Don’t Call Me A Monster

I knew I was a monster by the time I was fifteen. Everything had gone bad. I had no understanding of the things I was doing and saying. Neither did anyone around me. Well, the people who knew and that was only my immediate family. I would be too ashamed to admit it to anyone else, even though I desperately needed help.

My parents wanted to help me but had no idea how. They wondered whether this was simply normal teenage stuff. It wasn’t! They should have got me some help. But hindsight is wasted. They didn’t get me help, and it remained a secret. I had become a monster! I was sure!

What followed were major life decisions I quietly made according to my belief that I was a monster. I quickly concluded that I should never be a parent. I couldn’t inflict myself on a child, nor could I pass on any rogue genes. You see, I had no idea what was going on with me. I couldn’t risk ever becoming a mother.

I must be a monster for real! I continued to hold that secret monster close to my chest. My friends must not know because surely they would reject the monster. Even those with whom I would be in an intimate relationship would never know.

It was my secret to hold and use against myself for what has been most of my life. I was full of self-loathing and hate. I was terribly ashamed of what my family (but no one else) knew of me.

Terrified of what might be if I didn’t maintain a tight hold over my monster. I couldn’t let anyone see, for that they would surely hate me if they did.

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Actually, it would be thirty years (yes, I did say 30 years) before I had a medical professional offer me help with my monster. It was at that time that, after seeing many mental health professionals before him, one psychiatrist had the guts to diagnose me as having Borderline Personality Disorder (BPD).

 

Monsters. Hmm.

I know better now. I am not a monster, although there are still times of self-loathing in which I threaten myself with that label. There are also times when I lose that tight rein over myself and become rather monster-like. Jobs have been lost. People have been lost. But I understand better how that comes about, and I am learning ways of being in which monster doesn’t get a look in.

Monster aside, the psychiatrist who recognised in me the symptoms of BPD did me an enormous favour because finally, I had explanations for the me who had always been me (and not a monster).

There had been mental health professionals who had gone close to identifying BPD much earlier when I was being treated for depression, Post Traumatic Stress Disorder (PTSD)and Anorexia.

They had hedged around the issue but they told me cryptically that they didn’t want to see me labelled negatively. It would apparently negatively affect how I was treated in the future. So they continued to see me as having chronic depression. In my opinion, this was simply the BPD stigma I will address shortly.

It would have done me the world of good if I had that explanation of who I was. They didn’t understand how much the monster that I knew as me was actually killing me. Had they understood, perhaps between us we might have prevented two suicide attempts that would eventually come when I could no longer stand my monster.

Those of us with BPD live with all kinds of negative labels. Monsters. Drama Queens. Attention Seekers. Manipulative. Impulsive. Addicts. We get told we don’t have a ‘real’ mental illness because what we have is a Personality Disorder. We are likened to Narcissists and Sociopaths. Yes, some would go so far as to say that we are “bad” not “mad”.

There are plenty of websites out there that are dedicated to viewing people with BPD in this light. From what I’ve seen, most are run by family members who have seen the consequences of people living with BPD who don’t have adequate treatment or support. While I understand that those family members have had a lot of pain and hurt in their lives, I don’t accept the way that they paint us to be.

I am not a monster. I am not a Drama Queen. I am not an Attention Seeker. I do not seek to be Manipulative or Impulsive. I do though, accept that I am an addict and this continues to be a thorn in my side even though I have done a great deal of work to overcome it.

I do suffer, and I do struggle to know myself as anything other than these labels. Because believe me when I say, that the harm I can do to myself with these labels is much greater than the harm you do me.

It is clear to me that there is a great deal of stigma hanging over the two in a hundred people who live with BPD.

Just last week I read the words of another kiwi writer who said that the shroud over mental illness has been lifted. I think he was writing about depression and anxiety, for which I know are much more acceptable than in the past. But for BPD, there is a very long way to go.

Even amongst medical professionals, we are often viewed negatively. It was difficult to decide whether to let anyone know of my BPD diagnosis, and there are times even now when I wish I had not let it be known.

Am I a monster? No, I’m not but I need your support to believe in myself. Don’t write me off. I am a unique human being. I happen to feel my emotions strongly but who given the right opportunity can love and be loved as much as you.

Thanks for reading

 

Cate

Image credit: Facebook Page Anxiety Depression & I

 

 

 

 

 

 

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Becoming Mindful

I admit to being a reluctant participant. While I understood the principle of mindfulness, I had no desire to make it part of my life. I know, I’m not meant to say that. But I have.

Maybe it was the fact that it was recommended to me by so many people in so many places. It would help my depression. It would help with anxiety. It would definitely help my Borderline Personality traits and would help my dissociative disorder. On and on have been the recommendations. Apparently it would help with almost any disorder. Don’t get me started on how mindfulness was meant to help with chronic pain. The only thing was that if someone recommended something to help me, I was more than likely to do the opposite.

It’s not that I didn’t want help. I just pushed away the help that came my way. There have been too many recommendations from all types of quarters from my (ex) mother-in-law to the best of psychotherapists, psychiatrists and pain specialists. Most things recommended actually didn’t work. Some have actually caused me more harm rather than good. I just didn’t want to know anymore.

So any time someone mentioned mindfulness or a programme including aspects of mindfulness I just gave a non-committal answer and quietly backed away. I didn’t want to know. That was until recently.

Before I go on, it’s important to clarify just what I’m talking about when I say mindfulness. So here’s a definition from my fav Oxford Dictionary:

“A mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.”

I got thinking one day about what is a daily activity for me. It’s one that you might be surprised I am linking to being mindful. Most days I spend time with my mother in the secure Dementia Care facility when she has lived for the past 15 months. Not only do I spend time with my mother but also the twenty-odd other residents and the staff. They have all become a bit like family to me.

It occurred to me that when I go through the locked doors, I leave everything behind me and focus on what is happening at that moment. I can’t focus on any of my stuff. That gets left at the door because Mum needs my complete attention. She is also not well enough to be able to give attention to my stuff. It’s not exactly mindful meditation, but it is focusing on the moment.

Then today I was reading a blog by a woman with early-onset dementia. She said:

Once you’ve got your head around the diagnosis, don’t dwell on the losses or the future as you have no control over each. Instead enjoy this moment as there are still many adventures and laughter to be had”

She made me think that aside from finding a mindful approach the only way to cope with visiting my mother, it was also an approach for those facing diagnosis of illness. It’s far from an easy illness, or an easy place to visit, let alone be there day after day. But there are fun moments. There are adventures to be had. I leave my troubles at the door and venture forth into Mum’s reality. That is all that matters for the time I am there.

While those thoughts have been gradually forming in the background of my mind, I almost literally stumbled a few months ago onto a more conventional form of mindfulness through meditation. I was truly desperate to quiet the tinnitus in my head one night. Having bought a new phone I had lost the app that I used to use a night for nature sounds.

Instead, I came across the app Calm which offers mindfulness meditation. I was listening to it before my rebellious mind had a chance to say no. What’s more, I found the sleep story I listened to, was quietening my mind, focusing on one thing. Now.

For as long as I remember, I have had trouble with over-thinking while I am supposed to be going to sleep. It has been like an automatic switch that pings me into thinking and worrying about everything. As a sufferer of anxiety and Post Traumatic Stress Disorder (PTSD) I didn’t have a hope of getting to sleep until I finally collapse in exhaustion. Using sleep stories to focus my attention, I am getting to sleep much quicker and not becoming anxious about the whole night time and sleep thing.

Having found mindfulness useful in sleep I have started using meditations offered by Calm. Yes, really. Me. I admit I have been amazed at how calm I can be after meditating and how it helps me throughout the day.

But I am slow to change my daily routine to make sure I build into each day some time for meditation. I also still find myself amazed to even be going here. Me? Mindfulness? I would have said never. Not for any really solid reasons but simply because I had got a thing in my head and simply wasn’t going to go there.

Well, now I am.

I finish with a rather long quote, but one that I wish I had read, and had the willingness to take on board, many years ago:

“I’m simply saying that there is a way to be sane. I’m saying that you can get rid of all this insanity created by the past in you. Just by being a simple witness of your thought processes. 

It is simply sitting silently, witnessing the thoughts, passing before you. Just witnessing, not interfering not even judging, because the moment you judge you have lost the pure witness. The moment you say “this is good, this is bad,” you have already jumped onto the thought process. 

It takes a little time to create a gap between the witness and the mind. Once the gap is there, you are in for a great surprise, that you are not the mind, that you are the witness, a watcher. 

And this process of watching is the very alchemy of real religion. Because as you become more and more deeply rooted in witnessing, thoughts start disappearing. You are, but the mind is utterly empty.

That’s the moment of enlightenment. That is the moment that you become for the first time an unconditioned, sane, really free human being.” 

― Osho

Thanks for reading!

 

Cate

Me & Carol – Part Two

TTrigger Warning:
This post contains subject matter that is difficult to read. It includes discussion of suicide including suicidal ideation, a suicide pact and suicide baiting.

This post is Part Two of my last post (Me & Carol – Part One). I recommend that you read that earlier post before reading this one.

As one of my favourite writer’s wrote:

“…in a world I’d never known among people whose existence I never thought possible,
became for me a concentrated course in the horrors of insanity and the dwelling-place
of those judged insane, separating me forever from the former acceptable realities and assurances of everyday life.”
 – Janet Frame, An Angel At My Table

It was Friday, when Carol had been discharged but I was still an inpatient at the local psychiatric hospital where we had got to know each other. Back then, 20 years ago, while mobile phones were common, it was certainly not everyone that owned one. I didn’t have one so relied on being able to use the patient telephone to make contact with anyone outside of the hospital.

Carol and I spoke by phone that day and she told me that she wanted to go ahead with our earlier plans (our suicide pact) to die the next day, but as I wasn’t able to be with her that she would do it alone.

It is fair to say that I totally understood her desire to die. I wanted to die too. While I’m not sure that I outright encouraged her to go ahead with the plan, I am certain that I didn’t discourage her. At the end of our conversation, she told me she was turning off her phone and that we would not speak again. I guess that we ended by saying goodbye, but I don’t remember that aspect.

What I do remember is the terrible dilemma I sat with for the next 24 hours. Would I tell someone or not? Would I get help to stop her planned suicide attempt?

The short story is that I didn’t tell anyone, and that is something I will always have to live with.

Saturday came and went, and I continued to be torn apart by what I knew, and what I imagined was happening, eventually coming to the conclusion that my friend was by now dead. I heard nothing.

It was three days later when my then-husband Dave arrived to visit that night, armed with a letter that had come in the mail. It wasn’t something I was expecting. On opening it I found that it was a ‘suicide note’ from Carol. It was hard to disguise my distress from Dave, but essential because he knew nothing, as did anyone else.

It was some days further on before I got a phone call. It was Carol, and she was in ICU. She had survived but had sustained serious damage to her heart which she would carry for the rest of her life. I admit that I was struck by a terrible dichotomy of feelings. Relieved she was alive but disappointed that she hadn’t achieved her goal. You see, I could understand her despair and desire to end her life. Our hopelessness was something we each carried, but also shared together. In my sickness, I really wanted for her pain and suffering to be over. I was disappointed for her.

In the months that followed, Carol and I went separate ways. It wasn’t something that we wanted, it’s just what happened as a result of unrelated circumstances. I shifted to another city, and after eventually ending my marriage, did not return to Wellington. We eventually lost contact and today, I have no idea where Carol is. I have looked for her on social media with no luck.

♦♦♦

Now I am setting out into the unknown. It will take me a long while to work through the grief. There are no shortcuts; it has to be gone through.
– Madeleine L’Engle

Of course, this was not over when Carol and I parted company. There was a lot for me (and presumably her) to process and work through. What I had done, in agreeing to this pact and then ‘allowing’ Carol to go ahead with the plan, was monumental. We were no longer together but I carried guilt with me from that time on. As my recovery from mental illness began, I found myself carrying more and more guilt. I began to understand the implications of what I had done. And now that we had no way of contacting each other, there was no way of working through it.

I think that it’s fair to say that friendships between people with severe mental illnesses can become pretty intense, pretty quickly. It is an emotional rollercoaster that while on that journey we gather those around us into. My experience is that particularly when you are in a group therapy environment, that rollercoaster gets bigger and faster. In group therapy, you are often sharing intimate parts of your life with other participants. You get to know each other well. But it’s an artificial environment, controlled to some extent by the therapist. At some point, it comes to an end, and in my experience, you can expect the friendships to last forever, but that often doesn’t happen. Outside of that controlled environment (for Carol and I it was the hospital), there can actually be nothing to tie you together.

In my years of mental health treatment, I can think of a number of my friendships that have been intense but actually didn’t last once outside of the therapuetic environment. I think this is what happened for me and Carol.

You may rightly wonder why I am sharing the journey I went on with Carol. Why would I even admit this stuff? Good question. I am opening myself up to all kinds of abuse.

A few months back, was the story of Michelle Carter and Conrad Roy, where Michelle (by text messages) encouraged her boyfriend Conrad, to kill himself. Michelle got 15 months prison time for her encouraging texts. At the time, the court announced it’s decision, there was a lot of fierce and hateful comments on social media towards Michelle. I hung my head while the antagonism towards Michelle Carter was in the news because I felt if people only knew, they would target me with abuse too.

What was so different in that case from what I did to Carol? It seemed the only substantial difference I could see was that Carol survived her suicide attempt. Conrad didn’t. While it was reported that both Conrad and Michelle were depressed at the time of his suicide, I suspect too that the mental illness Carol and I were both experiencing was more severe. But no excuse.

I can’t justify anything I did (and didn’t do). It is actually hard for me to imagine doing what I did, but then I am not as severely ill as I was, so perhaps I can claim to be a different person. But some people do bad things when they are severely mentally ill. Many of them end up in prison, forensic psychiatric care, or with severe consequences for what they do. Many have to live with the burden of what they did.

While thinking out loud (that’s what I do on my blog) I am struck that the biggest hurdle is perhaps to forgive oneself for what has been done while mentally ill. I think that is where I am at now. I realise that I need to forgive myself for having let Carol down. I wasn’t a good friend to her because I was so caught up in my own hopelessness that I couldn’t find hope (or help) for her.

I can’t have this conversation with Carol. I don’t even know whether she is dead or alive. But I have to find a way to forgive myself so that I can live on.

*Names have been changed to protect privacy

Thanks for reading

 

Cate

Me & Carol – Part One

TTrigger Warning:
This post contains subject matter that is difficult to read. It includes discussion of suicidal ideation, suicide and a suicide pact.

Twenty years ago, I had a year that can best be described as hell. 1997, I was living in Wellington, New Zealand with my (then) husband Dave. I had already (privately) decided that my marriage was doomed, but 1997 saw things spiral down for Dave and me. It took me until mid-1998 (and six months of intensive residential therapy) before I actually left Dave but 1997 was tough, admittedly on both of us.

But it was the year I met Carol, and for that reason, it was a very good year. Weird really, such bad and good together.

Carol was one light in a very dark period. I met her near the beginning of the year when we were both patients at a local psychiatric hospital. We were both being re-admitted pretty much as soon as we were discharged. It was a policy issue, but that’s another story. I was admitted over twenty times that year. I wasn’t being discharged because I was well or even off the crisis list. I was being discharged because they needed the bed for someone else and, so they said, they didn’t want me to become institutionalised. I think it was a little late for that. As I’m sure you can imagine, I spent most of the year there. Carol, who had Bipolar Disorder, was in a similar traffic jam and we very quickly became very close friends.

Carol Bear, given to me by Carol. On the right arm is a friendship bracelet she gave me.

Dave didn’t like our friendship. He was pretty conservative (putting it nicely because this story isn’t about him) and he objected to the friendship Carol and I had primarily because she was a lesbian and because she smoked (I hadn’t started smoking by then nor was she the catalyst to me starting). Actually, Dave wouldn’t ‘allow’ Carol in our house (at times when we were both discharged) for these reasons. I don’t know what he expected might happen if she did come to our home but I was furious and just didn’t tell him when she had been there. What he didn’t know…

I was going through a time of rebellion from my life. I had seen myself as a “nice Christian” and didn’t want to be that person anymore. That rebellion was perhaps part of the reason I had so many hospital admissions that year. As awful as hospital life was, I can now admit that in some ways it was great. I was away from my “nice Christian” marriage and with some like-minded people. I didn’t have to worry about anything, because someone else (usually a nurse) would worry for me. I had no responsibilities and the worst I might get is a night in isolation, but only if there was a bed available.

That said, I was terribly depressed and anorexic. I was recovering from Post Traumatic Stress Disorder (PTSD) and while I hadn’t been yet diagnosed with Borderline Personality Disorder (BPD) I was very clearly showing symptoms. My psychiatrist had already declared that they simply didn’t have any staff equipped with the skills to help me. I was literally said to be beyond help. Perhaps a culmination of all these psychiatric issues was chronic suicidal ideation. At that point, I had thought about and acted on suicidal thinking constantly for about three years, including my biggest suicide attempt in 1996.

The next part of the story is difficult to tell, but I feel like I need to tell it. I didn’t even accurately tell what happened when I published my book, Infinite Sadness in 2009. I was ashamed and I feared reaction. Would what I had done be the final straw, particular for my family? Would they turn their backs on me?

Carol was also chronically suicidal, and while both in the hospital we eventually formed a pact to die by suicide together. It was planned for a specific date and our goal was to both be discharged so that we could carry out our plans. We would say whatever was needed to achieve discharge.

Carol managed to convince staff that she was ‘safe’ for discharge but I didn’t. I was kept in hospital. I was really angry, perhaps mostly with myself.

“I was bruised and battered, I couldn’t tell what I felt.
I was unrecognizable to myself.
Saw my reflection in a window and didn’t know my own face.
Oh brother are you gonna leave me wastin’ away
On the streets of Philadelphia.”
– Bruce Springsteen

This is a good place to stop this story because actually, this post is not so much about the story. I will continue the story in a later post but what is important to me is how the heck did I end up part of a suicide pact?

I was “unrecognizable to myself”. I was “unrecognizable” to my friends and family. They didn’t mean to leave me “wasting away” but they didn’t know how to help me. Even the health professionals didn’t know how to help. I can’t imagine what they all would have thought if they had known about our suicide pact. Well, now the truth is out and a song just won’t be enough.

Had you told me five years earlier that this is where I would be, I would never have believed you. It just wasn’t possible that I would slide so far down to consider not only my own death but also supporting my friend’s eventual suicide. But that’s what mental illness does. Not for everyone, but when you go down as far as I went down, anything is possible at the same time as nothing seems possible. There was no hope (in both my mind and apparently in that of the experts), and because of that I was prepared to consider both Carol’s and my own death. A completely foreign thought to the Cate I had been five years earlier.

I saw this meme this morning. I found it interesting:

http://www.facebook.com/depressionyouandme/

That’s not who I was. I didn’t know I would be ok, I didn’t understand that people still loved me. I had already been told they couldn’t help me, just keep me safe! And I didn’t hope to be well anymore. I just wanted an end. I wanted an end for myself (and for Carol). Yet I was described as being depressed. I had depression.

My point is that depression looks different for different people. I hope that people who are depressed today can say each of the statements in that meme above. But it’s not where I was, and I need you to understand that I was a long way from that point when I considered our suicides.

To be part of another’s suicide plans is not right. I know that. And there are no “Buts…’

I had crossed a line. But whether I was aware of that or not, I can not tell you. I don’t remember the feelings attached to that time.

If you are to have any understanding of what I was doing, know this: I was severely and chronically mentally ill, and my thoughts were far distorted from whom I had previously been. This decision Carol and I made to die together was so badly distorted that perhaps there is no way for outsiders to understand. There are no other explanations. It just was, for both of us. It was perhaps a very clear ‘mark in the sand’ of hopelessness.

When we look at mental illness from the outside it is almost impossible to fully understand. I suggest the meme above offers a ‘nice’ image of depression and one easy for ‘outsiders’ to accept. For many, that will be how it is, but it’s not at all where I was at.

I was wrong to do what I did, but I really had little understanding of right and wrong at that time. Perhaps that is one of the reasons I had no hope.

They say “love changes everything”. I say:

“mental illness changes everything”

It’s not an excuse for what I agreed to with Carol. Her life was worth more than that. So was mine. But it happened because we were both suffering from severe mental illness. You can have no idea how you would act in similar circumstances. So please, choose not to judge us.

Part Two of Carol and my story will continue in a future post. It’s too much to contain in one post. Certainly too much for me, and maybe too much for you. I don’t promise that it will be my next post, but it will be soon so please follow so that you can be sure to read it.

  • Names have been changed to allow for privacy.

Thanks for reading

 

Cate