We are delighted to present the fourth of our five SMHAF commissions on the theme My Experience of Isolation.
Feral Mother is a writer living with chronic illness who unexpectedly found her mental health and sense of isolation improving during the coronavirus crisis, despite the fact that her physical health has not improved and life continued to be extremely challenging.
Her commissioned piece, A Journey Into Irony, is an enhanced narrative - part written, hyperlinked with video journal, poetry and song – that explores the reasons for this change in her mental health, after dealing with regular bouts of depression, feeling suicidal and suffering severe isolation due to the impact of dealing with a severely limiting chronic illness.
Chapters 1 and 2 of A Journey Into Irony are available below, chapter 3 is now available here.
An Enhanced Narrative created for the Scottish Mental Health Arts Festival 2020. A Journey into Irony is dedicated to my mother.
Chapter One: Warning Shot.
Nearly four years ago I suffered a relapse of an undiagnosed medical condition I did not know I had and I got very sick. I now lived with a severely limiting chronic illness. I had to give up my career, the majority of my interests and activities and was generally housebound or bedbound. Due to the impact of this on my life, I had been slipping in and out of clinical depression over that time and at points had not wanted to live. I had also suffered isolation so deeply that it was a physical pain that I lived with daily.
Now here we were in a global pandemic and life was really tough. Nearly everyone globally was affected, a truly historic time and I watched with horror as the death toll mounted and whole countries were shut down and people were confined to their homes in country-wide lockdowns. Schools, businesses, shops, airports, everything was halted in a way which seemed unimaginable even in the face of the climate crisis we were facing, though this will devastate the world much more than this pandemic.
To me it felt like a deadly warning shot across the bows of the Earth, ricocheting and echoing through the eery quiet that had descended on us to try to make us listen and change the way we were living our lives, and I was trying to hear its warning. Every day I woke with adrenaline coursing through me to let me know that I was in danger. Globally we seemed to be pausing to take stock as the days rolled on as we looked out into the world through windows.
Collaboration film of poem by Feral Mother, called Warning Shot.
With a compromised immune system and other underlying medical conditions, it seemed that I was more susceptible to getting the virus severely than others and I was very afraid about that so I had been trying to prepare to shield myself from it, as those particularly at risk were asked to do, but that was not easy. I lived with a teenage son who had been at school and liked to be outdoors with friends and my husband was a key worker and my carer; both of them were now potential risks to me getting the virus. I could not cope physically or mentally without my husband but I also could not protect myself from the virus with him in the house. I was stunned and angry by the lack of assistance that was given to people in my position, despite being directed to shield ourselves. We tried to prepare as best we could but we could not find a way to do this whilst keeping us all together.
Retrospective Journal musings by Feral Mother on Shielding at the beginning of the pandemic.
So, we made the decision that my husband had to move out. He is the love of my life, my best friend, my carer and my central support, so being without him did not go well. Understatement.
But here was the very strange thing.
Since January, I had not been clinically depressed and the ache of isolation had gone as the lockdown had set in. Furthermore, my feelings of not wanting to live at times have been replaced with a deep and urgent desire to preserve my life. Yet I was still physically and mentally overwhelmed, still sick, housebound, generally alone and disabled. A globally difficult time was descending on all of us and my husband was not here to help me through it. Life was still unrelentingly shit, yet my mental health and sense of isolation appeared to have improved.
SO, WHAT THE HELL WAS GOING ON?
Many people globally seemed to be feeling the exact opposite, their mental health was collapsing and their sense of loneliness was crippling them. Why did it feel so different to me? In the midst of this pandemic something was happening to me as an individual that I did not understand and made no sense and I wanted to journey into it creatively to find out what was at the root of it. I called this creative exploration A Journey into Irony because, let's face it, this weird freak of an anomaly in amongst all this craziness was, to me, the definition of irony. I honestly did not know what I would take out of the box when I examined it and discovered the dimensions to this conundrum but I was beginning to form some initial ideas.
Journal musings on isolation by Feral Mother.
These initial ideas made me realise that this journey into irony was very likely to take me into the heart of the lived experience of the disabled and the chronically sick during this time whilst also shedding an illuminating light on how bad things were for us as a community before all this. So, I set out to discover what I could. I was scared but determined to hold onto hope as I opened the box to delve inside to see what I could find.
Song/photo film, Journey/Out of the Boxes by Feral Mother.
Chapter 2: LightHouse
As I moved further in time into my new ironic landscape of having better mental health and feeling more connected to others when many globally seemed to be finding their inner world collapsing and their sense of isolation growing, I found myself able to begin to pull out mounting ideas as to why I felt this way from the box I had delved into.
I was able to begin to grasp strands of entangled colours from the mess of my thoughts and could follow the thread of them to untwist understanding from the jumble. Slowly, I built a rainbow of reasons from this, each shade distinct yet merging into my growing comprehension about what was going on in me which illuminated my understanding in a spectrum of light. This shone from me like a beam from a lighthouse across this sea we had all been tossed into, showing me where the rocks were, and gave me the strength for what this life was bringing to me.
Song, The Sea by Feral Mother.
Red – Danger
I do not think I truly grasped in the beginning just how the terror of this event was affecting me. I saw this pandemic from a distance, way before it seemed others took notice of it and their ignorance and the government's apparent priority to the economy, and disregard I felt they were showing to the prospect of potential loss of life, made me utterly panic. It made me feel truly expendable.
I lived from early February onwards in a heightened state of fear with hormones pushed through veins every waking hour as my mind and body tried to prepare me constantly for a threat to my survival. I went on for weeks and weeks without respite being driven by a biological fear imperative to get myself safe, and the fact it was so difficult to create an atmosphere where I could do that affected me deeply. However, the ways some of this fear affected me came with surprisingly positive consequences.
Before the pandemic, I was either clinically depressed or close to it for a number of years and many of my hormone levels, especially those which affected wellbeing and mood, did not seem to be running efficiently. The mass influx of increasing levels of things like serotonin, adrenaline, dopamine etc in my blood because of the biological fear response I was experiencing seemed to give me a sustained burst of these natural chemicals and I believe it helped improve my mental state. It seemed as if the fear was working like an anti-depressant.
This was, in itself, a bit of an irony because my body chose not to initiate a heightened production of hormones when I was feeling like I did not want to live anymore in recent years, which also was an imminent threat to my survival, so it seemed kind of weird that it chose to now. Especially as, in truth at the beginning of lockdown, I did not feel I valued my life that much but my perspective was rapidly changing on that as I watched the pandemic unfold across the world.
As lockdown progressed, I became acutely aware of the value of my life even with the restrictions I lived within because of my health. I also truly came to grasp the distinct difference between taking your own life and having your life taken from you without your consent as I saw people all over the world having their lives ripped from them in the most traumatic of ways and this difference came to matter deeply to me.
This fear also helped me cope with the loss of my husband from the house because I had been so afraid of catching the virus from him before he left that it was actually a relief initially to have him leave, even with the terrible consequences it bought me as I tried to manage physically and mentally without my carer.
However, my chronic illness is specifically linked to and affected by how my cells function and to energy production and whilst I am able to create a sustained fear response in my body biologically like any other person, even for an extended period, this does have severe consequences for me. There is always a point where asking my body to do more than the cells can handle has serious repercussions. That became an increasing issue during lockdown. I spent a lot of days significantly unwell because of the impact of this, and bed bound which is not helpful when you need to protect and look after yourself and a teenager. My husband cooked a freezer of food before leaving but, even with this, there were many days of not coping. Plus, there was a longer term payback for the increased energy I used at the beginning of lockdown which hit me when my hormones returned to normal as I gradually acclimatised to the pandemic. It could not have picked a worse time when this impact finally struck in the middle of lockdown because of the events which unfolded then.
Orange and yellow- Meaning and purpose.
I lived for nearly four years before this pandemic in lockdown because of my physical health. A lot of this was spent bed-bound or house-bound. I had to give up a full-time job which had a lot of purpose attached to it. I had many things I had also loved to do. I had been a gigging musician, I used to make custom clothing and furniture from recycled materials, I was politically active, I was a mother to two offspring, and a wife. I had loved to dance and take walks and go in the sea. I loved to be with people. I wrote poetry, stories and songs and read extensively. These things defined me. The ability to do these things reduced substantially when I got sick. Often, I could not do them at all.
Who are you and what is your purpose when you can do hardly any of the things that matter to you anymore? This is a recurrent theme in my health community. We speak of it often. What is your purpose if you can only lie in a bed all day? If you can do 10% of what you used to and need substantial care? Are you still a dancer if you cannot dance? How do you contribute to the world? Do you still have the same worth if you cannot do things in the way you used to when the world seems to revolve around what you do and not who you are? And who do you become when you used to define yourself by what you did?
Before I was in this situation I would have said everyone’s worth is the same no matter what they contribute but I have really struggled to feel the truth of that since getting sick and I have grieved the apparent loss of meaning and purpose in my life very profoundly. It has been so hard to redefine myself within the physical and mental limitations I have now and I am nowhere near done with accepting that as my new reality, even years in to it.
Yet now, even when bed-bound on sickest days, I found I was saving lives. This strange change to my purpose in life affected me significantly though I still wish that none of us were in this situation.
Journal Musings on Purpose by Feral Mother.
Green and blue- freedom and living in the moment.
Whilst the lockdown brought many restrictions to people, I found myself less affected by these because I rarely left the house anyway. I did miss my occasional social visits and trips to the beach and wood but I often had to forgo those trips for weeks and sometimes months, so I was acclimatised to postponing things. I already had a ready-made online social world and did not have to construct one. In fact, I was teaching others how to build one. Even so, I was surprised to find that I felt freer as lockdown descended and at first I could not pinpoint why, then it hit me, this sense of freedom was relief that I knew that for at least three months I did not have to deal with the benefit system.
Another irony to many in my health community is that the thing which is supposed to support us has instead traumatised many of us so much that there was a sense of freedom at the prospect of escaping the pressure of it, even if briefly and even if the reason for this was a global pandemic. How have we got to this place, that I felt this way, and what does this say about how our society treats those who require benefit support? I know I was not alone in feeling this relief. Others, also reliant on government help, were also glad to be free of interviews and sanctions and being penalised when they have done nothing wrong, and the pressure of always having to prove and justify the support they were entitled to over and over again so that it felt more like a punishment than assistance you were entitled to receive.
I felt ashamed to admit it but alongside feeling huge upset that so many people were having to make claims for assistance and were financially impacted because of the pandemic, I also felt additional relief to know that there were more of us claiming because I knew that with this came a possibility that this might cause a revolution in the way people receiving benefits were perceived and treated by both the government and the public. I just could not see these new claimants accepting what we had to swallow for so long. I felt their new voices, added to ours, might actually be heard and the standard practices of assessments and reviews and penalties would surely have to be softened in light of the sheer numbers of people affected and this in general might improve things for all of us.
I felt empathy and advocacy was often something which had seemed to be lacking since I had been in the system, allowing the government, in my opinion, to treat people in ways which were not appropriate or fair and had caused, in my experience, huge harm, especially to those that were sick and disabled. Vulnerable people had already, it seemed, needlessly died because of the way this system operated and the way it affected those forced to use it yet even their deaths did not seem to be enough to change things. So, knowing this, I tried not to feel guilty for hoping so many new people using the system would instigate change and I hoped people would understand how desperate I must have felt to find myself relieved by this, whatever the tragic reason behind it.
I was also feeling freer because I was experiencing independence for the first time in years. I had needed the assistance of my husband as a carer since I relapsed with my chronic illness. The loss of self-esteem and confidence this had caused had been extreme, almost transforming me into a different person. I had long felt a burden to him and I had become very afraid of coping without him. I honestly did not think it was possible and although I did have a teenager in the house with me in lockdown I did not know if we could manage in the house with just the two of us. That also terrified me when my husband left. But I discovered that even on the days we didn’t cope, which were many and awful, we did survive. Was it safe, was it healthy, would others describe it as coping? Absolutely not but each day came and we got to the end of it alive. I felt on the one hand like I was living in utter chaos and was tumbling from one catastrophe to another, and on the other more alive than I had since I got sick. Home schooling amounted to asking my son if he had done anything and having to trust his answer. Bringing shopping in put me in bed for a day. Many things just did not happen, sometimes this even included sorting out food but we were muddling through it. Life was happening. I knew it was not going to be something I could do forever, each day bought me closer to something having to change. However, even though I still needed my husband as much as ever and was desperately struggling without him, I also felt like I was gaining in confidence and strength.
Alongside this independence I found that the effort it was taking to manage made it impossible to do anything other than live in the moment. This was a skill I had been trying to master since I got sick as veterans of being chronically ill told me it helped you accept your new reality but I was never good at it. I was always thinking of the past and grieving my loss of ability or wanting future health which was out of reach. Now, I found myself too scared to cope with thinking of the road ahead and too exhausted and preoccupied with now to think of the past or anything but surviving that second. I was grounded squarely in now and doing so was like bringing a microscope in to look at the moment I was living in to appreciate the beauty of it. The tiny world I felt I had been reduced to before the pandemic, which had always seemed so lacking to me and full of grief, suddenly seemed to swell and feel enough and it mattered to me to be allowed to keep it. I realised that my life did matter and I wanted to live it, however restricted it was and regardless of how sick I became.
My garden took on an importance it had never had. My husband came to it and this is where we saw each other a few times a week. He and it became linked in my mind and even when he left I felt his presence still there which comforted me because his aura had begun to fade from the house. He placed his care for me and his frustration and not being with us into that garden, building and planting things in it to make my life bearable and it was all bursting into life. I felt actual joy being in it even through the fear and challenges I was in. Joy was such an alien feeling that I almost did not know what it was when I first sat flooded in it. The tulips and bluebells especially, planted by the previous owner, dragged me into their presence and captivated me for hours as I sat exhausted, often feeling very unwell, just examining their petals.
Journal Musings, The Garden, By Feral Mother.
Indigo & Violet - My Husband, Family and friends.
The microscope also magnified those I loved and who loved me and I felt this enlarged their presence in my life. I think many of us were feeling this globally. So many of us were pausing to realign our priorities and to remember what really mattered and the importance of friends and family was thrust once again into our visons which had seemed blurred for a long time.
I had lost many friends since getting sick. Their worlds carrying on in the bustle of life whilst mine was stuck in limbo and I was left behind. The loss of them and the isolation I had to live within had been overwhelming to the point it had made me not want to live at times. Yet, I was loved by wonderful people who somehow got lost in the debris of all my illness took from me and churned into the grief and pain of clinical depression.
In lockdown they were excavated, brushed off and their value overtook the panorama of my life, filling it to become enough. These people, who are the structure of a lighthouse to me, kept me able to stand in the ferocious seas which had battered me, and they became illuminated in the rainbow of all I was uncovering during lockdown. I even began to see the previously invisible ultraviolet spectrum of them again in my life. I think clinical depression can often shroud people’s ability to fully realise or feel their loved ones and I think being released from that had also helped me to grasp their importance again. I found myself wanting to thank them. I had a song I had written for my best friend many years ago back when I was well. I used it to make a film to thank them.
LightHouse. Words, music by Feral Mother. Guitar by Guy, Vocals by Holly Ebony, Trumpet by Ian Pettit.
Surfer image by Bryony Voyzey. Lighthouse images by Mary McNeil.
My son especially came into focus as we lived each day in Lockdown. Even when he was at his most annoying, which was an everyday growing reality, I found myself more connected to him as we were locked together. His presence was vital to helping me cope. Even the way he refused to acknowledge my limitations, a previous cause of intense grief for me. He often threw moods because he had to do something he didn’t want to and felt I should do instead. My disability was not, to him, a good enough reason to excuse me of it. This strangely made me feel more normal when previously it had really upset me.
He did take on more jobs though to help me eventually. He even fixed the hoover, taking it apart when I wasn’t looking and when it went back together it worked better than it had when we first got it. He shocked us both with that and he changed in front of me into a young man.
We talked more. Random conversations mostly, about how he thought life was a really a digital simulation in an alternative reality, discussing the many and varied reasons for why he shouldn’t have to do chores. He was also fixated on what he could eat that day but in amongst it I realise he was checking on the global situation, had opinions of global government strategy in the pandemic and he went out of his way to remain connected to his friends. It was also really clear that he did truly care about his family, something which you can begin to doubt with teenagers at times and he did do school work independently. I know that work may have been far from what his teachers would have wanted but I honestly had not expected him to be able to do it without my intervention and I grew increasingly proud of him for that effort.
My daughter also took to contacting me every day to try to close the gap of the hundreds of miles between us. Her digital presence was like a daily embrace as we both tried to pull each other closer. We realised we were the closest of friends, choosing each other above our blood connection as comrades to seek out in this time. My little band of online friends from my health community, many of whom I have never met in person, became even more precious and valid to me. Their courage as they were thrust into impossible situations themselves in this crisis making me admire them even more as we battled together to find a way to manage. People I had not heard from for a while also had more time to talk and be in contact. More people started using the online modes of communication I used so that I was speaking to more people than normal, not less. I began to be able to access live online classes or performances of music and comedy which I would normally be excluded from.
There is an idea in the disabled community called The Social Mode of Disability, which states that a lot of disability is caused by how society is structured and not by the physical or mental limitations a person might have. It is society often which makes someone disabled therefore and if you change those structure their disability can be removed. For instance, if all buildings were wheelchair accessible then access would not be an issue for disabled people. I really began to feel this theory in practice as the things I could access online changed and people began to connect more. It really highlighted just how bad things had been for me before the pandemic and how I was disabled and isolated by the way society was set up and not necessarily by my chronic illness.
Then, in amongst it all, there was my husband. His absence expanding my love for him. Even apart we were inseparable. Having a loved one as a carer can change the dynamic, even in the most resilient and loving of couples. There was a dependency which I had not enjoyed and have grieved about since getting so unwell. It had compounded my sense of isolation and deepened my depression. Somehow this all slipped away when we placed a physical distance between us. We became as we once were. Just two people in love and missing one another. I felt more whole to love him. More myself. He could not care for me in the same way and somehow this reasserted a dynamic between us that felt more equal. I was scared that being away from me would make us disconnect, make him realise the ease he could live in if not with me but he did not feel that. He took to reading a book to me on a video app which he would record and leave for me to pick up when I could. I would lie and listen to his voice. He used to read to me when we were first together. It pulled me back to that time and reminded me of why I fell in love to begin with. I wrote him a poem as a way to thank him for reading to me and to help us connect. I recited it to him one night.
Poem, dedicated to my husband. We Know Love. Film made using private communication I sent him of the poem during lockdown whilst separated for ten weeks.
Of course, this only made me miss him more and as the weeks progressed my fear of getting the virus was overtaken by my need to be with him again. This coincided with my fear response finally beginning to recede so that the energy boost I had felt from that began to fade and my physical and mental struggle mounted to an impossible level.
At the same time my mother went into hospital and she later died of pneumonia and this event drastically affected the journey into irony that I had begun.