I am beginning to realise that my memories are not wholly my own as I share them on this blog, extruded into the biosphere I am reminded of details I had forgotten or mislaid, or filed under NOT currently important, sometimes “no it wasn’t like that, it was like this”. This has been a welcome poke, and an irritating incursion into my version of my reality, (paradox alert). When I am inspired to write a post it is usually one tiny fragment of memory , a fleeting glimmer in the minds eye of an experience I had, while jaunting around life. Then like an old fashioned pink sugar floss spinner I whirligig it up on a stick to go.
When I go on to explore it further I’m always surprised at where it takes me. A completely holistic account is undesirable, like a literal truth, as I am chasing moods and feelings which are picked from the smorgasbord of my own making to express something truly my own . Other peoples memories of the experiences shared with me are solely theirs. Gosh this sounds like a bit of a moan…but…no I like all the feedback, what ever it makes me feel, the twisting and reflection it can cause is healthy and welcome, so thanks one and all, but it leads on to another similar dynamic.
it reminds me that when listening to others the/my ego just can’t help but insert itself; try to muscle in and take over (instead of being an exploration of the storytellers experience, it veers off too soon to the “listener “… )
A poignant example is in my parenti role, my child would be expressing their self, often unhappily, and I would leap up to “Dial that down to Perfect“, all in the blink of an eye. Result; boy shut down, the feeling he was so tenderly trying to express trampled in motherly love, protection and guilt? No question about it. Self serving Motherfucking guilt. I feared hearing his words.Those little drops of magical nectar which recalibrate relationships, soak into the psyche, refreshing healing old wounds and fears and incursions. From our narcissistic child selves to emotionally intelligent light beings all in the blink of an eye.
(Turned out I needn’t have worried tho’ he thinks I did a great job)
it used to be that I was slightly self conscious about people always seeing me on the sofa asleep, or just doing stuff. I live in a bungalow and the living room feels like a fish bowl, as nightfall came I was always in a rush to close the curtains as it got darker and so easier to see in. Sometimes I would be on the sofa watching T.V. or whatever and would glance up and see someone in the opposite house or walking by eye to eye. As if they had just walked in, almost.
It was a moment that irked me, or possibly in some way embarrassed me. My embarrassment stemmed from the fact that I was always doing the same thing, or so I thought, think, and definitely not doing enough, as a disabled, chronically ill person who always comparing herself to the old one, who had legs to get back and forth easily and arms to carry heavy loads, now I shuffle about, and drop cups or spoons like they’re too much for me, or possibly the fact I might see them in the morning and then again at night, and I would be in the same place and position Oh the shame.
After the first week of being grounded, I realised I no longer felt any sense of self consciousness. Watching and feeling everyone I had been living around recently going thru’ the self same expressions and averted glances, that then became nods, and then smiles as we all succumb to the business of what to do when you can’t go out. I don’t even close the curtains anymore. Literally can’t remember why it used to bother me so much.
Also…I have accepted a bit more that I’m quite active in some sense, slow, but active. Lots of balls in the air, juggling like a pro, and choosing activity based solely on my whim. One thing sit, one thing stand, mindless activity -v-academic rigour. Tick Tock, Left Right.
Prior to the Big C being a human being just wasn’t enough through all the baggage and pressure to really sit with the knowledge we are all each one fragment of a collective experience, no differences that matter; blood and bone. In port or at sea. But the whole world… everywhere feeling this, about that.
please remember that it would be heart warming to hear from the people who have subscribed, read or followed this site. Any comments or likes are slavishly drooled over, and even tho’ I can see how many people may have read these missives, it would be great to know more about you. Or not, enjoy anyway.
I was open then. Literally living on a whim. All my clothes were homemade. Scotland. Living on a peace camp. In a caravan on the side of the road. Physically I would go anywhere. More or less with anyone. To do anything. I hitch hiked up and down the UK. Drove to Europe. Flew to the America’s. In my 20’s that is how I expressed my need for freedom. The open road. A long and winding journey with no end save an imaginary convergence of place, relationship and peace. The emotional connections I had weighed heavy on me. Family friends and place. So I was never really free. Always swinging back that way, to be drawn in by some “solid” solidifying conundrum. What stopped me was a broken betrayed heart. I wished it had catapulted me away instead of sucking me down. My whimsical fancy now took a different focus; trying to fit in, catch up, try something different, albeit trying to be the same.
I began to follow and acquiesce instead of lead. My confidence battered I forgot I knew what was best for me. Maybe this is the same road of self discovery that many of us take, different details and names but loss and suffering. Compromises and eventually a path that is comfortable. The tension of harnessing wildness in a bubble. Not the caged animal in a zoo relentlessly pacing up and down but light bouncing off the walls creating Northern Lights of the soul.
is it just me or is The Big C no longer cancer, which I always found incredibly annoying anyway: the illness hierarchy! the adverts; mothers on the warpath in pink t-shirts showing the kids how you beat up your opponents, surely not the playground motto I hope, for the innocent parent who even suggested that maybe there was some evidence that perhaps… bash, bash , bash, we gonna beat cancer, fisti cuffs up, snarls and menacing growls. Noooo we need expensive research and drugs and we need them nowwwww. Honestly I do get it, I’m no friend of the old Big C, but now everyone and their grandmothers are out buying CBD oils, so where the Bash Street Gang at now… who fucking cares quite honestly, tackling Coronavirus, policing the naysayers and such?
Well jumping on the band wagon is an important part of information dissemination, opening the doors of possibility, not everyone can be driving the first stagecoach, leading round and round in a circle. Within the circle of wagons lies context.
I have been stuck inside for a long ol’ while now, due to illness and self protection, energy too. My world hasn’t shrunk much at all, and what I found most trying and challenging was the loss of where to place myself psychologically. Where did I now fit really, where was my personal meaning and fulfilment, stripped, as I felt I was by so much that defined me. Ha, what a high falutin’ notion, but as I wake up on week three of what has now become an enforced lockdown with my son, who at 19 was in the middle of a first year at University I am feeling the gentle and corrosive shift of context in the air, the holiday charade is over, the dust has settled, literally in our case as I abhor hoovering, the what now’s and what thens and what if’s.
Stripped of the world of work and shops and study, coffee shops and eateries, and hobbies and human interactions the insecurities and transparencies of the human psyche begin to throb. Thankfully so too does empathy and creativity, self worth and importance. That’s how we survive.
There are those out there whose lives are built on fashion and cooking shows who are desperately posting images and alternative ways to continue their status in society on maintaining “the importance of being dressed right”, and “it has to be left for at least two hours to rest”, when PJ’s and a tin of beans standing at the open fridge door is perfectly apropos a la Nigella the Diabetes Goddess, or the mushrooming of online exercise classes, when your 10000 steps means walking up and down the living room, every day, all day. The novel fun factor only lasted a couple of weeks, the enthusiasm is grating and the reality of empty streets and faces looking blankly out of windows is frankly dispiriting.
There is one group of people though who are genuinely in it for the long haul, and by that I mean were before and will be after, people who if anything have found their professions cut through the lockdowns. I personally know of maybe 10 people who are out there like its 1994; talking therapy counsellors, online, on skype, in prisons, caring , helping professions, and food shop everythings, refuse collections, the whole of the health service workers, delivery drivers, postal services, well that’s my little world done.
so surely at this time and surely in the months to come, the question of the society we made and its efficacy, coronavirus notwithstanding, will be more and more laid open to scrutiny, was the intention ever to be a good quality of life for the people on earth, or was the intention always one of personal survival, not even at any cost, but always at any cost. Instead of being told what to think, politically we are experiencing what it all means.
Those 8 people who hold in trust (sic) all the 236 trillion, half of it actually holed up in their possession,(see my recent post https://wordpress.com/block-editor/post/returnfromthebewilderness.com/384) might well be thinking to themselves “hell son, me an’ mines aight“. I mean if I was sitting in my house with the rest of almost nearly all the 7 billion people on the planet, which I am, I’d pretty much be doing all I could to sort this mess out, along with all the other messes, instead of beautiful bill gates going online to smile inanely and talk about fleecing yet more money from the impoverished 80% to “find a cure goddamnit” and pretend that they are all bound by the same rules as the rest of us. Too expensive to test everyone, HA, is it? Define expensive.
Excuse me can I get 118 to go please, trillion that is. With sprinkles on top purleeze.
Twelve new projects I did to stop chronic illness overwhelm, ennui, deterioration.
#1 Foundation in Art and Design, Camberwell College of Art, full of young people and me super ill, really didn’t cope well. # 2 Complementary Medicine Practitioner (Swedish massage) In deepest Kent, Snodland…..they all thought I was right up my own arse, proper special, and yes I was. #3 Nutrition Course which after a couple of months and two brilliant essays submitted the college was disbanded! Honouring the leftover students, but hey who wants qualifications from a defunct college. #4 Jewellery. This was a big event, my living room covered in beads and silver wire for years.
#5 Painting again
#6 AAT (Accounts Technician) Surprising really that I really enjoyed it, it was very difficult and a massive challenge.#7 Attempted Parliamentary Candidate for Local Labour Party 2017 (4th out of 4) so not very successful. It was a glorious shit show of self interested power hungry malevolence. (sour grapes anyone?) The person they picked walked out and was never seen again… and then the next one lost the GE with a glorious 19000ish deficit. #8 Cooking. Always and Ever was it so….#9 Sewing. I tried to make bags, purses, jewellery, all sorts of stuff. #10 Reading, #11 Parenting ;that word sounds like its being shared. Parenti might work, I parenti.
(Oh lets not forget#1 basket making, not even finished one, but I have plenty of bamboo cane.) there are many more little projects, but ya know… those are what came to mind.
#? and now my latest, a new course, signed up in the middle of the coronavirus and personal palliative endgame, which shall remain private for some time. I did think perhaps I was being a little impulsive, reckless even; 12 months? Would I make it to that hallowed end?
Imagination is a curious and powerful multi-faceted tool, like a Swiss army knife, which has my past , present and future all wrapped up in it, so if I make it so, prepare and plan, work and scramble for I may create something that is strong enough to pull me up out of the sick bed should the need arise. My son does that but just as old age inevitably leads to death, nature abhors a vacuum, so I will not give it one to suck me out of.
and so it begins, my personal experience of life now writ large. Stay in, be aware of catching any germs. Instead of being a voluntary outcast, the lonely other, I am the experienced traveller in these troubling times, an expert in overcoming whatever comes @ home. Its been an accelerated learning curve for most, I had years to work out what to do.
About a month ago, I was in hospital with, well just the usual, high pulse rate, low oxygen saturation and fever, not too high (see picture above). The hospital had been my (not) happy place, but I was always grateful they could stem the flow of infection. Nothings really changed for me…..
…..except I feel a unity and sense of purpose in the atmosphere, that life matters, all the kindnesses I was used to receiving from people, my dependency on others to have a decent life has been stretched out across the world and a significant majority of people are caring and experiencing dependency. Consciously.
It certainly stripped me (and continues to…) of inauthenticity. I have to laugh (and cry) sometimes at the stuff I deemed important.
So I feed the mind; first and foremost, check my attitude, and Sapere Aude, Latin for, well look it up if you don’t know.
So where do we go from here? After a couple of months of blogging (as predicted) I’ve reached the end of my long moan about the hard times, difficulties and challenges, and apart from banging on about my domestic trouble and strife I’m going to have to find the reason I’m doing this again.
At its core was the need to respect and revere my self, my story. Being chronically ill and feeling I had no value and processing the whole new world of debilitating illness had made me realise how little self esteem I had to start with. I was still a mum, social justice cheerleader, artist, cook, life long learner, so where did the lurking sense of failure come from. Somewhere deep that’s for sure, so I went there, and came back, a Return from the Bewilderness no less.
(Write , write what you know they advise. Well what I didn’t know is how I, a chronically sick, disabled woman , mother, sister, daughter , aunty and global citizen fit in to the grander scheme of things.)
As I get to know other chronic bloggers I slowly see their intentions and underlying interests, be it churchy, or cathartic, or prescriptive and helpful, money makers too and so I guess mine is in modern parlance, gender bias, which is appropriate considering the heavy burdens all humans endure whatever their sexual roles within a society supported by social institutions which support irrational human behaviour. Phew that was a long sentence.
So Fun Fact . Eight people control over half the accumulated money, (wealth, capital ) shared by the rest of the seven billion people with whom they share the planet…in our capitalist economic system money talks, and if one of the eight farts in their luxurious easy living space it can cause a fucking tsunami on the other side the world.
Now that kind of makes sense when you see the untold poverty at one end of the spectrum and rich lives at the other. I’ve always found great comfort in the irrefutables in life, and one we really can’t refute anymore is that if 80% of the world, that huge global ball we all share with equal rights and claim just by being born on it surely, live on less than $10 a day and the 20% left (yes that’s us folks) the trans-national middle classes of the world, then something has gone very, very wrong.
Look at this and weep. Total world wealth is estimated to be 236 trillion. All but controlled by 8 people.
So my question is, who does all this misery and suffering and starvation and climate catastrophe, and inter-generational malnutrition and poor mental health serve? Sure as shit ain’t me or anyone I know, and that’s including the fact that just by living in the UK I am part of the 20%, competition is fierce, especially at the virtual borders, where people know they can be sucked down in to the 80% or zoom up, you just have to put your head down and do what it takes.
I have no interest in personal attacks and when venture capital demands open unregulated access to all the worlds resources at any cost its about good business sense under the current model, getting a decent return on investment. Even petty criminal Joe Bloggs down the pub gets that. Duh!
So from whatever standpoint you have personally taken to assimilate the truth that eight people ensure their survival by any means necessary, causing the completely unnecessary darkness in most peoples lives, and by most I mean all of us, including them, you have to admit that they tied it all up pretty darn tight. Touché, Kudos or whatever and far from being complacent about how it’s gods will (really?) or individual personal responsibility(ha!!) perhaps we could start seeing what is and how it really could be quite easily turned around.
Man made structures and systems can be dismantled as easily as mantled, and put back together to work for all, or well most, or at least with some compassion.
We are all magic, we are all giants, we come in pieces… Julia (yes me)
Growing up in a Christian country and family I am pretty cynical about the notion of saviours, but I’ve been realising lately that all the heroic big myths and motifs of life are possibly only the quotidian mortal efforts of humans writ large for effect. Most people I know can retell an event, or act, and embellish it beyond recognition, but still carrying the essence of its original truth.
The act of being a saviour can really be quite mundane, depending on the circumstances, however the effect of a kindness is as powerful, life changing and enhancing as the most famous sacrifices of any hallowed worshipped deity. Give your life for me?… how about just drop over a fresh batch of fairy cakes, or frozen lasagnes, a phone call to ask how you’re doing?
In the course of my life I have both been a sacrificing saviour to people in need and a bewildered grateful recipient of freely given help and support. Society doesn’t seem to respect this fundamental enough, because we have developed a system which rewards and aspires to perfection, independence, and solitary successes. I’m alright Jack attitudes, money for everything. Go large or go home.
The devastating effect on societies that don’t recognise community and free exchanges, social activism to safe guard against govt. and corporate irrationality, but instead replace them with exploitation and slavery is mirrored in the secret lives exposed by journalists and victims/survivors, whistle blowers and the brave. I’m disappeared, hidden almost underground, made into a dependent of business : Carers and NHS drugs.
Since becoming chronically ill I have come to feel the ethereal and spiritual essence of such acts of kindness on a regular and almost daily basis. It literally keeps me alive. My situation as bad as it may be is nothing when compared to other people, and at the same time is so much more than some, but these links to lives still being lived by others reminds me of the worth of my own life yet to live.
The psychological fear of annihilation, of whether you actually exist, whether any thing is real, the motivation behind eating, going out, talking to people is alleviated by the acts of recognition that I am a human, and someone, with a full life of their own, gets up, bakes cakes, or whatever and reaches out to me. Psychological and physical isolation acerbates these fears, and every article or medical assessment acknowledges that.
I recently listened to a podcast of person who developed DID (multiple personality disorder) after severe child abuse, and I began to understand how the extreme experiences of others can be more bio-available and assimilated into the everyday of my mortal human existence. She said that surviving her abuse and working it out with counselling and support has made her feel like she possessed a super power which is switched to good and she certainly has used it!
I have split myself into various roles, to a much lesser degree, but learned from her how the mind and body move in to protect and help you, she talked about one personality that would come in to do exams for her, as she was a perfectionist, and driven ‘A’ student, and then retreat.
Being a mother is real me, my earthly saviour, I recognise her face in the mirror, and the others I sometimes glimpse are caught up in my perception of the cycle of abuse, survival and victimhood which is how I think I became ill. Although I don’t feel able to halt the tide on my disease the deeper understanding of what is real; the on going exchange of my authentic being (not the damaged half wraiths who protect me) with my son, and others, is leading me back into the light, religious metaphors intended.
What’s the most important thing anyone can do for themselves? Eat Well and Be Mobile? However if you rely on traditional advice and the NHS you will be disappointed. There’s big gap between what I know I have to eat to aid healing and health and the food I actually get to eat. So 16 years into this chronic pathway I have last week begun a food prepping experiment, a little late if I may say so.
As I talked about in my first post Sleeping Beauty the relentless slog involved in cooking and providing food has lost its hold over me but I still need good wholesome nutritious food every day, three times a day and then pudding. This gives me the energy to get up, wash, tidy a bit and then do the important work of the day, my personal projects. Without food this quickly falls into disarray, well not only cos of food obviously, but definitely cos of food. So I made,( with help, thanks Ben,) and froze:
7* burritos, filled with scrambled egg, roasted tomatoes, loads of spinach, and little rashers of bacon. 7 *half pittas with falafel, spinach, avocado pesto, (pine nuts, fresh herbs, garlic, olive oil, avocado) and tomato sauce (homemade), 4* Rice with green beans, spiced pork balls, spinach and tomato sauce.3* Falafel, tomato sauce, spinach and r ice. 7 *small chopped veg bags, ( broccoli, onion, potato, peppers, courgette). 2* chicken breasts marinated ready to roast, sauté, etc. 10 *Muesli (nuts, seeds: chia sesame, pumpkin, sunflower, linseed. hemp protein, maca, lucuma, raisins, chopped apricots. Served as porridge with almond milk, or yogurt, plain of course. Or banana, plums, and berries.4* smoothie mix, tropical fruit, banana, ginger. (Spinach)24* mini fruit pies, with cream, custard, or whatever.
This was an experimental week and I’ve really learned so much. I’m refining the menu, and prepping a 14 day plan, to be cooked and frozen in 3-4 hours, with help again. The biggest lesson was that at my stage of illness or disease, food fuels me in real time, I don’t have the resources of the more robust or fit to miss a meal and this week has been a rare event in that I’ve eaten so well with no work , also less washing up and hardly any waste. I did cook when I felt like it, which was fun again. What stopped me doing something similar before was an emotional relationship to the stuff and bluster of the kitchen, of a something to do, a task to be finessed, enjoyed and shared. A purpose. Living alone with little energy has forced me to be more imaginative, to use my skills in the kitchen, and my knowledge of nutritious food, to be less fussy and more discerning about how I look after myself to the best I can. And finally giving myself the time to work on my projects. Not just dipping in my toe to test the water, finally able to jump right in and immerse myself in the ideas and passions, as they come and go.
………so whats the big picture here? No appetite.
that’s a problem not easily solved, drugs, depression, fatigue, loneliness affect the capacity to want to eat. All things which a chronically ill person contends with daily.
Some of my prep lies in the fridge and freezer uneaten, vegetables not prepared go mouldy on the counter top, days and days cooking and yet no closer to the YouTube promised 2 hour prep for 14 days meal. My personal projects ignored, my house in chaos.
So I’m accepting my fate, eating the best I can when I can, knowing its never gonna match the vision in my mind, I can’t forget cooking with love and eating in joy, sharing something nourishing, and when that can’t happen I’ll microwave a piece of plastic, and put the telly on.