered me anesthetic which was a lie.  Luckily the two nurses who were working supported my account of events.  Also the Dr did not note in the chart that I had refused local anesthetic which is standard protocol before proceeding without it.   I found out later that my complaint was not the first one made to the College about Dr. P and his behaviour in the ER.

The College upheld my complaint and Dr. P was ordered to appear before the College for discipline.   I’m not 100% sure what that entailed but my complaint was heard.  I did feel validated by that, but it did not undo the trauma that I experienced.

I experienced torture within a Canadian hospital.   This happened because of the label of borderline personality disorder.  This happened because I wasn’t getting better quickly enough, because I wasn’t acting in a way that was expected of a survivor of violence.

But this should not have happened, not to me, not to any person.  Especially not to a survivor of abuse.  Self harm was a normal coping reaction for me.  My personality is not disordered, I survived ongoing sexual and emotional abuse; as well as dangerous side effects to the very medications the hospital kept pushing at me.

My message to the world:

Please treat folks who harm themselves with care and compassion.  Chances are they are already judging themselves far more harshly than you ever could.  Self harm is a misunderstood coping technique, it is not a way to get attention.  If you haven’t harmed yourself, please don’t judge, you haven’t walked in our shoes.  The reasons why people turn to self harm are complex and layered. By showing love and compassion to the self-injuring person you could be literally saving their life.  We don’t want or need to be saved, we just want to be respected, heard, and valued.

If you do harm yourself, please know that you are loved and important.  I hope one day you will find other ways to cope.I support you and I am glad you are fighting rather than giving up.

The world is a better place because you are in it.