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longer read pieces may be read in isolation or as a whole

alone?

For many years, my flat: its walls, furniture and inanimate objects, were the only things that bore witness to my daily existence and experiences. The fact that I could see and feel them told me I was alive. Bumping into a chair, leaning my burning body against a cool wall, running my hands along the material of my textured sofa meant I existed (and of course, that they existed too because they were borne witness to). 

It made me think about our relationship with our surroundings, the everyday things most of us don't give a second thought about; are we ever truly alone?

I would imagine not only all the atoms and molecules that made these objects possible to exist (and with that, the realisation that these objects we are told are inanimate and give little consideration to outside of possession and use, lets take a chair by way of example, are alive - after all it's the vibration of molecules and atoms that our brain processes and translates into a shape and then, through experience and the social environment we interact with, we give a meaning to), but also the many things that needed to exist for that object to exist: the elements, the sun and rain, the seas and wind, fire, the moon, air, land and soil, the tree, the animals and bacteria that co-existed with the tree. All the people and circumstances responsible: from planting the seed in the ground all the way to designing the chair, the packers, delivery person, the marketing, the technology, all the companies and people behind making the chair that I sat on possible. I went even further back: the survival of all ancestors, even electricity that needed to be invented way back when, the things and people that needed to happen to get to electricity being invented through to the internet being created for me to order the chair...right to my very eyes and brain functioning to see the chair and the society I grew up in that gave this chair a meaning and function. I thought of all these incredible events, people and natural elements that had to have occurred, for millennia before. I thought of the thousands upon thousands of hands the chair had passed through in all its forms of being and the families and lives all these hands touched each day, imagining their desires and hopes... All this I thought of as I sat on the chair to write this piece, in my home, alone, lonely, sad and excluded and realised the beauty of it all: are we ever truly alone? 

I often ponder every person, thing and event that had to have happened since time began for me to exist: the elements that had to come together to form life on earth - carbon, nitrogen, oxygen, bacteria and so on; I imagined everyone from my first ancestor to my parents; what they saw (from wars to the rising sun in the savannah); what they ate; who they loved; how they dressed; what they did (were they slave, warrior or leader - probably all); what their dreams and hopes were; what they grieved; who they loved; and realised I am made up of so many things. Of every ancestor through my DNA, of bacteria and other microbes that live in my body, of cells and elements that also make up all of the universe... 

 

Are we ever truly alone?

remembering

For years after the meningitis and encephalitis, I struggled with both short term memory (I would ask every 3 seconds in a conversation what we were talking about), found it impossible to recall certain events or things I had learnt from previous years as well as present moments. To my surprise (and wonder), I realised that my brain (or was it the body?) had adapted by anchoring memories of events, conversations and so on in different areas of my body - the top of my right knee, left upper arm, or a place in my stomach, by way of example. So although I may not be able to cognitively recall a recent conversation or event, I could recall it in its truest form by taking my attention to where in my body that memory seemed to have stored itself. My body was behaving like the brain.

 

The process (which took place in split seconds) was automatic, it wasn't something I had to force myself to do. If I had to recall a conversation, my attention was taken by an innate system to an area in my body to 'feel' the memory essences that were stored there. Sure, I couldn't recall a conversation word-for-word, but somehow, I knew with a certainty what had been said or had happened (as well as what had not - and certain people tested this on me when they thought I wouldn't remember certain things...) simply through feeling the essence of the memory in that body part...

what a wonderful thing we are a part of;

the whole self is a wonder I wander on.

read Anchored here

truth, illusion, perception

One of the biggest wonders that came from having a brain injury was how I couldn't 'see' an object that another person could. For example, I couldn't see a jug of water on the table in front of me, but somehow I could see everything else around it. Or I couldn't see the person standing right next to me, but I could see everyone else. 

I also started to see some familiar things as totally different, unrecognisable and brand new. My 'Kate Moss moment' is when I saw images of Kate Moss (spanning her entire career) but she looked like a completely different person to the Kate Moss I used to recognise. A completely different person. And this lasted for months (I finally understood right down to the cells of me the meaning of beauty is in the eye of the beholder and now think it fascinating, instead of taking it personally, when someone doesn't see the beauty in the things I do and vice versa).

There were times I couldn't recognise (nor remember the meaning of, no matter how many times it was explained to me) a specific word that had been part of my lexicon for years but could still understand other everyday words, not know how to put together the symbols that we call letters to make sense of a word and read a sentence but I for some reason I could make sense of the sentence (and words) that followed. That made me realise that the term 'stupid' to define someone who can't do or understand what we can is a stupid word.

Simple tasks were overwhelming; I couldn't understand what items of clothing went together or complete simple instructions to make a cup of tea.  I knew I wanted a cup of tea (A) and what a cup of tea looked like (Z), I just couldn't make sense of the steps I had to take between A-Z to get to the hot cup of tea. It was as if that the steps between A-Z had been erased from my brain. Literally just blank empty space. And this went on no matter how many times the steps were explained or shown to me. What made all this experience more fascinating to me was that I was very aware of all this and so able to observe my self through it all.

What I did find was that I could sense things a lot more. I found my intuition of sensing, rather than thinking. Probably because the part of the brain that used to be so busy and active with cognitive executive functions which made so much internal 'noise' and took up so much of  brain's work focus and energy was due to the inflammation, now quiet. For example, I could sense all the things people (whom I didn't know personally) were struggling with from their past (which were difficult for me to hold and not just emotionally, because of the brain injury I didn't have an edit button and seemed to speak every (unconscious) thought  - I had 'thought' tourettes), the journey of a piece of food (eg where it came from, how it was farmed, how it died / harvested etc) and I became very receptive to the needs of animals and plants. I even craved and binged on whole food groups and types of food for months at a time (at a level that alarmed everyone) that were later found to be precisely the nutrients I would need for some of the inflammation and symptoms I was experiencing.

Forming new memories of conversations and events was impossible but I could sense (and so remember) them in various parts of my body (very accurately). It's as if my body compensated for what the brain could not do, adapting by storing each memory in various places. My body became a memory map.

All of these experiences made me realise there was more to the whole of me - body, mind and spirit - then I had ever been aware of (more of that below).

 

Through such experiences, I became curious to explore the meaning of truth, in context of perception, agreed upon as a collective by the human species and truth as an individual experience.

I appreciate that truth/perception is a process of many layers at play (I am going to simplify here for ease otherwise this article becomes a whole book): there are top layer truths eg I like this, you like that, you think this, I think that. There is (for those who believe in) a soul layer, god /creation layer, ancestral layer, DNA layer. Then there is the human species layer and within that, the layers of biology, hormonal, bacterial and neurobiology truths. There is the gut brain and heart brain (search the internet for more on this). Then there are more outward truths and perception layers eg human morals, the structure of society and the way it is governed, social conditioning, education, parents, family, friends, books, media and so on, which are all important to consider in context when looking at truth and perception.

If we humans are all wired and firing the same way, and exposed to the same social conditioning and experiences, we can collectively agree when someone says this is x or this is how y works. There is a collective truth but, if my experiences are anything to go by, in no way is the collective truth an absolute truth.

It can be an absolute species truth eg humans in general (because of the way we are made up biologically, neurobiologically and physiologically to function) can agree there is night and day, sun and moon, mountains and sea and so on (again assuming we experience and see them) but does this mean that what we, humans, collectively agree on as all that exists, is the same thing/s perceived and experienced (if at all) by another species whose brains (or equivalent) work completely differently, who may feel, think, sense, emote, communicate differently?

I think it’s important to recognise here that all we know of in this world is because of our human brain (and I am not ignoring the role of spirit and innate instinct). It is the human brain(s) that has created machines, formulas, methods, ways of living, belief structures, rules and so on using its own capability of what it can comprehend (how it deciphers light/sound/energetic waves and so on). What it can comprehend is based on that which the human brain can tune in to, to make a sense of - and from this  humans create absolute facts about the world, universe, other species, ourselves etc.

The foundations of human experience of life on earth is only what it is because of the way our brain is wired and firing (and if there is a soul or equivalent, let me tell you from my own experience, it needs a functioning human brain to perceive and comprehend itself).  Perception. Truth. Illusion. What is what?

It intrigues me how many of us don't question that what we call fact may only be 'true' to humans (and, as we know, not truth for all humans) given they are created using the human brain's (current) ability of understanding and comprehending. It in no way means that this is/these are the only way things that exist, or that x only works /acts/ seems a particular way, nor that indeed the conclusion drawn is an absolute fact. It is just the creation of our brain that says when x happens, it means y (and the meaning can again have a different truth depending on our societal experiences). But we have to be open that we have no idea really how a bat hears, or an ape feels, or what a cat really sees when it looks at us; we are just piecing together information created from our own brain’s ability to decipher that information that it, itself, is creating and putting a meaning to. To make a sense of. We have to be open to the actuality that other ways of experiencing, being and existing that we can't sense or see or even comprehend with our human brain's capacity.  Am I making sense?

I was having practical and very real experiences, with myself and in relationship with my whole environment. From what I could see with my eyes, to what I could pick up through sensing (and isn't seeing another form of our senses?), to a deep wisdom and knowing in my cells and essence that helped me rehabilitate and this new found energy of me (gut/heart instinct/brain?). Because of these experiences, I have be open to the possibility that perhaps every human being is having a different experience of life compared to one another. Perhaps we each see things differently, understand the world differently and perhaps none of us is wrong (human, innate morals aside). Your truth is your truth, mine is mine (and I am not using the idea of 'my truth' here in a way to block someone else's opinion, or 'cancel' someone, nor close down discourse and claim I am right, in the way this term can be used by some).

I can only go by my experience of the world and so should you. How more untrue is someone who hears voices over you seeing a chair someone else does not (and if you grew up somewhere where chairs were never seen/used, and were suddenly presented with a wooden chair, you wouldn't recognise it to be a chair but possibly an odd shape of wood that you may think to leave discarded without any further interest)?

Who says who is right or wrong, normal or not (I deplore the use of the word normal - perhaps 'usual' is more apt)? Why do the illusions and agreements that create and shape your reality have to define me and mine? Why do we call someone 'stupid' when maybe their brain is just not made up to connect the dots in the way yours can? After all, a great composer can wake up, 'hear' the music in their mind for each individual instrument and write an incredible piece of music for an entire orchestra, whereas I can take all the music lessons in the world (and believe me, I've tried), and only be able to play on book. Aren't we all just using our brain's differently? We see another who looks like us (eg human being) and think we are the same but maybe we all just so very different?

Does this mean each of our realities are an illusion? Is it because we live in a world that is structured to use only a part of the brain and then in a very specific way eg only exercising that part of the brain constantly and being pushed and forced by society, our interaction, schooling etc that we are misled into thinking /seeing /assuming we are all the same? Mis-led into believing all of us are able to do, feel, change and comprehend the same ways? And when we don't, we are categorised as 'other', pathologised or labelled as less abled and, by defaul, seen as the problem, rather than society's expectations being the problem and too confined and restrictive to a (programmed) type? Aren't all our individual differences and experiences equally valid?

If anything, I have learnt that the brain is capable of doing much more than we realise because most of us are only using the same part of it over and over. A bit like going to the gym and just working on your arm muscles for your entire life. Imagine you've spent your whole lifetime experiencing the world from the ground as you scurry about on your hands (terrible analogy I realise, but I can't think of another, so bear with me!). What if you had to stop using your arms suddenly and find out you have these things called legs? These things that you were dragging around with you as you scurried but never really knew of or considered in any way. What if, once you get up on your legs (because you no longer have arms that function to scurry you around), you start to experience the same world differently, with new experiences that gave a new and different understanding and meaning? So where, say, you once scurried on your hands and lay under a flat roof with four posts, on your legs you see it is a something that items can be put on and find out some happen to call it a table.

 

Same world but different, right? So who am I to say you are wrong and I am right?

 

As Aldous Huxley once said, 

“There are things known and there are things unknown and in between are the doors of perception.

epilogue

We all face death at some point, though many of us act as if we won't. Some, in their effort to try to avoid the inevitable, end up acting in ways that bring death about sooner. If there is only thing we can all agree on, is that we are all in the process of dying. Sooner or later. From the moment we are conceived we are in the process of dying.

In the western world, we have been made to fear death and think we can escape it if we avoid illness and ageing (even in illusionary forms such as cosmetic surgery, wearing make up, the way we dress and dye our hair). In the city I currently reside, there are approx 10 million people, yet I can count on two hands the times I've seen a funeral procession in my 40 odd years (and for the majority of those, I was a mourner at). When my father died, most of my english friends didn't even acknowledge his death with me - in fact they did everything to avoid talking about it. Society here is structured in such a way to hide away actual death, whilst at the same time it actively promotes avoiding death at all costs.

 

When was the last time you heard people talk about death or saw a dead person? In Greece, as well as many other cultures, the body is laid out for 3 days for all to visit with a very elaborate period of mourning. Mourning traditions are a way to embrace not only the feelings of grief and the loss of a person, but also to acknowledge death, both as an individual and as a community.

My illness has forced me to face death in different contexts: literal dying in hours and weeks due to my health deteriorating was a possibility several times; the philosophical death of who I was as a person; the death of physical and cognitive abilities over and over; death of dreams, choice and hopes; the death of friendships; and also death through the contemplation of suicide.

 

The latter first came into my life as an involuntary image of my body dead from suicide which haunted me daily for three weeks and was a symptom courtesy of the encephalitis. I knew there was a real possibility of me acting this out as encephalitis can result in the sufferer acting out actions involuntary and suicide is a major one. This worried me hugely. I had fought so hard to stay alive since I fell ill, that I wasn't going to be beaten by suicide.

 

I have pondered suicide at various times over this whole period. It felt like the unwanted solution to the non-living life I was living, one where I was barely surviving and definitely not thriving. I desperately wanted a full, meaningful life - I have a fire in me -and I did not want to continue to live what felt like a living death, imprisoned by my own body and by circumstance. Being isolated and restricted in practical terms, in much physical pain and extreme fatigue daily, along with housing a brilliant, creative mind and super energetic soul that couldn't express itself or experience the wonders of the world, didn't seem to me like living at all. It didn't matter that I saw the magic captured in a grain of sand, or felt infinite, a part of not apart from something  that is not contained, that is, all of what is it is. What was so hard, so mournful, was not to be able to express, be, participate, allow the gnosis within me to commune with the gnosis in the world outside of me.

I grieved heavily, as much as I laughed deeply and loved boundlessly. I grieved at the sudden realisation (through the loss of brain and bodily functions) of all my incredible talents and abilities I had never fully realised, or appreciated, that I possessed all the years I was healthy and now were no longer possible. I grieved at the so many, too many, times in my life before I fell ill, that I had said no to so many dreams and opportunities because of fear – fear I would fail, that I wasn’t good enough or because I people pleased. I grieved at having the gnosis, the wisdom of all this now and not having the ability to show my gratitude to the gnosis, to my self, to the infinite, by living fully, without being conditioned by fear. Of saying yes to the things that allowed me to allow the inner to exist, 'yes' as a respectful bow to, the idolisation of, creation for the gifts I had been given and to say no to everything that would waste, imprison, kill them.

 

Don't get me wrong, I have lived a very dynamic life, saying yes to many opportunities that required courage, bravery and intelligence and to the outside world, I looked as if I was living the life of high achievement, seemingly fulfilling dreams and amazing opportunities. I was called brave and courageous by friends and colleagues alike. But what I now sat with, which I found even more painful, was the realisation that I had said yes to opportunities that weren't at all the ones I wanted or needed in my life. And they cost me a great deal.

 

I contemplated if, despite all the trauma, ignorant no's and mistake yeses, the reason I did so many things before I got sick (I had several high level careers, some even simultaneously, I was constantly learning or studying, participating in sports and had an ever growing range of interests) was because my self (gnosis, the inner knowing of all) knew at some point the 'I' would be spending many years on an unchartered journey of the experience of pure survival. By golly. 

 

So now, I felt I was being held captive by a cruel, torturous captor and as the years passed and my health deteriorated even more with crohns and ulcerative colitis (which nearly caused my death several times), there didn't seem to be an end to the sentence. I didn't want to die, but I didn't want to continue living this way. I fought, hard. I learnt to comfort and soothe my grieving heart. I cultivated patience and acceptance that I had to co-exist with this heavy shadow that refused to go away every morning and sometimes stayed all day long. I was so very grateful for my innate sense of wonder and wander, along with a joyful, creative personality and loving outlook which meant I could find the meaning of so much in so little and with very little. But every day I lived with a knowing that of more was being lost, worse still, confined.

 

I was curious with the times I had contemplated suicide in the years prior, when I was well, and how they compared to this stubborn fight now and wondered whether to fight for one's life when the choice to die isn't ours, is innate in all of us. I was also curious with how we were each choosing to live as we died. And this sobering question made me actually more positive: what am I giving my attention to? What am I putting off? What am I giving power over me and my sense of wellbeing? What thoughts and behaviours are limiting me? and so on.

I began to consider and ponder

what is life - what is death?

Simply words that we have given meaning to and defined in particularly rigid, constricted ways?

Just words?

Decipher this: sounds constructed first, symbols constructed into meaning, after: words.

Words, human constructs to make sense of

an experience of, 

we need to make it all make sense as the experience

feels so

senseless (how inadequate a word when our senses are alive!).

But 'life' or ‘death’ are not seemingly the autonomous processes we have created them into meaning. Life and death cannot exist without the other. Are they not one of the same experience of

that which we call life: existing is the experience of a particular form on this earth, through the action of birth? 

 

And what is existence (or as some have pondered for years, the meaning of life)?

 

I don't have a definitive answer, but through my own very real experiences, I am open to several possibilities. What if ‘existence’ is akin to a gap year equivalent for the soul, or energetic form, or essence of love, (or whatever you relate to or don't but please come along for the ride with me here) experiencing itself? And let's assume we agree, will this energy continue to exist in some form before and after this current trip in this body has come to an end?  Does death birth the form of travel to each destination / the travelling back to wherever it is it originates from? If that is so, for some energetic/soul forms who have bought several round-the- world trips, this genius madness in the genes-is method will take them to their next gap year vacation. 

 

Maybe our human existence is purely the body to assist non-terra beings experience being on this planet.

Maybe we are all just a species of ape who have been genetically modified to store other beings’ memories ad finitum - their version of living on forever... [and consider that perhaps our genes/dna which is a way for all our ancestors to continue living in some form through genes(is) as long as we each procreate and even if we don't, their genes, if not our version, are continually living on through other distant relatives].

Maybe we are all just someone’s metaverse construction.

Their diversion from who the fuck knows what.  

Or maybe the meaning is meaningless, things just are, the matter is all that matters and I'm writing a lot of bollocks.

 

Is it so difficult to imagine any one of these possibilities?

Whatever you believe in, let’s stop talking in terms of life and death in such a-nihilistic, fear-led ways and embrace it in all its glory by embracing all that we are and have today.  

 

The question to ponder is: how are you choosing to live as you die?

You are more, what is your more?

read An Ode to Death here

disconnection

It is easy to become isolated as a result of having a serious or long term illness. One becomes disconnected from self, society and the many facets that inform their identity and sense of usefulness (and worth).

 

You lose skills and choices to participate in the world, you lose your job and career prospects (and the financial stress, in itself, adds another layer of disconnection through lack of choice). You find that you can't participate in hobbies or interests, the many friends become few or none. Maybe you already don't have a partner or close family nearby, or at all. Dreams that energised and focused you to work towards reaching a goal, help to express you in this life, become something you aren't capable of or worth contemplating. The grief of the loss becomes too much to bare and the ever increasing loss becomes traumatic.

In addition, your relationship with your own body is challenged and changed. You lose not only some physical ability but also, more importantly, the trust in your own body. Along with the constant, intense physical pain, you are forced into disconnecting from your body eg you can't feel the right side of your body, or in order to cope and function, you have to push past the crippling pain and symptoms and disassociate, whilst being driven by it all. All the whilst you begin to identify as the symptoms of the body "I am sick", "I cannot remember", "I am swollen joints", "I am an intestinal bleed" and so on. This is further reinforced by medical professionals, which for me was most of the only human interaction I had in the early years, who only identify you in terms of the illness or the symptom/s.

Depending on the illness you are facing, you lose the ability to do practical things that a basic human such as go for walk, get to the supermarket, cook for yourself, dress and as in my case, even the ability to navigate and understand the micro world you now inhabit.  

 

Goals quickly become about surviving not thriving.

On top of this all, you face energy levels being significantly diminished as the body does what it can to keep you alive and manage whatever attacks it's facing, along with the brain struggling with juggling the many balls to keep you functioning. Invariably, the brain will drop some of the less important balls that it does not find crucial in a given moment (spatial awareness, motor skills, comprehension, short term memory, reading, keeping your body temperature stable, comprehending signals from other organs telling it what they need and so on) and uses up all the energy in your already depleted energy bank for basic survival. So now you can't even hold a cup of tea, let alone remember how to make one.

 

Think of it as the equivalent of a person being forced to run several full marathons a day, unless you're an ultra athlete, it would be exhausting, depleting, damaging. Incapable of functioning for a long time after. This is what it's like for an injured brain and body trying to keep up with the automatic functions it has to do, let alone extra ones we add. Everyday activities are reduced to simple survival and existing. Forget cooking a nutritious meal or watching a movie. Your brain can't even keep your body warm when the room is cold.

 

When the brain is being asked to follow the steps to make a plate of food (from the what, to the how), alongside managing pain or other major health symptoms, it's going to drop even more balls. Maybe you can't understand how to boil rice. In between putting ingredients into a pan and onto the stove, you decide to begin the task of ironing a shirt - in hindsight you have no idea why as you don't wear the shirt. And then maybe you burn your stomach ironing because the brain can't distinguish in that moment where the shirt ended and your body begins. So you go to tend to the burn, whilst you leave the iron resting on the shirt, and then you see that a pot of rice has burnt on the hob, and you cant understand why you forgot you were cooking nor why you can't smell the burning. If you manage to get food onto a plate, maybe you put that plate in the cupboard, food and all, with no recollection of doing that, or that you haven't eaten for hours at a time. You learn (mostly forced by the brain and body itself) that in order to reduce symptoms, stay safe and aide the healing of the body and the brain, you're gong to have to reduce the number of balls you ask it to juggle.

 

You begin to get creative with trying to find ways to cope and heal what you can: being in silence and darkened room for much of the day (with a brain injury, any noise, even conversation, let alone the sounds of traffic, coffee machines and so on is disabling), with no screen time, conversation or thinking (not that I was capable of much of these anyway). Focusing on staying safe, eating to heal, breath-work and meditating, managing pain and trying to walk in a straight line without falling over or bumping into things, become, over time, the balls you can manage in small chunks. The rest of the time you are a frozen zombie staring into no thing for hours at a time. Flat out on your back. There is no choice or capacity to dream, and any capacity you do have, is focused on surviving; reaching limited goals based on simple functioning as opposed to thriving. You survive and don't thrive.

 

Needless to say, you are also dealing with a huge and complex range of emotional exhaustion and grief from the ongoing loss and relentless experience of it all.

Isolation, disconnectedness (from self and the outside world) and the constant relentlessness of survival can start to impact the feeling of being love/d. If you're single and family-less, not only are you not receiving care and love from anyone, but you are robbed of the opportunities to express love to any thing or any one, isolated from being in environments that are love / loving or fulfilling in a way that create a feeling of love inside.

By oxymoron, my experience of forced disconnection brought me closer to love, joy, connection and finding the gifts of being. Through the loss of who I once was and what I was able to do, I found the brilliance of who and all that I am. Through the long term isolation and being unloved by the world, I found a friendship and love with my self, with nature all around and things in my immediate environment. Through not being able to wander out there, I found the wonder in here (me) and a connection to the world I could access from my flat - the moon, the sun, the wind and rain- along with my imagination, creativity and so on (see alone? below). Through grief, I found the beauty and strength of my resilience and the understanding that grief and gratitude, love and loneliness, laughter and tears can beautifully co-exist.

Through losing the world, I found my self. 

read the Moon and Me here

Diary of a good ‘bad’ day

 

AM:

4.15 Wake up fully alert and belly hurting, head feels like it’s going to explode from a pressure like and numb pain feeling – like pins and needles in a balloon that is being pumped full of pressured air

4.18 Toilet **
4.30 Back to bed but Brian* is being creative and wants to play

4.50 Toilet** – starting to feel wiped out

5   Brian is still wanting to go play so I give it the attention it needs to create whilst it can sensing in a few hours I will lose to it. Start to try typing and jotting down notes...getting words wrong and not understanding what I’m writing or trying to say. I will not be beaten. Persevere.

5.30 Toilet**

6.35 Toilet**

7   Head still hurting, now pain has spread to the whole right side of my body, can’t open door well or hold the kettle easily

7.15 Keep the blinds closed in the living room – my eyes are super sensitive to light today

7.30 Nausea is intensely exhausting already today

7.40 Toilet ** Cramps are coming in waves, like someone is pulling and twisting and stabbing my intestines all at once.

8   Walk into the door frame as I don’t ‘see it’

8.30 Shower

8.40 Back in the shower...forget to wash the conditioner out of my hair

9   Can’t manage to blow dry my hair – seems like an enormous cognitive and physical task and the noise is too much. Give up.

9.15 Try to work out what to wear, matching outfits are beyond my comprehension today. Decide to wear my go-to uniform of baggy trousers and a jumper

9.20 Toilet** (i see blood but for some reason i don't worry...!)

10  Remember to brush my teeth, even though I walked past my post -it reminder a dozen times this morning. Notice my eyebrows need shaping and my nails a manicure. Yeah right, way down in the priorities list. This annoys me slightly.

10.10 Try to write for the book, words are meaningless to me right now, not sure how to say the thoughts that I can’t even put together in my mind right now

10.10 Pain in body, head and nausea keeping consistent – at least one thing is

10.15 Right eye vision is fuzzy again today, making it hard to see clearly

10.20 Toilet** (blood again)

10.30 The exhaustion is crippling – literally feels I’m climbing a steep mountain with each step I take around my apartment.

10.45 So foggy brained I realise I am in and out of being present

11.30 Noise from drilling in the flat 3 floors down is penetrating my apartment in every room – have to wear noise cancelling headphones in the house.

11.45 My to-do list to contact the doctors I need to and personal admin is daunting, I can’t even manage to structure a thought clearly, how will I communicate orally?

 

PM:

Midday – make a call, my words are so unstructured, I am grateful I can voice that and that they give me the space to not make sense and still make sense. I can’t face having to talk again today. My to-do list gets longer.

Although grateful to friends and social media, I am getting resentful with each message – not because they are connecting with me, but because I cannot respond back. And I so want to engage. I miss them, I miss having unlimited choices.

My head pressure with numb pins and needles is overwhelming. I’m tired of being tired

I’m tired of the eternal internal body noise of all the symptoms – I call it My Orchestra – a symphony that is a cacophony of symptoms underlying all my being, each moment of each day.

I miss the silence of my body before Brian’s injury and crohns clingy friendship. Who knew there was so much noise to be had inside!

Feeling useless. Irritated. Angry. With myself. Finding the notes of compassion.

1 Eat some fruit – can’t manage the idea of putting together a meal

1.30 Toilet**

2  Noise cancelling headphones and sunglasses on, I slowly walk to the supermarket, get confused as to what route to take, get lost and with all this and the pain slowing me down, it takes me twice as long to get there.

2.35 The pain is unbearable, the choice and noise is overwhelming, I don’t know what to buy and can’t understand the words on my shopping list. I feel fed up with everything and like a prat that I’m having to wear sunglasses in a supermarket to protect by eyes and Brian. On top wearing the headphones. Today is not a day I am wanting to be challenged by people on the way I look. I see the looks I get by some, usually I don’t notice, or make a point of not noticing, and really hold my head up proud because I am doing my best and damn if they only knew half the story, but today, today, I’m feeling a lot tired and a little beaten.

I bump into people and am unsteady on my feet.

I suddenly feel I need the safety of my home and my legs can’t carry me, so I leave the supermarket, get into a cab outside, hand the driver the card that states my address as I can’t communicate it and head home.

3  The Orchestra is reaching full crescendo. I crash on the sofa, shutting my eyes, my body, hearing and Brian is alert but I fall into a Brian fatigue non-sleep sleep for 10 minutes and find I cannot move much for the rest of the afternoon.

No TV, no radio, no reading a book to pass the time, no lunching with friends or shopping. None of the stuff people think you get up to when you are at home with a chronic illness, particularly when you have a brain injury, crohns and CFS.

Reluctantly but desperately cancel by text going to a friend’s birthday. Feeling really frustrated by this now. And very isolated.

6  Manage to heat up some porridge and eat a bag of nuts to get my calories and fat intake up. Not so great for my crohns but it’s the best I can do. Realise I still haven’t brushed my teeth.

A friend texts me to remind me to take electrolytes – thank goodness for small miracles.

8  Manage to put on a series to watch. Not understanding much but I try to see what of it I can recall as I go along, and little details too like “what was character x wearing in the last scene”, “what were they talking about”

10  My go to bed alarm goes off...I ignore it...
11  I manage to get to bed, the orchestra deciding it’s time to decrescendo


*Brian = my brain (the result of the creativity of a brain typo) and is a world class conductor

** Crohns related

the point of it all?

5 years after my meningoencephalitis I was able to write more than a list of words.  A word here, a sentence there, with camera capturing my relationship with the world, myself, the spirit. Ways for me releasing what was inside, of having the pen and paper, a photo, bearing witness to my experience and life each day. It was my way of communing with the world around me, allowing me to experience the love I had inside, fulfilling in some way my intense need to relate with something more, to be creative, to feel alive, to be more.  

I never intended to share it all so deeply, so publicly. I am protective of the experience I've had since 2015, of my heart and whole self. I have been through enough. Its been relentless, and this warrior is battle weary and in need of rejuvenation, not giving more of herself. With no family or anyone permanently there to lend a hand, to bear witness, and I didn't want to share my whole experience, give all of me, share all of me with strangers any more...particularly when no one else was sharing themselves so intimately with me. It is emotionally and physically exhausting to share one's whole self, mind, body and spirit for so many years. Questions from medical teams such as what I ate yesterday, when I last had sex, the dozens of continual biopsies of my bones and organs, having over 400 vials of blood samples taken, forced to explain to complete strangers that I need assistance because I can't do x or y, or to justify why I am not thriving in a career or relationship to a new friend, to be judged by others 'as not good enough' so you're no longer invited out, to a friend's birthday party, not considered good dating material because you can't go on hikes or hold down a decent career, or because you have an ileostomy bag and have just spent the summer holidays in ICU, having life saving surgery and recovering...it has felt so one-sided for all this time.

How would you feel to have to tell a complete stranger your most intimate struggle in order to gain access to a loo, or to explain to a new friend why you can't participate in a social event yet again, when they share nothing as intimate (nor is it appropriate to) back? Over and over again?

Equally, how can I express the magic of this grand adventure I've been on?  The sheer cell-based memory that came into being with the loss of cognitive memory and executive functions, the strong, gut-based instincts that formed my rehabilitation and recovery and understanding of my existence? How to portray the exhausting and fulfilling repetition of how I taught my self to: walk in a straight line, to not fall down putting on my shoes, to 'see' and recognise walls, doors, oncoming traffic, write and recognise words again (which also involved sitting with a dictionary and book for hours each day just staring at the pages and having faith my brain would remember to read and comprehend once again), remember the thread of conversation I was having? How could someone understand how having lost my sense of smell and taste for several years, I would imagine eat time I ate the smell and taste of each bite to regain my sense of smell and taste, or sit for hours at a time sniffing essential oils, imagining their smell, over several years? And then the sheer joy in regaining them because of all these things I did with complete gnosis, utter faith they would change? How to relate the experience that having half my brain shut down/inflamed led me to experience other parts of my brain that I never even knew existed, giving me an intense relationship with all living things, leading me to question the reality and validity of facts and truth and of all of our individual experiences, query why society called certain people crazy and mad? How what happened changed my perceptions profoundly, with the experience that we are not all alike (even though society tells us otherwise), pondering on truth, illusion, perception, beauty, faith and hope, on whether we did indeed have a soul or if there was a god if I couldn't engage with 'god'/'prayer' due to the brain injury and wonder if these were concepts and constructs of the brain or if the brain was the vehicle for the soul / god etc to understand and experience itself, whilst at the same time having experiences that were miraculous and out of this world and made me believe, time and time again, that there is something bigger, constant, powerful, which we are a part of.

So after years of being asked over and over to consider publishing a memoir of my experience and always dismissing it, of being told by other meningoencephalitis survivors and chronically ill people hearing my story helped them, I decided I would share snapshots of my experience. On my terms. It would have to represent my truth in how I see and relate to the world. It had to be expressed in my personality, my voice - its quirky, abstract, disjointed, vibrant, multifaceted, curious ways.

 

I realised as I looked through my body of work, that every piece of writing, photo, storytelling, support group, activity and project I been creating and developing  had one uniting theme: making the invisible visible.

The larger collection (not all of it is on this website) is part memoir, part resilience and adapting tools, part neuroscience, part biology, science and health, part spiritual, part philosophical and a healthy dollop of humour reflected in various forms. 

I cover fear, loss and grief: of one’s self, body and brain, memories, abilities, friendships and familial ties, career, financial, home security, personal safety, goals and dreams and highlights the struggle to survive in complete isolation and live a state of forgetting and confusion.

I raise questions on why and how just because everyone looks the same ie two hands, head, legs, torso, we expect one another to think and understand the world in the same way, even to understand our point of view, when we are, in fact, all so very different because of our personal gut microbiome and our neuro-wiring firing in unique ways (not to mention societal experiences).

I expose a part of the brain that not many are able to use without the use of psychedelic drugs but I seem to have had awakened because all the other functions that usually overrode that part had been damaged, discuss the possibility of parallel universes, consider our sense of spirituality and the role the brain has on this experience and that of being a human: of how the world truly is how one literally and practically perceives it with their eyes (brain). I discuss how through breath work, resilience, meditative and visualisation based exercises, the role of food and understanding of brain, body and the link to nature we have, that ways we can aid the health of our brain, heart and body.

 

I hope, at the minimum, all I've shared here, helps give those with invisible disabilities (in particular, those with an acquired brain injury, autoimmune disease and CFS/ ME) and chronic illnesses a voice. To know they are not alone. There are 11 million people in the UK living with a disability and chronic illness. 93% of these are deemed to be ‘invisible’ or not wheelchair bound. There are 348,000 people in the UK living with an acquired brain injury (ABI). The number of women having an ABI is every increasing year on year.

I hope what I have shared will help carers, whether professional or family, understand their patients and loved ones better. I hope what I share informs the general public about the challenges one faces living with life changing and invisible disabilities. Even more amazing would be if it helps drive change in services, policy and the benefit system in the UK.

 

Perhaps it will be a guide to ordinary people about the importance of brain health and help them understand how much damage we are doing to our overall health by adding more balls to the already loaded ones the brain is already juggling. If there is any take away from all of this, it’s that people can do little things in their daily lives to maintain or prevent brain deterioration and like a ripple effect, this will have positive outcomes on their overall health and life choices. Whether its spending more of your day in silence (eg you can work on your computer or text a friend or chat on the phone but do it in silence and then take healthy screen-away breaks every 55 minutes), exercise mindfully not with lots of other stimulus eg music blaring and scrolling through your phone, stick to focusing on one task at a time, work out a sleeping pattern for your needs, choose foods to eat with purpose, think kindly, reduce over talking, over thinking, less exposure to false light (particularly flickering and LED), and get physical and outdoors in nature. Learn new tasks that challenge the brain and body to communicate and wire differently even if you are 'bad' at those tasks eg learn a dance, percussion drum (even just tapping your hands and feet at different combinations), play the keyboard, breathe well and with wisdom, go to an improvisation class, learn to surf, play chess, do suduku sitting on the loo, allow yourself to dream and day dream, have a session of NSDR in the day...any action that makes the body and brain go 'you want me to what now??".  

Through my collections, I hope people will be able to understand, even for a short moment in time, a little more about the world that those with serious and chronic illness inhabit, to wonder as they wander in life with curiosity at what comes their way, become alert at the power of their body's capacity to heal and cope, the power of their heart, the mind's incredible adaptive ability to deal with grief and struggles, to be in awe at how resilient and creative we all are, to take care of their brain and body health, be more tolerant of 'others', and add some relief and joy when realising their life journey is a gap year for their soul.

 

You are more, what is your more?

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