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.
Chapter 3 of A Journey Into Irony is available below, you can view chapters 1 and 2 here.
An Enhanced Narrative created for the Scottish Mental Health Arts Festival 2020. A Journey into Irony is dedicated to my mother.
Chapter Three: Gone
My mum died on the 29th May 2020 in the afternoon. She had been in hospital since the 1st May. She had gone into hospital a number of times in the last few years, sometimes for extended periods as she had a number of underlying health conditions. She was identified in the pandemic as being on the most at risk list, so I knew that a hospital admission was going to be particularly dangerous for her and I had been dreading her needing to go in.
They tested her for Covid-19 on admission. It was negative which was not a surprise as she had been rigorously shielding and had not left the house. Still, the hospital were treating her as potentially a Covid-19 patient, despite this negative test and she was being barrier nursed in a separate room because of her symptoms. There were other confirmed virus patients on the ward and I was very concerned about the risks of cross infection to her.
Initially she improved through the treatment she received and I felt hopeful she might be out in a few days. However, after a while of being in, the respiratory issues she had got steadily worse and the chest infection she went in with began to be described as pneumonia. We asked for her to be retested for the virus but the hospital would not do it. They said it would make no difference to her care because they were already treating her as a high risk of having Covid-19 anyway so there was no point in subjecting her to another test. I felt very uncomfortable about that and really wanted to be sure that she was still clear of it, especially in light of the way she had deteriorated.
She was getting much worse when I spoke to her, more muddled as her breathing declined. The hospital reassured me she was stable, sometimes they told me she was improving. She did not think so. She sent me texts telling me she would soon be dead. These were deeply distressing when I was so far away. I told her not to worry. I told her what the doctors said to reassure her. I do not think she believed me. Turns out she was right not to. I wished I had used those conversations to say the final things I should have to her instead, whilst she was still strong enough to communicate.
Whilst all this went on, she was generally alone, apart from the staff. Visitors were mostly not allowed except for rare exceptions. I was truly grateful for the care and support she received from the hospital who tried their best to care for her but it was hard to endure these restrictions as my brother and I became spectators to her isolation from a distance. I saw her often in my mind’s eyes, shrunken and small in a hospital bed or in the chair beside it, alone and the thought of that crippled my heart. I tried not to think how she must be feeling about it because it was too painful.
Often, we were left to view her only through the eyes of the nurses or doctors we spoke to as she became too weak to speak or communicate with us. It was so hard to get a clear view from that to know how she truly was or to feel we could reach her.
My days became bound up with this contact with the hospital, trying to get through both to her or to the staff. Countless times I could not get to speak to anyone, my days punctuated with the next try. It was an incredible strain on my energy which quickly made me very unwell. Everything else in my life became affected by the impact of what was happening with her. It pulled like a cord at everything in my life so that it came under tension which strangled my ability to cope more and more the sicker she became.
So, like the grinding to a halt of an engine, there came a day when I could no longer look after myself or manage even in the ram shackled way I had been and I entered a new phase of being incapable, without assistance, of functioning. My husband, who was living apart from me so I could shield, entered the house in a mask and gloves and just had to take over, despite the risks.
I still had not become clinically depressed again however, even at this time. The reason for this was completely confusing to me but my journey into the irony of improved mental health and lessening isolation in the pandemic was halted despite all the things which were improvements still being in existence. They just were not enough to mitigate the impact of my mum dying. It engulfed everything.
Journal entry discussing the isolation of my mother and myself in the days before her death
A week before her death the doctors went from saying she was stable or improving to suddenly admitting she was going to die. Immediately they spoke of discharging her.
I spoke to her then. It had been a while since I had been able to speak directly to her. She was very weak. She found it hard to speak. The doctor who had told me she would die held the phone because she could not hold it. We did not speak of her death though we both had been told it was coming. Instead we spoke of how we loved each other. I also told her I had been given an arts commission and that I would dedicate it to her. This seemed to please and comfort her. The conversation was a good one but it also felt like goodbye. I cried a lot when I came off the phone. We did not communicate directly again. She died a week later.
At many points through this time I thought of jumping in the car and getting my husband to drive me to her. I could possibly have been allowed into the hospital if I could have got there but it meant breaking lockdown regulations in 2 countries to make the journey. It was very likely that we would have been turned back at some point in the 9 hour drive. It also meant risking catching the virus myself by entering the hospital and the travelling making me sicker. I was already very unwell.
Then there was the possibility to consider that we could be a risk to others if we went because my husband was a key worker who was regularly exposed to the potential of catching the virus. I wrestled deeply inside myself over all these conflicting arguments and emotions many times before deciding finally that I just couldn’t go.
It was a bitter choice.
That decision was made as the Dominic Cummings scandal was breaking. This incident was an additional torrent of pain to me at that time which took the legs of my soul from under me.
The rage over the way the pandemic had been handled by the government had been building in me since the beginning. I had felt that the way it was being managed, especially initially, had really seemed to me to prioritise the economy over human lives. I was particularly upset by how the elderly, the disabled and other vulnerable groups had been impacted and I had hated the way people’s lives had become bound into the data of daily death tolls. These anonymous figures seemed to erase the three-dimensional aspects of who these people were and how much they mattered to those that loved them.
There were also many others, not even mentioned, whose lives were being dramatically impacted by being connected to what was happening and now one of those was my mum. She was a special person to so many people, a mother, a wife, a nanny, a beloved relative and friend, full of soul. A whole person we knew and loved, dragged into this situation. This bought everything into sharp and desperate focus.
So, seeing the Cummings scandal unfold alongside the pain of how this was all impacting my mum was unbearable and utterly beyond my understanding. This event seemed to lead as well, to many breaking lockdown rules themselves, thronging to beaches and beauty spots whilst many others complained about how their rights were being restricted unnecessarily. I watched them all behaving like this as my mum died in isolation with neither of her children beside her because we chose to keep to the Lockdown rules at the greatest of costs to us all. It made me want to scream till every breath had left my body into their faces,
“WHAT ARE YOU DOING?
HOW DARE YOU DISREGARD LIFE LIKE THIS.
JUST LOOK AT HER.
LOOK AT US.
I felt so angry that I wanted to drag every one of them to her hospital bed to see her there without us. I cannot explain the pain of it to those people or to anyone but the fury I feel about this has remained. I guess that was because this fury became bound into my love and loss of her. Somehow though, I have just had to hold it, stuffing it into whatever space was left inside me alongside the grief, with the trauma of it still churning in the molten core of me.
Just Don’t, by Feral Mother
I spoke to the discharge nurse. She seemed to be wanting us to decide on mum’s final destination that day. She was pushing me to let them send her to a nursing home because the NHS could not cover the cost of 24 hour care if she went home, which is what mum wanted. They still would not retest her for Covid-19 to make sure she did not have it despite the fact they wanted to discharge her into a home with other vulnerable residents or to her home to her husband, a man in his 90’s, even though the virus was rampant and out of control in many nursing homes at this time, killing thousands of people, which was often instigated by patients being discharged from hospitals without being tested.
If I agreed to this, the hospital could not reassure me that the care home would allow visitors, even her husband to say goodbye to her. It was likely that no one who loved her would be with her when she died. They would not let us choose the place she would be discharged to and we could not know its Covid-19 status. This made me distraught. I simply could not bear to think of her dying without any loved ones, let alone help it to happen to her. Things got heated. Both the nurse and I ended up in tears, pushed by the pandemic into a conversation neither of us ever imagined we would need to have. I told her I was sorry for any upset but I had to advocate for my mum. I could not allow them to send her to a home under those circumstances, though in truth I could not stop them. In the end however, she died before they could discharge her.
When she died the hospital called close friends to bring in her husband, to be with her. She did not die alone. A comfort I cannot fully express which holds me calmly still as I struggle with the grief of her death, which was peaceful in the end. I will always be grateful for this mercy.
My mum died without her children though and we also could not attend the funeral and nor could many others who loved her. I knew that had this event happened in normal times that the church would have been full because she was very loved. I made a film of pictures of her life to represent me instead as my contribution. I was then charged unexpectedly to show it; around £50 for a 4 minute film. All of this was deeply distressing to me. Not only could I and others not go, I was being charged money to include the only representation I could make at the ceremony. A kind person stepped in to pay it and many others offered to as well. These acts of care helped ease the salt grinding inside me.
Instead, at the time of the funeral, I went to the beach. It was the second time I had been out of my house since the Lockdown began. I felt giddy to be out, even in such circumstances. A reverend friend of mine did a bespoke service just for me and my family. Another friend helped my husband gain access safely, with the landowner’s permission, to a beach. The day was stormy and it rained as we tried to light the fire. The wind blew all the matches out. I thought it was going to be a wash out but then the rain stopped and the fire lit and the flames blazed up.
The service my friend did for me was beautiful, honest and began the path I hoped would lead to healing. It took the imperfect day and the circumstances and made it into something imperfectly perfect. I will always cherish it. A song I wrote was read out. With it I made a commitment to using her death to grow life and love going forward. I pledged myself to the lyrics I had written to refuse to let her death be bound in negativity. As the words said:
Gone but leaving choice
What to do with the ghost of your voice?
So even whilst the void resounds of you
And learning what I must
I refuse to discard the gift of love
Though pain calls me to turn it to dust.
You will not be a memory lost
I , I
Will keep the beauty and pay the cost.
For I refuse to let this be
Bound in negativity
These bonds will be broken this time
Round and round and round I have gone
Tightening the rope I keep pulling on
Letting grief tie me to the ground
So, once I have sieved our ground
I’ll grow life from the seeds that I found.
(The last line can also be sung
I’ll grow love from the seeds that I found.)
Song, Gone, by Feral Mother
Afterwards, we wadded out into the sea in our clothes. The salt water and the rain flowed with the tears and the grief and there, in the water, I said goodbye.