Awareness Art - 'I was forever changed that frightful day.'

April 06, 2025

Awareness Art - 'I was forever changed that frightful day.'

'Like a winter storm,

but they tell me i'm fine.

Neurological.'

Awareness Art.

Awareness Art is a Collection of Ten digital images created at a time after onset of Functional Neurological Disorder and after i had completed Eight weeks of Rehabilitation through the public system. It was only through my persistence of self-advocacy that i was given the opportunity; it has been my only treatment thus far due to financial status.

I was given a website that outlines the symptoms when I had finished with the program to self-educate. At this time i was still mostly bed bound, my tasks were to walk to the toilet alone with assistance if needed, to do leg raises in bed and to have three minute conversations. Which in turn would build up my baseline and a threshold of tolerance that i could work with to build on, but it was still the early days and rest was the most important thing I could do. Things were done in bite sized pieces and my days were filled with pain and discomfort, void outs and symptoms i had no control over, my body would just fall asleep without warning or would fall into what I call the FND void.

During my moments of lying awake in bed, i spent my time on that website and learning about my condition. The written word I’ve struggled to resonate with my whole life, my experiences are concreted by an exploration via Art, this has been a theme throughout my life; in order to understand i must reflect via drawing and creating. I had to put a visual representation down of what I was experiencing in real time this offered a deeper insight into the inner workings of my new disabled body and it offered a time to feel it emotionally. Previously I haven’t used myself as the subject within my art; this is due to feelings of immense anxiety and my nature to try to hide to hard parts of myself. It doesn’t come from a place of being disingenuous it rather comes from a place of safety and also taught behaviors to not share my experiences as they may hurt others feelings. So for the first time I myself was the subject and while it didn’t feel great at the start it has turned into empowerment rather than fear based shame.

It was a difficult task to physically draw due to symptoms my eyes had big black chunks of visual loss, my eyes also tracked in a camera shutter sequence which caused dizziness and void outs. My body had internal tremors and external which meant that my hand didn’t work in a calm manner, i felt an overall sense of disconnection throughout my body, and my hand felt as if it was moving in slow motion as gravity became heavy. Time was also not very forgiving as I didn’t have a lot of time before symptoms would override my ability to do.

My partner had put my digital technology next to my bed; an act of love. Within the little moments of not being totally consumed and unable to do I drew, this was difficult to do my body wasn’t working with me, but i was determined to make sense of my symptoms and condition. I wanted my practice back it’s how I decipher the world and to have it taken away from me in such a hard time I just wasn’t going to allow that; I needed to process. Being born with a limb difference I had always adapted to situations it’s just something that people with impairments are good at, we tend to think of creative solutions to make things work for us so using technology was the best way I could do this even though it wasn’t my preferred option.

I used all of what technology had to offer, magnification, working with layers and able to remove them if they had mistakes and errors, and i had to use an amount of pressure to create these pieces with my hand due to the tremors my lines were not straight. It was hard; my hand previously danced was now rigid due to tremor, spasm and dystonia.

During my time at rehabilitation i was taught that they are trying to retrain neural pathways and tap into them in different ways that one wouldn’t expect for example the back door approach for example,

Walking forward I had struggle my gait was funny and I walked almost like a new born giraffe, so they made me walk side step and backwards. Utilizing all of the different pathways we use within our legs.

So when i was drawing i had in mind that it was a very strong Neural pathway i have had since childhood and i wanted to see if i could retrain and use that pathway as a part of my journey of rewiring my body. My hand has been trained to draw since a young child, as Artists we create a muscle memory much like people who work out and after periods of rest their muscles respond quite quickly to building muscle again. If I don’t draw for a few months my first few thirty minutes is a bit off and then the memory kicks in and I’m back again with my hand dancing with the pen and page. I strongly believe that within my dedication to relearn to draw and adapt with my new limitations I have recovered a bit better than I potentially would of if I didn’t have this pathway to work with. Recovery suggests that one is I remission, I want to ensure that I explain that the word ‘recovery’ for myself means managing my conditions and listening in when my body says to stop, I still have a lot of the original symptoms but some have slowly stopped or only revisit at times.

This collection is a self-study of Symptomatology of what i was experiencing in real time it was also used as a rewiring tool. I was building up my threshold of doing which in turn helped me have longer conversations and periods of decent cognitive functions. My bandwidth of tolerance slowly grew with the more art I did alongside low impact exercises at home that I learnt in physio, working with my baseline and pacing, it was a tool to utilize and a strong one.

I have loved the practise of working with real paper and pen, but i was not quite ready yet, technology was forgiving of my hand shaking and the visual issues. unfortunately within this collection what is missing is the overall experience of having such a quick and aggressive onset, within a few days span i was fine and then completely changed forever, it was not a slow progression it was a fast speed train crash. Whilst in hindsight i can now see that it was subtle signs that something was going wrong it was a very quick and brutal onset. It is very hard to put into words of how it felt and I think that’s due to the cognitive impairment at the time; in its simplest forms it felt like I was dying or between the veil of death and life itself. A feeling I’ve only ever felt when I birthed my three children naturally with no drugs, soon you hallucinate, nurses morph into other people and time slows down in such an eerie fashion, the searing pain of a child birthing, but it was now my brain and neurological system on fire.

The collection also doesn’t reflect the horrible treatment within getting diagnosed and how the hospital kept throwing me out with it chalked up to anxiety, i was told i was fine, i was just anxious and to get back on my meds. It doesn’t reflect the utter disgust from Doctors whilst i was having a seizure, and the Dr banging on my chest. It doesn’t reflect the times that they had said to me what are you doing back here you are wasting our time. It doesn’t reflect them telling me that my Gp could sort it out, however my Gp had no idea what FND was it was through my own determination to get myself the Rehabilitation I needed. What i learnt through my experience within the hospital settings is that they have an overall distain for Functional Neurological Disorder and we are not welcome, and due to this hospital gives me a sense of dread that in times that i should go, i don’t, i try to avoid it at all costs. This isn’t an individualistic experience within people who live with the same condition; they themselves have had experiences with horrible care. The idea that it’s a fake condition or the previous ties it has to conversion disorder severely impacts care and outcomes. FND is up for debate within the medical fields and both Psychiatry and Neurology have all varied beliefs about it, but it’s our lives and reality that is being impacted.

This collection also doesn’t reflect the grief i felt, the total loss of self, the loss of ability. Sudden disability comes with a period of grief of the former self that almost doesn’t feel natural; as we get old we yearn for the old abilities of a healthy young body. Old people talk about back in the day I did this that and the other and love what you have now because things get harder and harder, but to be young and then suddenly severely impaired is quite an odd experience. It feels like it’s almost out of place of the expected human experience? My partner picking me up and taking me to the toilet and showering me wasn’t something I thought would happen in my Thirties. And doesn’t show the emotional toll it had on my family and the fear involved with symptoms, there were periods of time i couldn’t remember who my partner was, he looked like a total stranger the FND void was heavy and a big life adjustment for all of us. My partner was now my full time carer and also looking after the house hold and the children all by himself; the great juggling act.

‘A massive storm came and uprooted our lives and the storm resided within my body; i couldn’t escape it or find refuge I could only look on and experience it.’

Tremor, Digital, 2022.

A drawing of two hands overlapping each other symbolic of one hand feeling like five hands due to the tremors and shakes. Visually it can become slight confusing if you try to focus on one of the hands, which a reflection of the eye issues i have due to FND.

Paralysis, Digital, 2022.

Two legs are disconnected as if they were cut, between the cuts is a foggy cloud symbolic of Paralysis, a symptom i had in periods along with gait issues and general weakness and numbness.

Tics, Digital, 2022.

A self portrait that has unsettling movements of pulling sensations that encompasses facial tics and spasms. Spasms, Tics and involuntary movements are however throughout any part of my body not just my face.

Speech Issues, Digital, 2022.

A mouth with black lipstick and a black fog of confusion coming out like breath. This is symbolic of the symptoms of varied speech issues from not being able to get the words out, stutter, slurred speech that can get confused for being drunk and also a reflection of word finding issues due to cognitive blips.

Persistent Postural Perceptual Dizziness, Digital, 2022.

A drawing of myself with a fog around my head with an eye that has a spiral loop this is symbolic of how the symptom feels, it isn’t vertigo it is a feeling one gets when looking at patterns or other stimuli, it is felt within. This symptom the world looks funny and you are dizzy however it feels as though your gravity is gone and you have no sense of being on the ground, i cannot find the words to properly express this symptom.

Non Epileptic Attack Disorder, Digital, 2022.

A brain is replaced by scribbles that reflect the complete overload and glitch of how a seizure feels; a complete scramble of the brain and a need for Neural Pathways to reset. It feels like all synapses are firing off at once and all systems are shutting down. NEAD in my experience is the symptom that is most hated within medical settings, the most misunderstood and the symptom that has the most stigmas attached.

Light and Noise Sensitivity.

A self portrait of myself wearing headphones and sunglasses reflecting the sensitivity surrounding stimuli, bright lights, patterns and noises. This symptom is quite overwhelming in Shopping centers and this sensitivity to stimuli will often create a snow ball of other symptoms such as leg weakness, seizures and void outs.

Functional Dystonia, Digital, 2022.

A drawing of a hand that is consumed by Dystonia, my hand would often lock up in this manner which made tasks hard to do and it causes immense muscular and neurological pain. Dystonia is also effects other areas of my body such as feet and neck.

Chronic Fatigue, Digital, 2022.

A self-portrait of myself slumped on the floor in utter exhaustion, a wind-up tool which is sometimes seen within children’s toys is on my back, symbolic of the no energy i had during onset, during flares and also during the days an ebb and flow that has stayed since diagnosis. My energy will feel fine then as quick as it comes it leaves. Now struggling to breathe, walk or string a sentence together, my body needs rest.

Aphasia, Digital, 2022.

The speech pathologist said that I have expressive and cognitive Aphasia-like symptoms and gave me a booklet of how to help someone living with it. A self portrait of my face being disconnected from my head symbolic of the disconnection i feel with my brain. It would be suggested that it is a functional issue that is a part of FND rather than a singular diagnosis.