Blogs are a curious medium. They completely blur the line between public and private. They are paradoxical. Something that we’ve come to assimilate into the fabric of our communication repertoire surprisingly quickly. Much like we’ve rapidly adapted to other forms of social media, smart phones, the digitisation of more and more aspects of our material lives.
I wrote about this as part of my final year undergraduate thesis, which I wrote in 6 weeks rather than the allocated 12 week semester because this was when I first crashed health-wise. I’m still not sure how I did it. Probably, in part, because I chose to focus on blogging in the humanitarian sector so my interview and survey participants were already inherently altruistic. That’s a wry sort of joke, but like most jokes there’s some truth in it.
I won an award for that piece of work and I remember this ambivalence in my gut about it. The opportunities for my career were sky-rocketing but as I went up to the podium to accept a bottle of champagne and the kudos in front of a room full of my peers and established veterans of the profession, I was unwell. At my strongest public moment, I felt personally fragile and destabilised. The distinction between public and private was clear for me in that instance. I felt such a schism between my internal and external experiences as I was stretched more than I’d ever been before in both aspects. It felt surreal.
I think about the course of my life mostly as a perplexed mind might approach a puzzle. Threads that seem to be going clearly in one direction have been contorted and severed at the strangest times. Conversely, at my times of greatest despair fortuitous coincidences have frequently occurred. The concept of fortune and misfortune has been muddled for me so much that I have chosen to become mostly detached from outcomes.
But we all need a driving force in life. Like Kurt Vonnegut said in explaining the necessity of momentum while writing a story:
So, too, do I. This blog is where I discuss the ways in which I ‘drink water’. It doesn’t really have a set theme or trajectory, which is something I have previously considered lacking, but now feel is appropriate. How can I make consistency here when my life is so inherently inconsistent? Why do I feel that I should try to make it otherwise?
Well, seeing as it’s just me monologuing here – which is essentially what blogs are, a sort of modern soliloquy that may or may not be heard – I’ll try to answer for myself. Writing here is basically putting my mind on a projector that is a webpage on the internet. But like I said, this is my glass of water – one of them. So I can speak for myself and say I seek consistency because it gives a sense of control, achievement and progress.
It also makes dealing with other people significantly easier. It is a burden to be unwell, but it is an almost equal burden to be unwell in such a way that it is very difficult to convey the parameters of your wellbeing. In recent weeks I have felt the best I have in years. My treatment is having positive effects. Simultaneously and interspersed with this experience I have felt so unwell that we’ve called an ambulance and I’ve feared for my life. I struggle to understand this so I can see how it would appear even more inscrutable to anyone not living in my body, not living as my carer seeing me every day with all my ups and downs or not experiencing it directly for themselves.
Consistency would dissolve the social tension that invisible illness reaps upon the lives of those it visits. Often for protracted times, well beyond the parameters of a polite acquaintance. Chronic invisible illness is the forced marriage our body will not let us escape. A frequently lonely alliance it is, too. But there are fruits borne of solitude, that could not be birthed in any other way.
The impetus to write came to me today from one of those strange coincidences that shook me out of a sort of space of despair. I had been thinking about money and the worth of my life, in quite practical terms. I do not consider myself special outside the love and warmth I share with those I’ve formed bonds with over my life. I do not believe any one life is more valuable than the next but we can measure the value of a life by what a person positively contributes, we often do this most intensely posthumously.
I’d been thinking about the scales tipping, how what my family and loved ones have sacrificed so I could keep pursuing wellbeing has been so great and is becoming greater without a certain end in sight, though my recent improvements show we’re on a good trajectory but continuing will be expensive. I wonder how far we have to go and at what point is my advantage no longer considered more important than others’ disadvantage – my family members face financial instability in their latter years because Lyme and co-infections in chronic form is unrecognised in my country and completely unsubsidised. This saddens me greatly.
Even if I make a full recovery, the wake of this illness will remain.
(Ripples image from JohnMcPherson at DeviantArt)
Please understand I am not saying I don’t want to keep trying, if finances were not an issue I would not be thinking this way at all. But every time we try something and expend more resources, I make a choice to take from those I care about. It causes me to contemplate my personal value. The urge to survive fights with my concern for people I love and their longterm security.
Often I do a sort of prayer as I’m lying in bed waiting to fall asleep – which can take hours when insomnia is particularly bad. I’ve mentioned previously that I’m not religious but I’ve been listening to speakers on Buddhism and I am mindful in the sense that I try to check myself when I feel my thinking spiralling into places that make me feel so bad that I won’t want that ‘drink of water’ anymore.
So last night after trying to objectively assess my situation, resources, the odds of recovery and impact on those I love, I lay in bed and thought hard about what I want. Not what I think I should want in life, but what I deeply want. This is what I came up with:
– To help people in a widespread and useful way, to positively contribute to the world on a level that extends beyond my individual life
– To be free to engage intellectually and socially with a very wide range of people, because I consider who I am to be a collection of conversation fragments from others, lasting impressions that have moulded my perceptions, values and actions. I have keenly felt the loss of this part of my life and it makes me feel stagnant
-To have physical wellness that will reliably form a foundation upon which I can exist out in the external world independently, making almost anything possible if I put the full force of my reclaimed energy into it
That was it.
On another night I might’ve come up with different core wishes but these are all things that would fulfil me, and right now I do not feel fulfilled. I do feel clearer though.
Then, not long ago, a peculiar thing happened. I need to set some context before I relay the experience and its significance. This past week has been gruelling by most peoples’ standards, certainly everyone in my immediate social sphere and pervasively through media outlets I follow. We will have President Trump in the US, but hot on the heels of that announcement came the news that Leonard Cohen had died.
More so than any other popular figure (and we’ve lost a proportionally high number in 2016), his passing knocked me. I felt assaulted by the regurgitation of his various most popular lyrics, appropriated on social media to fit someone or other’s rhetoric of grief. In my own way I should admit I did this too but this time I felt heartsore because I’d taken those words to a place deep inside and I’d woven them into my core as a form of ballast against questions that troubled me. I felt protective. I felt loss. I could not listen to the musical tributes because I would cry. I saw him perform live in 2013 and I cried then because I knew I would never see him again. It’s making me teary now.
Yet today, I happened to be watching the final episode of The Americans, a TV show I’ve been binge watching for several days and in the final episode they started to play “Who by fire” by Cohen. I’ve watched four seasons of this show over recent years and I don’t believe they’ve ever used a Cohen song in their soundtrack before. It forced me quite strongly into the present moment. It forced me out of my self-imposed embargo on his music, it unfroze my grief.
Watching the tributes come thick and fast in various media, I could see the blending of private and public, and I realised it carried a peculiar sort of beauty. The words that he wrote, that I took to heart, that were quoted seemingly out of place and truncated, well they were evidence that my deepest feelings are shared. My private appreciation matched the sentiment of many, many other people. Listening to and reading this particular man’s words has been my ‘water’ many times. It has informed the fabric of who I am and in some way that connects me to the world.
I’ve mentioned in past blogs that my diagnosis came about as a result of a series of synchronicitous events. What I may not have mentioned was that that cluster of events happened at a time of deep despair in my life, when I questioned the point of living a life of debilitation and suffering with no explanation or end in sight. Then an answer came and I found my way forward. Religious people would call this the work of God but like Nick Cave sings in the song ‘Into my arms’ I don’t believe in an interventionist God. Truthfully I’m still not sure what it is, but it keeps coming at times when I’m at my lowest and earnestly questioning what the point of my life is and whether it should continue.
As I said, we can measure the value of a life by what a person has positively contributed in some fashion. I think it is clear that Cohen’s contributions are widely, profoundly valued. I hope I have the opportunity to contribute more broadly in my own way. I have a fire in me that has settled down to a slight blue flickering orb but I know there’s the potential for a fierce blaze to grow. Fortune and misfortune feel like strings I am not within reach of pulling so I don’t know right now what will transpire but as long as there is a drink of water to quench my thirst, in this story, the fire continues to burn.