Inspirations for The Two of Us, my monthly radio show

Other Lives, Personal Journey, Radio, Recommendations

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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. Have a listen. Enjoy and share the word.

 

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Living Differently- Making A Mess For No Reason

Living Differently Project, Personal Journey

I was all ready to write about transformation or some other lofty approach to the fact that I’ve been pretty much, but not exclusively, housebound for weeks and am entirely pissed off about it.  It won’t last for ever, it can’t. I’m getting so frustrated that I want to punch holes in the sky, uproot trees, fight all of nature, my hair a mess and me all snarly and unforgivable. All this time and so much living still to be done. I’m sick and tired of lessons, of patience, self-compassion and being kind and tender with myself. I’m bored of the hundred tiny gratitudes that I ‘m called upon to feel every day. I want to get my teeth in to something, and hard. This cloying exhaustion and obedience to the needs of my body has me broken and vexed in equal measure.

Well – that was until I started writing about it. I know I won’t shoo the feelings away just by penning a couple of paragraphs but it’s good to know that I still have some fight in me, even now. And it was a simple phrase that set me off in the right direction. Making a mess for no reason is what yoga teacher Frances Lewes advocates for those of us going through the perimenopause. She suggests that we create a personal sanctuary where you can put up a do not disturb sign. Not shared and not entered by anyone unless invited. Space to moan and groan and rest and maybe when the energy comes, to be creative and make a mess for no reason. 

It wasn’t by design or choice but that’s what I’ve been given here. A small space all my own to create a riot in. As a close friend suggested the other day when I told her how overcome I was with tiredness and the feelings that came with it, ‘let it rage’ she said. And although I’d rather be working up a dirty sweat, getting muddy whatever way I can, I’m here in my cave making bite marks in everything. Just know that when you come to find me I may not be smiling and pretty but the remaining debris will be something even Kali would envy.

Thursday

Living Differently – The Nowhere

Living Differently Project, Personal Journey

It’s six in the morning and I have had one of those broken nights where only the promise that nothing lasts forever keeps me going, not even this sleepless night. Upstairs the neighbours are partying, their laughter coming in waves. Then silence. And then the music, dancing and more laughter. It seems fitting that I am beneath all the celebration and joy overhead. Much like watching a loud plane break a clear sky with its flight and wondering where the passengers are going. A means of escape feels very distant to me right now. Being sick for a long time can feel like living underground, a life in the shadows where one is painfully aware of what is happening on the surface in the world above.

Two weeks ago a miracle happened – I felt well enough to go out in the evening for two nights in a row. I met friends, some of whom I had not seen since before getting ill, and I looked and felt like a healthy person. It was the taste of freedom and the echo from my previous life that I crave constantly. However I was not out of the woods yet. A week ago I developed more new painful symptoms and a mysterious infection which medication just won’t budge and have been bedbound ever since. I have been chomping painkillers like chocolates but they don’t touch the sides. I am very afraid.

The constant trauma of being ill long-term means that each new symptom, each new facet of illness brings with it terrifying waves of anxiety. The questions swirl around my head will I get worse ? why is it happening ? when will this pain leave me ? what can I do to make it end ? As the panic escalates the answers are torturous – It will get worse, you will die a painful and lengthy death and there is nothing you can do.

The truth is I do not know what will happen. But even not knowing the outcome of my current state and that anything could happen, good as well as bad, gives me no comfort. I want to know. I want to know now that it will all be OK. Being present to feeling in the wilderness just heightens my fear.

Fear is a gateway to truth, if only we can listen to it. I am indebted to one writer who has helped me on my journey – this blog post by the esteemed Tara Brach sheds light on what we can do in such trying times. We can soften, we can let the grief and the terror have its place and we can feel the love and tenderness that is available to us. We can love ourselves.

It would be an exaggeration to say that I am experiencing the peace Tara talks about. However I do have a map and at least I know I am not alone. How many people at this hour feel the pain of not knowing the outcome or live with the prospect of a cruel future ? Millions to be sure. How many of us, when faced with the truth of our own mortality buckle ? To collapse when confronted with the harsh reality of our short time here, the fragility of flesh and bone, is an understandable response.

There’s more. Now I know my feeling scared is human I can look further. One thing that illness has not taken from me is my inquisitive nature. I always want to know what the next question is, what else there is to learn. If I allow my starting point to be my legitimised fear and if I can be tender to myself in these moments I can then look behind the fear and see what it’s preventing me from seeing.

At first it’s grief. Oceans of tears for so much loss – beginning with all that I have lost since my illness began and then bleeding out like an inkblot to all losses, past, present and future. That hurts so much I can hardly continue my exploration. The fear rises again but something tells me to continue on my path.

Fear has stripped away every line of defence I thought I had. I am exhausted, sad and defeated. But wait – even as I write this, sick and tired as I am – I see myself as totally lost , stranded in a vast nowhere and very alone. This is it. The party people are listening to Stevie Wonder, how could I resent them their good taste ? I am alone in the wilderness listening to “You Are The Sunshine Of My Life” through the floorboards and a slight smile crosses my face. Another thought – what happens if, just for a moment, I loosen my grip and stand back and just observe.

Locating that I do and have always felt lost, estranged even in my own body, gives me some calm at last. I can say with certainty that I have never felt at home in the world. This truth brings tears of relief and quietens the fearsome chatter in my head.

This is where I am. I am nowhere. I do not know why this shocking revelation gives me comfort but it does. For a brief moment I touch my own nothingness. And I feel almost OK. If I keep touching the truth of the nowhere and the nothingness then the fear eases.

I can hear more talking upstairs. Someone has a lot to say, and loudly. And me ? I am in the cradle of this vast unknown space. I am held by the stars.

Living Differently – Making it Better

Living Differently Project, Personal Journey

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Despite all my protestations of self-enquiry I’m not that unusual, I want to feel better rather than worse, to see change happening without having to break my back doing it. Well, I say that but is it true ? If there’s one thing this lengthy illness has taught me is that I am not the person I say I am, even to myself.

My old friend Kitty sent me a photo taken decades ago in a photobooth. She remarked how carefree we look. I’ve scrutinised my gaze seeing if I could find clues of a future me. Nothing, except my hair is much the same and I’m a little anxious, as ever. What stings of course is not how young we look but how carefree. Of course this is the order of things and the luckiest amongst us get to have at least some taste of freedom in their childhood. But I keep asking myself what happened, where has that open-ness gone ?

Chronic illness is a rattlebag of unwanted and much needed lessons. I say unwanted because I would much rather be happy without having to try and this sickness squeezes the juice of gratitude from you. Because, in the end, being thankful is the only way to live. Bitterness is not an option but I am drawn to its magnetic pull frequently.

Over the last 18 months I’ve played different mind games with myself. Distraction is not the preserve of those who are ill, but it is for those who are suffering. Better not to feel the pain than feel it, it can all get too much at times. And distraction, even for the mostly housebound like myself, can take many tempting forms from watching light-hearted entertainment to being online for hours, from obsessing over personal relationships to close companionship. It is not always a bad thing and sometimes it’s a life-saver.

Sometimes the distraction is enough.

Living Differently – Terror in the Body

Living Differently Project, Personal Journey, Photography

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This is a photograph I took a few months ago of my bed. The title, ‘Home’, will hopefully mean something to the thousands like me who live with chronic illness and spend a lot of time housebound. The idea for this blog has been floating around my head for some time but I was reluctant to put finger to keyboard and write it. So much of my conversations these days seem to begin with the phrase ‘since becoming ill…’ and if I was bored by this opening gambit I could pretty much be assured that others would be too.

I have a variety of diagnoses – Lyme Disease, Chronic Fatigue/M.E and Ehlers-Danlos Syndrome. On top of that I have lived with depression in varying degrees most of my adult life. Looking at this comely list I immediately sink in to shame. Although I know it’s not my fault that this has happened to me I cannot help feeling I have been invaded by positive thinking body snatchers and should just pull myself together. Needless to say I would never judge others this harshly but there it is, the protestant work ethic leaking in to my daily thoughts and the idea that if I just tried harder I could magic myself well.

Thankfully I have learnt a number of techniques to counteract this tsunami of self-blame, one of the most helpful being a beginner’s mindfulness. Even if it is for moments only I investigate my feelings thoroughly, where (if anywhere) they are located in my body and try to find words to describe the sensations. At that moment I become both the observer and the observed and it can give me a fleeting sense of freedom. But what really works is having a continuing creative process and, as I have written elsewhere on this blog, photography has been a bigger help than I could have ever imagined when I very first picked up a camera as a teenager.

2012 was a tough year.