Posts tagged ‘post traumatic stress disorder’


CW: medication switch struggles, depression, loss of self


Well, I have been very low and it has taken me a really long time to pull round ‘enough’ to want to post again. Most of the trouble has been connected to coming off Citalopram after 10 years, and switching onto Duloxetine. They are both anti-depressants with strong anti-anxiety effects, and Duloxetine is also supposed to help with pain management, though so far it has not had that effect for me, but the two friends with chronic pain I know taking it who feel a benefit are on far higher doses. I’ve also had an allergy to the treatment for the allergy to the treatment for my eye trouble… sigh. Itchy eyes and blurred eyesight are not conducive to creativity and it’s been over 6 months now. Another problem has been missing my continuity people, my oldest friend has been away for 6 months and I really miss her wisdom and listening. My therapist of the last 10 years died last spring, and I didn’t get closure as she was suddenly rushed to hospital. I’d like to think I can weather stuff like this, but apparently not, or maybe not when it all falls together with a GP demanding I follow treatments that are traumatic for me, while trialling 4 therapists in 15 months to replace lovely Sharon.

keep growing

I now have a new therapist, a MAN!! [I’ve only ever seen women for 27 years] who is so far impressing me though the usual drawback is occurring – Sharon and I had worked out that a 90 minute session worked really well in allowing me time to trace through triggers and issues in my complex PTSDs and time to re-surface and face the world again, as an agoraphobic going home after delving deep. I’ve now been told by various people [who I found tbh pretty inadequate at their jobs as counsellors, therapists and supervisors] that this was inappropriate, but you know what, it worked. I have atypical agoraphobia in that I can go places and do things others find difficult, but can sometimes find no feeling of safety anywhere, including my home. I challenge myself to stay part of the world, to make art, to be at some level an activist, to not be silenced by my experiences and their perpetrators. 50 minutes to name, explore, trace, untangle and figure out strategies is impossible, without then also the making safe… at least I only have to get a taxi home now and as I am very good friends with 1 of the drivers, and liked by all the others in the small company I use, I can feel safe enough to get home and crash, if necessary. Before I had to take 2 buses home, and change in the busy city centre.  So maybe it only needs to be a 2 minute turnaround? It irritates me that what I know works best for my long term balance and self care is unavailable on my limited budget, because of the Government cuts to disability benefits. Cuts? Yes, they are frozen, and the cost of living isn’t. A bus ticket costs £1.20/ 33% more than it did 10 years ago, a loaf of sliced bread 25p- 60p more, depending what kind you get.


I went to a really good conference last Friday and Saturday and have come out with lots of thoughts and questions, having met some lovely people – potentially 3 new friends! – and while it was an extravagance of spoons/energy, I really needed a bit of a shake-up, as the GP had weighed me down with appointments and bad diagnoses, so I was feeling like my life had no fun, and I was becoming very dull to be around. Though my kind friends have never hinted at this, I’ve been aware of having to ask for extra listening, and of course it becomes that spoonie anxiety nightmare – will I know when enough is too much? Will I wake up one day with only paid helpers coming round? Luckily most of my friends are intersectional in their politics, and often have experience of these issues themselves, but with no therapy holding the space, it has been very hard, and I have cried with friends and others who really didn’t expect it, as their question was a straw that broke my back. Two friends in particular stepped up to the plate, and I am very grateful to them. I have always ‘kept my face up’ as part of my self-defence, so this became upsetting in its own little spiral.


The single hardest day was when I woke up and thought about my artmaking, and just felt the thought settle that there was no point to it. At this point I normally joke, but actually it was very frightening. I have always managed a lot of my anxiety by doing and when I am doing enough, I can then feel safe to be. I grew up with no acceptance of my right to be myself – I was instructed from an early age to be my mother’s comfort and to do whatever it took to cheer her up. One of my earliest memories is of her bursting into tears when my father came home from work, and of feeling I had failed. That’s not a feeling a 4 year old should have. I was also told I wasn’t allowed to make art or study art at various points, and it has taken years and a really supportive tutor on the Access course I attended to break the block, ‘be selfish’ and attend to my own needs by making. My oldest friend is my absolute go-to champion for my making, and after 18 years of her friendship, I thought I was pretty solid on this. I have had solo shows and made some wonderful pieces, had people tell me how much a piece meant to them, but still… I hit that place of feeling the world has no need of my art. And it has been very hard to hold, because if my art is not needed, then I am not needed. I could feel that here was a ‘wonderful opportunity’ to heal some of that bad scripting, and replace it with solid assertion of my right as a human being to just be.


Without a therapist, missing my best ally/friend, feeling the general depression of all Remainers about Brexit, feeling the fear and anger of all disabled people about how the Department of Woe and Persecution is killing thousands with the Government’s blessing and the Opposition’s silence and the media’s collusion… yeah, that’s a bit of a tall order.


Instead, I am holding onto making what I can – patchwork, painting components, recently tie-dye and dressmaking. And now I have a commission for some textile art and a request for some collage art I had already planned to make as a gift for that person, and they are slowly creeping forward. I have plans for a new quilt in grey and sunshine yellow! I have bought a swimdress and am planning to go to a disabled swimming session, I have found a new doctor… I am resurfacing, feeling the sunshine on my skin, looking out in my tiny garden or on the terrace of the British Library, reading lots and thinking about things and being present. Being. Being me. Breathing, being, breathing. Phew.

hanging on in


art, survivors and disability politics

CN: PTSD, RTS, physical illness/damage following abuse, SJWs disability fails


Eleanor of Knit Nottingham asked for Diversity is our Strength to be in the huge window for a month for LGBTQ Pride, and I was really happy to have it on show again. This time I made posters of the quotes I used in ‘open and shut’ as Brexit had just shocked everyone I know, and I’m pleased I did that. The piece drew a lot of comment and appreciation from passers by as well as the many customers and browsers at Knit Nottingham. However I was disappointed by the lack of response from a lot of activist friends in my wider acquaintance circle, very few made the effort to go and see the piece, even though it was on for a month.


[image: Sam helping hang the giant DNA spiralling coils and pompoms of DIOS]

Art is a really valid form of protest and being told it was unimportant compared to an event 3 minutes walk away for an ablebodied person went down very badly! It made me question how deep their understanding is of the effort that it takes to be politically active and creative as a professional level artist when you are disabled by chronic pain and fatigue. Disabled artists are regularly overlooked because our CVs seem thin – finding an accessible venue is very hard, getting the art in often even harder, and that’s assuming you could wrangle the resources of energy and capability to make any art, and manage brain fog so the art has good resolution and a powerful presence. As the piece occupied the huge window recess of Knit Nottingham, you didn’t even have to go inside to get an excellent view, and with the weather being so good the door was propped open most of the time so the posters were easily seen by taking one step inside.



The lack of response from supposed-to-be-allies has made me very disappointed again about the way disability issues are ignored overall by otherwise aware people, and by contrast the appreciation and support from Survivors Collective has been so valuable. I found myself silenced in a way that shocked me, I thought I was past being unable to speak up for myself or my art… but betrayal by allies is a really bad trigger for any survivor and I am no exception. The first therapist I ever saw couldn’t cope with the fact I wanted to work on my mother’s collusion more than the perpetrator’s actions… and shortened my sessions to 20 minutes and then cancelled them. Tyneside Rape Crisis later interviewed me to get evidence to dismiss her, but never apologised and crucially refused to waive the waiting list time for me to see a different therapist… talk about bruised! I was left paying for my own cab home [a significant cost at the time] in the dark, having been told they didn’t need me anymore and no, they didn’t see it as appropriate to support me in any way. I barely slept for a week with the huge waves of adrenalin from the fear, anger and hurt. It took me years to trust a therapist after that, and I still have no assumption of support from feminists or professionals [it’s a bit hard to disentangle from the aftermath of being raped by a doctor with the professionals, but there is some residue directly from the RCC fail.]

Why have I shared that story? Because when allies let me down, that is what is triggered – the feeling that even the politically aware will use me for their own ends and then abandon me when I’m no longer useful. Somehow the disabled and very particularly survivors are seen as people to at best pay lip service to, but at worst [Anonymous, I’m looking at you here] to be told to get out of the way so others can organise protests on our behalf, that we can’t attend because they are inaccessible due to noise/ violent or triggering speech/ lack speakers with awareness of the need to maintain empowerment levels/ in places without seats etc etc. Any request I made about access to the Nottingham 2014 anti-ATOS protest was met with horribly triggering speech telling me to ‘get over it’ – kind of aligning themselves with Iain Duncan Smith in my view – and in the end only intervention from a local Anon ‘leader’ calling the dogs off left me any space to make a NVDA family and disabled friendly protest space possible. Macho politicos are definitely not respected by the intersectional activists I prefer, but to my shock and hurt, the same dismissal of the importance of what I was doing prevailed. A very dear friend told me she hadn’t realised how much her lack of interest would matter ‘personally’ to me and she would remember in future.  Her personal support was very welcome, but left a gap, a place still not met, this is bigger, there is a political choice in the work, a creative act that aligns disability with the other divergences from the nonexistent ‘norm’… and where is the understanding audience of allies? Where was the support that understands and accepts art [with political quotes on photo posters even IS political] and deserves not to be dismissed as apolitical when giving reasons why visiting sometime over 5 weeks isn’t possible, or even important. It has taken me weeks to climb out of the feeling that the piece simply wasn’t good enough… [though how people who never saw it would know that??] and if Survivors hadn’t contacted me to request having it on show next year having seen a couple of photos online, it would have been much worse. Their instant grasp of the politics and the sheer exuberant beauty of the piece really, really helped.

A discussion with them has then led to an exciting return to a piece I laid down a few years ago, Cradle for Stones, the respect and esteem from the Collective leading to a surge of energy for finishing it – knowing an audience exists for it makes a huge difference to how I feel working on it. It’s about complex PTSD, the layers upon layers that multiple incidents cause, the patterns, the keloid scarring, but also, the pearls, the friction that creates a beautiful, lustrous jewel. Crucially it’s about how all this coexists, that being a mature survivor with years of recovery doesn’t mean that the days of raw pain stop, it means you have tools and experience and can self soothe and cope. The extent of what you’re coping with varies enormously. Being a longterm survivor means there is very often a history of damage to the body, in ways those not affected can’t imagine.


I can feel the taboos rising, how much do I share? Taboos for my own protection, but also others, the many, many others. We are all individuals, we have different scars, different areas we are bent out of shape. But also we share conditions that the professions rarely connect – yes PTSD, but fibromyalgia and the other chronic fatigue illnesses can be [Lyme’s] from a tick bite, but can more commonly be Adrenal Fatigue Syndrome.. from all the adrenalin of those recurring nightmares, panic attacks and constant anxiety. Often people are hospitalised for mental illnesses when they can’t cope, but Mental Health units are so poorly funded they are now mainly about dispensing psychiatric drugs, and very little therapeutic support is offered. Equally directly connected is self harm in the form of cutting, but abuse of alcohol, drugs and disordered eating are widespread responses. Back pain is often connected to childhood abuse, damage from broken bones sometimes untreated, likewise deafness and other head injury consequences. Damage to anus and vulva is a very taboo subject, damage to the brain is becoming easier to acknowledge – no, we’re not delusional and making false accusations, but yes our histories mean that our brain chemistry and structure were affected, and brain scans can show that, when the complexity of a survivor’s response lights up a scan where a simple/ untriggered response is very localised.  There’s so much more, STIs, unwanted pregnancy, HIV, but that’s as much as I can bear to write, and will have been far more than many can read.



To live with any or all of those symptoms and conditions is unfair enough. To make art with them is very draining, and needs careful pacing. There are lots of artists with chronic physical or mental illnesses or a disability facing that challenge of wanting to raise issues and start a dialogue or open some doors, making art that is demanding to make and difficult to explain, very hard to arrange showing for. To then be ignored when we make art about anything really, but particularly about diversity, inclusion, intersectionality… hmm, that’s a failure of politics, a loading of priorities that ignores our perspective, our lived experience of constant exclusion. ‘Nothing about us without us’, but nothing about us without allies either, surely? And when we’re talking broader politics, then nothing without us, because we are a vital part of humanity too.

link to ‘Peace, the 100th Heart’ at Nottingham Friends Meeting House

To be a survivor and make art is  a gathering of energy, abilities and intention and definitely an act of speaking truth to power. Our allies need to acknowledge that. There is a privilege in being unaware of daily pain, of mental struggle to stay active against the odds. Dismissing our artwork as apolitical is a thin spiky end of a wedge that leads to all the deaths when our disability benefits or medical services are withdrawn. Showing support for a disabled artist is as important as being at a vigil, on a march, attending a meeting. The difference support can make extends much further than most people think – a gallery may look harder at its access for visitors and artists, a piece of work may go viral and bring an argument in Parliament to tipping point… but also a door may open in an ally’s head, the clunk-click of intersectional politics being the only way forward may fall into place. We are an important part of our communities, we intersect with every other intersection, why are we and our insights optional, add-on extras, to be fitted in only when convenient?



saying thank you



Like most of you, I have been following the news from Calais and Lesvos with great gratitude to those brave volunteers who are out there helping. They know what they are giving up in the moment, but I find myself worried at what they may be storing up… PTSD is horrible, and I’ve been suffering with it for over 30 years now. I saw activists being kicked down a spiral staircase to the cellars at a blockaded conference centre by the West German police and 2 other women joined me in smashing the double glazed window, showering glass all over the stairs. I’m a follower of NVDA, non-violent direct action and even careful about property, so it had actually been an accident, we were beating a rhythm on the window, saw the glass moving and stopped – which caused it to shatter…Later the [activist] guy on the stairs told me how scary it had been facing being kicked down and how after the glass showered down the police had to pick their own way…and stopped beating the guys up until they were in the cellar 😦 A week later he was still seeing the stairs in flashes and nursing a broken thumb, nose, and 2 broken ribs. 10 years later I was still seeing and ‘feeling’ the policemen with guns pressing us in on each other in our human chain. I still can’t cope with loud shouting, crowds, and men with guns.. I have a lot of other reasons to have PTSD, but this is the closest to what I fear for the brave volunteers, doing good but acquiring unwanted memories which will haunt for years, helping people, but also pulling dead bodies from the water, burying babies..seeing French police teargas people already traumatized before they even set off on the escape to ‘safety’ as they’d hoped and deserved…




Last week Worldwide Tribe mentioned on their Facebook page how useful sewing machines would be. Now I have a midarm /semi-industrial sewing machine that I got in a sale, got a donation towards from a friend making a professional commission and have used for a couple of quilts, see the Lakelight Quilt slideshow [button on top right] and then haven’t even been able to lift, never mind use it for 2 years… So I’ve contacted the Tribe and luckily they can collect it 🙂 I’m so happy about this!



And then it struck me, ooh, a chance to get a quilt to the volunteers without diverting from refugee support… so this last weekend I have been working hard and got the quilt top pinned to a fleece back by a friend [thanks Onni!] so now I can take the quilting slowly – hopefully!

At 1.5m/5′ square I can manage it on my ordinary machine, 20 minutes at a time…DSC_0097

Thinking about what has comforted me most in my journey with PTSD, being outside in nature, by the sea or moving water for choice, gardening, colour and art, spring have all played their part, knowing that someone cares, and wants to help… So I got out the spring/ crocus coloured fabrics I won on eBay a couple of weeks ago, and set to 🙂 My corners don’t meet cos my squares turned into oblongs somewhere along the way, but I doubt this will be a problem…being washable does, so a fleece backing and no wadding means it’s cosy without being too heavy for a machine.



Comfort quilts are traditionally given to victims of crime, the bereaved.. but I think the same principle applies, a sense of how the world works, that it ought to be more fair than it is, is what gets broken when trauma is induced. When there isn’t enough acknowledgement of how one has been affected and feelings are pushed down to keep going… that’s when trauma becomes PTSD… so that someone cared enough to make a quilt for the volunteers may strike them as odd, it’s the refugees who need help…but maybe somewhere that seed of care and love has been sown, that their needs should be acknowledged too, that I am grateful for what they are giving, and hundreds more send love with it…




Heart truths

“The root of the word courage  is cor – the Latin word for heart.  In one of its earliest forms, the word courage had a very different definition than it does today. Courage originally meant ‘To speak one’s mind by telling all one’s heart.’ Over time, this definition has changed, and, today, courage is more synonymous with being heroic. Heroics is important and we certainly need heroes, but I think we’ve lost touch with the idea that speaking honestly and openly about who we are, about what we’re feeling, and about our experiences (good and bad) is the definition of courage. Heroics is often about putting our life on the line. Ordinary courage is about putting our vulnerability on the line. In today’s world, that’s pretty extraordinary.” -Dr. Brene Brown

TRIGGER WARNINGS: Discussion of hate speech, hate acts, internet abuse, bullying and oppression, sexual abuse, violence of most kinds.

Apology to dyslexics, I hardly ever post this many words with no photos, and the backdrop gets really hard for this much reading 😦

I was on BBC Radio Nottingham on National protest against ATOS and the WCA [work capability assessment] Day (Feb 19th). After being taunted by a Tory MP that I was “to be congratulated on my ability to organize the local protest and perhaps I had a future in Events Planning?” I responded by explaining what an experienced organizer I had been before becoming ill and now doubly disabled, and then I heard myself say: “This is a shadow of what I’ve done, I’m a shadow of who I used to be.”

And that went very deep for me.

In so many ways I am more than I used to be, so many less too…but this expression that all the colour had drained out of me…ouch! That hurt!

Since becoming interested in being part of the Nottingham protest I have had to endure a lot of trolling, betrayal, backstabbing and mean-mindedness. I find hate speech ineffective and alienating, and some levels of it are triggering for me, and I know, many others. As I choose my facebook contacts pretty carefully, I’d always been able to avoid a lot. Now I am able to ‘unfriend’ people and pages I have been struggling with, I can feel the relief.

I find it disturbing how demeaning speech is insidiously becoming acceptable in campaigning, and is promoted by many anarchist groups. I have become a target to be discredited because I objected to swastikas and Nazi imagery on posters, gory images and what I consider to be sexualising  and rape culture speech – I really can’t figure out how to tell you the terms I mean without saying them and risking triggering lots of other survivors, and I don’t want to do that…

Suffice it to say that when I was accused of “playing the victim” and needed to pull myself together, stop being offended by words and be a survivor who tackled the ‘real thing’…I found myself furious, as an ex-campaigner who has done a ton of awareness raising work, and also deeply sad.

This was from a survivor saying they were fine with the term and so was everyone else. Where is their connection to their authentic self? Where is the permission to be vulnerable AND effective?

Don’t worry, I did point out I existed despite them trying to negate me! And I know, even if I was the only one, it would be wrong. I have done that work. I can be vulnerable AND effective. But how is it to be around people who lack respect for that? Triggering, wounding, unsafe, draining. Greyness. Shadowed.

Language matters. Language opens and closes doors. I write how I like on my blog, but I use ‘crystal mark/simple English as much as I can when campaigning. Language creates permission and gives presence and frames of reference within which we examine what we want to build and how we want to build it. How does a person who has been abused rebuild and keep their respect when terms of abuse are used to humiliate? Non-physical but pointed insults attacking the right to acceptance and pride in sexuality, race, gender self-definition, difference of ability, choice of work, whatever the bully chooses to demean, these all create spaces where respect for the person is blurred. And once that has gone, then abuse is possible and condoned, and protected from reporting by the targeted individual or groups.

Thus the rise in use of terms relating to sexual abuse is very worrying, survivors of violence (whether random or targeted) and sexual abuse, bullying, hate crimes and hate speech are definitely a majority in industrialised countries. And yet survivors of abuse are not respected the way we need to be.

Remembering intersectionality, these circles of oppression overlap and isolate, with vocational and financial opportunity offsetting for some, but further disadvantaging others. Class is now becoming a really tangled issue  with the complication of working and unemployed members of each class holding very different experiences of how these systems oppress them : a wealthy Hindu family who work in skilled manual trades, but who have no idea how desperate a sanctioned disabled but originally middle class white person in dispute with the Department of Work and Pensions might be…And a victim of abuse in the wealthy family might still be at greater suicide risk than the person enduring sanctions, if they are very sure they will win their appeal (eg ex solicitor, knows the loophole to argue).

It’s so complex – but so simple: anyone, anywhere deserves to be treated with respect. And if they are being oppressive, their mind will not be changed by being insulted, it will have to relax to let new information in.

The great Audre Lorde said it best:

“For the master’s tools will never dismantle the master’s house. They may allow us to temporarily beat him at his own game, but they will never enable us to bring about genuine change. Racism and homophobia are real conditions of all our lives in this place and time. I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives here. See whose face it wears. Then the personal as the political can begin to illuminate all our choices.”

My response to all that has happened and all I feel is to create a space where inclusive, creative, compassionate campaigning can take place without hate speech.

So I have! 😉


An unfortunate truth  is I have to be prepared to check out every contact seeking to join the new group, and proofread every post/comment for at least the first month. I know from friends how draining being an admin of a Facebook group is, I now know how grey I feel after reading pages of hate pretending to be effective invitations to people to change their minds, hearts and actions. I want to be colourful again! I don’t want arguments! Spits dummy on floor!

But I have to honour my hurt, and the truth that if I want a disabled- friendly, non ‘hating’ group where anyone can rely on finding a peaceful, positive, constructive place to create small acts of protest, kindness and change…then it will take that. The shadow will shorten as a particular group of activists loses interest, the burden is already lightened by finding so many amazing things to post, my personal page has long been a relay point for loads of inspiration 🙂 Any of you who read Sustainable Man will know how many brilliant initiatives are out there.

I have called it anyone everywhere inspired by this wonderful quote from Martin Luther King:

“Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny.

and also to reinforce the reasoning behind my refusal to bow down to the bullies: as a disabled person, I have the right to be allowed safe space at a protest about disability benefits. Many people require safe spaces to be able to make our positive and valuable contributions. We are not weak, we are strong when we declare we will work in positive ways, refusing to be divided against the others oppressed by the systems in power. Being inclusive matters, honouring ourselves, staying focused on being the change we want to see matters … speaking our heart truths… being vulnerable AND effective