the truth is hard.

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I owned a set of fridge poetry magnets when I was 15.  They were stuck on the fridge in the house where I lived with my parents.  When I was 15, I wrote this poem with fridge magnets about being sexually abused:

Time together

Alone with thy soul

There is always my body.

 

I smile at nothing

But desire

Fire craving winter.

 

Take when you want.

I could never

Disdain it enough

to break your heart.

 

the truth is hard.

In my 15 year old mind it was clear what the poem was about.  It was direct, it wasn’t even thinly veiled.  The double meaning of the word “hard” was intentional.  To me it was a message, it was a cry for help.  It was an attempt to communicate that all was not well.

Reading back to my journal from 1996, it was clear that I knew something was wrong.  I can hear myself trying to justify X’s actions, trying to defend him, trying to believe that everything would be alright.  I can hear myself blaming myself for not being comfortable.

Less than 1 month into the relationship with X:

May 2, 1996

He moves very quickly though, and is very persuasive when he wants to be.  That worries me a little bit, because he’s very forceful. I think that if I said no and meant it he would respect my choice…X turns into this totally different person when we are alone. He talked me into going under the covers.  At first I felt really uncomfortable…he can be so different, his different personalities are very drastic.  Like Dr. Jekell and Mr. Hyde…it worries me a little…the intensity of it scares me.

May 7, 1996

I’m not sure I understand X. He can’t seem to behave in public. He always wants to be physical with me, even when it isn’t appropriate.  I’m going to have to tell him that holding hands and kissing are OK in public, but anything farther isn’t.  He also doesn’t always stop right away when I ask him to. It’s as if he doesn’t believe I actually want him to.  Then he apologizes a lot after and seems to feel guilty, but he does it again…I’m sure after I talk to him he’ll act more appropriate.”

I wrote a lot about how it was my fault that I wasn’t comfortable.  I wrote about being too worried about other people’s opinions of me. I wrote about being seen as “Ms. Perfect” and struggling to live up to those ideals, especially when I didn’t see myself as perfect at all.  I wrote about the sexual relationship as a conflicted way to challenge people’s ideas that I was perfect, but really I was filled with guilt and shame about what was happening.  I couldn’t possibly be “Ms. Perfect” because if people really knew what was going on between X and I in private, they would be ashamed of me and hate me, the way I hated myself.

Looking back on it, I blamed myself for the abusive behavior of another person.  I thought that I was doing something wrong.  I thought his parents would hate me, my parents would hate me, my friends would hate me, and that generally everyone would think of me as a slut if they knew the truth.

So I didn’t tell anyone.  I didn’t tell anyone for 5 years after the abuse ended.  When we broke up, we started being “friends” and I fell into the deep abyss of anorexia.  The whole trauma which set this into motion was essentially erased, my hurt abused self was replaced by a frail skeletal figure, drifting though the halls of our high school, detached from everyone.  In order to make the abuse disappear, I tried to disappear.  I almost succeeded.

5 years later when I met my ex-husband, I fell into the same patterns.  I convinced myself it was my fault.  It was my issue that I wasn’t comfortable with the sexual stuff.  If I tried harder and was less depressed he would change his behaviour.  I blamed myself a thousand times more than my abusers every blamed me.  I abused myself a thousand times more than all of my abusers combined.  This is what trauma does to a young person.   By the time I even considered talking about the abuse, I was already caught in a second abusive relationship.  I never really had a chance to heal.

It wasn’t my fault.  I believe that abusers see vulnerable people like me a mile away.  They see us and they target us.  They know that we are less likely to fight back.  They know they can exploit our tendency to blame ourselves. They know they can build empires of abusive lies on the backs of our low self esteem and desire to please.

It wasn’t that I didn’t know I was uncomfortable.  It wasn’t that I didn’t know I wanted the sexual abuse to stop.  It wasn’t that I didn’t recognize that my boundaries were being pushed past and ignored.

It was that I blamed myself for the transgressions.  This was due to a mixture of the abusers gaslighting and confusing me, and my own lack of self confidence and self esteem.  My desire to please others was pre-existing and abusers knew they could use it to their advantage.

I didn’t scream or fight back because I believed it was my fault.  I felt so much shame, that I didn’t want to create a fuss.  I wanted to disappear and be invisible.  I turned to anorexia as a coping technique and a way to take up less space.  I tried to shrink my guilt and shame.  I tried to decrease the dirty feeling, by decreasing the size of my body.

I blamed my body because in my teenage mind, if I didn’t have a body I wouldn’t have been sexually abused.

 

 

 

Trusting my younger self.

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I’ve been reading through my journal from the first year of the relationship with my abusive ex-husband.  I’ve been reflecting on how I was gaslighted and how, in a way, I gaslighted myself.  I used the same coping techniques I did when I was abused at age 15. I found myself in another abusive relationship and I immediately began self harming, restricting food, and thinking about suicide.  As a distraction it worked, just as it had when I was a child.  I did what I needed to do to survive. I turned to creative (if self destructive) coping techniques that got me through very difficult situations.  But my inner self, my younger self did know something was wrong.  There was a part of me, healthy me, which was separate from “the voice” or “Ana.”  That part of me knew that my new relationship was deeply and integrally connected to my relapse and worsening psychiatric symptoms.  My wise younger inner self knew that I was in trouble, but she asked for help in ways that distracted and confused other people, even her own healthy self.

This is a concept that is often very difficult for those who have not survived abuse to understand.  It can be challenging to understand that the survivor will do whatever it takes to survive, even if those coping techniques may look like self destructive behaviours from the outside.  The survivor may feel she has limited or no options.  For various reasons she has been conditioned not to scream, tell, ask for help, run away, fight back etc…or maybe she tried those things and they didn’t work. So instead she turned to disassociation, self harm and eating disorders as a way to modulate and live with the abuse and all the symptoms of PTSD.

I was conditioned, maybe almost from birth, not to make a fuss.  I was conditioned, maybe almost from birth, to be a “good girl.”  I internalized this in a way that led me to blame myself for the abusive behaviours of others.  If I was being hurt it was because I wasn’t a “good girl” and if I wasn’t a “good girl,” then I must be a bad girl, maybe a very bad, shameful, dirty and disgusting girl.  Thus, Ana/”the voice” was born.  There was a part of me that split off and became self abusive and self critical.  A younger self, a part that never ages or matures.  A 15 year old frozen in time.

This is how I described “the voice” when I was 20 years old (ironically the description came right after mentioning intimacy with my ex):

February 21, 2001

My body feels too big and uncomfortable right now.  I know it’s because I’ve been eating more normally and feeling hungry.  The sensation of hunger is not an easy one for me.  It is frightening. Like I feel afraid of losing control of myself. And yet I know that the E.D is out of control. It is a part of me that often deceives and betrays me. I know that in the end, though it feels comfortable, it cannot be trusted.  The voice which tells me not to eat, tells me to cut my skin, to smash my head against a wall, to step out in front of traffic all sorts of dangerous hurtful things.  It speaks to me in persuasive ways.  It is a part of me and yet foreign.  My ally and my enemy, my strength and my destruction. But after so many years it is the way I know.  A method of ridding myself of unwanted feelings”

When I was 20 I was able to recognize some of the signs of abusive behaviour in my ex. I was able to identify that I felt afraid.  But I didn’t draw the right conclusions from there. I blamed myself, I thought I needed to work on my depression, my recovery, get better at coping with anger etc.  My younger self tried to problem solve by changing herself, just as she had at age 15.  Just as she had for her entire life.

March 12, 2001  [written after being asked to swing dance with and dancing with a friend, a man I’d briefly dated]

So the evening was going well until one crucial moment…asked me to dance.  I figured one dance wouldn’t hurt and I didn’t think [he] would mind…but [he] did get upset and left the room.  I followed after the song was over. [He] got angry at me saying that I couldn’t stand up for myself and say NO.  He totally misunderstood and overreacted.  I got terribly upset and started crying totally uncontrollably…I was so disappointed that my night was ruined.  I felt so much like hurting I became filled with intense suicidal thoughts. I hate feeling my independence threatened by a relationship. I want the freedom to choose who is in my life.  When [he] gets angry it just terrifies me and makes me want to hurt, with him is when I feel the strongest feelings

My younger self clearly articulated that she felt uncomfortable with being controlled and with the jealous behaviour.  She clearly made a link between the angry jealous behaviour of her boyfriend and the suicidal and self harm impulses.  My younger self was wise on a deeper level, and yet she stayed with that man for 13 years.  It’s difficult to make sense of.  My adult self wants to travel back in time to that night, to go back to the dance with my friends, to tell him in no uncertain terms to F*#K OFF and leave me alone.  My adult self wants to protect that younger me, give her the strength to listen to her instincts and fight back rather than turning to a downward spiral of self destruction that would lead to 4 years in and out of psychiatric hospitals.

The next day, March 12, 2001 I was admitted to the hospital.  I wrote in my journal again, but made no link between the previous evening and my suicidal obsessive thoughts.  The self destruction worked as a distraction from his controlling behaviour.  The hospital was a place to get away from him.  The routine and the process of hospitalization was an escape.  I would feel safer in the hospital for a few hours or a few days, then I’d realize that the hospital wasn’t a solution and I’d want to be home.

I think what I really wanted was to be safe.  What I needed to be safe was to exit the abusive relationship in those early stages, when I still had the chance.

Because within a few short weeks I was already beginning to convince myself it was my depression and PTSD causing the issues in our relationship:

March 26, 2001

“The things that I thought were stable and unchanging have become uncomfortable. I can’t tell if it’s my depression pushing [him] away or actually me. It’s so hard to face that possibility. I want things between us to be simple again. I miss how easy we used to be together.  Now I feel distant from our relationship”

April 4, 2001

“I don’t feel as easy around [him] lately. Mind you I haven’t felt easy around anyone lately. I feel withdrawn, like I have built up the walls around me for protection from the storm.  But this is so ineffective because my storm is coming mainly from within. I don’t know how to protect myself from myself. I really am my own worst enemy”

Maybe I was never my own worst enemy.

Maybe the storm was never “mainly” from within.  Maybe I was confused and living with emotional abuse and gaslighting.  Maybe I bought into blaming myself as a coping technique, as a way to survive, and as a way to feel more in control of a scary situation.  I blamed myself and my mental illness rather than facing the reality that I was in an abusive relationship.  It was “easier” to seek help through psychiatry than it was to leave the relationship.

Looking back it all seems clear.  But my 20 year old self had less wisdom, less experience, less resources and less knowledge.  My 20 year old self did the best she could.  She did try to express herself, she just didn’t have the skills to listen to herself or to ask for the type of help she truly needed.  And those around her weren’t able to interpret her self destructive behaviours as, not a cry for attention or a manipulation, but a message.  A red flag waving, signalling that all was not well.  Help was needed, but psychiatry wasn’t the correct tool for the task.

Unfortunately, my younger self wouldn’t cross the threshold of a rape crisis centre for another 12 years.

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.

How to ask for help? If mental illness was treated like physical illness…

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Photo credit Hyperbole and A Half Blog

I’ve been struggling recently with trying to figure out how exactly to ask for help.  How do you even tell people around you that you are not okay when you are struggling with an invisible mental health disability?  How do you tell people that the disability which you live with daily and generally “manage” is currently in a crisis state?  How do you tell people that you are struggling with thoughts of harming yourself?  How do you tell people that you need help because you are suicidal?  How do you even bring up the topic of suicide?

It’s not easy.  Half the time I drop the topic casually into conversation the person I’m talking to thinks I’m joking.  They might even laugh, then awkwardly realize I’m not laughing and say “Oh wait, were you serious?” and when I say “Kinda” I hear…

<crickets>

That’s right…nothing.

A lot of the time when I disclose thoughts about harming myself I hear:

<crickets>

Or people keep talking.  Or they assume this is normal for me and say “that’s too bad” and move on with the conversation.

I’ve learned that most people don’t know how to handle disclosures of thoughts of suicide.

If I walked up to you right now with a serious physical medical emergency, for example signs of a heart attack and said “I need help, I think I’m having a heart attack”  I can pretty much guarantee the response would not be:

<crickets>

Someone would do first aid, they’d call 911.  They’d drive me to the hospital.  They’d stay with me.  I’d get flowers and cards, meals delivered.   I’d get time off work, more cards.  People would visit me at home as I recovered.  Friends and family would be so glad I survived the heart attack, they’d offer to help with child care and housework and cooking.

People KNOW how to help with a medical health emergency.  So why do they respond with

<crickets>

to disclosures of thoughts suicide, self harm or other signs of a mental health emergency?

Why is it so hard for me even to disclose the struggle?  Why is there SO much stigma?

I’m afraid to ask for help because of the risk of two things

  1. The person will overreact (call 911, police, hospital, panic, lock up dangerous items)
  2. The person will under react (see <crickets>)

What I really need when I ask for help is for someone to:

  1. Believe me that I’m actually suicidal and that things actually feel THAT BAD
  2. Trust me that I’m not actually going to do anything dangerous, but that I need some help in the moment to achieve that
  3. Listen to me.  Validate my feelings.   Let me know that they can hear I’m in pain.
  4. Remind me that I might be experiencing flashbacks, triggers or emotional flashbacks and that they are real, but I might not be seeing things completely clearly and I might need time to get safe and get grounded
  5. Keep me company (text, phone, go for coffee, take a walk, cuddles)
  6. Remind me that people care about me and that I’m not a bad person.
  7. After validating my feelings, offer some hope that things will improve one day and that I have the strength to carry on until then.  Remind me of some of my strengths (but be realistic, don’t go over the top with praise)

I really believe that you can help people around you who might be struggling with suicidal thoughts.  You can help them by listening to them, believing them and keeping them company.  You can also offer to do some of the same things you would for someone who is physically ill.   Offer to help with child care, meal preparation, cleaning, picking up groceries, running errands, drop by for a visit (ask first), call to check in, text to say hi, send a thinking of you card, send flowers etc.   In my own experience, the worst thing you can do is…

<crickets>

I wanted to share my favourite  blog Hyperbole and a Half and their post about depression:

http://hyperboleandahalf.blogspot.ca/2013/05/depression-part-two.html

How to cope with chronic suicidal thoughts…

People who don’t struggle with chronic suicidal thoughts sometimes imagine suicide as the type of crisis that happens in the movies.  And it can happen this way, but not for everyone.  You know the cliched scene (we’ve all seen it) someone loses their job, breaks up with their partner, makes a terrible mistake, suffers the loss of a loved one etc. and they spend a dark night contemplating ending it all.   Maybe they reach out, a friend comes over, makes them tea, stays up all night and talks them through it.  Or maybe they are taken to a hospital emergency room, where staff admits, them and they are released a few days later, on medication and thankful that they are still alive.

Yes, single episode suicidal crises happen.  They are terrifying and frightening and can be medical emergencies.  If you are struggling with this type of crisis, you are not alone.  Suicide is a permanent solution to a temporary problem.   There is help available, even though reaching out can be scary.

But what if this isn’t your experience.  What if, like me, you struggle with chronic suicidal thoughts, on and off, for decades?   What if suicidal thoughts and suicidal impulses became, during times of trauma, part of your coping mechanisms?  What if suicidal thoughts, ironically and paradoxically both threaten your life and help keep you alive?  What if it isn’t just “one long dark night”?  What if it isn’t something that a trip to the local emergency room and a short psychiatric admission can even touch?  What do people like me do when they hit a rough patch?

It’s complicated.  It’s complicated for a number of reasons.

  1. It’s very hard to even talk about suicide.  It’s not an easy subject to bring up.  I’m always afraid that people will either overreact (ie. treat it like the suicidal crisis described above and call emergency services) or under react (and ignore my disclosure or not offer support).  Let’s face it, most people aren’t comfortable talking about suicide.  If someone asks me: “How are you doing today?”  they don’t want to hear “Actually I’m dealing with suicidal thoughts at the moment, thanks for asking.”  It’s just not something I can say.
  2. If I do disclose that I’m having suicidal thoughts, most times people just sit there awkwardly.  Try to figure out if I’m joking or serious.  And then change the subject.  Meanwhile, I’m sitting there, just as awkwardly, feeling guilty for making the situation awkward and not just saying “I’m fine.”
  3. See point #1.  Talking about suicide is a societal taboo.  I’ve had these thoughts for 20+ years.  I’m still alive and I’m still finding it difficult to talk about them.  There is something about this that doesn’t quite make sense.
  4. There is an incredible amount of shame related to this societal taboo.  This means that not only do I feel suicidal, I also feel ashamed about it.  I also feel afraid about the consequences that could occur if people find out and misunderstand what chronic suicidal thinking means (aka…911 calls, police, hospitals).
  5.  Suicidal thoughts are not a “cry for help” or a “way to get attention.”  Most of the time I deal with suicidal thoughts alone and people aren’t even aware that I’m having them.  Even when I do disclose, I generally minimize how bad they are.  I try to cope by myself as much as possible.  Self harm has also been a very private thing in my life.  For something to be a “cry for help” generally other people need to actually know about it!  It would be more accurate for me to describe the suicidal thoughts as a way to gain control, the ultimate control, over an overwhelming or out of control situation in my life.  It’s also related to obsessive compulsive thinking, and in that way can be circular and very difficult to control.  Sometimes I have intrusive thoughts about suicide that are obsessive and not related to anything in particular in my life.  They are disturbing to me and they are  unwanted, arriving in my brain suddenly and then leaving.

So how do I cope with these chronic, obsessive suicidal thoughts?  I use some combination of the methods below, depending on what type of thoughts I’m having, how long they last and how severe they are.  It can be helpful to make your own “safety list” with various ideas that you can use when your suicidal thoughts make an appearance.  I suggest that you create a variety of coping ideas, because chronic thoughts of self harm are very persistent and won’t likely go away with the use of just one distraction or grounding technique.  If you are lucky enough to have a supportive partner/friend you can give them a copy of your safety list and they could help you use some of the skills in a crisis situation.  For some folks, taking medication or calling a support line can be items on their lists.

  1. Delay. Delay. Delay.
  2. Distract. Distract. Distract.
  3. Remind myself of reasons why I need to stay alive (aka my kids)
  4. Listen to nature sounds on Spotify.
  5. Get in a safe space (aka my bed, under lots of warm blankets, away from anything potentially dangerous.  This works best for the most severe thoughts when other techniques may not be safe)
  6. Take a walk outside, ideally in nature.  Breathe, move my body.
  7. Drink a hot beverage (tea, hot chocolate, coffee)
  8. Reach out to a trusted friend (I may or may not tell the person I’m struggling)
  9. Blogging (others may use journaling, art or other creative outlet)
  10. Helping others, volunteer work, helping a friend in need (this works very well for me, but caution as it can lead to burn out if this is your only coping tool)
  11. Disassociate or zone out (ensure that it is safe to do so)
  12. Pay attention to your environment.  Count things you can see, feel, touch, hear.  Ground yourself in the present moment.

If you are coping with chronic suicidal thoughts, I hope that reading this post helps you to feel a little bit less alone.  If you don’t struggle with them, I hope it helps you to understand them a little bit and maybe allows you to help others around you who might be living with them.  Many people live with suicidal thoughts for years, it’s exhausting.  So very exhausting and nothing at all like what is presented in the movies.  But it has to be better than the alternative.  So I keep trying and keep breathing!  Keep hoping that it will get easier for all of us!

How are you?

how-are-you

How are you?  How are you doing?

Fuck.   They feel like SUCH  loaded questions right now.

99% of the time people want to hear the standard answer:

I’m fine thanks, how are you?

But I can’t lie.  I’m not fine.  That being said, I know that 99% of people don’t have the time or energy to listen to how I’m really feeling.  Maybe they don’t care, maybe they are busy, maybe they don’t have spoons, maybe they are at work, maybe they were just asking to be polite.

I’ve started answering this question with:

The same.  It’s always the same.  I’m always the same.

Until I get the verdict, I’m not going to be fine.  I’m probably not going to be feeling better, and I don’t have the energy to lie about it.

I’m feeling grumpy today.  I’m feeling grumpy because I just want to cry when people ask me how I am.  I want there to be space for me to not be okay.  I want there to be space to just not function for a while.

I came home after a long day.  It’s cold outside, unseasonably cold for May.  I was shivering.  It was time to eat.  I decided to make myself grilled cheese. Comfort food.  What could be simpler?

I burnt the shit out of that sandwich.  So burnt it wasn’t even possible to scrap the black bits off the edges.  Throw it in the garbage burnt.   I wanted to burst into tears.  “You can’t even make a simple sandwich!” screamed the self critical voice in my head.  Somehow this burnt sandwich became a symbol for everything I feel isn’t going right today.

It’s difficult feeling lonely.  It’s difficult feeling like the one who is never “fine.”  I feel like I’ve been losing friends or driving people away from me because my life is complicated and I’m not always easy to be around.  I feel like I’m whining, complaining, self-absorbed, wallowing, not being grateful…lots of self criticism.  I know I’m doing the best I can.  It just never seems like enough.

In all likelihood, there are only a few more weeks of waiting left.  Things are going to shift in my life soon.  Potentially in major ways.  I’m so close to the end of this chapter of the journey.  I’m so close I can almost see the finish line.  I can almost reach out and touch my new life.

But it’s just out of reach.  It’s blurry and uncertain.  After 3.5 years in court and almost 14 months of waiting…a 16 month long total (and counting) trial process…it’s actually no longer possible for me to clearly visualize or imagine it being over.  I used to fantasize about getting the verdict.  Where will I be when I get the call?  Who will I tell first?  How will I feel?  What will happen from there?  So many unknowns.  In a way, waiting has become normal for me.  In another way, it has never felt normal.  I’ve never adjusted to having so little control over my own life.

It’s a unique situation.  Very few people in my life can relate.  It’s gone on for so long, very few people still have time to listen to me talk about it as much as I feel I would like to or need to.  Everyone around me is tired and frustrated too.  Nobody knows quite what to say. I understand.  It’s been a long journey.

I’m so close to the end.  But I’m not fine.  I’m burn out and I’m afraid.

You need a lot of energy to be sick.

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Another stereotype or stigma that I’d like to debunk right now is that people living with disability or chronic illness are lazy.  That they have SO much free time and can “do whatever they want” because they are unemployed.  We’ve all heard versions of this abelist stereotype.

It’s just not true.  People living with chronic health issues are as varied and different as people who are well, healthy, neurotypical or able bodied.  They are not lazy.  Being disabled is not a lifestyle choice.  Some people with disabilities are able work/volunteer/attend school and some are not.  Some have varying abilities depending on symptoms on different days.  Some people (like me) are “high functioning” (I HATE this term) and work full time, parent, take care of a house all while living with a high level of chronic pain and various chronic symptoms of mental illness.

But whether you are working or not, raising kids or not, volunteering or not, on social assistance or disability payments or not…I can say with 100% certain that being chronically ill is a lot of work.  I’d even say that it’s a full time job.  So we aren’t lazy, we are warriors.   Our work just isn’t valued by society, and a lot of it is invisible labor just to survive.

Please don’t perpetuate this stigma.  And please trust that each individual person knows what they can and cannot do.  If someone with a chronic illness is not working/volunteering/attending school it’s probably because their symptoms are too severe and they are not currently able.  Or maybe their workplace/school is not accessible for someone with their particular health issue.

It’s NOT because they a) don’t want to, b) aren’t trying hard enough, or c) are lazy.

Tonight, I have almost no spoons.  I drifted through the day, feeling foggy and having trouble concentrating.  I crashed on the couch and struggled to get up again.  I feel mentally and physically exhausted.   I didn’t run a marathon today, I didn’t work out…but I DID expend a great deal of energy coping with my health.

Before work I had a doctors appointment.  It was a new doctor, so there was stress and anxiety last night and this morning.  I got test results that weren’t what I was hoping.  I got requisitions for blood work.  I booked two follow up appointments.

Then I went to work.  Tried to focus, tried to get things done.  Took a break, got the blood work completed.  Went back to work for another hour.  Left at 3:30pm for a counseling appointment.

I see my counselor every 2-3 weeks.  I’d like to see her more often but it’s difficult to fit in around my other appointments, my work schedule, my kids, kids activities and kids medical appointments.  Again, as I mentioned, people with chronic illnesses aren’t lazy.  We often have numerous medical appointments that need to be juggled and fit in around already busy schedules.

Counseling is work.

If you are a survivor of trauma, and your counselor is pushing you, even gently, in the direction of healing, counseling can be exhausting work.   At the end of the hour I feel incapable of more than curling up in the fetal position on her couch and crying.  But instead I drive home and carry on with my day.

My counselor has been fairly patient with me.  She’s realistic about the fact that I have a LOT of current external stress in my life and she’s let me talk about that.  But in the past 6 months she’s begun to push me to talk about my past, my childhood, my core beliefs, and my trauma.  She’s also started to call me out when I disassociate in the session as a way of coping with feelings, memories and flashbacks.

I like disassociating to cope with feelings, memories and flashbacks.

It’s kinda my thing.

Most people don’t even realize I’m doing it.  Even fewer people would point it out.  Nobody else would purposefully try to stop me from using it as a way of coping.  I’ve always thought of disassociating as a self preservation, self protection mechanism.  I always thought I was coping if I zoned out to make a flashback less intense or make it stop.  I was coping.  It helped me survive, but maybe now there are other options…

My counselor wants me to stay present.  She wants me to TALK ABOUT what’s happening for me.  She wants me to describe it.  Or at least she wants me to stay with her in the room while it’s happening.  It’s very uncomfortable.   “But I LIKE disassociating!”  I whine…  “But it works!” I attempt to convince her.

She reminds me that I’m not alone.  That she is there to help me out of the feelings, body  memories and sensations.  That I don’t need disassociation and that maybe by zoning out I’m not actually allowing myself the space I need to heal.  Maybe I’m just stuck in a constant space of just surviving.  Maybe disassociating is actually taking up an intense amount of spoons to maintain.  Maybe zoning out is zapping my energy.

Chronic complex PTSD is exhausting.  Chronic pain is exhausting.

But maybe, just maybe doing the work of counseling and trusting the process might help restore my energy in the long run.  It’s draining work at the moment just trying to convince myself to TRY to approach my healing without disassociation.

I might have many flaws, I know I am not lazy.   Neither are you.  Keep fighting that stigma and keep surviving and thriving.

 

 

Justice.

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I took this photograph today.   I lived in this city most of my life and I’ve never been drawn to look at this sculpture before.

Justice.

This statue embodies exactly how my life feels at this moment.

Grey. Solemn.  Frozen in time.  An unknown, robed figure holds a sword over me, about to make decisions that will alter the course of my life and the lives of my family members.

I feel like one wrong move and the sword will pierce my heart and all will be lost.  I’m walking on a tight rope, on egg shells, on the edge of where the ocean meets the land, on a wire at a circus…fill in the metaphor or analogy of your choosing.  I’m barely breathing.

Justice for who?  How is this justice?  Years of my life spent trying to prove things that seem self evident.  Years of him being believed and me seen as crazy, or potentially crazy.  Years of my privacy being breached and shattered to the point I’m hardly sure what privacy means anymore, except to trust no one.  Is this justice?

Interpersonal violence doesn’t end the moment she walks out the door.

Domestic violence doesn’t end when she leaves.

Family violence doesn’t stop when the relationship is over.

She might be physically safe now, but she still looks over her shoulder.  She still watches herself.  She still fears that anything she says or does might get her or her children into trouble.  She lives in fear of SOMETHING happening, even though she doesn’t always know what that vague threat might be.  She rarely sees him, but he impacts almost every aspect of her life.  He calls her crazy.  He tells her kids she is crazy.  He tells anyone who will listen that she is crazy.

But if she is crazy, than every survivor is crazy.

I don’t think we are crazy.  I think the entire system is broken and set up for us to fail.  We don’t have a justice system, we have a legal system.

Wake up.  Justice doesn’t exist for women like me.

I’m reclaiming “crazy.”

I’m so tired of crazy being used as an abelist, stigmatizing slur against me by my ex-husband.  I’m fed up of being called crazy as an insult, as an excuse for his abusive behaviour.  I’m tired of gaslighting which blames my PTSD for the sexual violence he perpetrated.  I’m tired of being seen as less than, being labelled with things that don’t apply to me.  I’m tired of the implicit assumption that having a mental illness is a terrible thing, something I should be horribly ashamed of.  It’s problematic on so many levels.  He accuses me of having borderline personality disorder (which I don’t have) but even if I DID have it, so what?  Would I be “crazy?”   Would this warrant being mistreated and shunned and ignored?  Would it mean everything I say and do is suspect?

I reject all this.  I want to reclaim crazy.  I want to fight mental health stigma.  I don’t want to be ashamed that I’m not neuro-typical.

I’d like my ex-husband to stop spreading awful rumours about me in the community, but I don’t have control over that!

Things I would like to stop hearing as I reclaim crazy:

-Be more neutral

-You are too emotional

-You are too sensitive

-Tone down your feminism

-Your past is impacting your parenting

-That was a long time ago, why don’t you get over it

-Just relax

-Calm down

-Don’t worry so much

-You are over-reacting

-Why didn’t you just say no?

-Don’t you know how to defend yourself?

-Why didn’t you just fight back?

-She’s crazy (from anyone unless they are also reclaiming the word)

I celebrate being crazy in a positive way, because it means that I’m NOT neutral.  It means that I am an advocate, a social justice warrior, an ally and a support worker.  I’ve harnessed some of the energy of the bad things I’ve survived and I’m using it to help others, to fight injustice and to try to leave the world a better place than I found it.    I’m proud of my feminism.  I’m proud of my anti-oppression principles and the way I strive to unlearn and learn in my daily life.  I don’t want to calm down.  My feminism gives me energy and it keeps me alive.

And if that makes me crazy, then I embrace it.  But let me define crazy.

Nevertheless she persisted.

 

Medication Fog.

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For whatever reason, my migraines have been out of control the past few weeks.  It’s been incredibly frustrating and painful.  I started seeing a neurologist about 9 months ago and have been getting nerve block injections which had been significantly reducing my number of severe pain days per month.  I was really pleased.  The neurologist is a great doctor, he believes me, doesn’t treat me like a drug seeking addict, and the treatment he offered was helping.  A rare positive medical experience for me.

This month the pain came back with a vengeance.  Last Monday, I came home from work and cried for over an hour.  I took my emergency codeine pill to take the edge off the pain for a few hours and it made me feel a pleasant sort of relaxed high.  Taking any type of medication is always risky for me, because what will relax me one day could agitate me another day.  Anything that has the potential to be psychoactive can cause unwanted adverse effects.  I don’t like feeling high and I if I use substances it’s in an attempt to feel normal.

Tuesday by the end of the work day I wasn’t feeling well.  The pain was terrible, my heart was racing, I felt weak and dizzy and dehydrated.  I had pain at the base of my neck which was new for me.  Normally my migraines are around the supra orbital nerve and focused behind my right eye, blurring the vision there and causing visual distortions.  To be honest, I was a bit scared I might be having a stroke.  Often by the 3-5 day mark of a severe migraine I begin to worry that something is really wrong, it seems hard to believe that SO much pain and so many strange symptoms are caused by “just” a migraine.

I was afraid and a bit desperate for the pain to stop so I drove myself to the ER.  I have a lot of trauma around the medical system (see earlier posts in this blog) and I was pretty reluctant to seek care at the hospital.  At triage my file was marked as emergent (I think they were worried about stroke too!), and I didn’t wait too long before seeing a doctor.  Luckily, the doctor reassured me that there wasn’t likely anything more serious going on, “just” a bad migraine.  He offered some IV medication and IV fluids because my heart rate was really too high.  I was relieved.  He believed me.  He didn’t treat me badly.    The nurse came to start the IV and I figured things would be pretty much okay from there.

I was wrong.

About 5 minutes after the IV medication ran through, I got suddenly hot.  I had an intense sense of panic and agitation and I knew I had to leave.  I couldn’t really think clearly.  My IV was attached to the ceiling and I couldn’t walk around.  I knew intellectually I could ring the bell and a nurse would come and probably unhook the IV or move it onto an IV pole so I could walk around.  But in my panicked mind, I became triggered to times I had been held against my will in hospital.  I started thinking that maybe the nurse wouldn’t let me leave, or that she’d make me wait for the doctor and that I’d flip out.  Then she’d know I was completely panicky and wouldn’t allow me to leave.  I was afraid.  I pulled out the IV and I ran away.  I fled.  I just left the ER and didn’t look back.

That was a rough night.  I was scared they would send the police after me so I got a friend to call the ER to explain that I’d left due to a panic attack.  It took a full day for all the anxiety symptoms to resolve.

And the migraine was back within 3 hours!

Two days later I saw my neurologist for another nerve block.  He told me that severe anxiety and agitation is a side effect of one of the IV medications in about 2% of people.  He told me not to take that medication again.  No shit!  I was angry that the doctor at the hospital hadn’t informed me that there could be potential psychoactive side effects. I would not have consented to the treatment as I know that I’m extremely sensitive to this type of adverse effect.  I’ve experienced versions of the same from SSRIs and from anti-anxiety medications.

My neurologist wants me back on another medication that can control migraines.  It’s called topamax and it’s one I’ve taken before.  I reluctantly agreed because it can also help with some of the other chronic pain I have which might be fibromyalgia.  The only problem with this medication is that it causes a lot of side effects, especially at the beginning.

My body feels like a toxic soup of drugs.  I have a hard time processing it all.  And I still have a headache.

The side effects when starting medications that cross into the brain can be triggering for me.  Not only do I feel dizzy, nauseous, off balance, foggy and exhausted, it also brings me back to times in my life when I was taking high doses of psychiatric meds.  It brings me back to times I overdosed on them.  It brings me back to the nights where I was sexually assaulted.  When I woke up, drugged, half asleep to find him touching me.  Fighting to stay awake, but the drugs dragging me back into sleep.  The feelings of confusion between my nightmares and what was really happening to me.  I don’t like that feeling.

So the side effects and adverse effects aren’t just unpleasant.  They aren’t just an annoyance.  They don’t just impact my ability to function smoothly at work.   They are frightening and they remind me of being completely unable to control being abused.  Being helpless, frozen, confused and afraid. They remind me of not having control over my body and not having the capacity to consent.

So if I’m complaining about adjusting to this medication or if I seem not quite myself.  It’s more than just a bit of dizziness.  It’s a lot of vulnerability and processing not feeling in control of my own body, both the pain in the present and the abuse in the past.   It’s all interconnected.