All of us Ghosts
The Ghosts Amongst Us - The Story of the Many Affected by the Few
The Ghosts Amongst Us - Perpetual Grief - Forced Contemplation - Collective Grief
Reflections and musings from the mind of an M.E. veteran, Madeleine Wallner
A ghost called Pariah, not her given name.
Another character for another book….so many ghosts inside waiting to get out
Life loses a lot of meaning and direction with this disease, but I’m still holding on, in any way I can. Come along with me if you like…
Bended spoons, the rhythym of our lives, metaphorically played out by a piece of cutlery, our lives reduced to an item of tableware, but better than just being a number: Some silver, some gold, some made of pewter; some glass, some made up of natural materials like wood and clay. Those which we live by.
But not all spoons deliver what we hoped, some force feed us dirt and despair, others suprise us, fool us, trick us; deliver nothing fulfilling or nourishing; empty and unsatisfying, offering mere grains of solitude.
And those that deliver us the basic nutrients, to keep us just about surviving, we are still thankful for.
Some disappear before our very eyes, just like the ghostly shadows of our past lives… here today gone tomorrow.
So who are we now? Who are we now we’ve joined ranks as a result of the new virus, with the Long Covid casualties, those newly diagnosed with M.E. and more since this latest (BSL-3) biohazard arrived on the scene; this new pathogen having affected so many of us with M.E. greatly too, as well as many others, like us who too were fit and well. Any virus in fact can be incredibly damaging for those of us with M.E. on top of our already dysregulated immune systems, but this one has been novel indeed.
Is a new age dawning? Is medicine too late?
Well, yes it is for many of us as lessons have not been learned, historically. The distinct lack of investment is telling as people continue to be affected, months, and often years post-infection in some cases with this particular pathogen, as it often is with others; and those which lay dorment until they’re activated or reactivated. Overall I’ve learnt that chronic inflammation and reinfection is definitely not advisable for the human body in this case.
Digital apps are helping some to be seen in one way, pertaining to those who only listen to and look at data, but what of our defining spirit, our intellectual insight, our collective soul soup?
We are those who they will not, shall not speak of, we are the Pariahs.
Some dare to speak of us but they also go unheard by those with the ultimate power to affect change.
We continue on, expressing ourselves through any means available to us, whether that be art, science, writing, whatever we are able to do that gives us some meaning, place and purpose in the world.
I haven’t yet honed my craft/creativity, to put something together enabling even an attempt at monetising it since ThriftVIP, (apart from selling off as much as I can via Depop). I’ve been enjoying doing the odd bit of painting and crafting with meaningful outcomes and just for relaxation and fun/enjoyment, but I’d really like to make my mark in the world in a better way. I was thinking to perhaps put all my writing and notes, poems etc into songs with my ukulele, or better still, a book for commercial market, but it often feels like something will be lost somehow, become sanitised, watered down for the masses, formulated to appeal to the mainstream, dictated by those who don’t really understand what it is to live in our world. But perhaps that is the focus I need, some discipline within my writing if that is the aim.
I saw Michael Morpugo on TV recently, talking about his new book, a selection of poems and short stories, which is perhaps a better option, especially for those of us with fractured creative lives and no solid chance of a career or consistent work. For too long, our collection of work remains hidden from the mainstream due to lack of visibility and opportunity.
Reading should be accessible for all and it should reflect all, and there is a gaping hole there to be filled for many of us with hidden diseases. Perhaps if I write a book, then it can be audio described, and possibly a screenplay could be adapted for a drama, then we’d see ourselves on TV, represented and seen, heard and understood more, talked about and normalised in a positive way that benefits us, through awareness and championing. That is the dream, as the scandal awaits to be unfurled.
To go about becoming a writer for the screen would require commitments way out of my capabilities, so again the pathway to that is inaccessible for someone with a disability like mine. I am no longer a graduate fresh out of university, to be molded. I am someone with extensive life experence who isn’t being heard or given a fair shot.
Vox of The Veil on Substack writes about disabled people disappearing when they stop becoming inspirational: when you no longer become marketable. This is the toxic culture we are all forced to live in and I think disabled people can see this so clearly, from the other side.
I’ve been finding it difficult to create an alternative to my desire to physically move as my art form, one that is my natural default setting, where I am always so driven in this way. My previous vocation, one that kept the roof over for a while and gave me my identity.
I’ve recently considered going back to attempting similar pursuits to what I was doing after my first and before my third major post-viral relapse and M.E. / Fibromyalgia diagnosis. Both are physical options that perhaps could be made doable with a more gentle offering. Going with your true passion is tricky when it’s something that can make you quite ill or worse, relapse badly, taking you backwards again. The trade-offs can be risky and brutal with one wrong move.
The main purpose for me is finding connection again with others, but in a safe environment. I don’t feel I was made for a digital life at all. I enjoy physical contact face to face, voice to voice, and skin to skin connection, although that would feel quite alien now after years of isolation and months of solitude.
Finding something to replace my natural urge to express myself with my body through movement has been tricky, and finding my voice through writing, also tricky to hone and perfect. It’s been muddied by massive inconsistent limitations (the only consistency being the inconsistency of symptoms with this disease, apart of course from PEM which seems to be a given despite 17 years of experimenting).
Then there’s the scandal and societal and medical battle surrounding our stigmatised disease that takes so much of our energy, but great writing always comes from struggle I suppose, so at least there’s that.
Never really knowing if it will ever be good enough, but doing it anyway to test the water, is what I need to do.
I need to focus on that and spend less time campaigning and more time on honing my creativity and rediscovering what I love that isn’t dancing, but that which provides something satisfactory, no more than that, fulfilling hopefully. Something that fills that void of nothingness, something much more than just existence.
Over the last several years my time has been swallowed up on science and research and reading so many papers in an attempt to find the right balance of supplements or latest herbal anti-viral to help myself since the virus made life harder again. Protecting myself from this mutating pathogen is my number one priority right now, to give myself the best chance of repair. To allow my body at least 6-12 months grace, without being reinfected (fingers crossed), otherwise it’s stepping backwards again and I cannot afford to lose any more years now, after this disease has taken 17 already, out of the 30 years with it. For someone with M.E. it can take months to recover from flu viruses, so this latest one has been devastating for so many of us.
I fear much damage has already been done and who knows how that is going to play out over the years, but I need to try and enjoy the time I have if it is indeed now limited, and make some changes again to what has already been a constantly adapting and evolving personal picture over the last 10 years. I’ve learnt a lot about the connections between viruses like EBV and heightened cancer risks, not to mention the acquired immune deficiency of the latest viral onslaught, drawing similarties to the behavious of viruses like HIV.
If I can buy myself some time as someone with an already dysregulated immue system, I’m going to do that through researching potential new treatments, herbal anti-virals and supplements that might help as has already been a life-long journey as someone with post-viral M.E.
So how do I come up with some kind of commercial but meaningful book?
I suppose I can get help; a mentor, friends to read it and then do some boring grammar check, where my grammar gets changed even though it’s how I speak; my inappropriately placed commas, perhaps.? Is this what publishers do?
As I was making notes just before writing my Wintering articles at the beginning of this year, I was frustrated and totally fed up, of writing endlessly for no real satisfying end goal other than personal achievement. Writing articles not many people will read, even though a lot of them are about really interesting and amazing people, but that get no or little exposure is unfulfilling; so I’ve decided to start focusing on putting my musings and fractured creativity into an actual book. One that takes the reader on a journey of rediscovery while representing those of us lost in this wilderness of invisible and hidden chronic disease. Something more tangible that can also be a physcial thing too, as in an actual book.
To create a fictional book that brings some comfort, with relatable characters for people with M.E. and Long Covid, and any other physically challenging and energy-limiting, disabling disease. Not for those who are living a ‘muggle’ life, but those we can relate to, as chronically fabulous and consistently challenged in life, by health. I’d be overjoyed if it appealed to others too, perhaps spreading more awareness at the same time. The key is to write it for everyone, with those nuances so it can be relatable to others’ situations, within the themes of betrayal as a starter for example, which is how my book begins.
It’s main objective though would be to offer some sanctuary, an exciting escapism, to live vicariously through characters on the page, like the books that have kept me going for years now.
If I can get some of my poems and lyrics in there too, it will be a bonus and I’m up for that challenge.
And on, we continue to forge our way through this life…
The premise of this book will be one inspired by my journey of living with a stigmatised disease. The task of making this subject matter warm and comforting in appeal as well as dynamic and heart-wrenching will be a challenge in itself, but what else is life but light and shade.
The main inspiration for this book is a poignant one…
So many scandals to contend with before the progress of ours. A disease that has been around for nearly 100 years.
We survive in protest because it gives purpose to our campaign, and carries the baton for those less able to do so. We hold on while we watch many others fall.
And then what else is life but to try and enjoy what you can. If and when you can.
After 30 years I am suddenly content with this quarter life because i have to be right now. I tell myself “everything is going to be ok” because what else have we got? I prefer to follow the seasons through the weather, taking my cues from nature, in tune with my instinctual animal nature and my place in the world..
I’ve done my bit over the years, more than I should have to have done, and tried everything I possibly can with this disease: written letters, signed petitions, donated to campaigns time and time again, written reports, fed back to government, written to APPG’s, written symptom diaries because I have to to get help/DWP support; done so much admin when GP’s don’t bother, sent myself into spirals of knowledge through books, online articles, studies by professors, tweets, and endless links which have sent me on 3-4 hour dizzying journeys through time and space. Some of it has paid off, and in other ways I now have another layer of education from my learnings which is a silver lining of sorts. I realise how much I enjoy learning about science and history, a lot that has been hidden from us over many years.
Scandals yet to be uncovered.
And if the insidious nature of this new level 3 biohazard pathogen wasn’t deadly enough (in more ways than one), the response to it by governments & healthcare is even more so.
People with M.E. know all about information being kept secret, that whereby it’s too late by the time it comes out or if leaked there are less of us left to fight back (much like the post office scandal, and more besides).
Because we know they know.
It’s already out there, yet those in power are still managing to control the narrative to save money. While we continue to suffer.
But not in silence.
As Brian Hughes put it:
“Preserving reputations and status - power structures seek to preserve themselves and people put themselves beyond criticism; and authority is used as a tool rather than something that needs to be avoided.
The BPS theory of ME/CFS is essentially, a grand delusion… a kind of sanctimonious shared belief shared by a professional clique, who for little more than circumstantial reasons, find themselves dominant in British, especially behavioural medicine.”
The above quote from Brian Hughes was from ME ResearchUK website - video: The tangled Story of ME/CFS: Controversy, Denigration and Ignorance
The dinosaurs in charge are not happy to extinct their theories, enabling them a comfortable ignorance that keeps them in their cosy monetised narrative, maintaining the status quo.
M.E. …And now post viral SARSCOV2 amongst more I’m sure besides.
As a side note, the same Horizon software is now in the pipeline for our medical records… what could go wrong? Worse perhaps is that more private contracts and medical data will be controlled to continue to benefit the few.
But relax, stay in your sick lane, we’ll deal with it all, is the message we’re getting. PR does not and never should belong in medicine to sell us lies, or to distract or keep us from the truth, yet we see it, and more importantly we see its lies, we see through it like the ghostly PR machine that it appears as, like an apparition of self praise, while its own workers contmue to fall sick with long-term post-viral complications because protections are still not in place. It’s shameful the rhetoric I’ve witnessed over the last 5-6 years of this pandemic, just to keep the economy going at the cost of lives and health.
For now though, we make art.
We are art.
We are all of value to society.
Thanks for reading my musings and ramblings which help me to move forward by putting them out there on the page on the www. in the hope that they might help someone else. It jumps around a bit and is a bit of a test to see how I’m writing and what my cognition is like. It’s going to give the bots something extra to do too and might mess with my algorithms and site specificity but I’m only human .
I know I go on a bit and maybe that’s an ADHD trait, plus I’ve developed new and worsening neurological symptoms since recent infections, which I’m hoping aren’t permanent or causing further decline. I am finding it increasingly difficult to put stuff together in an orderly fashion. I am working on some neuro-diverse traits by getting assessed next year (it’s taken since Feb this year to finally get an appointment booked in for next year and loads of forms), but hey I’ve waited years so a few more months is nothing; although I’d like to know if this is why I write so much. It’s almost not meant to be read and is a kind of anti-journalism article, in the way it has little structure or gives any reason for you to want to read it. I need to work on that in creating the opposite for a book. Let me know if it hooks you at any point, constructive feedback is welcome.
It’s also a start in working towards a new direction for ThriftVIP, focusing my website on Society and Culture with elements of style thrown in for good measure. So, if you’re reading, thanks!
With love,
Madeleine