Despair, fear, and the decision to hope.

I used to see myself as a hopeful person. I was always seeing opportunities to plant seeds of change. I had a dream for a future where we cared for and restored the vitality of our planet. I truly believed the arc of the universe bent towards justice. I thought this way of seeing the world was intrinsically part of me. I also had faith, not in an interventionalist God, but in a greater power oriented towards justice and renewal.

Two years ago, all that disappeared in a moment.

We had just found out that Miromiro was on the way, I read an article about climate change, which predicted catastrophic, near-term outcomes. As I read, a chill passed through my whole being, closely followed by panic. I was shaking all over, my head spun, I couldn’t breathe. Over the next week the panic continued to come in waves, and in the moments in between I was close to tears. My mind completely bought into the worst case scenario, and with that came the fear that our children would suffer.

Since then, obsessional worries and an accompanying sense of dread have been a nearly constant feature of my life. There are times when I am really busy and engrossed in things at work, and I don’t notice. There are brief moments when I am captivated by the children’s laughter and forget my worries. When I sing with my choir I have an hour or two of peace. Once these moments pass, it is back again. Fear, tinged with grief. It encroaches on activities that I used to find grounding and enjoyable. Gardening now brings anxiety about whether we will be able to feed our children in a changing climate. With droughts, massive hailstorms, plagues of cicadas, and now weeks and weeks of rain drowning our spring seedlings, growing food has not been easy in the past few years! Time with my children almost always involves sadness tugging at my sleeve and trying to get my attention. Church used to nourish my sense of hope and purpose, but these days I sit there feeling disconnected and numb. I’ve become depressed, and at times overwhelmed by despair and hopelessness. Some of it is secondary sadness – I feel grief that I am missing out on enjoying my children’s first years, which then makes me more depressed, which means I miss out more, in a vicious cycle. I can’t see the world getting better, and I also can’t see myself recovering from this state.

Some weeks are a lot worse. The US election brought one of those weeks. Anxiety took the opportunity to grip me and shout in my face about how if the US pulls out of the Paris agreement, we’re going to cross that line and climate change will spiral out of control… but we might not get that far, because Trump might blunder into a nuclear war first. These thoughts left me literally shaking with terror. I cried on and off for most of the next day. There were plenty of articles on the web to further fuel my fear.

I was just starting to breathe normally again, when we were woken at midnight by a massive earthquake, bringing more immediate worries to the fore. Then there were floods.

I am grateful that just before these recent stressful events, I went to a talk by Rev Dr Rebecca Dudley, on Activism, Despair, and the Practice of Hope. I saw a billboard advertising the event, and it seemed to speak to where I was at.

Rebecca talked about hope as an intentional practice. Not something that just happens, but something we can work at. One of the things I liked most was that she spoke of hope as an act of defiance. Hope is a decision we can make. It is about courage and defiance, not necessarily optimism. She talked about various elements of her own practice of hope. These included needing to draw from a deep well – those things that give you strength and meaning, be it music, prayer, nature, community…what nurtures your soul. Prayer, confession, taking small steps to bridge gaps, and finding the job that is yours to do were also part of her practice.

“If you find hope easy, you have not been paying attention. You have not sat with someone long enough. You haven’t listened closely enough. You have not cried hard enough. You have not been angry enough at injustice. If you start with the right question and you face it squarely, you will hear and see some unbearable things. Here what I know for sure: Hope starts by looking steadily at reality. It goes straight through the middle of despair. Then it is pulled into God’s will for the world God loves so much. Hope is freely available. But it does not come cheap.” – Rev Dr Rebecca Dudley

It is a stance that fits well with the approach I use at work, and try to practise in my own life – Acceptance and Commitment Therapy (ACT). Trying to use ACT in my current struggle, I try to notice the thoughts and feelings of despair, and make space for them, but not get completely caught up with them.  I try to be present in my life, in the present moment. And I try to act in line with my values. Whatever is going on in the world around me, and in my own mind, I can always choose to act in connection with my values. Among these are social justice and care for the earth. Despair tells me there is no point trying anymore. To defy despair,  I can keep on taking actions, however small, to bring the world I long for a tiny bit closer to realisation. I can speak out against injustice. Act with compassion. Plant trees.

mural

This is part of a mural created by our church – it captures our community’s values and vision for the world.

The other thing which has made a difference in the past week was my last session with my therapist. I was talking about how despairing I felt about the world and imminent disaster. She said to me, “OK, so what if you’re right. Just say your worries do become reality. What would your children need? What would you want for them?”

Love. A sense of purpose. Connection with community. Kindness and compassion. Resilience. Curiosity and open-mindedness. Creativity. Belief in justice. Hope.

No matter how much I am struggling inside, how can I act as a parent to nurture these things in my children?

I can’t convince my mind that the future is not dark… but I can act as though there might be a miracle. Even if the miracle never comes, striving for justice and acting with love is never going to be the wrong thing to do. It might make a difference in the here and now.

And even if my brain is geared towards the worst case scenario, perhaps I can bring up my children to practise hope – defiantly.

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Why therapists should know about aphantasia

Aphantasia is a newly coined term for the inability to visualise, or to see things with your mind’s eye. You can read about it in my previous post here, or follow the links at the bottom of this page.

Since aphantasia has been gaining some media attention, I have been pondering the implications for psychological therapies. I have recently started working in mental health, and have previous experience as a service user. An understanding of aphantasia is definitely important if you are working with people who experience this.

Why should therapists/counsellors know about aphantasia? I have a memory of sitting in a counselling room, my frustration increasing as my therapist insisted that I try to visualise a calm lake. As in previous sessions, I had said I didn’t want to do this as I knew it wasn’t helpful. He thought I should keep trying. I didn’t know at that time that some people could actually visualise, but I knew that thinking about a lake seemed a stupid way to try to relax. Relaxation visualisation is a technique which is quite often used by therapists, for example a “safe space” visualisation. This is going to be confusing, frustrating, and ultimately a waste of time if the client has aphantasia.

Visualisation techniques are used in a range of therapies. I have recently done several workshops in Acceptance and Commitment Therapy. Most of the presenters used visualisation exercises in their teaching, and to demonstrate exercises they did with clients. Examples include:

  • One “defusion” exercise in ACT involves visualising leaves on a stream. “Visualise yourself sitting beside a gently flowing stream with leaves floating along the surface of the water. Take each thought that enters your mind and place it on a leaf… let it float by.  If your thoughts momentarily stop, continue to watch the stream.  Sooner or later, your thoughts will start up again. Allow the stream to flow at its own pace…”
  • One presenter got us to visualise someone who had made us feel supported and uplifted. We were to imagine them looking at us, looking into their eyes and seeing them seeing us. Then we were meant to bring their face closer and turn it around and put it behind our own face, so we were seeing with their eyes.
  • Another presented demonstrated what it is like when our anxiety is taking too much of our attention. He held up a sheet of paper, and asked a volunteer to picture all of their worries on the piece of paper. He then held it right in front of their face.
  • One presenter talked about working with a veteran who was experiencing intense shame about not intervening when his co-soldiers desecrated dead bodies. The therapist had supported him to visualise himself in that scene, and looking at his own face he realised how young and scared he had been at the time.

Obviously, none of these techniques would be very effective working with a client with aphantasia.

As we did the exercises, I found myself getting distracted by trying to figure out what I was meant to do. What on earth does a thought look like? What are people placing on the leaves when they do the leaves on a stream exercise?

Recently I have also been looking into EMDR (Eye Movement Desensitization and Reprocessing). A lot of the clients I work with have PTSD, and EMDR is proven to be an effective treatment for helping people process trauma. I don’t know much about EMDR, but some of the descriptions I have read involve clients identifying “a vivid visual image related to the memory” and focusing on this image (and related emotions and sensations) while engaging in EMDR processing. To work with someone with aphantasia, a therapist would need to be able to adapt their approach so that they weren’t using visualisation. I have spoken to a psychologist who uses EMDR, and she thought it would be possible to adapt the protocols in this way. On the internet I came across an account of someone who had been a client with a therapist trying to use a visualisation based EMDR procedure. The client didn’t have knowledge about aphantasia so could not explain their experience, and the therapist became very frustrated that it wasn’t working.

Obviously there are implications for a number of therapeutic approaches, and it would be good if more counsellors and therapists had an awareness that this is part of some people’s experience. If client hasn’t heard about aphantasia, it might be difficult for them to explain why something is not working for them. Knowing about aphantasia will help therapists check whether visual techniques are helpful. I think the worst thing a therapist can do is deny that a client’s experience is “real” – which is what one therapist at the conference basically said to me. “You could learn to visualise if you tried hard enough.” If she’d been my therapist, I don’t think I’d come back!

Although Adam Zeman is keen for aphantasia to be understood in terms of a variation of human experience, rather than a disorder, it can cause some people distress. This is another reason it is useful for therapists to know about aphantasia:

One of the responders to Zeman, Tom Obeyer from Ontario, Canada, said, “It had a serious emotional impact. I began to feel isolated — unable to do something so central to the average human experience. The ability to recall memories and experiences, the smell of flowers or the sound of a loved one’s voice; before I discovered that recalling these things was humanly possible, I wasn’t even aware of what I was missing out on.”

Obeyer said that the condition has severely affected his relationships since he can’t visualize his partner unless they’re physically with each other. He also struggles with the inaccessible memories of his mother who passed away. “After the passing of my mother, I was extremely distraught in that I could not reminisce on the memories we had together. I can remember factually the things we did together, but never an image. After seven years, I hardly remember her,” he said.

(from Science Explorer)

I have been reflecting on my experiences as a young person. I was diagnosed with Borderline Personality Disorder. Some of the experiences associated with this include:

  • Frantic efforts to avoid real or imagined abandonment
  • Identity disturbance, such as a significant and persistent unstable self-image or sense of self
  • Chronic feelings of emptiness

I wonder now whether having aphantasia contributed to some of these experiences being painful. If someone abandoned me, I wouldn’t be able to conjure up a picture of them – they would be gone from my head! Likewise, when alone and experiencing emotional distress, I couldn’t conjure up the faces of loved ones as a source of comfort. I was alone with my feelings, and mental darkness.

I wonder if the fact I couldn’t visualise myself as a child, or visualise myself during past experiences, could have contributed to the sense that I didn’t have a stable sense of self.

I’m sure that it is possible to have these feelings and experiences without having aphantasia, but I wonder whether, for those of us who do, it adds another layer.

You can find out more about aphantasia here:

http://blogs.exeter.ac.uk/exeterblog/blog/2015/08/26/aphantasia/

http://www.sciencedirect.com/science/article/pii/S0010945215001781

http://www.bbc.com/news/health-34039054

http://www.nytimes.com/2015/06/23/science/aphantasia-minds-eye-blind.html

http://vanwinkles.com/what-it-s-like-to-realize-you-have-aphantasia

http://discovermagazine.com/2010/mar/23-the-brain-look-deep-into-minds-eye

Things that make no sense

Today is the last day of mental health awareness week and the theme has been “connect.”

Since early on in my experience of mental illness the internet has been a source of connections. I’ve searched for information and found webpages written by others and I’ve recognised my feelings in their words. I’ve blogged about my own experiences and heard from others that they found my words useful. In the past year I’ve connected with groups on facebook and their support has been a lifeline. Sharing our stories can make them seem a little less scary and we can find ourselves a little less alone. So here’s another chapter in my story.

I have bipolar. I’ve been “out” about that diagnosis for as long as I’ve had it. It has helped me understand what went on for me and explain to my friends why I acted the way I did. Bipolar is easy for me to write about. But that’s not what this post is about.

Last year, something different struck me. Suddenly, like a huge tree falling in the heart of my life. The fact that it came so suddenly, and that it happened only hours after one of the happiest moments in my life, made it somehow more awful.

That night, our daughter had arrived. After years of hoping and planning and dreaming. After months of carrying, loving, waiting and wondering… she arrived. She was placed, warm and wet, on my chest. She was turned away so I couldn’t see her face, but I reached up and held on to her slippery little arm and felt a rush of joy and adoration. Then she was whisked away for a short time, and the drugs which should have helped during the birth finally kicked in, and things became a blur, and exhaustion settled in.

It had been a long week. I’d had contractions four nights in a row, and then our baby arrived and cried and fed and cried through the fifth night. Gradually the fuzziness of the drugs wore away, but instead of the joy returning, darkness began to seep in. Within a day it seemed to have spread through most of my being. I ached with it.

At first I told no one. It made no sense. We had our beautiful baby at last. This was to be such a joyful time. I tried my best to be joyful. I acted the way I had expected to act as a new mother but it seemed to take so much effort. I felt like there was there small part of me that was still able to notice how beautiful our daughter was, how amazing, but that part of me was dragged down by the weight of the darkness that was taking over.

At some point in the first few days I managed to tell L something about how I was feeling, and I was relieved to find that she didn’t recoil in horror. I was even more relieved to realise that she loved our baby so much she could love her for both of us.

During her first few weeks I breastfed our daughter, I cradled her in my arms, I bathed her gently, I sang her lullabies. I did everything I had expected to do but felt nothing that I had expected to feel.

Sometimes I felt as though I was looking through a window at the happy scene of how things were meant to be. We announced Windhorse’s arrival, “we are very very happy to share the news…” because L was so very very happy, and I wanted to be. And because birth announcements aren’t meant to read “One mother is over the moon with joy at the arrival of our baby and the other is sad and numb and falling apart. Baby is doing well…” That’s just not how things are meant to be.

L encouraged me to talk to a couple of friends, and eventually I did. On the phone one of them listened to me talking about how distant I felt from my own baby and said “that must be heartbreaking for you.” And I wept, because it was. Heart breaking. And then I realised that must mean that I had a heart. And if I had a heart that could break, maybe I had a heart that could love again.

We told a few others that I was struggling but mostly I didn’t want people to know. I didn’t want to have lots of people asking me if I was feeling ok, or giving me advice or telling me things would get better. I just couldn’t bear it.

After a few weeks I we contacted the maternal mental health team and I started taking antidepressants. The psychiatrist I saw said that the role of hormones was sometimes overemphasised in postnatal depression, but in my case he thought hormones were the cause. In the past I have had experiences of severe mood changes linked to hormonal changes and the timing seemed to line up with the pattern of prolactin levels after birth. I also went back to an art therapist I’d seen in the past and I found the art therapy process immensely helpful.

Slowly, things started to get easier. As I went through the actions of being a loving mother, I felt my heart catching up. The darkness started to drain away and the full range of emotions flowed back in to the space it opened up. After about six months I still felt sad but I felt back within the range of normal emotions.

It has been fifteen months now. There are times when I still feel a little numb around the edges. There are days which are really, really hard. But mostly I feel alive and I am filled with amazement and delight as I watch Windhorse learning about the world around her. Today she got up onto her feet without pulling herself up on something. Then, after watching some older children intently, and trying several times without success, she suddenly managed to put the lid onto a felt pen! Witnessing these tiny, wonderful feats, my heart is full of love for this determined little person.

It has been hard writing this post. I feel apprehensive about hitting the “publish” button. I feel like my experience makes no sense and no one will understand. But then, mental illness never does make sense. It can happen to anyone and at any time. Even when you think you’ve got what it takes to overcome it, it can come up from behind and hit you in a new way.

There’s something else that makes no sense. Hope. Even when you think you’ve got nothing left, it can come up from behind and open you up in a new way.

I’m going to finish this post with some pictures I did in art therapy, and a poem I wrote years ago. L found it and read it aloud to me tonight. If someone reading this is in a dark space at the moment, I hope a glimmer of hope will find you soon. Arohanui. Hang in there.

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Singing

A korimako is singing,
but the sky is still dark.

Why do you sing, foolish bird?
maybe the sun won’t rise today

maybe the sun
has forgotten the way to the sky

maybe the sky
has given up fighting the clouds

maybe the clouds
are heavy with tears

maybe the tears
will blind the sun

maybe the sun won’t rise today;
the sky is still dark

but a korimako is singing
“The sun will rise again.”