“To Carry The Universe Or Be Crushed By It”

Very timely was the day of posting about peace on 4 November (see my last post Dona Nobis Pacem – 2016). Just four days before the American Elections.  I am a strong advocate of peace, and of peaceful interaction amongst individuals. I simply don’t see any other acceptable way. But I tell you, beyond this desire for peace is a desire for all people to be treated kindly and with compassion. It breaks my heart that this is not happening right now.

I know that my approach to treat all people with kindness and compassion, even my enemies and those intent on harming me, is a little unusual. I know a lot of people don’t understand my thinking. But then I know that I’m not alone in this quest for humanity. It may be that you consider me weird that I have no desire to harm those who might harm me or my loved ones.  I can assure you that people greatly qualified in weirdness have said previously that I am weird. It’s okay with me.

And maybe you think “what does a (white, heterosexual) kiwi from somewhere at the bottom of the Pacific Ocean, thousands of miles from the United States know about anything?” Fair call, except what is happening in the US affects me too. What is happening there affects our whole planet. But perhaps more than anything the US political scene affects me because my American friends are suffering. I hate that. I hate that some of them are in the minority groups targetted by the President-elect.

Over the weekend I learnt a Facebook friend of mine had been told to kill herself by trolls commenting on a post about the Klu Klux Klan’s planned parade in North Carolina. Complete strangers (yes, more than one) telling her to kill herself! I was beyond shocked. I had earlier read it was happening, but when I learnt it affected my friend I admit I was crushed. It literally stopped me in my tracks, and I found it difficult to function for the rest of the day. Firstly, out of concern for my friend but then just pure horror that people treat each other with such disdain.

I kept asking myself, where is the compassion? And you may think that compassion has no place in what is happening in our world. I respectfully disagree, as I have suggested above.

“Compassion hurts. When you feel connected to everything, you also feel responsible for everything. And you cannot turn away. Your destiny is bound with the destinies of others. You must either learn to carry the Universe or be crushed by it. You must grow strong enough to love the world, yet empty enough to sit down at the same table with its worst horrors.”

— Andrew Boyd (Daily Afflictions: The Agony of Being Connected to Everything in the Universe)

I admit that I have been swaying between being crushed by what is going on in the world, and by being able to “carry it”. It’s tough for all of us. Especially those people in the US and people targetted by the President-elect. But for a moment, I need to take a slightly different angle to perhaps explain why it is so hard for some of us.

People with Borderline Personality Disorder (BPD) usually have a great deal of trouble with feelings they experience to the extreme. That is, we feel it perhaps more deeply than people without BPD.

Whatever your understanding of this personality disorder, and whatever your experience of people you know who have it, let me say that when there are such terrible things happening around the world, even in our own backyard, we have a very hard time. This can show itself in a variety of different ways, but for me, I have this overwhelming need to express compassion and to want to see other people do that too.

For the life of me, I can not understand this hatred, contempt, and antipathy for fellow mankind. I can not understand wanting to hurt another human being (or animal, for that matter). I even can not understand this desire to strike back at someone who harms, or threatens to harm me. It’s just not me.

I am no better than any other person on this planet, but I simply do not get it. I am sure that my particular BPD (and it is slightly different for all of us) is to blame for my desperate need for compassion to spread. And while it doesn’t, I admit I am crushed by it. It is completely overwhelming.

Last night I started to go through my Twitter feed, something I admit I have put off for a few days. There I came across a list of fifty people who were being targetted by those spreading hatred. These were innocent individuals who had done nothing wrong. They had maybe expressed fear or weakness in a recent tweet and that was now causing them to be targets of this movement to encourage people to kill themselves. I put myself in their shoes, and immediately had a sense of how they must be feeling. Punished for feeling afraid. It is simply wrong.

I can’t tell anyone else how to act, I can only choose for myself how I will be. But please, think about it. Don’t spread fire with fire. Just because another chooses to spread hatred, don’t be pulled down to their level. I am convinced that if I treat each other (including our enemies) with kindness and compassion then I can contribute to what can be a peaceful world.

Don’t get me wrong, though. I will still speak up against what I see as wrong. Always. But I hopefully do it in a way that doesn’t seek to harm anyone. I’m sure this is possible.

“Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.”

— Martin Luther King Jr. (A Testament of Hope: The Essential Writings and Speeches)

PS. Last night, after I started to draft this post, a 7.8 Richter scale earthquake struck New Zealand, north of Christchurch where I live. There has been major damage and so far, two people have died but I am happy (and amazed) to say that I slept through the whole thing. I have no idea how that happened.

Thanks to those people who have expressed their concern for me and my family today. I am a little shaky to be back in an active earthquake region. Here in Christchurch, we could definitely do without that.

Wishing those kiwis cleaning up after this, much love, a speedy end to the never-ending aftershocks and a peaceful night’s sleep tonight. Kia kaha (Be Strong).

Thanks for reading!

 

Cate

 

Dona Nobis Pacem – 2016

Dona Nobis Pacem
(Grant Us Peace)

dona-nobis-pacem-2016

On 4 November (today, on NZ time) bloggers from around the world come together with one purpose. That is peace. I’ve missed the past couple of years, but as peace is something I feel strongly about, this year I’m back blogging for peace.

But before you think I’m not writing about topics you usually find on this blog, please keep reading. Peace affects us all. We all have a voice, and we can all choose to use it to call for peace in all types of situations.

Peace. What is it? What do you think of when you think of peace? It’s one of those words for which we know what it means but we can’t always put words to it. I went searching for a definition that fits what I am talking about. How’s this?

Peace is a stress-free state of security and calmness that comes when there’s no fighting or war, everything coexisting in perfect harmony and freedom.
– Vocabulary.com

I think we tend to think of fighting and war as the opposites of peace. Others suggest hate. Today I want to suggest another opposite of peace.

Indifference

If we do nothing, we will not achieve peace whether it applies to world politics or peace with a neighbour or even a partner or child. If we leave it to others, or we just don’t care enough, then we will never have peace. To achieve peace, we have to do something.

When I was twelve I learnt this song at school.

I know you know it, but listen to it again anyway. Allow yourself those few minutes to hear it again.

It was the late 1970’s and to a twelve-year-old, it was a kind of cool song. I loved singing all the verses (including those added later) but I really had no understanding of what it was all about. I’m sure our teacher told us it was something to do with war, but I loved singing and would probably have sung anything. It was up there with singing ‘Hotel California‘ and the songs from the musical ‘Jesus Christ Superstar‘.

But now, Pete Seeger’s song leaves me feeling sad, and a little bit empty. I can stay like that and think it was sad what happened with World War 2 and the Vietnam War. But the song still applies to our world today. Rather than simply being about those two wars, the song is more about the futility of all war. How history is a cycle that we can’t break. That’s what is sad, and what remains if we do nothing.

Right now there is so much going on in our world that is about fighting and war, indifference and what I will call a lack of security. Who knows what is ahead? I read just yesterday that World War 3 is coming. I didn’t need to read it because I know. I know that unless we do something then we can have no security for the future. We have no certainty of peace.

Above, are those great words of Martin Luther King Jr. that I repeat here because they are exactly what I want to shout out to anyone who will listen,  when such turmoil, hatred and uncertainty are a part of our world:

“I refuse to accept the view that mankind is so tragically bound to the starless midnight of racism and war that the bright daybreak of peace and brotherhood can never become a reality.”
– Martin Luther King Jr.

I don’t have to accept what right now seems almost inevitable. Actually, I don’t think World War 3, as one example of the hatred and fighting has to be inevitable.

If I want peace, I need to speak up and say so. I need to do something. Indifference will only achieve fighting and war and I am completely opposed to those.

It is not just for my future that I have to do something, but for the futures of the so many people in our world who aren’t in a position to speak up. When I speak up for peace, I am speaking up for the people of Syria, for the refugees, for those who have no voice for a thousand different reasons.

It’s easy to do something. Sign a petition or join a protest rally. Give a simple bunch of flowers to the neighbour you have been arguing with. It doesn’t have to be expensive, and often the smaller offerings are more meaningful. Just do something… towards achieving peace.

There are some simple words that all the bloggers posting for peace today know:

if words are powerful…. then this matters

Words are powerful and so this does matter. Do something. Don’t be guilty of indifference. Speak up for peace.

The only thing necessary for the triumph of evil is for good men to do nothing.”
 – Edmund Burke

Thanks for reading

 

Cate

One Small Stand Against Stigma

TRIGGER WARNING: this post contains general information of a self-harm event but has no graphic details. There are no images.

I said it was small, and it is. But it’s gigantic for me.

This week I swapped which wrist I wear my watch on.

Earth shattering, isn’t it? And surely not much to do with the stigma against mental illness. But there’s more to it than what meets the eye.

Fifteen years ago I was self-harming pretty regularly. It was probably a daily occurrence at the time of this event. Sometimes I knew what I was doing, but others I was  dissociated and really not aware of the harm I was doing to my body. I would realise afterwards when I was mopping up the damage.

On one occasion I cut my (right) wrist. I wasn’t aware of what I was doing, but I know for certain that it was not some kind of suicide attempt. But don’t ever believe that this makes it better. I don’t believe this [although I acknowledge that some readers might find my thought concerning].

I realised pretty quickly that this large wound was going to need sutures and I didn’t seem able to control the bleeding, so took myself to the local hospital. At the Emergency Department, I encountered a doctor who had perhaps had his fill of self-harmers. I’m not going to make excuses for him, even this much time later but I do acknowledge that the job of an emergency doctor is a difficult one.

He told me what he thought of me in no uncertain terms and that I was completely wasting his time. There were, apparently, more important people than the likes of me. He said that as I had cut myself without anaesthetic, he was going to suture my wrist (15 sutures) without anaesthetic too. He proceeded to do so, although he left me waiting for what I’m guessing was as long as he possibly could.

That night I was vulnerable and scared. It was the first time I had gone to an Emergency Department after self-harming and had no idea what to expect. What I did know was that my self-harming was getting out of control, and I desperately needed help.

What I got was stigma. Against self-harmers and against mental illness. I concluded what I guess I already knew but was hoping that help might tell me otherwise. That I was a bad person, and I had wasted his time.

As soon as the wound healed I switched to wearing my watch on my right wrist for the sole purpose of hiding my scar. I knew some people would think I had attempted suicide. Others would think it was self-harm. There was little chance that anyone would think it was accidental. I was best to hide the evidence. From the world, and also from me. Hiding it from myself as much as possible would save me from the graphic reminder of the person that doctor had said I was.

Fifteen years later and most people in my life wouldn’t know that the scar even exists. I’ve hidden it that well, from everyone. But this past week I came to the conclusion that it’s time to stop hiding the scar from myself, and from anyone else who might see it. I’ve switched the watch back to my left wrist. It just seems right.

I don’t self-harm anymore. I’ve been about five years free. I know that if I got myself into a bad space then maybe I might again. I hope not, but I’m just honest with myself.

Because I have shifted cities and changed friends, most people aren’t aware of either this scar or the many others that litter my body. I’d have to virtually tattoo my whole body to be able to hide all of them and I don’t have that much money or that many ideas of what designs I’d choose.

But I’ve come to a conclusion. Those people who really matter will cope with the sight of my right wrist if and when it comes in front of them. For anyone who doesn’t cope with it, won’t matter anymore. And for those who don’t know me, they don’t matter anyway.

This is one small part of my voice against stigma. People who self-harm are important and do matter. Every time I see the scar on my wrist I am saying that doctor’s attitude doesn’t count because it was so wrong. I don’t have to let him keep telling me that I’m a bad person. And that’s what was happening every time I put my watch on.

Okay so that’s easy to say, but in reality this week I have felt exposed and vulnerable. Everytime I see the scar, I want to hide it again. It’s going to take a while to be comfortable with it. One day… it will come.

And that doctor? Well, he could have helped me that day, and probably avoided a few more scars. But he chose not to and I believe that was because he had stigmatized his patient. He didn’t see me as a person in need of help. God, I hope there aren’t too many doctors like that in Emergency Departments around the world. Sadly, I know better.

“Other times, I look at my scars and see something else: a girl who was trying to cope with something horrible that she should never have had to live through at all. My scars show pain and suffering, but they also show my will to survive. They’re part of my history that’ll always be there.”

— Cheryl Rainfield (Scars)

Thanks for reading

 

Cate

 

What, You Too?

It was a few years back now that someone very close to me stomped badly on my feelings, and abused my trust. It left me re-assessing how I shared myself, both with others in my life and also on my blog. What I was prepared to share in order to say “this is me”. In some ways it left me incredibly sad that there are a few people ‘out there’ who will disregard the sacredness of my words so much. But it happened, and changes were made. I consciously cut back on what I share. The biggest shame of this is that it removed an opportunity to say “what, you too?

The connection of being able to say “so you feel this too?” is perhaps the biggest disappointment for me, because it is that which is what blogging is all about for me. The opportunity for a writer and a reader to connect and share a common thought.

When my feelings got stomped on in such a destructive way, subjects became off-limits, and I suspect I lost something as a blogger. Of course, there were always a few off-limit subjects, but now there were more. And with a couple already shared here, it was necessary to back-peddle and even change the privacy rating on posts which now went too far in exposing the real Cate. Now you were getting perhaps a slightly sanitised version of me. And that disappoints me, even though I feel safer.

One of the biggest changes in what I was prepared to write about was the issue of what comforts me, and what I use to self-soothe. It was too hard to put that ‘out there’ for fear of being laughed at, and simply being stomped on again. No one likes being stomped on, me included. I will do everything I can to avoid it now, even to the point of withdrawal. You see, it’s not just you that misses out when I choose to protect myself and not write about subjects close to my heart. I also miss out, as I lose the opportunity to connect with another who might say those few words “what, you too?

Perhaps it has been through a lot of therapy in years gone by that I have looked at what comforts me, particularly what I can use to comfort and self-soothe myself in times of distress. But also simply as I live and breathe. I know that I am perhaps a little weird in this. That was confirmed by my last psychiatrist. It felt okay to be described by him as such, simply because he heard me. I realised I didn’t have to be like everyone else, if someone I trusted with a part of me, heard and accepted who I was, what made me tick and what I used to comfort myself.

For there are some means of comfort which I have been using for as long as I can remember. I can remember doing ‘this’ (I’m not sharing details because that’s not the point of this post, and I still need to protect myself) as early as three years of age. My earliest memories include this means of comfort, even though I probably didn’t consciously know it was comforting me. I suspect that it went back further than that, too. Maybe back as far as being a baby.

What strikes me is that I wonder about my need for comfort at that stage. I have some ideas about that, but perhaps most importantly I realise that we all need comfort right from infancy, but almost more importantly we all need the ability to comfort ourselves too. We can’t rely on receiving comfort from others.

This week I read an interesting article about adults who use stuffed toys to comfort themselves. They literally carry these ‘toys’ with them. Of the two people interviewed, one had Autism and the other Asperger’s Syndrome. But there is a point to this beyond simply people with those disorders. They had worked out what comforted them, what they needed to get through interactions with the world.

“Tilley says she has always felt slightly different to others and is aware of stares when she’s out, but sometimes having Del [a stuffed toy pig] on her side helps her gain control of the situation.”

The article can be found by following this link:
Jamie and his Lion: The adults who take their soft toys to work

I encourage you to read the article, even if soft toys are of no interest to you. I think the article goes beyond a stuffed lion and a stuffed pig. It goes beyond the Autism spectrum too. It challenges us  to ask ourselves “what comforts you to the point that it enables you to traverse that thing called life?

I admit that when I read this article I had a “what, you too?” moment. I understood, for my own reasons, just what was going on here. What these people do makes total sense to me, and I applaud them in finding a way to comfort themselves while participating in that thing called life.

Many psychotherapists recommend something called a Soothing Box (and other names for the same thing). A box of items which a person can use to soothe themselves when they are in distress. I think these are a great idea, but I think that sometimes we have to go beyond a box we can occasionally pull out. We need to have ways to give us comfort, or soothing, in our everyday interactions. What do we need to get us through?

I think this is a particularly important question for people with mental illness. It can be hard interacting with the world. It can be hard to simply walk out our front door. So what can we do to ensure we are able to comfort ourselves? Maybe we don’t carry a four-foot long stuffed lion with us, but how do we interpret this article into what works for us?

Thanks for reading

 

Cate

 

World Mental Health Day 2016 – Real People

world-mental-health-day-10-october-earth-globe-in-hands

World Mental Health Day. That’s today. It’s the day on which we come together, united in a call for better mental health around the world. It’s a day on which I usually know exactly what I want to say. This year has been different.

In the days leading up to today I have thought about writing about the WHO topic chosen of Psychological First Aid. Something that I have thankfully been on the receiving end of in the past. Those in the crisis and caring professions (for me it was the Police) providing psychological care. It helped, enormously.

Then I thought about writing about stigma, this time about sufferers of one mental illness stigmatizing sufferers of other mental illnesses. Yes, it happens and I had been on the receiving end of this just recently. I am, apparently, “a fruit loop”.

Then I was thinking about the people of Haiti. I wondered how their mental health was holding up. The situation in their country leaves me thankful for what I have, but I suspect that their need for psychological first aid doesn’t get a look in, the need for clean water and housing coming up as seemingly more important.

My friend, Motivating Giraffe wrote a wonderful post about the over-abundance of Awareness Days, and how they just don’t matter if we (including people at the top) don’t focus on what ‘really‘ matters. If you read nothing else on this Awareness Day, make sure you read this one (oh, and mine too).

But then heavy on my heart over this past week has been a story in the New Zealand news. It has unfolded as the week went on. It’s one of those stories that in other countries there might not have even been a raised eyebrow, let alone a news headline. But here, these things thankfully don’t happen every day. They can still stop the nation in its’ tracks.

A man with a mental illness went on ‘a rampage’ here. Only three weeks ago he was an inpatient in his local (Waikato) psychiatric hospital, but this week attacked his parents, leaving his mother dead and his father critically ill in hospital. No one knows what motivated this attack, except it must have been somehow driven by his mental illness.

For the next few days, his location was unknown. Police mounted a manhunt with no success. And then at the weekend came the discovery of more dead bodies in an unexpected location. The mentally ill man had killed another elderly couple and then taken his own life. The ‘why’s‘ will perhaps never be known but four people are dead and one still seriously ill in hospital.

What really strikes me is the emergence of this man’s mental illness. He had schizophrenia, and it might be easy to simply conclude “oh, that it explains it“. But that’s not fair. Not all people who suffer from schizophrenia go on to murder. Not all people who suffer from schizophrenia go on to commit crime. And not all people who suffer from schizophrenia go from there to taking their own life. But stigma will have us believing all these things.

This man had no history of mental illness (described in one article I read as a “nice young man”) and then apparently he used illicit drugs once. And ‘once’ was enough to trigger schizophrenia. You see ‘once’ is enough for some people and some mental illnesses. It seems it is a game of Russian Roulette. And that was enough to end four lives and leave hundreds in mourning. Lives changed irreversibly.

My point? That mental illness, and the tragedy that can follow, can happen to anyone. The stigma that too often is applied, is unfounded. It could happen to you too.

This story really hits home to me because I was a ‘nice young wo(man).

I wasn’t mentally ill. I had a good career, a nice home and I had prospects. I was ‘going places“. No one expected my life to change dramatically with the sudden emergence of mental illness. I don’t have schizophrenia, triggered by a casual single use of a drug, but I have another mental illness now. One for which sufferers aren’t often described as ‘nice’.

My friends and family had no reason to expect such a dramatic change to my life. And perhaps more importantly, I had no reason to expect that change.

I could accept a friend’s Bipolar diagnosis. I could even visit her in hospital. I had no difficulty in supporting her, because I believed it could never happen to me.

I could accept that a man known to my family had schizophrenia. But when he began to stalk me, I very clearly saw myself as a victim and him as the perpetrator. I didn’t once stop to think that he was a victim too. And I never once thought it could happen to me.

It did happen to me. I got my own (BPD) diagnosis and spent far too many times in hospital. My days in psychiatric wards and hospitals may not even be over. I don’t know what lies ahead.

If you gain nothing else from World Mental Health Day this year, please  know that it could happen to you. I don’t say that to scare you, rather that you don’t judge those who struggle with mental illness.

Even for the cases, we hear about in the news, those are real people who struggle/d with real illness. Maybe they were on the receiving end of stigma. And maybe they didn’t get the support or treatment they needed. I don’t know why Ross Bremner killed those people or himself this past week. Maybe we will never know. But what we do know is that they were real people, just like you and me.

Thanks for reading

 

Cate

You May Think That I Am Crazy

You may think that I am crazy by the time you have read this post, but that’s okay. As long as you don’t abuse me, I am finally (after 50 years) getting to a point where what you think of me doesn’t worry me. It doesn’t change me. You’re entitled to your opinion.

Do you believe in the divine? The supernatural even? Maybe you believe in God, or maybe you believe in some other religious or spiritual being. Do you believe that there is more to this earth than you, me and the animals who inhabit it? I do.

I believe that there is something more. I can’t give you a complicated explanation of why I believe there is something more. I just do. I believe there is something more than us, and there is even something more than our lifespan. Please don’t ask me for an explanation. My beliefs come from my experience. I have experienced what simply must have been a force beyond human kind. I will never be the kind of person who can give you a lecture on this. Maybe I’m copping out, I don’t have to have all my theories worked out, for me to be at peace with what I believe. That’s enough for me.

I started on this earth in a Christian environment. My family lived and breathed the Bible and its teachings. It was my father’s calling in life. My views have changed since then, and I know that some of what I believe wouldn’t sit comfortably with those Christians from my upbringing. That’s okay with me too. We don’t all have to agree.

Time to get to the point, though…

A few days ago I had a particularly hard day with my mother, who has Alzheimer’s Disease. We were talking about family and I was ‘introducing to her’ (for want of a better word) photos of family members whom her decaying brain had wiped from her memory. It was tough. I don’t think it was tough on her, but it was definitely tough on me. When I left I knew that there would be many days ahead when we would repeat the process of identifying the photos of family sitting on her window sill. Explaining why their particular photos were even there.

When I left I really wanted to be with those family members we had identified, but there were none close by. More so, the person I most wanted to be with was my father, who died nearly six years ago.

I did the next best thing and went to the cemetery to spend some time ‘with Dad’. Okay, so it wasn’t really Dad but I believe I can go there and talk to Dad. I don’t do it often. Just when I need to focus on remembering him and identifying for myself what advice he might give me.

I believe that where ever Dad is now, he can hear me. What’s more, I believe he can help me, particularly as I care for my mother. Before you start worrying, no I don’t see him but I guess I can remember being with him. Being loved. Being with someone who believed in me, and always importantly, had hope for me.

When I go to the cemetery I regularly take some coffee. I sit on the grass, drink my coffee and talk to Dad. I usually go at a time when the cemetery is pretty much deserted, just the gardeners maybe, somewhere in the distance. It’s peaceful. And after I have removed the odd weeds growing, I focus on talking to Dad.

That day there was no one there when I arrived. I really needed to focus on how Dad might help me if he were still here. I felt like something my mother had said had swept the wind right out of me. I felt lost and desperately sad.

After maybe fifteen minutes, another car pulled up. Two women and a dog got out and headed towards me. In a huge cemetery, they happened to be coming to a gravestone just two down from Dad’s.

The dog (a Jack Russell) immediately came over to me and was jumping over me and eventually sat down right next to me. The two woman were amazed that their dog was so friendly with a complete stranger. I asked the dog’s name. Her name was Hope.

This is where you might think I’m crazy. I believe that dog came to me as a messenger sent by my father. Hope was a reminder for me that there is hope. It was exactly what I needed, and once I realised this I felt an instant feeling of peace. I no longer had to worry about my mother. I could be at peace. And one day, my mother would be at peace. For a number of reasons that day, it was exactly what I needed.

A dog named Hope.

Think I’m crazy if you want to. It doesn’t matter to me. I believe that there is not just one explanation of the divine forces at work on our planet. There is space for us all to have our own beliefs. There is no right or wrong. If you want to laugh at my interpretation of my encounter with Hope (and hope), that is okay. That’s your choice. What matters to me is that it helped me enormously that afternoon to have that encounter. And so often such gifts for me come in the form of animals. I am so lucky.

“Some people talk to animals. Not many listen though. That’s the problem.”

A.A. Milne, Winnie-the-Pooh

Thanks for reading

 

Cate

“The Untreatables”

I need to clarify something. For my own sake as much as for anyone else. One of the terms I hate most in the psych world is ‘Treatment-Resistant’. I’ll explain why in a moment, but first what was a new term for me. Maybe it’s not new to you, but I wish it didn’t exist at all. I was quietly checking my Twitter feed recently when these two words came flying off the screen at me. “The Untreatables”. Ughhh!

“The Untreatables”? Really? Does anyone else take an immediate dislike to this term? (As an aside if you’re interested, the tweet I read contained a link to this article). ‘The Untreatables’: the people for whom there is no treatment.

If I had skills in the cartoon drawing you would see now a group of ‘Untreatables’ gathering together in what might be some type of 12-step group aimed at recovery from untreatable mental illnesses. But I can’t draw to save myself so I’ve hopefully left the image in your mind.

I think I have gained entry into this group three times. Firstly, I was pretty quickly labelled with the ‘treatment-resistant depression’ label. It only takes two different types of anti-depressants tried unsuccessfully, and you’re there. I don’t remember how it was put to me, that this was how I was now seen but I always thought it was an odd term. I thought it applied to me personally whereas it actually applied to the illness. A small but necessary difference.

There was I thinking”but I’m not resisting my treatment!?!” I had been taking my pills, careful not to miss a dose, and I had been going to my therapy (with a man who seemed decidedly odd. But that’s another post.). How could I be defined as ‘treatment resistant’?

The second time this applied to me was many years later when I was discharged dumped by the Adult Mental Health Service in my city because I wasn’t responding to their treatment. This time, ‘treatment-resistant’ was being applied to me, the person. A social worker had been working with me using Cognitive Behavioural Therapy (CBT) and I didn’t respond as I should (apparently). Actually, I suspect the term ‘Untreatable’ was used because that’s really what they were saying. There was no treatment for me.

The same thing happened a short while later with the Eating Disorders Service I had been seeing. There I had been in group therapy (using CBT again) and I hadn’t responded as they thought I should. I was discharged dumped again with my untreatable eating disorder. Fortunately, I had got myself past the Anorexic phase before I even got seen by their Service (sitting on a waiting list for years) otherwise, I suspect I would be dead by now.

My point in sharing what was a very frustrating but also depressing stage in my life is that in each case, mental health professionals were leaving me with a sense that all this was my fault. I was either resisting treatment or I was untreatable because I didn’t respond to CBT.

I accept that in the first case, the psychiatrist involved may well have been clear in saying that my depression (the illness rather than me personally) was treatment-resistant, but in my frame of mind, I took it to be about me. It wasn’t. I wasn’t doing anything wrong. I simply hadn’t responded to the anti-depressants he had chosen. It was actually more about him than about me. It was about choices he had made.

When I saw the tweet that hit me between the eyes, I took exception to that term ‘The Untreatables’. It’s an awful description as well as being an easy way out. Class us as ‘untreatable’ and you can send us on our way.

I take exception too, to the term ‘treatment-resistant’ if it is used to describe a person.

To any mental health professionals who happen to read my blog, please think before you use either term whether it is to the patient or not. How you think about it will determine how you see your patient, regardless of whether you use the terms in front of them.

And to mental health patients, please hear me when I say

You are not treatment-resistant.

Your illness may be treatment-resistant, but not you. And I hope that you are never made to feel ‘Untreatable’. Don’t believe it, and know that it is not your fault.

There are theories that some mental illnesses are untreatable, particularly Personality Disorders. I don’t accept that, but then I’m no professional. I think it comes down to how you understand the term ‘treatment’. The Mental Health Services who chose to discharge dump me from their services could have chosen a different treatment path. They could have simply listened to me. Instead, they put a distressed and unwell person out of their systems without support. It wasn’t until a few years later when another mental health professional worked out that I had Borderline Personality Disorder (BPD) and not just depression and an eating disorder, and that is perhaps why I hadn’t responded to the earlier interventions.

I am convinced that sometimes it is just about having the time to work beyond the ‘treatment resistant’ or ‘untreatable’ labels.

Thanks for reading

 

Cate

 

Human 2 Human

Relationships with other humans have to be one of the most difficult and complex aspects of life. They are for me anyway, and there have been a few issues which have reared their ugly head for me in the past few days.

I know that friendships, family connections and intimate relationships are really hard for me and now days I am inclined to pull back from all of them.

With one failed marriage behind me, along with a string of failed relationships, I am alone and pretty certain that I will remain alone. I believe now that I not supposed to have  someone by my side. I have never believed that there is a soul mate for everyone, nor will everyone find their soul mate. Actually,I suspect my soul-mate might just have been and gone.  And sometimes circumstances just get in the way and block the way for what might have been true love.

On the other hand, it was some years ago now that I also came to the conclusion that close friendships were perhaps something I would be best to avoid. You may call it sad but I call it safe. After being let down by a number of friendships, I made a specific decision that friendships I might have been able to rely on were no longer worth it. Yes, I do have friends but not many and I try hard not to rely too much on them. I am inclined probably too much to withdraw rather than depend.

And then there is family. I have been fortunate to date with my family connections. Maybe they didn’t always understand me or my needs, but they did seem to love me. I think they still love me, but their availability  for me to rely on them is perhaps changing.

I know that my Borderline Personality Disorder (BPD) plays a part in how I relate to other humans. I’d like to say it isn’t part of the story. I’d like to say that I have it ‘under control’. But it is part of me, part of my personality if you like, and no matter how many ways I learn to control or even recover, I know that it will always be there.

An article I read highlighted for me some of the issues that float in and out of importance as issues for me with BPD:

“Most patients named gaining control over emotions, mood swings and negative thoughts, followed by reduction of municipality, self-harm and other destructive behavior and improving self-acceptance and self-confidence. However, improving relationships and improvement of social participation, social competence and job situation has been mentioned as important.”

It speaks of the issues important to patients with BPD in the treatment they need. But I use it as it easily highlights in a paragraph issues I deal with when connecting Human 2 Human.

It’s hard. It’s constantly hard, and with those issues at play perhaps it is easier to understand why I choose so often to withdraw.

This week someone important to me said:

“I don’t care…” [about you]

Ouch! Actually, it was more than “ouch”. It was fuck! Under my breath, of course.

The rest of their words no longer mattered. I had heard that they “don’t care” I didn’t matter anymore. They possibly weren’t even aware of having said it, but it was loud and clear. Maybe this person was someone I could no longer rely on (for any number of reasons). Maybe this was connected to my having BPD. Maybe I was too much. Maybe I had misinterpreted what another person might have taken differently. But then maybe it was simply about their issues not connected to me. It hurt anyway.

Do you see why Human 2 Human is hard?

Another relationship came up on my Human 2 Human radar. I know my mother’s Alzheimer’s Disease is not about me, but how I respond to something that is ever-changing is totally about me. I can’t escape this one.

In a conversation with my mother, I discovered that her memory has gone so much that she appears to know nothing of my life beyond my name and that I am her daughter (I am thankful that she still knows this). She also appears to know nothing of her life when I have been a part of it. Of course, I knew that this was coming some day but that day had arrived and it cut deep. My own mother doesn’t know me. Maybe even I don’t exist for my mother anymore.

My father passed on nearly six years ago, and it seems that while my mother sits in front of me, she is in some way gone too. I have heard the expression of grieving for someone who still lives, and that is even harder than it sounds. I feel like the wind has been blown out of me.

My parents have always been very important to me, although I admit that my mother and I have never been close, never even been friends. The tension between us has gone now. Something I can’t totally explain. But maybe she has gone too.

Perhaps my feeling of loss this week connects to my BPD. I know there will be a connection because there always is. It’s just that I have yet to work it out, to be able to put it into words. Meantime it hurts. Both instances I have described here. I need to hide away and lick my wounds.

I want the luxury of time with my therapist again, but I have no therapist anymore.

All I can do is write. I don’t claim to have any answers. Just questions. I hope that what I choose to write and share with you makes even the tiniest ounce of sense. I suspect it will make more sense with others who travel with a Borderline mind.

Thanks for reading

 

Cate

 

Me And Mum

World Alzheimer’s Day – 21 September

Image credit: courtesy of digitalart at FreeDigitalPhotos.net
Image credit: courtesy of digitalart at FreeDigitalPhotos.net

I hadn’t intended to post again so soon after my last post, but World Alzheimer’s Day today is too good an opportunity to say let’s support the people in our communities who live with Alzheimer’s. People who have the disease, people who support those with the disease, and people who are employed in working with both groups of people.

In writing about Alzheimer’s and my family’s journey it is really important to me that I don’t take advantage of my mother’s plight. She deserves her privacy, something which she has always held tightly to. She doesn’t deserve to be some kind of joke. The struggle she lives with is real, but she is also real. She has feelings. Part of my task in supporting her is to protect those feelings, even though she might not be able to express or even understand them.

This post comes from my own reactions to my mother’s illness. I have tried to write from a perspective of my journey, rather than my mother’s. I hope that in doing so, I have preserved at least some of Mum’s right to privacy.

It’s funny how things happen. I think I would be pretty much the last person my mother expected or even wanted, to be there for her as she traverses her last years – with Alzheimer’s Disease.

“The phrase ‘Love one another’ is so wise. By loving one another, we invest in each other and in ourselves. Perhaps someday, when we need someone to care for us, it may not come from the person we expect, but from the person we least expect… [ someone] whose love for us has assigned them to the honorable, yet dangerous position of caregiver.”

Peggi Speers, The Inspired Caregiver: Finding Joy While Caring for Those You Love

Mum and I never got on. Not when I was a child and not for most of my adult life. It might seem harsh but the reality is that I think Mum and I tolerated each other for the sake of my (now late) father. I always got on great with Dad, but Mum didn’t appear to understand me and I didn’t understand her. I fully expected that when she was old, we would simply go our own ways.

My father died suddenly nearly six years ago. My parents had been temporarily living with me (after they lost their home in the Christchurch 2010/11 earthquakes). I remember the night after Dad’s funeral, I looked across the room at Mum and wondered how we would go from here. Mum hadn’t been diagnosed with Alzheimer’s at that stage, but both Dad and I were clear that she was showing symptoms.

You see, Alzheimer’s runs in my family. My grandmother died of it, as did one of my uncles more recently. Earlier generations possibly bore it’s burden too. I have known it for most of my life, being only about ten when my grandmother was moved into residential care back in the late 1970’s.

Sadly, it’s something we have grown to expect. Mum never talked about this family heritage, but I’m sure she was probably quietly terrified. Frankly, I’m quietly terrified of it myself. But I’ll face that when I get there. My fear is not the focus for today.

It wasn’t long after Dad died that I got a very clear sense that he would want me to ‘be there’ for Mum. People have since told me “don’t be silly, he wouldn’t put that burden on you” but that’s not the way I saw it. To me, it was just one last thing I could do for him. I never stopped to see it as some type of burden. It was just the way it was going to be. Strangely, doing it for Mum never came into it back then. Supporting her would be definitely something I did for my father. Perhaps that’s just the way I needed to see it back then.

Mum was finally diagnosed about two years ago, but symptoms were obvious to those of us who were with her regularly, about six years earlier. And I’ve been learning ever since. I thought I knew the disease, but I really didn’t know anything until I learnt to live with it daily. There are new lessons each day.

Our relationship has changed enormously. It’s still not what I would call a typical close mother-daughter relationship. It never will be. Our relationship centres around her, and what she needs. My needs don’t really come into it. Some days that is really hard. Some days when I’m not well myself I want to scream “what about me?”. But mostly it’s okay. While Mum isn’t able to acknowledge it, I know that she needs me to prioritise her. This is her time now.

Mum needs me. She is living in a rest home, so yes, her basic needs are met. But I see her most days. I am clear that when I am not there, the staff take good care of her, but they are clear that Mum needs (and wants) my presence.

I’m the one that meets all Mum’s other needs. It might be the little things that no one would ever think of, or maybe bigger things like making decisions for her. I’m the one that notices the dirt on her shoes and stops to scrub it off just before taking her out to church. Maybe the dirt doesn’t matter, but it would have mattered to her… and so, now it matters to me.

Mum never appears to have any difficulty knowing who I am. She’s never once hesitated over my name and has no problem telling anyone who will listen that I am her daughter. That said, there are times when it’s quite clear to me that she is talking to me thinking I am my father. Other times I am a mystery third person, who she was eventually able to reveal to me was her sister (she never had a sister!).

I know that Mum has a great deal of difficulty knowing who most other people are. She’s confusing names or having to ask me who someone is. I admit that I try to keep the family names alive in her mind. I talk about my brothers (by name), about her grandchildren (again by name). I talk about my father because I can’t bear to think that she might forget the man she was married to for 53 years.

Maybe I do all of that for my own sake. Maybe I make decisions for her in such a way that will save me from having to see her suffer. I don’t know if it’s that I don’t want her to suffer, or that I can’t bear her suffering. Does that make sense? The two things are different to me.

Alzheimer’s Disease is a terribly cruel illness. I’m not the first person to write that. I see it’s cruelty daily as it robs little pieces of my mother.

I see the pictures in many Alzheimer’s publications of two brains side-by-side. On the left is a ‘normal’ brain and on the right is the smaller ‘Alzheimer’s’ brain. I wonder what my mother’s brain looks like now. How much has it shrunk? And for how long it can go on as it is? I don’t know.

The future of the journey which Mum and I are on is unknown. There is so much that is unknown. Each day, I don’t know what it will contain. Even though I already see my mother struggle so much, I know the struggle will only get worse. It’s just a matter of time. Will it be today? Or some time ahead?

What I do know, is that I have a remarkable opportunity to serve a woman, my mother, in her final days. What an honour. Seriously. I never thought I would say that, but Mum’s willingness to let me be there for her is a gift.

I read that “being a mother is about protecting your children from every conceivable thing that might cause them hurt”.  I’m not a mother myself but I now see my role as protecting my mother from everything that might cause her hurt. Sometimes I can achieve that but sometimes I can’t. At least I can try.

By choosing to look at our journey in these ways makes it bearable for me. I dearly hope that I am somehow making it bearable for Mum.

Thanks for reading

 

Cate

 

Other Posts You Might Be Interested In

Bewildered

Never Say Never

 

Uncharted Territory

“Life is uncharted territory. It reveals its story one moment at a time.”

Leo Buscaglia

 

When I was first dealing with mental illness, I found myself in a world where people wanted to know about my feelings. Feelings? I thought myself an intelligent person, but feelings were something I knew nothing about. Actually, I knew so little that I thought I was being asked what I thought.

I don’t remember  ever talking about feelings in my family while I was growing up. Actually, I’m pretty sure that we simply didn’t talk about how we felt. Even into my adult years, my parents would never talk about how they felt, so I think it’s pretty safe to say that feelings were simply not an issue for discussion.

When I found myself in the offices of doctors, therapists, and psychiatrists, they all wanted to know how I felt. And I had no idea. How I felt simply did not register with me.

In time I found myself able to explain what was happening for me using imagery. I could paint a word picture, and if the health professional had the time to listen, I was able to arrive, through the imagery, at what I was feeling.

I was depressed (apparently). I simply knew there was something very wrong. Even now, after many years of therapy to unearth my feelings, perhaps my first sense, when my mental health is on a downward spiral, is that there is something very wrong. I’m just not that sure what it is.

Using imagery I would eventually arrive at fear. Yes, I was terribly afraid.  I felt like I had fallen off a very high cliff face. I had no idea where I was. And as I fell, I wondered where I would land. It was uncharted territory.

In my mind, this cliff face was in the Waitakere ranges, west of Auckland. I lived in Auckland for a time during my childhood and later as my mental illness was revealing itself. I had childhood memories of walking in the Waitakere’s with my father and brothers. I always felt very safe with them, even on days when we might end up a little bit lost. I don’t remember there being any great rock faces from which I might fall, but my mind’s image was clearly here.

The problem when you fall, you often can’t see where you are or what is above or below. You don’t know whether you have landed at the bottom and so can’t fall any further, or whether you have landed on a ledge. And you don’t know whether the ledge you might be on, might give way and you fall further.

With depression, I found myself falling often. I would think it was rock bottom, and it couldn’t get any worse. But then, worse would come and I would be falling again. I thought I couldn’t possibly feel any worse. I couldn’t feel any more despair. But I did. Over and over.

That’s why Penny Redshaw’s (of Motivating Giraffe fame) drawing hit a note with me. It was my experience of living with depression.

rock-bottom
Image credit: Penny Redshaw,  Facebook/Pics by Penny

Thankfully, I’m not at the bottom of a very big cliff called Depression right now. But I do feel like I’m being dangled over the top of a cliff, and I am very scared terrified of what might happen next. At the moment my doctor (who doesn’t know me very well) and a psychiatrist (who doesn’t know me at all but has somehow ‘assessed’me without me being present!) have decided between them that I should come off lithium, a medication I had previously been told I would need to be on for my lifetime. The doctor has asked what I think but basically ignored my both my thoughts and my fears. It’s happening anyway.

So back to word imagery, I feel like I am being dangled over this very big cliff by these two doctors. There has been a fence (its’ name was lithium) which protected me from a fall but that’s gone and my toes are over the edge. I am currently clinging onto the few bits of greenery, the odd tree also clinging to the edge. I hope they will have strong enough roots to hold me safe (think skills I learnt in the years of therapy which might, if I am lucky, hold me fast to my well-being). Will it all be enough?

I don’t know. And if I fall, I don’t know whether it will be a ledge on which I land or the bottom. I don’t know how hard I will land.

I.Am.Afraid.

As I said, I just don’t know. We never know. With a physical illness, there is often some sort of chart, maybe just a pamphlet or maybe a book, to tell us what to expect.Sometimes it’s called a prognosis. That’s not the case with mental illness. We never know what will come next. That’s just one of the reasons why we need our friends who are on a similar journey. They ‘get’ that uncharted territory can be a scary place to go.

Stay tuned. Hopefully, I’ll be able to grab a passing tree root to stop the fall.

Thanks for reading

 

Cate