What the hell happened in the last 6 months (an update)

This image has an empty alt attribute; its file name is fb-may-2020-1.jpg

We all respond to crisis differently. Some people thrive on staying busy, others thrive on slowing down. There’s no right or wrong way, and there’s no mistaking that the last 6 months have been a collective crisis: medically, politically, psychologically. It turns out that if one mixes a tendency towards the latter coping strategy with a relentless schedule, many aspects of life get neglected. Such as this blog.

So, I’m back.

For good? Only time will tell.

But what I can offer for the time being is an update, which, at the least will assuage my own inner critic. Who has been telling me what a bad writer I must be, if I have been unable to churn out even a perfunctory paragraph or two to announce the cancellation of various previously announced events, or to make the most of the situation given my experience with crisis to publish my journal ramblings as dressed up advice for the uninitiated.

As someone who has been classed as ‘clinically vulnerable’ (which I find bio-politically curious as well as potentially problematic) the last 6 months have been a time of fear, anxiety, restriction. And: selectiveness in relation to a great many guidelines. In the name of trying to thrive rather than merely survive, whilst seeming to risk my life, I have walked the narrow path between considered caution and inspired action.

At times, very shamefully, I have failed to make what I consider to be “the right” choice. Here I do not mean misjudged risks from catching the virus. Though some people would not have to look hard to find instances of seemingly superfluous risks. Thankfully, I have not caught the virus. When I allude to “wrong” choices I mean by actions and words said in fear. In the heat of clashing contradictory boundaries, defensive anticipatory actions I took from a reactionary place in relation to others, primarily those I live with, were actually rather aggressive. This poisoned and complicated my living situation.

Other barbed words I have spoken in this time have felt liberating and essential for my wellbeing. It is in heightened times where there is risk to life that what really matters comes to the surface, and one can find the strength to assert one’s worth to those who have been taking advantage of one’s kindness, unrelenting commitment to understanding others’ actions even when they hurt me, as well as the foolish reframing of incompatibility as difference which needs to be accepted. Here I mean some friends and those who I have been on-off dating for a few years.

On this topic, there is something else I have been mulling over. How does one start…

Is a pandemic a bad time to come out as polyamorous?

It likely is. But it is my truth. I may look back to my various timeline-crossing relationships over the last few years as “just a phase”. But either way, it feels liberating to be honest with myself and others about where I am at. Even if one day soon I realise that I prefer monogamy and that this time in my life may just be the foolish overindulgence of someone who has a tendency to always want more, perhaps only exacerbated by by tending to chase those who are emotionally unavailable- well, it’s my current truth.

I may end up regretting this disclosure but at the present not many people even know my site exists so I rest easy in the knowledge that this post is currently as public as shouting aloud in a forest. More people frequent forests nowadays. But my current forest seems pretty empty.

To be clear on this point- for those of you reading (if anyone is reading) who may be concerned)- until fairly recently, for the vast majority of March until September, I have not met up with any of those who I have been on-off seeing. Life definitely didn’t continue on, in that regard, as before.

However… I am not approaching the guidance to keep 2 metres apart with 100% strictness- even despite being immunocompromised.

The suppression and limitation of physical touch with others has been incredibly damaging. No matter how we might try and justify its necessity. For me at the very least, being robbed of my usual routines which involves contact comfort as a reprieve from the harsh demands of life, along with limiting my engagement with the natural world, contributed to a decline of appetite and overall wellbeing for the month of April. I lost a lot of weight and became more inclined towards depressive thoughts. Until I gave myself permission to increase my desperate sneaking out for nature walks into a regular routine and made peace with the risks of exposure from everyday interaction with housemates.

Whatever meaning people may want to assign to my moral character, or psychological constitution in being unable to cope with remaining physically apart from others, the reality of this aspect of isolation is that I rapidly lost weight, mental focus and wellbeing when attempting to follow the guidelines to ‘shield’ myself from others.

A proportion of my need for proximity was met by my housemates in sitting on adjacent sofas in the living room or on parallel balconies. This might seem not so radical however even this crossed the boundary of advised guidance to remain in separate rooms.

I am not be alone having the human need of physical contact, be in in proximity or via touch. As many studies have shown, regular physical contact between others is an essential need we have for wellbeing. For instance, one way it keeps us healthy is that it regulates the nervous system.

It is an ironic tragedy that the group of individuals who tend to need far more nervous system regulation than others- those who are clinically vulnerable, due to the increased baseline physical stress– are also those who have become the group most touch starved.

There are of course alternative methods for regulating the nervous system, the most easily accessible being listening to calming music or immersing oneself in one’s favourite book or TV programme.

However nothing is as effective as those which engage the physical body, the soma, which has now become tainted by the generalising tar of being fraught with complete danger. (A more accurate picture in my mind would involve holding space for both extremes: danger and benefits.)

Along with human to human physical touch, other incredibly valuable physical regulators are walks in nature; being in proximity to one’s loved ones; and switching between various physical spaces. However all of these other highly effective nervous system regulators were advised against by government guidelines for at least 3 months. It will have created great psychological turmoil.

The disruption of the latter of these, which also regulates one’s mind and improves clarity of thinking and modulates the passing of time, is why a ‘side effect’ of the lockdown has been brain fog and the strange blurring and slowing down of time.

In those who say they noticed no difference, in the absence of physical proximity to people and the outer world , or were able to get used to the isolation: normalcy is no mark of health. And while is indeed a short-term salve for the restriction to take comfort in the repetition of the new order to life… Is it not a sad state of how people relate to the world and their own bodies when they cannot register a loss of things which are great for bodily wellbeing?

In some ways the dis-identification with the physical is not surprising. It is a common and understanding coping mechanism of bodily vulnerability to dissociate from one’s body when it is ailing. All of us- vulnerable or not- have now in the age of covid the possibility of our bodies being sick- and so all of us are likely to at least intermittently, fit positive affirmation of self in other dimensions of existence.

*

Truly, I get it: it is the very coping mechanism which shaped my personality as a child and adolescent, into someone who is introverted and mind-orientated. It’s not to say that I likely wouldn’t have been introverted and mind-orientated without the medical trauma I experienced in the first 21 years of my life (for both of my parents and much of my family are introverted and mind-orientated). But, I can see how the medicalisation of the self can amplify this.

Even today, my default is experiencing life through concepts and ideas. I have to work at being ’embodied’ and ‘grounded’. Whenever I have deviated from my practice of embracing the physical aspect of existence, and convinced myself that I could be content with books and intellectual pursuits, the narrow focus would blind me to the needs of food, fresh air, exercise, connections to others and taking care of my appearance; leading to a spiral of physical and emotional deterioration. As an expert in dissociating from the physical, in some ways I could have let myself be blind my physical self during lockdown and easily gone along with dictums to stay distant from others and to treat mine and others’ bodies as a threat. Indeed, more than once, I have fallen into this line of thinking, and I am sure that I will do so on occasions in the future.

In some ways I have been almost in- training for this kind of isolation my whole life.

After my transplant I was given a list of guidelines:

*Avoid crowds, buffets and treat most food with critiquing suspicion;

*Take extra precautions for extra hygiene e.g. hand sanitise;

*Stay away from those from colds and take time off from school if a classmate has what seems to be a serious illness; etc.

And during what I’m calling my “peak immuno-compromisation” – back in 2015 when my neutrophils were so low I almost needed a bone marrow transplant following chemotherapy for post transplant lymphoma- I was presented with a surgical face mask for my time in the hospital waiting room & advised to move to one of the empty consulting rooms, to keep safe. This was a regular feature of the visits during my most physically precarious time, which I found amusing, in terms of the shock and consternation on the nurses faces when I declined both. Now, I don’t know if this anecdote ages well, but catching up with familiar faces, fellow cancer sufferers as well as favourite doctors and social workers, was something I refused to compromise on. It was my lifeline. It brought me joy.

Of course I was dicing with death. I was not unaware of the stakes. But since I was the most vulnerable person in the room (it was usually only I who had nurses come up every hour or so, hoping to persuade me to isolate) my actions were never contextualised in terms of my wellbeing impacting others’ wellbeing.

But I knew that the thread which I was hanging on by, was intricately secured by the web of connection, so despite all the risks- or rather in spite, and with bold bravado- I always chose the warmth of companionship.

This medical training for physical dissociation can also been seen in the periods of my infancy and toddler years in and out of surgeries, held within a medical gaze during my awkward teenage years and my early 20s facing the after effects of stage 4 cancer and high dose chemotherapy.

This was the kind of chemotherapy which half of people don’t survive due to how strong it is; the kind where even eyelashes, toenails and the layer of skin in one’s mouth and throat are eviscerated. I recall how harsh the autumn wind felt on my fragile skin in my brief reprieves from hospital during this time in 2015. How my muscles wasted away, how sitting in bed was normal day and night, how time blurred into one, and how life was measured by the degrees of pain and therefore degrees of existing in fantasy-scapes and meditative dimensions.

A common mantra I chanted, over and over (sometimes aloud, to the bemusement of the nurses administering chemotherapy or attending to the sores over the whole body) was: “Pain isn’t real. It’s just an illusion. Pain isn’t real. It’s just an illusion”.

This physical dissociation is what I needed to make it through the most harrowing near death experiences. Coming to terms with the more integrative reality that the pain did exist and that it was real, became the challenge I faced in overcoming the PTSD that followed in 2016-2018.

*

Flash forward to now, it is with all this in mind (and much more) that it was not lightly that I decided throughout the first part of March and from about May to meet up with friends- with whom proximity and physical affection such as hugs are valuable and important for me. I know how awful it is to spend time at death’s door; how the agony of physical suffering can be so acute that death promises the relief of oblivion. Whilst simultaneously knowing what it is like to have to consider one’s life over ‘too soon’; before one has time to achieve all that one has set out to. I know how it feels to have regret and frustration at the possibility of losing ones life, in part due to one’s own folly (having had symptoms for about a year before I saw a doctor, by the time I was diagnosed I was stage 4). I know what it is like to bear the burden of my own life in the choices that I make. So, I do not hold my stance lightly or without awareness of the stakes and possible outcomes.

Also, I am aware that this collective crisis, in being collective, is not just about me. The question of wearing a mask, of distancing by 2 metres, and of limiting contact with others, is also about the wellbeing of others. One cannot always see who will be most affected by viruses. And everyone deserves their best interests to be considered. In case you’re wondering: yes, I do wear a mask on public transport and in shops.

My standing for living a rich life, which as someone who feel content to spend about 90% of my life, aside from working remotely: gardening; on nature hikes; cooking feasts in the kitchen; reading fiction and watching TV; and socialising over zoom-means that my concessions feel proportionate to the minimum required external interactions, rather than excesses.

During “the 10%” I have been on a spontaneous road trip to Glastonbury to say goodbye to a friend whose visa suddenly ran out, to a birthday picnic with friends at a deserted beach near Brighton, on a few trips to Hyde Park in London to see friends, on a hike in the New Forest to see family (including my 98 year old grandad who has chosen to continue to follow his passion of flying aircraft and socialising whenever possible). There have also been occasional trips to the city centre of where I live to meet up with friends- on average once a month. I have not gone on more excursions than usual; but selected the most important. Since I have been able to work from home, and no longer have the same social component to work I have been able to choose my social interactions carefully. In light of both my parent and siblings having (temporarily) lost their jobs in the last 6 months, a running joke has been

***

The volunteering in early March, for the Transplant Adventure Camp for Kids (TACKERs) in Switzerland, was cancelled on account of the risk of an outbreak were a group of transplant children from all over the world to gather. However, by the good grace of the organiser Liz Schick’s hospitality, I was invited and treated to a week with her and other would-be volunteers (all of whom are closely connected to transplantation either as medical staff or as recipients). I am incredibly thankful for her kind hospitality, the opportunity to breathe the menthol alpine air, the thrill of skiing (even if I blagged my way along on black trails, pushing the limits of my practical capability) and to converse with a great many interesting individuals in the March week where the coronavirus went from being perceived as an eastern epidemic to a global pandemic.

In an impromptu speech I, along with another now adult TACKERS child, was asked to give to Liz in celebration of TACKERs on her birthday, the spur of the moment theme I drew upon was learning to face and master risk. In recounting how the freedom of escaping to the alps for a week in many winters aged 10-15 gave rise within me to an awareness of the importance of taking risks, I spoke of how learning to not being afraid to fall in the snow when skiing carried over to inspiring the pursuit of living a full, post-transplant life. “After transplantation they send us home with a list of what not to do; TACKERS opened the door for the possibility that one ought to push the limits of our physical capability. TACKERs gave me the companionship of others like me, and it inspired a love of freedom”.

Looking back, the tragedy of this sentiment is that it no longer holds, in the complexity of the post-covid world. We seem to be caught in a vicious zero sum game, where whatever we do someone seems to lose. The fact that I found myself battling with fear whilst re-acclimatising to the slopes, how my hesitation to fall as an adult skiing, out of fear of breaking my leg and missing work, meant I butchered my skiing technique and created far more work for my muscles to remain balanced, was fitting. The struggle with fear and the need to control rather than ‘let go’ has been what has defined the last 6 months for me.

Plans to present my research at a spiritual discussion group at my University, which were also previously announced, were similarly waylaid. The in person resumption of the discussion group remains postponed. In the meanwhile I have been in close correspondence with the group’s primary organiser, working on a project which has involved my diving deep into my medical experiences as part of zoom interviews on my personal experiences with transplantation. I look forward to being able to share more on this in the future.

An in-person art collective residency for fellow creative transplant recipients, from Australia and the US (based in the UK) also had to be postponed (for obvious reasons). In the meanwhile- along with networking online and working on a variety of creative projects (with varying degrees of consistency and success) -I have co hosted a series of regular zoom discussions with fellow “creative hybrids”. The Creative Hybrids Lab (now on call #27 as of next week) has been a psychological lifeline. It has been invaluable to have a safe space to discuss the everyday and the taboo aspects of transplantation, especially in the age of “the plague”.

I look forward to sharing the articles I have been working on these past few months, along with collaborations and updates to my social media, in due course.

I hope my reflections have been interesting and resonate in some way.

Thank you for reading.