During Mental Health Awareness Week I would like to share some previous interviews from my podcast and Reel Rebels Radio show The Two of Us where I talk to writer and artists about their work and how it relates to mental health. If you enjoy the show why not subscribe on your favourite podcast app.
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Inspirations for The Two of Us, my monthly radio show
Some years ago I had my very first radio show ‘The Conversational’ on Reel Rebels Radio. I became ill in 2011 with Lyme Disease and the unrelenting fatigue meant that I could no longer continue with the monthly show. A great deal has happened in the years since. I’m still unwell but I’ve become more accustomed to it. It would be a lie to say that I’ve either learnt the fine (and impossible) art of pacing or that I’ve reached a state of acceptance.
Two things have made a massive difference to my day to day living. Firstly I’ve plucked up the courage to call myself an artist and not wince when I say it. And secondly I’ve discovered podcasts. These two statements are connected. I can’t say for sure whether my artistic ability has improved, although I’m confident in saying it hasn’t got any worse. However my relationship to my work has shifted. I’m more interested in personal story than ever and more recently (the one I love and bed) have found ways to integrate my photography, writing and interview, for example Whoever Was Using This Bed .
Being ill for such a long time has intensified my contemplative nature. My love of podcasts has a direct link to my social isolation. On better days I go for what I call a local ‘photo potter’ a camera in hand, headphones hon listening to On Being,Made of Human, Invisbilia or whatever I've carefully downloaded and curated before I began my walk. Story telling and story listening (whether in words or images) have become an integral part of my life in the last 7 years. Chronic illness brings with it a number of emotional hurdles. Lyme has gifted me with high end anxiety as a near constant companion. I first experienced depression after my parents divorced when I was 11 and it’s been a part of my life ever since. Luckily the treatments I’m having seem to keep it under control, that is until I have a flare and I can spend months housebound and often to bed.
Even though I live with depression and anxiety I believe I have a great capacity for joy. One of my greatest pleasures is found in human connection and satisfying my endlessly inquisitive nature. I never know quite where I get my ideas from. It rarely feels like I’ve made something up myself and more that it plonks itself at my feet and I’d be a fool to ignore it. As my love for podcasts began to develop I knew that I had a real craving to do another radio show. I just wasn’t sure what. I was clear about one thing - unlike my other show where I had two or three guests a show - now I wanted to explore the long form interview and have just one guest.
Two of my favourite, albeit somewhat gruelling, podcasts are Terrible, Thanks for Asking and The Hilarious World of Depression. The latter began as interviews with stand up comedians but has now expanded to other performers. Inspired by both of these shows I decided to talk to writers and from all disciplines about their experience and the result was The Two of Us, aired on Reel Rebels Radio.
Writing is home for me. I think you’ll find the writers here, Joelle Taylor Miriam Nash and S K Perry incredibly articulate and generous about their own mental health journeys. I decided to focus on both mental health AND emotional well being as I believe it’s like the flickering of a candle flame and most of us move from one to the other and back again throughout our lives.
I’m also interested in lived experience and intersectionality. Mental health doesn’t exist in a vacuum, it cannot. I wanted to create my own mini mental health awareness campaign and to include exuberance, survival and complexity. The three guests that have appeared so far have been fearless in their honesty and shared breathtaking work.
Re Issue - Rothko's Silence
Rothko's Silence
We flinch from it, want more images
to flick across the surface. Instead
a blur of slate grey diluted
to a white penumbra with a shot
of turps, or how the oranges
in my fruit bowl sing at their skin
mentioned on a canvas. A hive
of assistants worked with him,
hands moving at a conjurer's speed.
Each painted layer a shared meditation.
One restaurant bought his painterly
autograph, so that diners, lips full
of conversation could sit at ear height,
chewing on carpaccio, sharing the maroon.
Rothko gave the money back, his paintings
later earning millions. A sum he'd never know.
He died at his own hand, his blood
a signature in a 8 x 8 room, deadened
and dense with pills, deep cuts
across his wrists, left his children
fatherless, led us where wordless colours
rule the accuracy of silence
he talked about.
Living Differently - Who Cares ? by Will Hames
I invited my friend Will Hames to write about his experience as a full-time carer for his wife who has M.E. Here's what he wrote :
You start looking after somebody because you care. It’s a feeling, an emotion, and in the beginning all the work you do is driven by love. For me, several years down the line, the word “caring” has taken on a different complexion all together. It’s not something I feel any more, rather it’s something I force myself to do because ceasing to do it is unthinkable.
There are still many moments of tenderness, but they are heavily outnumbered by flashes of irritation from both of us and long periods of mind-numbing tedium. Minor inconveniences which I would formerly have taken in my stride and rated unworthy of even a mention assume ridiculous proportions now.
She used to be an actress, full of bounce and bright ideas, before M.E. started to creep up on her. I used to have a well-paid job that involved frequent foreign travel and a lot of intellectual challenge. We both worked hard, expecting to keep our careers on a steady upward path, not knowing that we had already peaked and the only way was down. When I started to fall asleep at my desk, my mind blank with fatigue from nights spent helping her keep afloat physically and emotionally, the end was inevitable.
As my wife’s world has shrunk to the space within four walls, so has mine, and but for the fact that I have the very occasional opportunity to go out for a few hours as a comedy poet, my entire contact with the outside world (apart from a little banter with local shop staff) would be via Facebook and our doctor’s surgery.
There is a haphazard, arbitrary quality to our existence these days, with the need for regular medication as the only really consistent element in any of it. Outsiders see the state of our lives and wonder why I, as the stronger partner, don’t insist on imposing some proper structure on our days. It sounds weak and flabby to say that my patient calls all the shots according to how she is feeling from moment to moment, but that’s the fact. Sleep patterns? What are they?
As carer, it is down to me to make all the concessions and compromises: to fight with an invalid would make me a tyrant and a bully, so I allow myself to be tyrannised and bullied because I am - supposedly - big enough to take it.
But that’s just my own situation. Talking to other carers has shown me that there is a whole spectrum of power/dependency balances out there. Some people whom I might be tempted to envy because their patients are docile and biddable, envy me for having a patient who knows her own mind and can articulate her needs.
All the same, there are some common elements. For a start, neither invalid nor carer will have volunteered or had training for their respective positions. Both parties would rather be doing something else.
And neither one can look hopefully towards the future, particularly in respect of the question, “Which one of us will go first?” A carer without anybody to care for is in a better position than a suddenly-lone invalid, but at least the invalid has some claim to consideration from the rest of the world. The ex-carer has no status at all, and if he has spent decades going quietly stir-crazy in a role that is no longer relevant, his chances of fitting back into the world productively are pretty slim. Nevertheless, I hope I’ll be the one who survives, for her sake and for the sake of our children.
Every once in a while, somebody will remind me that I’m doing a valuable job, on duty 24/7 and saving the welfare system oodles of money (at least, while we still have a welfare system to speak of), but these reminders do not come nearly as often as the slurs and persecutions aimed at the disabled and people like me, who make a “life choice” to stay at home, ostensibly unemployed.
My wife draws benefits because she is unable to work for a living. I also survive on those benefits because, although I am perfectly capable of holding down a job, I can’t go looking for one. If a Daily Mail reader came to our house, he would probably label us both as benefit scroungers the moment he walked through the door.
We have a big, flat-screen TV. That says it all.
Will Hames has been a carer for more than twenty years. He keeps his spirits up by writing silly poetry. Every once in a while, he says something wise, but he insists on being careful not to make a habit of it.
Living Differently - Naturally Stable, by guest blogger Jocake
I have been meaning to write a post for months now for the 'Living Differently' series, a project where I explore life with chronic illness. My head is a bit of a tangle and I'm very much in that part of the process where all that glorious chaos just has to be how it is for now. Since becoming ill I've met a number of pretty exceptional people. One of them is my dear friend Jocake. Jocake is funny, wise and has the rare ability of true kindness and understanding. Below is a note she posted on Facebook. I found it so moving and so necessary that I asked if I could repost it here on my blog.
"I was thinking yesterday about strength, and how it is seen in our society, and how we are trained to see it, and ourselves. We are, as we all know, shown images all day of what strength, achievement and beauty looks like: an unachievable for most, if not all, 'perfect life' where financial security, family, house, career and looks are all in place and providing us with happiness. Having just turned 40 myself i have recently experienced a deluge of emotional and mental tyrants in my head, telling me what about me isn't beautiful, isn't strong, hasn't achieved, just because I'm 40 and in the life circumstances i am in. It lead me to think about how illness is portrayed in modern culture, and how the people with illness are seen, and my actual experience in meeting these people and being close to them.
It's clear to me that people with illnesses are seen as weak, or glorified as fighters. Much as I have huge respect for those who are disabled and in the Olympics, advertising still encourages that model of strength where you have to over come something and achieve something great to be seen as strong, strength is not seen in being physically or emotionally vulnerable.
Now amongst my close friends I know at least 8 people or more who have been dealing with a long-term boring annoying debilitating illness, and of course i too have been ill for 17 years. It fluctuates, irritates, bores, exasperates and debilitates us. But what I have not seen, in any of these people, is weakness.
In my experience, being ill for 17 years is fascinating. There is a quality I see in myself, and in others in this position, that is tangible. I think people with illnesses like M.E can be seen as draining, victims, sad,'brought it upon themselves, weak. But when I'm with these people I see a whole different story. They are all funny, good company, incredibly compassionate, bright, have a huge care for the world at large, creative, insightful, bloody good fun, positive, and they have this quality that I can't put my finger on. I think what it is a connection with the true strength in all human beings that they have had to find due to their circumstances.
When you are stripped for years from the very things you are told will provide you with happiness where do you turn? When you can't have children, work to create financial stability, use your strengths gifts and talents and build a career, then where do you go to feel ok? This is what I see in all the people I know who are dealing with long-term health issues, a humility, a deep strength that is bendable and allows for all states, what shines through them is this: the essence of life itself.
This essence of life is what i see shining through all humans. It's in every one of us, life. Life is naturally stable, beautiful, and has already achieved life therefore is stable and happy as it is. This is what we are all made of, but we are not encouraged to look to it and seek its natural validity. Illness pushes you to this, and this is what i see shining through all my friends who are faced with everything you cant avoid.
It is a redefining of strength for me. Strength, beauty, achievement is in the gentle strong shining of life through each human being. You cannot avoid your strength, your beauty, your natural ability, your gifts strengths and talents, your stability. It is you, as you, always."
Living Differently - Intimacy
Living with long term health issues affects everything we do. And this includes the most intimate aspects of our day to day living. I talked to some close friends about how illness had impacted on their sex lives. People were very generous in their responses. I've changed the names of the interviewees due to the sensitivity of the subject matter.
Sam is in a long term relationship.
"Our relationship started before I became ill and we have been together many years, the majority of which I have been unwell. It has changed so much in terms of what we can do as a couple and what we can enjoy together. It is hard to be spontanous or find anything new or different to do and we really just spend time quietly together at home, with the occasional trip out for a couple of hours. I think generally we are a strong unit and have adapted quite well to this way of life, but it does cause extra pressure and responsibilty on my partner and I don't like seeing the effects of that stress. My partner was very understanding and supportive from day one, despite our relationship being relatively new at the time there was no hesitation in taking me and the illness on, though neither of us had any idea it would be such a permanent feature in our future lives.
I live with my partner. This has huge benefits for me in terms of having company when I need it and being cared for. It can be hard seeing how much their life has to change and be limited to accomodate my needs. I find it helps to be cared for and loved by a partner, rather than living with a parent. I feel less childlike in my needs and more equal and appreciated for what I bring and offer to the relationship.
It has changed our sexual relationship a lot, as before I got ill and early on when I was less severely affected, we had a great sex life. This got harder and harder to fit around my illness and we started to plan it so that I could rest in the days before and after, but it took a lot out of me and caused me a lot of muscular pain and exhaustion. Over the years it has become less and less frequent until maybe a year or two ago each time we tried it, the act itself became too painful for me to continue past a certain point.
My partner is not happy to participate at all on the basis that we both do not both get the same amount of pleasure from it. I still experience myself as a sexual person and I am still grieving the loss of my ability to properly orgasm, which was something I enjoyed very regularly before. We are still physically close and are intimate, but I miss that intensity and giving my partner such pleasure very much. What closeness we do have is very comforting and loving and helps me so much in coping with my symptoms and daily reality. We laugh a lot together and that is so important to me.
I have heard disability campaigners try to challenge the idea that disabled people are not sexual and cannot have sex. They state that WE DO with much enthusiasm. I understand why (and I am a sexual being) but this still makes me feel excluded, as someone with a chronic and largely invisible illness who cannot have sex, from wider disability movement. My experience does not always fit with that of other disabled people or their aims/assertions, though I completely identify as disabled as my illness and fairly severe impairments seem permanent. Our experiences are so diverse and I hope that one day a more subtle and complex "disabled voice" that can emcompass all that will emerge."
Marie is single and has been living with chronic illness most of her adult life.
"I very much want to be a part of a family, to have somebody who's affectionate to me and loves me, somebody who wants to come home and tell me how their day has been and see what I've been doing, all those small things. On the other hand I'm basically asexual at the moment - I have no sex drive and my physical issues mean that having any type of sex would be a huge issue anyway so I'm really not motivated to do anything about the sex drive issue.
I was in a relationship for several years and there was some sexual activity but it wasn't frequent and we were very constrained in what we could do (and when) because of my low energy levels, my pain, etc. At the time my partner had a relatively low libido and was a very affectionate person so it wasn't a huge hardship for him from a sexual point of view. In the end the relationship didn't continue and my being sick was certainly a huge part of that, but I don't think the sexual stuff specifically was really much of a factor in the relationship ending.
I've been sick for basically all my adult life. When I got sick I was still a virgin, and although I have had periods of time where I've been sexual I think my illness has HUGELY affected my experiences of sexuality and how I see myself. I don't have any experiences of sex that don't include pain and fatigue and dealing afterwards with flare-ups of symptoms. I'm really quite happy now being asexual. I do masturbate occasionally but not very often, probably once a month at most. Most of the time I'm so sick that I really have no sex drive, no urge to masturbate or have sex.
I want physical affection, casual touches like when you're both in the kitchen and you put a hand on somebody's back as you brush past, hugs, curling up on the sofa with somebody's head on my shoulder or my head on their shoulder. I like other sensual pleasures too - gentle massage, cuddling my kitty, listening to glorious inspiring music, luckily I can access most of those without being in a relationship."
Lola is married and talks about the impact her illness has had on her relationship.
"We have been married almost 9 years. I am lucky that I have a supportive husband but I see the look in his eyes that sometimes he thinks I'm just lazy he has never said that but that is how I feel. We are still close and take the time together and cherish it.
It has affected our sex life greatly. Not that we used to have sex every single day but now it can be weeks. In my first marriage, my first husband died in a car accident, I never had to be the aggressive one but since my diagnosis I have to be and I'm not used to that. I don't feel sexy at all. I have lost about 10 pounds but I still feel awful about myself.
I would just like to add that even with supportive partners there are needs that we need met and maybe we need to start saying what those are. Since my diagnosis I feel the need to keep apologizing for everything including sex."
Keep Learning - an interview with photographer Rob Covell
Dzifa and I (under our collective title Word Migrants) had a great time hosting our book event, The Book Salon, last week featuring
Leila Segal, Gemma Weekes , Agnes Meadows, Rachel Rose Reid, Courttia Newland and singer/songwriter Marcus Begg whose photo you can see here.
It was taken by photographer Rob Covell whose portfolio is becoming increasingly impressive. I have really been enjoying Rob's live shots as well as his stunning photographs of his partner, writer and performer extraordinaire Kat Francois.
Having recently picked up the camera again (it's been just over a year since I have entered the digital realm busying myself with portraits and more) I asked Rob about what photography meant to him.
Art to me is a tool. I see art as a means to convey something. For me that is the most important part, not necessarily the art itself. Like true hip hop or poetry I like it when it teaches me, when it's revolutionary and empowers people. It still has to be good artistically, but if the message is missing or is hidden in too abstract a way, then it’s not easy to grab me.
Photography is the same. Yes, a beautiful landscape, nature pic or portrait will grab me. A gratuitous shot of suffering will not. If I’m taking a portrait, I would like the subject to look at the photo afterwards and feel empowered by it, that they see something beautiful about themselves that they hadn’t seen before.
A lot of discussion around photography understandably focuses on the image. I am very interested in the interaction between the photographer and the subject especially when it comes to more personal and meaningful relationships. Rob told me a little about the role taking pictures played in the relationship with his daughter.
I have a teenage daughter who has autism. I wondered if the relaxation I feel taking photos would help her, so I’ve started taking her out to parks and zoos, and just letting her loose with my camera. She loves nature and has told me how she too finds it relaxing. Photography totally de-stresses her.
So, what's next ?
I really want to get to a point where I can be semi-professional. I work as part of Zupakat Productions, run by Kat Francois and would like to develop the photography arm of that along with my own music production and writing. I’m working on some ideas for combining my three art forms. As with my writing, a main focus of my work will be to re-address euro centric perspectives and history.
As photographers, we have the ability to record the legacies of others, and I think that is a beautiful opportunity to create history that otherwise would go untold. I don’t want to specialise in one type of photography, there’s too much to see out there.
But what’s really next - Keep learning !
What are you doing ?
I was lucky enough to have a grant when I took my degree, which included having my fees paid for. My degree gave me vital skills which I have used throughout my working and creative life ever since. Luck is not a word I wish to use to describe what is in fact an essential. An educated population is a productive and happy one. The government's proposed economic measures will have ripples extending far further than just the lives of the students themselves. This film shows how students at SOAS have been prevented from their right to a peaceful protest. Please feel free to pass the information on so that when you ask yourself 'what am I doing?' you can answer with some assurance that you are doing something to oppose these terrible and unjust cuts.
[youtube=http://www.youtube.com/watch?v=vNVFp6Ggo60&fs=1&hl=en_US]
A Pint of Milk
It's my friend Salena who pointed out the irony that on Margaret Thatcher's 85th birthday the Chilean miner's are finally being rescued after their underground ordeal. Amongst other things Thatcher pretty much had it in for the miners and the trade union movement as a whole.
Here in the UK we are awaiting the announcement of some of the worst public service cuts in living history. Claire Rayner was a broadcaster, journalist and campaigner. A day before her recent death she announced that she wanted her last words to be "Tell David Cameron that if he screws up my beloved NHS I'll come back and bloody haunt him."
My friend, Georgiana Orwell, sent me this about the forthcoming cuts and it's sobering and vital reading. On October 3rd 2010 the Guardian headline was, 'Osbourne: cuts must be fast and deep to avoid a decade of debt.' The second paragraph read, 'the chancellor will announce that every Whitehall department will have its head office staff cut by a third, promise to give the armed forces the tools to finish the job, and dismiss Britain’s public service structure as designed for the 1950s'.
The final sentence made me feel numb. At the Fairness Commission meeting on Andover Estate it became evident that people within north Islington are surviving a political system. One pensioner John stated, 'today is September 7th, now that might not mean a lot to you, but it does to us, this is the day the blitz started and when we began fighting an enemy. Now the enemy is our own government and they want to wipe us out by wiping out the welfare state'. In light of what is about to happen, John had made a visionary if apocalyptic statement.
John went on to talk about how pensioners could not afford to shop in their local groceries for products such as milk because it was too expensive. Then there was the issue of rising fuel costs which according to Help the Aged is leading to many pensioners choosing not to heat their homes because they cannot afford it.
Yesterday I met an ex-neighbour, a pensioner who served during the war, his wife, since I last saw them, has had two hip operations, and he will soon have a knee operation leaving him immobile. He is anxious, because, as the only carer he will not be able to shop, drive or take care of her whilst his knee heals.
Daily living details such as these are significant. When elders cannot afford a pint of milk, cannot afford rising fuel costs, are afraid they cannot take care of themselves. My ex-neighbour looked disheveled and tired but he still kept up his cheery disposition. He is of the generation who did their bit. He and other pensioners served in the war, they built the public service system and surely they deserve much better then having their pensions taxed, cut or having to rely on handouts. Surely they ought to be able to afford to buy a pint of milk from their local grocery, heat their homes, and not feel afraid of being alone.
Many pensioners feel left out of the political debates now taking place, because they, unlike younger generations do not have easy access to the internet. Added to that are the issues of mobility and health, consequently many feel that their voices and their concerns are not central. It is important to remember that pensioners as much as the younger generation are our future.
Remember what John said, 'today is September 7th, now that might not mean a lot to you, but it does to us, this is the day the blitz started and when we began fighting an enemy. Now the enemy is our own government and they want to wipe us out by wiping out the welfare state'. Within that statement is a wealth of history, our history, the history of our parents and grandparents, and a sense of hope for a greater future for all.
What has happened to lead us here is the responsibility of consecutive governments. There are some bald facts; the banks have acted irresponsibly to the fortune of £850 billion pounds, again to the cost of tax payers, which prompted the Queen to ask why government didn't notice what was happening. Margaret Thatcher did her bit by killing trade unions and bringing in privatisation. A school in Islington had to pay £9,000 by a private company for a door to be fixed a job that ought to have cost £400.
According to Gordon Brown and Nick Clegg £150 billion worth of tax has disappeared at a cost to pensions. There are other facts but the word 'disappeared' isn't good enough when describing the mis-management of money. As a researcher I know that if they wanted to find out what happened to the money they would. Disappeared is not part of the vocabulary of smart men who are part of government. Disappeared is part of the vocabulary of dishonest smart men who are part of government.
And who will pay for the disappearing money act? Pensioners, nurses, teachers, fire-fighters, police to name a few of those who serve or who have served their communities and their country at a wage that doesn't match the bankers, politicians or celebrities but who carry out invaluable work. The political system is failing us all. The real meaning of the word politic, 'for the people' is lost on the new generation of careerists whose vision favours an American style system that has failed its citizens. It is shortsighted and apocalyptic.
The government is now far removed from the people, visiting communities only when there is an election. It's time to talk and listen to the people. At the Andover Estate meeting people had solid ideas which if put into action would create mass employment within new and expanding areas of industry. Those who live and work in their communities can best advise government on how to serve them.
Hubert H Humphrey stated, 'the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped'. Osbourne, before the cuts was described as a hawk with neo-con values who wanted to end the welfare system. In that knowledge does his arguments hold weight? It is time for some serious debates, abut government, the real cost of banking, those we vote into power, and the value of our vote and collective strike action. The welfare state was built over a number of years and it is about to be dismantled with the sweep of a pen and so too the lives of many.
What can we do? Join your local group. There are groups in every region. Begin protesting. We don't have to start protesting on the day Osbourne announces the cuts. We have to start protesting now.
Lobby your MP. Write to let her or him know that you vote no confidence in the new government.
Support the strikers. The tube strikes are happening to stop the loss of 800 jobs. As Londoners we cannot afford the loss of jobs. The loss will lead to more delays on travel routes that are already congested. Such cuts will lead to more problems and errors.
Post offices job losses. The privatisation of post-offices will mean varying regional prices for stamps. Rural areas will have a differing price to cities and the company will decide that price. The Royal Mail has been delivering mail efficiently for 150 years at the same cost to everyone. Privatisation will mean the loss of jobs and differing regional and area pricing.
NHS. Nurses and doctors are warning the government's scheme to massively change the health service is a risk to the future of the NHS. They've called the plans "slash and burn" and said they're a "£80bn gamble with no evidence base or electoral mandate". The government hopes it will be able to slip these plans through on the quiet.
When government and politics has failed us, and politicians are a part of the problem, striking is a tool that illustrates to government the power of the people. Striking gives us a voice and reminds government that they are in power to serve the people. It is a legitimate and peaceful form of political action.
With that in mind start your own strike. The only power government admires and fears is economic power. Each person that has used the NHS, has gone to school, has had help from the fire-services, the police, or any public service body about to be cut, support them by going on strike.
The poet in me sees the Chilean miner's endurance and rescue as a metaphor, in both political and emotional terms. Men stood together in solidarity underground and then finally reached the surface to come home at last.