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Untethered and Open for Business

Diversion ahead

This is the road I walk along as part of my rehabilitation following a left parietal ischaemic stroke on 2nd April 2022. It is a date I will never forget, a day when my life as a knew it would come to a stop. Today is 4th July, 2022 and I feel ready to restart, and continue with lots of reflection, soul searching and indecision. When putting one foot in front of the other was literally the hardest it had ever been since learning to walk, at first I felt so overwhelmed with the changes to me I couldn't see a pathway to tentatively step on to.


In this blog post I want share my journey with you, my reflective thoughts on my experience of being an artist, the arts, and developing an arts practice. It is also me saying, "HEY, I'm still here and I'm ready to take on small commissions. More of that later. This blog may end up being a bit long and winding, or it may stop abruptly. Either, or, both outcomes will represent my current existence. I don't want to write it in bits and pieces, or spend hours agonising over poor grammar, missed out [works] words, poor structure, and bad spelling. I want, I need to write in a stream of conciousness, in all the messiness that is my reduced cognitive ability, dysphasia, dysgraphia and poor concentration. Some errors I will spot as I write, others will get corrected automatically. I could type it all in word which has a better grammar and spellintg checker and then transfer it over here to this blog. (^)I will edit where the sentence construction makes no sense. Afterall I do want you to understand what I'm writing). You might we wondering why I'm not doing that. For me this is a part of my journey, a record of where I'm at, as much as it is a sharing of it with others. Thankfully, typing is easier for me than writing with a pen. I'm a fast typist, whereas when writing with a pen the disconnect between my brain and the act of writing is more pronounced. If I was being payed to write I would, of course, put in that time to check and edit, but this is my space so I can do what I want with it! That fact I can even string a sentence together, no matter how messy sometimes, is in itself a huge improvement.

This is something I wrote on the morning of my stroke. I desparately wanted to brush my teeth because I knew the parademics would ask me to stick out my tongue! Odd the things that pop in your head during a crisis. Unfortunatley I was unable to speak anything other than gibberish. It's a weird feeling when the words are in your head, but when you open your mouth utter nonsense comes out. I tried pointing at my mouth but kept missing so my daughter gave me some paper and a pen. At this point the disassociation from my right hand side was still fairly minor. I couldn't hold the pen how I would normally, and of course, when I started to write "I want to brush my teeth" (^) it still made no sense. How my duaghter guessed what I wanted I have no idea, but she did, thankfully.


I confess there is still a feeling of mortification when I make a mistake. The first time I tried to type some text I broke down in tears when I read it back. Writing has always been one of my strong skills. To suddenly be unable to write or read at the level I did previously nearly broke me. Who was I if I couldn't communicate? There are multiple stages of grief and I am grieving still for who I was and where I was heading prior to the stroke. I am still me but sort of different now.

The only way I know to make sense of stuff is through the production and process of art and writing - note, I actually include writing as an art form. It was a fair few weeks into my recovery before I had the confidence to try and write again. They were words that came to me as a lay one day, in my bed, utterly exhausted and feeling defeated. I recorded them on my phone so that I could write the words out slowly. I can't remember how many times I wrote the words out before I was able to type then up accurately. It was a number of days later before I put together a collage, from the mass of exercise sheets and medical letters, that (^) I keep in a folder that had been bought to hold research for my Masters.


I did draw a rather sketchy sketch to try and represent the moment I realised something was very wrong. Being stood at the top of a flight of stairs isn't the best place to realise but I thankfully made it to the bottom hanging on to the bannister and the wall. I finally sank down on the bottom stair. Much of what happened at the point is still a bit of a blur. I know I tried to shout, I apparently screamed. Nothing like waking the household at 7am screaming to get everyone running to your aid!


I hope you never exeprience a stroke. The sudden inability to communication and the disassociation from parts of your body is both fascinating and freaky. I wasn't frightened though, I think I was too confused to feel scared and at that point I thought it would all pass and I'd be ok in a few hours.


The before and the continuing

Somwhere within the body of the beginning of this blog, I think I mentioned I've been reflecting on who I was as an artist, the arts, and developing an arts practice. I have also been reflecting on who I am now as an artist and what developing my practice looks like and might look like as I work through this recovery process. It has definitely been a journey of discovery as I've tried to stay true to myself, whilst also attempting to fit in to the narrow avenues open to artists facing disadvantage. There have been times where I have rallied against the system and organisations in sheer frustration. I have genuinely considered stepping away permanently from pursuing my career on more than one occassion, never more so than in the past few months. Sheer will and determination can be too much to sustain. As yet, there are no medical signs as to what caused my stroke, I personally feel it has been brought about by prolonged stress. The stress of trying to develop an artists practice, been productive, keep moving forward, and continuously fighting for change, whilst living with a hidden disability, in the middle of nowhere.


Prior to my stroke I was in a strong position, on paper. I was getting commissions for art work, art projects and writing. I had been accepted onto the board of the Coventry Biennial of Contemporary Art. I maintained a strong relationship with Coventry Artspace (who had given me a year long artist residency in 2018-2019), as a member of the advisory group. I'd begun my Masters in Art and Education Practices at Birmingham City University. Through the lockdowns I'd created, developed and delivered an artist development initiative, Speedy Crits, giving an opportunity to artists to

A close up section of the artist development game Navigating Disaster. A blue background with green area containing square and triangular game tiles. Two piles of game cards sit on the board.
Navigating Disaster. Created by Helen Kilby Nelson and Janet Tryner. Image credit Janet Tryner

continuing connecting, sharing and developing. I'd been selected for online residencies, leadership development opportunities, co-created and developed two artist development events for Coventry Artspace, had work selected for various online exhibitions and presented at events and become a citizen and then co-curator of the Parallel State. I was doing what I'd set-out to do, to be a multi-faceted arts professional. My goal was to be at a point where all these elements of my practice didn't just compliment one another but also provided me with a regular


income. I'd met that goal and although there were snags and elements I knew weren't working, my year at BCU studying my MA was my opportunity to shed the dead wood. Actually, dead wood is a bit harsh, as I don't believe there is any dead wood in my practice as it has developed. I should have explained it as, having an opportunity to better understand my role as an artist and how that would manifest in a way that was both sustainable and healthy.


I made it through the first semester, gaining two distinction grades, and half-way through the second. Prior to doing the course I hadn't considered myself an educator, but could seen how the work I had been doing with the creation of artist development events and games, fitted with the study and outcomes. I could also see how my work with communities synced with, a holisitic

Images shows a green origami chatterbox standing upright on a pale surface. The hand written words, Sound is on the left of the chatterbox and Taste is written on the right.
Chatterbox Art School (2021)

sharing of knowledge and skills that aligned with methods of alternative education which aren't alternative because they have been happening for years. We only have to look at socially engaged art practice so see examples of shared and collaborative education that sits outside of the traditional methodologies. The work shown here is an art school that can be taken anywhere you go. It can be shared with others or by oneself. A few movements gives access to different provocations. Click here for more information about the Chatterbox Art School and my academic text and website that asks "How can we reclaim existence and actively abide in parallel states in a way that facilitates being?", Abiding as Activism.



So, as you can see, things were going well. Except they weren't really. I was relatively calm on the outside, meeting my targets, fulfilling my commitments. There were odd moments where the stress would seep out and I'd react badly in a situation, or not give my best. The truth though was that I was burning out, again, I wasn't resting and was constantly doing. I felt trapped by all these different commitments I'd agreed to and was counting the days to when some projects would be finished. I had one of my larger projects finishing in May, of course other events forced my direct involvement with that to end early. I was questioning my ability to be present at board and advisory group meetings. I was frustrated that I wasn't making art, in the sense of creating something to be experienced, looked at, exhibited. The work with communities was causing my anxiety to sky rocket. Imposter syndrome was kicking in big time. Did I speak to anyone about this? Of course I didn't. Fear of failure or being seen as a failure has prevented me from asking for help my whole life, in the same way giving up when something isn't good for me has always felt impossible. I'm not ashamed to admit that a lot of this denial on my part was down to money. Yes that ugly word. I couldn't afford to not be doing all these things. I was working towards being self reliant, being able to stick two fingers up at the DWP and not have to report to them every month, to being able to put money aside for my freelance business. I wanted to achieve this by 2024 and begin a PhD. All whilst feeling a loud ticking clock as each month/year passes and I realise I have already 'lived' for longer than I have left to live. No time to waste Helen.



A blue eye sits behind a thistle and dandelion clock.
When is it time?


The first lockdown during the pandemic was an opportunity to slow down, reflect and be. I foolishly didn't take that opportunity. Perhaps I was too scared to find out what I'd discover if I stopped? I did however have the opportunity to throw my hat in the ring of fighting for accessibility in the arts. It saddens and frustrates me that the arts (in the main) has so quickly run back to the old normal instead of embracing a new way of doing things. How can I judge them though when I have also tried to do the same? I had access to many more opportunities during the lockdowns and inbetween, than I had ever had prior to them. It's easy to blame the organisations but I believe most of them are doing what they can within the confines of their circumstances. Yes I want to shout when I see ever decreasing online opportunities for networking, residencies, symposiums, exhibitions etc. "HYBRID", I shout at whatever screen I am viewing the details on. Instead I began to use my MA to look at how we need to less reliant on and expectant of institutions and organisations to do right by us. I have made some pretty big cock-ups as I've developed my practice but I have learned so much from everything I have done. I've learned, and it's taken me a long time, despite many wonderful artists guiding me towards this; I've learned I need to find those opportunities that I can access and if I can't find them I need to create my own. Yes, yes, I know, I know, it is definitely not that simple! Hear me out, this is multi-layered and this blog will become even more un-wieldy if I try and address it all here. The opportunity that suits me may not suit you and vice versa, a strong network is still essential to stand any chance of pushing forward with self initiated/created opportunities and I am, now more than ever, aware that networking can be a huge barrier to many artists. So we come full circle, to be self organising, self sufficient, self reliant, requires collaboration and connection and networking. I'm still working on this!


It's the same when it comes to being true to yourself, however you may interpret that. Be honest, if you're chasing

A face hidden my a mask of alumium on a black background.
"I Apostrophe S" (2021)

opportunities and being successful in being selected (residency, exhibition, etc), has it really been by staying true to yourself or has it been to ensure you still get work - enough work? I've had an artists practice for 8 years, and 4 of those have been under the umbrella of 'socially engaged', yet I have never, ever liked that label. I am not particularly sociable, I prefer my own company and find being with groups of people exhausting due to social anxiety. There is only so much people(ing) I can do in a week when I factor in the anxiety leading up to it, the tension and heightened senses during it and the chronic fatigue that follows it. So why have been doing it? Bloody good question!


Let's fast forward now to the now. If I'm not going to waste the opportunity that 'time out' has given me, now is the time for me to be honest with myself so that I can be true myself.

  • Do I still want to work collaboratively with other arts professionals and communities? YES!

  • Do I still want to make art, curate and write? YES!

  • Do I still want to sit on boards and advisory groups? NO!

  • Do I still want to complete my MA? THAT'S A PROBABLE MORE THAN A POSSIBLE in 2023.

  • Am I (a) an artist/curator/writer or (b) an arts administrator/project manager (c) both? I was C and now A

  • How do I do this in a way that is sustainable and good for my wellbeing? IT BEGINS NOW...

I don't know what the future looks like, but then none of us do. I don't have a set plan because I've learned plans always get interrupted and can't be set, unless they are made from something like jelly, but then that's no guaranteed. I do know I want to continue developing as an artist, curator and writer. I know I still feel strongly about speaking out about inequality, across society and the arts. I know I need to start with small projects and I need to play again, play with materials, objects, images, words and sounds. I need to finish things I didn't the chance to thoroughly explore. I need to stop putting pressure on myself. I need to enjoy being alive now and not at some point in the future.


So I'm open for business again. Open to accessible opportunities that do not require me to leave my home. I'm working, I'm writing but I'm not actively searching for opportunities, too many of them require more than I can give in terms of where they are, how to get to them, how visible I need to be. I'd love to get some art, writing or speaking commissions. This is huge because my confidence has been hit pretty hard when it comes to writing and speaking eloquently. I'm not as eloquent. In the meantime I shall continue with where I am now, reflective, responding, re-creating.


A tangle of a stretched pink substance of different thickness.
A Substance of Change

Thank you for reading, skimming, or just looking at the pictures. If anything in this text resonates and you'd like to open a dialogue with me, please contact me.











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