Sometimes the reason chronically ill people retreat inward, is to hide all the positive things happening to others, so that they don’t feel overwhelmed by the negativity that incurs from within them:
Frustration at no longer being able to do those things
Anger that peers gain more experience and you do not
Jealously and resentment that you aren’t thought of for those things
Sadness that their life is bubbling with excitement and activity whilst yours is stagnant and dull
Fear that you will never be seen as relevant or worthy ever again
I still get those emotions. But I have enough resilience to not let them become the sole occupants within me. I’ve had to become ever more self aware, and as such it’s tiring on another level, as I navigate life analysing and quantifying my reactions to situations and the people who are making decisions around me.
You know what, there are times when self-pity exists in abundance, but I wonder, who wouldn’t experience it when faced with similar obstacles in their path to self-realisation. Our resilience has to become stronger as we face necessary rejection and more difficult hurdles to navigate. Constantly changing goal posts, constantly changing journeys, constantly facing hostile situations. It is tiring, and I’d rather that I didn’t have to.
But every time I witness friends and colleagues continue on journeys that flourish and seemingly avoid the obstacles I have faced, I must remind myself to be genuinely happy for their victories, to experience my 5 negative emotions for sure, but to allow positive emotions to dance with difficult partners and give them encouragement and find a different meaning from within. Your journey is no longer parallel with mine, and I do miss it, but with any grief I have to learn to put it away in a box. A box that I label accordingly – a memory I can return to with fondness; an event I do not want to experience again; a time that has given me insight and shaped who I have become.
I need to have faith in myself, and that my worth has not been vanquished by a permanent illness, it has merely been displaced. Imagine if you will a worth as a beetle, important and with clear direction, but a falling rock narrowly missed the beetle. It scuttles away just in time, but sadly the worth it was adhering too is no longer there, but it hasn’t lost it forever, where it stands now, a whole new purpose and meaning is offered. The beetle can look at that rock and feel angry at its destruction of the path it was on, the blackness engulfing its sights. Or it can look to where it is now and bask in the new opportunities open to it. Beetle don’t feel bleak, your journey is still worthy, it’s just taking a detour and possibly a brand new direction.
13th-19th May 2019 is mental health week – the theme is body image, my body has been shaped by age, illness and disability. When I look in the mirror I see a different person to who I was – I compare myself to myself, but as a beetle I am on a different path now, my body carries me, it continues to work despite the lesions, it’s finding ways to preserve my life, I can’t fault it for that. I guess I now see my body much differently than I did before – I don’t want or need your judgement and demands, now it is mine to champion.
I have at times, throughout my time as an artist, been accused of never having people or humanity in my photographs, and not showing any life around me. Humanity is not just people, humanity is what encompasses us. The way we interact with our environments, the reason things are where they are, the way they are. Do we know the stories of the strangers in photographs? Not always, people watching in a perfectly composed shot, we invent their stories and use them for our own narrative. I could say that those photographs have no humanity. The story of my photographs are very introspective, the essence of my humanity, they are what I see and what I obsess upon. Then there is the story of how and why they became, and I obsess beyond the image – how things got there, why are they there, social history, natural history, our impact upon the world.
When I was at university studying my degree, when viewing photographs we read into them, we researched our subject, and discovered in the brief artist statement what the photographers intention was, but there is not always provided, the in depth analysis of each individual photograph, not in the way that we apply to them. The reasons why they chose that photo fits and bends with our narrative. Reading the artist statement is an important necessity, or we are free to manipulate the image to mean something else, or create a dialogue that isn’t true.
The signs, the signified and the signifiers. What we see is this. A tennis ball sitting on the grass. That is the signifier, the form which the object takes. It tells us nothing unless we place meaning upon it. The signified is the interpretation, the what and why we place upon the image we are looking at. So that tennis ball, why is it there, where has it come from, who was the owner, what does it say about the environment, what was the weather that day, when was it taken, who took a photo of it, why did they take a photo of it, what is the point of it… Without me giving any statement of why I took the image, the viewer is open to question, and can draw assumptions as to why the photo was taken and what it’s purpose is. Now, I share the image alongside other photos of tennis balls, or remnants of tennis balls. I have opened this up to so many more interpretations. Why is there a collection of images of tennis balls in various degrees of degradation? I welcome others to interpret in their own way and add reason as to what the intention behind taking the images is. But now I provide reason in my artist statement, so that changes the initial viewing and interpretation of the photos. This is my experience, and therefore the humanity in the image.
My experience of taking images comes very subconsciously initially. I seldom start with a plan of why and what. But I am very self-aware. I question why. There is more to the image than it just being there, there is very definite signs within the images I take. With the example of the tennis ball, my reason became obvious quickly. I kept seeing them everywhere after I had become parent to a pet dog, on our walks they are there, why are they there? After the big mower has come to cut down the grass, they multiply and clearly come into view, like worms after the rain. But it isn’t just the mower that destroys these tennis balls, it’s the dogs that through rambunctious play, tear and rip and break their beloved toy. I have spoken to dog walkers that tell me that the tennis ball is their pet pooch’s favourite toy, yet they lose and destroy them so easily, seems like careless ownership of a beloved toy to me. My dog would never lose his favourite toy, bury it under blankets perhaps, but never lose or destroy it in such a manner. Bizarrely my dog doesn’t like playing fetch and is completely nonplussed by a tennis ball. Maybe that is my fascination. I have no association of tennis ball destruction with my hound, so the tennis ball becomes my obsession.
My way of working begins, as I focus on something compulsively. I then ask myself why. And by asking myself why, I will begin to research and discover more about my environment and everything within it. There is also a the added caveat that I am now disabled, so my environment has shrunk. But shrinkage doesn’t mean I am now devoid of inspiration or subject. It means that I am now more invested in my environment, in it’s history, in my interaction with it, I am a slow walker, so I take my time, I revisit often.
There is plenty of humanity within my images, perhaps you have just not looked close enough to find it.
I recently attended a creative writing workshop taster session at Swarthmore Education Centre in Leeds, as part of an Arts and Minds Network event. This is the result of one of the exercises of free writing that we did. Based on the letter written by Robert Pirosh and sent to Hollywood film studios, we were asked to compose our own.
I never realised that when we given the topic of writing a letter of application based on ‘I like…’ with our own subject choice, that I would get so carried away with liking lists so much! I quite enjoyed the brief exercise, and maybe I should take up creative writing after all.
A screen reader version of the text can be found by clicking on the link here
Below is an audio version, where I am reading out the letter
I recorded this piece so you can hear how my thoughts sound as I write them down*.
Sometimes the silence is deafening. Nobody wants to talk about illness. Nobody wants to hear it.
That silence lives inside your head.
‘Where do I turn? How do I fix this? Why is it happening?’
I read the articles. I know the science. I can recite the words as why I have the pain, the fatigue, the inability to walk like I once did. I even know, that maybe I am more prone to demoralisation and depression because of this illness, it all makes perfect sense. Of course it makes sense, I’ve read the articles, they explained it to me.
But there is something more existential about feelings, and the realities of those feelings. Science explains why, my wanting to know why is fulfilled. But it is little comfort knowing why, when I cannot control my environment, or the people who inhabit it, affecting my actions and reactions. It is little help when I simply cannot control why I feel that way.
It’s a string of events – I want to go out and have fun, maybe visit a pub and have a few drinks, or go for a long walk in the country, perhaps visit an exhibition opening, or even attend a social gathering, with people I haven’t got to know properly yet. The desire to do these things is hampered by the inability to do these things. What is stopping me?! The list begins – the chairs are uncomfortable and cause me pain; the alcohol doesn’t work well with either my medication or my illness complications; the walking is too long and too hard; the exhibition is too far away; there is nobody to come with me; it’s too hot and my symptoms are worse; I am tired, I am broke, I am anxious about travel, I am disabled.
Soon, those people I spent time with, doing activities with, fade away. My support network dwindles. ‘How much longer can we spend going to her house, it’s a total non-event.’ That’s the silence in my head. It fills in the silence with conversations I haven’t had. It fills in the space with assumptions, imagined scenarios, filling in the silence with chattering, telling me why I have slipped from memory.
Where has this loneliness come from? My days have emptied. When there is less, because ability is blighted, those empty moments, they fill that silence with a booming explosion. The realisation that there is all that empty time. Plans to do, are now plans to not do. My empty days are spent watching films, TV serials, reading, sitting with my dog. Like an endless loop of the same. This isn’t how I planned to spend my time, there was never a ‘do not’ attached.
Advice is well meaning. But advice is seldom useful. Not when you know the science and the reasons, but cannot change the facts.
“Try not to isolate yourself”, they say. “Talk to your friends and family”, they say. “If you don’t have that support, build one”. Fair enough, seems reasonable. And far be it from me to be the naysayer, but here I go:
I am not trying to isolate myself – I want to do all the things, with all the people.
I do try to talk to my friends and family – they have hit mute. How much more can they listen to me, when my answer to ‘how are you?’, is the now difficult response of ‘not great, [insert current symptom] is bothering me’. We can handle acute, but chronic? ‘Why aren’t you better yet??’
Find new friends – I’d love to, but I can’t get out because I am isolated (see reasons above).
I have done what my doctor has suggested, I have learnt the science and suggested things to them myself, I have even read about the complimentary therapies that can assist, yet still this damn demyelination in my neck is mocking your advice to me. I thank you for your desire to make me that person you once loved and had fun with, I am certainly on the same page as you with that. But sometimes it is too much – it adds to my feeling of inadequacy, that I am not trying hard enough, it joins the chatter telling me you think I am lazy and just don’t want to get better, it makes me feel that I am a failure.
But! I am not a failure. I refuse to believe that not recovering from an incurable illness is my failure. My illness has created the problem, but it is not one I can fix alone. “As much as possible, continue doing the things you like to do”, I laugh to myself. I loved walking far, exploring new places, going on trips with friends. Now I walk a short length and explore the same space day after day, rarely with friends, often just me and my dog.
‘But you are so sad, we just don’t know how to deal with that”. I hear you, it must be quite hard to see a friend so miserable and diminished.
My hierarchy of needs has changed.
Thrill seeking is currently redundant. The basic needs of health, safety and companionship are now my priorities.
Here’s something you may not know. People don’t travel through life on a linear. And that very definitely applies to me now.
Desires: Then – holidays. Now – holidays. Difference: Then – the places I went, or wanted to go are frivolous, the only thing I had to worry about was how much money I had to spend getting there and being there. Now – is it far, is it comfortable, what’s the climate like, is there much walking, is it accessible, who will go with me, can I afford it…
Be more positive. Learn to be optimistic.
I have found plenty of models to achieve happiness and satisfaction. Here is one, with it’s catchy acronym – PERMA:
Positive Emotion. Feeling good, positive emotions, optimism, pleasure, and enjoyment.
Relationships. Social connections, love, intimacy, emotional and physical interaction.
Meaning. Having a purpose, finding a meaning in life.
Accomplishments. Ambition, realistic goals, important achievements, pride in yourself.
Now apply that to yourself. Apply it to people with more money. Apply it to people with less money. Apply it to people with large families or friendship groups. Apply it to people with few friends or less family. Apply it to people with impairments – physical, sensory, mental. See how they differ. Think about the time, energy, ability that some people need to get to a level of life satisfaction they desire, or even on your level. Remember, sometimes, what seems simple, easy, and achievable, may be difficult, hard, and seldom achievable.
I think we need to take time to listen. I mean really listen. We can give ourselves those self-affirmations. We can tell ourselves we are complete, we are our best selves. But we also need – not just desire, but need – to hear those affirmations and to give those affirmations to those we choose to be friends with, especially when their life satisfaction, their journey has altered. Don’t let the silence become deafening when you can’t see them. Reach out, even if you have since filled the void your full friendship once held. We all need to feel valued.
I don’t want to end this here. Pining after forgotten friends. Or expecting you to feel sorry for me.
Pity is not what I want. And I wager that most people in my situation are the same.
I want this. I have very good reason to feel demoralised. I am not going to be a quick fix or return to the previous version of myself. However, I do need to find my way to continue my journey through life, and it is going to be a bumpy ride. We never know when that journey we take, will take a diversion. Let’s talk about illness, it is scarier not speaking, not listening, and that silence can be deafening.
* Today, I have felt demoralised. My illness has taken my spirit and tried to crush it. It is hard having strength, when your strength is already being used overcoming obstacles everyday. But I will attest, know this, my spirit is stronger than I will ever let my illness be.
And I left my stumbles over the words as I read them. I found it hard to read this monologue, and it was several takes before I even felt I got it right. Like me, it’s not perfect.
It’s been almost a year since we last ventured into the Yorkshire countryside as Leeds Photography Excursions. In that year my health has deteriorated, causing me to have fatigue and reduced mobility (as just two of the symptoms), it has been both an interesting and frustrating year. Itchy feet wanted to take me away from Leeds and to explore another part of Yorkshire. The original destination was set to be Aysgarth, to find the waterfalls, but Storm Brian put a literal damper on that, so I called up my friend, who lives on a farm on the border of East Riding of Yorkshire and North Yorkshire, and we were all set to visit. We drove to Painsthorpe, and took to the country lanes to walk towards Thixendale, a tiny village and part of the Yorkshire Wolds. We visited the Robert Fuller Gallery on route, where I bought some lovely illustrated prints of the local wildlife. We finished our walk at the Thixendale Village Hall, for a cup of tea and slice of cake – although, I went off script and had a rather delicious red pepper and herb homemade bread. Normally I would’ve been all fired up ready to walk back, but by that point, I was really struggling, and the concrete boot I normally drag around with me had been lined with lead. We had the luxury of being picked up by my friends husband! It was a frustrating walk, and I hurt the following day, but I have missed the countryside, and the pain was worth it.
With illness, and the change in my walking, my movement has slowed. When I walk for a distance I am pained, every step becomes a struggle, it aches my back, my gait has changed as I move forward, swaying, dragging my foot, my legs working harder as I lift them higher. I am behind everyone, as they speed along chatting.
There are stories with every walk, Stop! wait for me, I am walking slower now. The wind, my dog doesn’t like the cold wind, he’s little and the freshness of the Yorkshire countryside is harsh.
The stories we tell as we walk. We remember the last time we were together, we remember things we have done since, we talk about places we haven’t been, and where we would like to go, we find out about the histories, look at the land, and learn about the neighbours, two miles away.
What’s in the picture? What was the feeling? What were the sounds, the noises that permeate the air? What were the smells?
With limited movement, I still find so much pleasure in being out walking, and slowing down, I have found my senses are heightened, I notice more. So although illness has kept me almost still, slowing down does not make me enjoy things less. My walking is my art, and this is something I really want to explore much more.
Do we see the same?
the same roads, the same horizons, the same skies, the same grass growing in fields, the same sheep, the same pheasants, the same fences, the same trees