Small changes

Time slows when the lights are fluorescent and the days are punctuated by the rounds of the medical staff.

My head of studies for my PhD is a woman who is internationally known for her creative-design- person-centred approaches to dementia care. She’s an Occupational Therapist, with a background in art psychotherapy, and a PhD in using Art & Design methods in enhancing care in care-homes.

So I was super stoked when she asked me to be part of 1 of her many projects (some paid work on top of PhD). She invited me to be part of a project where we will design a Dementia friendly eye clinic. In real life.

Yesterday we had a meeting with some service users (I hate this term); a carer and his wife who has dementia. We spoke about all of their experiences of the eye clinic, from everything from leaving home and parking all the way through to leaving at the end.

There were many flaws in their care, some avoidable, some just a mistake, some just part of the design flaw within the pathway.

What I discovered when we looked back at our notes was that the things we could make better for people with dementia – would actually make these things better for EVERYONE who uses the service. How crazy is that?

I remember a few years ago, I had some crazy neurological stuff going on and it really effected my eye sight – I’d get like flashes of white light in my vision and I lost some of my peripheral vision. I had to see the eye doctor a bunch of times.

It was crazy just how unusual and difficult it was to go through that pathway. Eye drops that sort of itched, and we’d all sit staring at a wall, packed in like a crowded bus down a dim dirty coloured cream corridor. You couldn’t see anything clearly, but there was loads of small text leaflets teasing you to try and read them on the walls.  Your eyes hurt from the light. When it was time for anyone to call you, you’d get up and not be able to see who and where they were calling you from. Then the actual examination of the eye is uncomfortable – you have to lean onto some medical equipment – and being small, my feet didn’t touch the floor, there’s no arms on the chair & you’r completely unsteady – and my neck hurt from stretching it out across a small table to sit my chin in the face of the eye doctor.

It felt undignified, and intimate and vulnerable and stupid all at the same time.

Once they made me sign to consent to something I couldn’t even read because of the eye drops.

And then when it’s all over, you leave – by feeling the walls around you – and trying to remember which way was out. When you finally make it back outside – the light is bright. But in an unfamiliar way – and navigating the world through blurred vision enhances a crazy headache of sorts.

That was my experience as a young-un. Someone who has pretty decent eye sight (or did).

Now imagine that experience for someone who struggles to convey pain, or issues. Who is confused? Who has learning difficulties, short-term memory loss. Who can’t read?! 

I can’t imagine how disorientating and how scary and uneasy it must be.

I’ve been missing my clinical aspect of being a radiotherapist recently.

I think it’s the team work and the patients I miss the most. So I’m really looking forward to being part of a team, working with patients and their families, in a clinical setting again – but this time my main aim will be to come up with & test & prototype cool, person-centered creative & critical solutions — whilst at the same time learning some cool new researcher skills. Mostly how to get something you make, and apply it and embed it into the system. This is a skill I am really missing.

From just 1 meeting, I’ve already paralleled some similarities  of things that could change within radiotherapy and the dementia care pathway — there’s just such a long way to go. But, I’m excited!

We already have 4 areas of focus, and ideas to prototype. It’s too early to share or know if they’re any good or useful. But I can’t wait to share with you guys our future work on this!

2783788988_5c6a178f5c

Work Hard & Be Kind

My productivity clock is weird. I can’t do anything of great magnitude in the morning. In the mornings I can’t write good essays, I find it hard to read and interpret big data-sets or new complex ideas and theories, I can’t really code websites, I find it hard to hold a proper conversation for at least an 1.5 hours after I’ve gotten up. So I leave my admin tasks to the morning and I usually distract myself on twitter. I’ll attempt my work, but will probably have to re-write it later.

By the afternoon, I feel my cogs working more smoothly. I can read those research papers and books with the understanding they need and deserve, I can begin to stare at the word document with that paper I’m writing. I can draw much better – and can debate things until the cows come home.

By 5-8pm I hit another fatigue lull, but if I nap on the train home or on my sofa in the living-room, I wake up raring to go.

From 9pm – 2:30am these are my golden hours of productivity. I write everything I need to do, I notice ideas and complex issues I missed in papers during the day, I draw more in that time than I have done all day. I complete works, I come up with my bestest ideas – I learn so much new stuff in this time — I learnt how to code websites and phone apps deep in the night. I’ve started many of my projects at this time.

But it’s annoying. I want to be that well productive in the day – and ALL day.

It’s pretty exhausting at times, especially already trying to beat that fatigue that won’t shake off.

And I know I have so much to do. So how do I keep motivated as I do my PhD and all my other projects?

Over the winter holiday I read “Let My People Go Surfing” —  Chouinard’s story is of his values and what led him to start Patagonia (the best outdoors store, ever). The principles that drive his company are really his own and he is a reluctant businessman. His big focus is on quality, durability and doing more with less. He is a committed environmentalist and believes businesses should be responsible for the damage they do to the Earth. Refreshing.

Quotes I liked:
“Doing risk sport had taught me another important lesson: never exceed your limits. You push the envelope and you live for those moments when you’re right on the edge, but you don’t go over. You have to be true to yourself; you have to know your strengths and limitations and live within your means.”

&

“How you climb a mountain is more important than reaching the top.”

Before 2012, I worked so hard and made so many sacrifices, that when I thought it was all nearly over – I regretted the missing the really important things in my life. These quotes encapsulates some of the foundational lessons I learnt – or certainly felt – when I got sick, and my normal life was really hard to maintain for months and months. It drove me into the ground.

But surviving something like that, made me feel like I deserved to spend every day on vacation. But you can’t. You have to re-join the real world, and re establish yourself in some sort of way.

Now I need to be able to have a balance during this PhD. I’m finding it a bit hard. Some weeks I work insanely hard. Some weeks, I feel the guilt for not having achieved much. Maybe that’s a natural balance? But I think I’d prefer it to be more work consistent.

So in changing habits, and in hoping to sculpt something from my mess, and learning from Let My People Go Surfing values. I’m not going to spend any money on clothes, & unnecessary things like blankets and lights (which I seem to have a thing for!) I will only buy essentials such as food, and art/study stuff and train tickets – for a whole 6 MONTHS. Starting from tomorrow. This will help enable me to declutter my day, my procastination of online shopping when bored, from walking to shops and looking at stuff i don’t need. I want to begin to re-evaluate what I have.

And I need to write more.

I’ve journaled frequently in the 10 years. I  kept a streak doing it for 106 days in a row over last summer. Every single day I’d write, I’m glad I did. And yet, most days, I don’t.

And I almost never let anyone see my writing.

Multiple theorists emphasize the importance of failure. I know this, but I’m not practicing it.
In the past year, I labored over at least a dozen items I planned to post publicly. I published  only 1 or 2 good ones.
I sat down with Steven Pressfield’s The War of Art, and it drove the point home even more strongly:

Whatever work you fear most, it’s likely the most important for you to be doing.

I fear writing because I fear I have nothing to say. I fear letting you see my half-finished thoughts because I fear losing your respect and attention. Most of all, I fear wasting your time.
But I know it’ll sharpen my thinking; I know it will push me. I hope it will connect me with people who like to think about, talk about, or work on the things I’m interested in.
So I’ll do it.
I will, at least once every week or 2, post something (brief!) that’s unfinished, unready, and unworthy of your time.
Here goes…
To my mantra: Work Hard & Be Kind
12011351_10153503612971508_6158508689328791688_n

 

Nearly another year older: 29 things to do by next year.

Tomorrow, I turn another year older into my late 20’s.  Slowly, slowly edging ever more closer to 30. It’s crazy because I still feel 21 in my head. I still get I.D’d for booze at bars and if I’m really trying it on, I still get Teen cinema tickets at the local Odeon. 

But my life is that of an 18 year olds. I still rent, I don’t even own a wok (this is going to change), no kids,   no pension. I’m still a student, albeit I prefer researcher  now (PhD). Getting really sick in my 20’s kind of funked things up a bit. I lost time for making and meeting people and things. I lost money, and I spent a whole-lot of it when I got it — YOLOing or trying to find cures for my fatigue.

By societies standards, I’m not a success. But in my own standards (and I think this is what matters) I’m relatively happy with where I am right now.  I mean, I am alive. I get to travel, I get to do what I love every day. I get to try and make a difference. And my life is sweeter than it ever was before, because the stakes are higher. I feel time is like an old friend who helps me to see things with much more clarity. I have incredible friends & family who are there for me, every-step-of-the-way.    

As I missed New Years being sick, and as I enter the year of Copper on the periodic table: I feel like I aim to see things differently: 

glass: more sea, less broken 

music: more live, less elevator

dreams: more lucid, less fever

flies: more dragon, less horse

fires: more camp, less brush

roads: more country, less service

slides: more water, less land

light: more moon, less brake

letters: more love, less demand

sins: more carnal, less original.

Here’s 29 things I am going to do this year

1.) stare at the stars with the people I love.

When I fell sick, my first night of wide-eyed clarity was spent  staring at the milky-way on the ballfield on an island in New Hampshire. USA, thinking about all the things I haven’t done & might never get to do. Now when I look at the night sky. it shifts me back to that feeling, being part of the universe, but also grounds me. I feel the weight of time. It’s beautiful, and technically we’re just staring at the past. What better thing to share with people you love? Time travel.

2.)  make my own ice-cream

When I stayed with Tizzy & Tara in Washington DC in 2011, we drunkly came home & I really wanted some ice-cream. All they had was Lavendar and honey. I thought it would be gross – but I was SO wrong.  chomped it all and felt guilty. I’ve never been able to find this ice-cream, ever again, since. I will re-create it this year.

3.) go to the coast of italy and draw the towns from the sea.

4.) design my own typeface/font.

5.) straddle the International Date Line

6.) tell my mom I love her

7.) Play the piano 

8.) run

because who knows when you might not be able to

9.) go surfing

10.) write & perform a song

11.) grow some vegetables

easy vegetables to grow, like.

12.) get a real christmas tree at christmas

13.) go to Japan

this will be a testament, Japan’s been on the bucket list for years

14.) learn to cook more new dishes than i  have ever done before

15.) do something I’m afraid of doing

16.) ride my bike more

17.) live in a world that loves all people

we should all aim for this

18.) budget

lol

19.) have fun without technology  

20.) take nothing for granted 

21.) try and stop feeling like i’m running out of time

22.) take more 35mm film photos

23.) do more for charities and help people more

24.) People

The most important aspect of out lives are perhaps the people around us. My goal is to stay in touch with family and old friends, and to constantly strengthen the bridges built over time.

25.) finally update my damn website

26.) see more sunrises and sunsets

27.) remember that what matters most is how well you walk through the fire

28.) pay my bills & debts on time

lol

29.) laugh at the odds 

**(+ bonus which doesn’t need to be said but: 30.) Enjoy my PhD)**

Happy New Year friends

cl98k7nwgaaz1hr

Processed with VSCO with c2 preset

Processed with VSCO with c2 preset

(In)Visibility and Art [& suffering]

Today, after 9-10 days of a horrific infection, I found myself feeling human enough to do some actual work. We’re organizing a conference about art and visibility, my PhD friends and I. More info coming soon! So I started writing the stuff we need to move forward today.

But what it made me think about was visibility within healthcare, and illness, and art.

I started thinking about Greenberg ( visibility of the aesthetics of experience), – and then about  the Cubists and other Post-Impressionists perspectives being  particularly poignant for illness and suffering.

But contemporarily, how  are we and can we understand someone else’s pain or convey our own to others? How do we make sense of the nonsensical, whether the chaos of life-as-lived or the inscrutability of dying? How do we answer the questions “Why me?” and “Why now?” when we are diagnosed with disease? How do we paint what we know is there but cannot see?  These are heavy questions which lie sullen at the bottom of every action within my PhD enquiry. Modern medicine, like much pre-Impressionistic art, tried to square this circle by instituting a technical and professional gaze that filters out the ephemera of the individual in order to identify and name what is hidden by opaque bodies (see, of course, Foucault 1994).

But this is not arts aim; it’s not a reductive attempt to discover the building blocks common to all landscapes or buildings or humans or musical instruments. It’s to uncover the essence of a thing, that particular thing, in order to reveal more.

Our representations of disease may actually conceal even as they seek to reveal. We know that socioeconomics and other social determinants (e.g., discrimination, exposure to violence, lack of education and social support, etc.) are tied to health and risk of illness and disease. We also know that socioeconomics and other social determinants affect prognosis and recovery. (Read Michael M’s The Health Gap for more of this)

Although the media love to highlight the enemy on our borders threatening to disrupt our safe worlds insulated from many of the realities of danger and suffering, it is actually our capacity for self-destruction that constitutes our greatest foe: poverty, poor nutrition, lack of access to care, neglect of mental illness, climate change, and war, both declared and undeclared. But far easier to wind up a distant epidemic and see a remote danger to ourselves (while thousands die in a distant place) than address our real threats. Despite many genuine humanitarian responses from wealthier “first-world” countries, it is still clear that we have primitive protective responses (at home and abroad) that largely ignore the real wolves at the door.

As the NHS looms on a crisis that was caused my a greedy, beaurocratic , irresponsible government, and Brexit heightens tensions, and Donald Trump’s inauguration starts to truly loom ahead, I got thinking.

Thinking about  all of this, I wonder if art is our tool to help both recognize suffering but also help build bridges with communities we have trouble connecting with due to these issues.  If the digital world fosters isolation, what evokes empathy? Which of our personas do we believe in—our social media portraits or our reflections in the mirror? What are the consequences of a digitally-created society in the psyche of the global community? Art *can* cross boundaries, social class, geolocked nations. It exists in between physical, real and the social-digital world.  It links us through history, makes the other seem friendly, it can hold up a mirror when everything else seems shattered and untrue. Art explores the complicated yet timeless questions of influence, superficiality, and powerlessness.

When I was first an art-student, I remember finding and learning all about this activist art history. From Ad Reinhardt creating “communist” comics under a false name and being investigated by the FBI, to more direct examples such as the Gorilla Girls, and PAD-D groups. They made work with a political edge.  It was so exciting! I wondered about how awesome it would have been, to be growing up in such a polarized and politically difficult time and then being involved in such grassroots political activity and art being the tool, or the process.  Almost a license to get it out there and be archived for the future. But that same political drive, was also given to the artworld too – Gregory Scholette of PAD-D continues writing about art and political activism with his artwork representing his ideals and holding the artworld accountable for its Dark Matter, Reinhardt wrote lots of essays – as published in “Art as Art” with his disgust of the commercialization of art.

Of course, now I found myself, in a much different world than 8 years ago where hope resided, and people were less obvious and less aggressive with their hate. Where politically, things all felt relatively stable and fine. I have since lost my political art naivety that I had then, and I don’t feel the same excitement as I did when I first found it —- but what does remain is my gut feeling that art CAN make a difference, and my passion in the use of criticality esp within a political art canon. Art can be urgent and important and poignant.

I wonder about all of these experiences, and lessons. And I think – yeah, it’s our turn to make the invisible – visible. We are traumatized witnesses, some of us accomplices, groping about in the gap between passive outrage and mobilized action. We are both: perpetrators and victims, objects and subjects endlessly exchanging roles.

It’s our turn to show that mirror to those who can’t see a reflection. It’s our turn to help people practice empathy, to feel less powerless, to make people accountable, to stand up for what is right – and I think it’s about time the artworld got out of it’s comfort zone.

I’m not sure what that looks like for me.  Some artists are already doing it. But our Art is about changing the world, rather than study how it is. It’s not just about making things, but making things happen. There is much proof out there that our common community has not been relinquished.

Is art sufficient to the task of unpacking these contradictions that lie within our society – or should it complicate matters further? Such questions are unanswerable, but we shall see and we shall do.

cm3qiibukaa0-9i

Time & Vunerability

I have written a lot over the years, and especially in 2016, about fear and sickness, and the force for good that can come from being dealt a hand of crappy cards.

Over the past year and a bit, my right foot has been hurting. I put it down to standing on my tip-toes on clinical placement (too small to move patients- should really get the step out! – so my own fault), creating a planta facisa like thing. I had an injection which stopped the pain for like 2-3 months. I was happy. Glad it was just a normal thing, and nothing complex like I usually seem to rock up with at the doctors.

And then it started to seep slowly back. Every morning when I got out of bed, I could barely walk for the first few minutes. I ignored it. I was no longer on clinical practice, for months, and yet it was getting worse. But never mind, I was in America. I was sure it would go away soon. I never even really looked at my foot though, as I thought all I needed was another injection when I got back home to the UK.

Then when I was kayaking across the pacific ocean in Hawaii – my bad kayaking skills got Gemma and I hit by a massive surf wave as we nearly arrived at the shore of the beach. I don’t know what I hit my foot on, but when I did I got this soaring pain. I limped out of the kayak, holding my breath to try and take the edge off.  Days later when my foot felt no better, I inspected my foot – and noticed a medium sized mass in the center of my soul and up to my ankle . I thought about googling it – but I was in america… what good would that do? So I shrugged it off. And thought it was probably Kayaking swelling. I continued to limp across the West Coast and from Gatwick to home, and beyond.

My GP – always a believer in not doing something without proof said he’d rather not do anything until he knew what was wrong, referred me for a scan of my foot. It took a month for the letter with my appointment time on  – which was the night before my flight back to Boston/NYC for a week.  I went, had the scan and the radiographer told me there and then that there was something on it that I had to go back to the doctor straight away because “that’s what doctors do”. I was like, “is it a tear?” He was like – “maybe – or maybe fibromatosis.” I sat up and looked at the screen and instantly could see the deep shadow on my foot – that radiological training, yo. Since I was flying the next day, I decided to do what I do best – just ignore this pathology and go on as normal. The radiographer told me it was necessary to see the doctor asap, and that I shouldn’t go running at all. I arrived back home a week + later to an appointment to see a specialist.

I left, and of course, googled Fibromatosis and looked at scans of feet to compare what I had seen. I have come to the conclusion that it’s not much to worry about in the great scheme of things, but elements of concern remain never the less – like if it is this – how will I ever be pain free in my foot again?  And now every morning when I get up, is a reminder of this pathology existing in my foot as it hurts to walk.

I am forced to look upon myself, once again, with a harsh and urgent clarity.

In 2012 I was forced to become essentially aware of my mortality, and of what I wished and wanted for my life, however short it might be, priorities and omissions became strongly etched in a merciless light and what i had most regretted were my silences.  Of what had I ever been afraid of, and opportunities not taken?

I’m aware now that my visions of a future have been honed by the lessons of my limitations – such as the never ending fatigue & headache. But I think it’s really important to give an honest and vulnerable account of what it’s like to deal with our hardships, if we are indeed going to share them.

There was a BBC article recently saying being on social-media can make you sad – because a lot of people, often,  portray a life of sunshine and rainbows, myself included. Sharing celebrations but not their failures. Showing an easier path, perhaps. Or shining glory in the face of adversity, leaving you the viewer – feeling less of a person because in the same adversity you crumbled, whilst they stand up shining and strong. When in reality, both parties struggled and both are victorious in being able to work through the challenge at hand. It’s just curated in a different way. Now I’m not saying we shouldn’t share our celebrations – but isn’t it much richer when we know the losses and insights gained & gathered in that process? It’s often a 2 -way journey too. I know I wouldn’t be where I am without help.

I feel like I have been open  throughout the years of my experiences. But I do often not share my feelings fully. I often don’t really tell people what ‘s going on, or what I’m going through, or weird things that’s happening to my body because — well, you know the other person probably won’t know how to react, or when there’s no proper finishing line it’s hard, or you’re not really looking for sympathy.   But often when I do take a leap and share what’s happening, there’s a huge sense of relief. Like, almost that my pain has been validated because another person knows about it – so it therefore is way more real than it just existing in my body or in my situation.

Through time, I am slowly learning to live beyond fear by living through it, and in the process learning to turn the fury at my own limitations into some more creative energy.  Living a self-conscious life under the pressure of time is enough to leave a mark upon alot of my life’s decisions and actions.  And it doesn’t matter whether my death comes next week or in 30 years from now; this consciousness gives my life another breadth. It helps shape everything: from the ways I want to love, to my politics, to my work to the depth of my appreciation of living.

I would be lying if I did not also speak of loss. The lessons of 2016, and beyond, have provided myself with many (hard) lessons and questions.  Such as, how do I provide myself with the best physical and spiritual nourishment? How do I give voice to my quests so that others can take what they need from my experiences? How do my experiences fit into a larger tapestry of my work as a working-class woman working across multiple disciplines as an artist? And most of all, how do i fight the despair born out of my fear, and powerlessness — imposter syndrome — self doubt — my meaning(less) life — which is often my greatest internal enemy?

What I’m learning, and wanting to take forwards into 2017, is that battling despair does not mean closing my eyes to the enormity of the tasks of effecting change, nor ignoring the strength and the barbarity of the forces alighed against us.  This is important as we begin to sail uncharted and ferocious seas of many conflicts and unknowningness ahead- both politically and personally: and physically, philosophically and socially.

When I reflect through all of this, it is the concern and caring of all those in my life which have given me strength. We should share our experiences – all of them, the bad, good and ugly , (only if you want to share of course) and spread words that are meaningful to us. It is necessary to teach by living and speaking our truths which we believe and know beyond understanding. We have lived through all of this already, in silence, mostly.  But we can learn to work and speak when we are afraid in the same way we have learnt to speak and work when we are tired.

I want in 2017, for us to be brave, see beyond our fears – whatever they maybe – and to break our silences with kindness and compassion – for those around us, but also for ourselves. We can challenge hateful assumptions, we can begin to understand others fears, we can work together to try and bring small solutions to never-ending problems and crisis. But it will be because we became unified. Because we understand that essentially we are all fragile, and all human.

It will be a big task, because there are many silences to be broken. But I know that together we can do it.

So lets share our vulnerability, lets assess our fears and dreams, lets help each other up.

Don’t wait to be asked if you need help, because I’m already here and you’re already being beckoned.

In the depth of winter, I found there was, within me, an invincible summer.And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger — something better, pushing right back.” — Albert Camus

 

Help Aleppo Smizz Print: Lets Be Kind Again

I’ve been watching the tragedy of Aleppo for months and months now. Slowly, and slowly getting more and more, and even more horrific. I never thought that in 2016 we would be looking at the world through fear like we are now – a world seemingly well connected, a whole history to show us how it will never pan-out well for either side. But here we are.

I read article after article about the genocide that is happening. And I feel incredibly powerless. I know we all have stuff going on in our lives – like trying to make one pay check make it to the end of the month, being sick or looking after a sick loved one, wondering if we’re going to have a job by the end of the year… etc. And these are no small-feats. But I sit and look around my room, at my mom and my dogs, I look at my Facebook messages with my bro, and i look at the christmas tree with it’s sparkling lights. I think how lucky we must be to not live in that kind of fear (or at least yet.. who knows what the future holds at the moment).

And I can’t just watch the world burn in horror without trying to do something. However my skillset is small. And my debts are massive. Since we raised around £1000 for Doncaster Detection Trust this year, I figured maybe another drawing could do the trick to help raise the money and the funding to get the help that the people of Aleppo so desperately need.

So here’s my first print. They are all limited edition of 100, signed.

A4 in size, printed in matt. On heavy 220gm paper.

They will be posted to you after christmas.

Starting donation at just £5. All money I will split equally between The White Helmets and Doctors Without Borders/MSF 

Make the £5 (or more) donation to Paypal. PLEASE ADD £1.50 to cover postage too – unless your donation is over £15. I will cover the postage costs for you for your IMMENSE generosity.

DONATION HERE:

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=SWMGL3DWTSVPQ

Email me if you have any issues or questions! smizz@sarahsmizz.com

Thank you for taking the time to look, and even more MASSIVE thanks to everyone who has already donated to get this print.

Lets Be Kind Again (we can be the change!)

(More prints coming soon too)

letsbekindprint

 

 

What endures, what lingers, and what gets washed away?

It’s been a whole year since the last Thanksgiving, already. I know, Thanksgiving as a Brit living England is technically not my holiday. However, I wish we had something similar in the UK. Like, I dunno, a Kindness-Day – a national holiday where everyone gets the day off & it’s a reason to take the time to be with those who matter to you, to think about  what we have & help others out – without it having to be related to some underlying pilgrim genocide, or unrelentless capitalism. But you know, a time to take in & be present for all the small things. Because the small things are the things that probably matter the most. And you guys have given me the bestest small moments this past year.

I started to pen this post in my head, slow walking home through a freezing fog through the quiet neon light of Sheffield city streets. I do like evening walks like that, just listening to christmas-jazz music.  But it’s also made me realize something about Sheffield that I love. I love how Sheffield’s meteorology is an excercise in whims and micro climates. I can see how Sheffield has become a city for rebels, artists, hackers, nerds, runners and hikers.  It often feels like we are not on the same schedule as everyone else. Time passes in a non-narrative mish-mosh of second winters, monsoons and fourth indian summers, calendar dates be damned. Ney, all this can happen in just one day! Those small things.

2016 has been insanely kind to me, especially work wise. And you were all very kind to me too. I got to draw some amazing things,  people and talks. Stories. And I graduated with multiple prizes and awards – when I didn’t think I’d even finish the course. 

My medical ‘journey’ started making me think more about how narrative helps us all be more compassionate & empowered (if you’re telling the story)… How empathy is first an act of imagination. An illness is not merely a set of signs & symptoms – it is the story in which it is told that gives us the necessary clues of what needs to be done. What kind of support this person is looking for, how it is affecting their quality of life & ultimately what tests/treatments need to be done/undertaken. The thing is, it’s often the smaller things in a healthcare pathway which makes the most personal difference.

It made me realise  how I can never be certain of anything. We are made from our experiences – our failures & successes, our loves & dislikes, what we have witnessed; gentle creatures that get hardened by tragedy. I walk through streets, sit on the bus, in hospital waiting rooms and cafes and think about these people who surround me, I wonder what their stories are. 

Because I often find it hard to concentrate these days due to unruly fatigue, brain-fog or just general overwhelming pain on top of deadlines  – I’ve spent a crazy amount of time online & reading books trying to find a cheat to trick me into being more productive & waste less time. Ultimately – I’d like to gain more time so I don’t have to carry the guilt of not working as fast as I used to do.

But all i’ve learnt from this is that we are never-ever-satisfied. Life coaches think they’ve figured out the secret – to delete all your apps on your phone. Bullshit. Just turn it off!  #firstworldproblems. We await bigger phone screens, & watches that do the same as our phones  and complain about things that are arbitatory. I too am guilty of this. 

 But it’s all just more proof of us not enjoying our smaller things.

Robin Sloan in his book Mr Penumbra’s 24-Hour Bookstore writes about this idea that basically you write a book, a “Book of Life”, that represents everything you have learnt in your life. You work on drafts your entire life and it gets stored and read by a privileged few upon your death. Our lives are filled with a desire to know the universe, and to be known. To leave a dent. 

To not be forgotten (my own fear).

As time becomes more valued to me as I know how quickly it can be erased, I started thinking about “quality time”. And its role as the primary means to an end for a fulfilled life. This quality time should be with our own selves, with our interests, and with those people we connect deeply with. They each feed into each other, without one – the others become disconnected. Quality Time makes extremely clear that those smaller things become some of the most important moments in your life. Be present for them, but that’s not easy. Cultivating quality time means attempting to remove circumstances that hinder quality time, and not all of us have that luxury. 

I am learning to be wild again.  Next week I head back to the U.S.A. again!

I truly believe one of the keys to happiness is to build meaningful ways to make a living whilst working on something you wholeheartedly give a shit about — with good human beings who you give a really big shit about.

In each of our lives, things have changed, for better and for worse. Change and struggle is part of our every day. Becoming and being a parent, as many of you are, is a struggle. Starting a new course, job, moving house, starting a new relationship is all full of struggle. But it makes us better, in some small shape or form.

Being sick reminds me that whilst we might understand the surface of things, deep down there is unprecedented amounts of uncertainty that we have no idea of. All I know is that this Thanksgiving I am happy and thankful for the smaller things. The ability to hold a conversation, the ability to write a blog post, to have so many amazing friends dotted around the world that I can see  any time or throughout  the years. I get to travel. I get to try and make a difference. I get to draw and learn for my job. I get to hear your story. I get to call you my friends. And i have shelter, and warmth and food (most of the time). 

I believe that whilst our trauma’s may linger, kindness & friendship is the thing that helps us endure. 

You guys have made my year. I hope that together – we can continue to give just small pieces of everyday kindness to both loved ones, friends and strangers. 

So this Thanksgiving, I ask you: What endures, what lingers, and what gets washed away?

 

thanks.jpg

If you think you can’t do something, I think you can.

All my life I’ve felt like people say that I can’t really do stuff. And sometimes it’s said not in a direct way, but through specific actions.  And then I wonder, who are  these people to tell us we can’t achieve something? What’s it to them?

I never was guided to go to university until very late on in the game. I never knew about league tables, I kind of had no real concept of what university was – I knew no one in my life who had been. It was like a foreign concept. I accidentally attended 6th form as a way to avoid full-time work (I worked 2 part-time jobs during my A-Levels instead), it was here that I started to keep the university prospectus shelfs in the 6th form block up to date and in the right place for others to use and inspire. I ordered every single prospectus from across the UK. I remember to this day all the different kind of designs they came in. I’d look at pages of these dreams and hopes like a kid might look at Disney World travel brochure. My teachers encouraged me to apply.

In fact, I used to look at Virgin Atlantic travel brochures too with admiration and fascination. I remembered how I would look at my favourite brouchure regularly and feel like a sensation at wondering just how downtown Vegas and all those millions of lightbulbs would look like. I would close my eyes and will myself to figure what San Francisco would feel and look like blending these pages of travel brochures and movies . It was literally  a million miles away from my only ever been to Doncaster lived life.

I was told that it probably wouldn’t be possible to ever go there. Because, well, we’d never be able to afford it. It was deemed too ambitious – and what exactly would I even DO there?

I’ve now been to San Fran 5 times so far.

I somehow got to university to study fine art, without a foundation degree. I was the youngest in my year. I remember my interviewer at SHU asking me, “why do YOU think YOU can come to university without a foundation degree whilst everyone else has got one?” And my answer was… “Because I’m a Marxist”. I still cringe. But it did the trick. I told him in one sentence that what I lack in technical experience from a foundation degree, I make up in theory and self-sufficient ideas. Very SHU, really.

I went to work at summer camp after my first year of Uni, to work there & use the money from that job to achieve my american travel dreams that I had spent the past 10 years looking at. Here I realized that American kids are taught to believe that can achieve ANYTHING. They can be president if they so wished.  Us Brits? Don’t be ridiculous.

I have wondered about that part of our culture a lot.

Here all my friends were going to be applying for real internships next summer.

In my second year I wanted to start a gallery out of my living room, and my lecturer at the time told me that it would be too much work and I’d never do it.  I applied for an internship at MoMA – knowing fine well that i’d never in a million years get accepted, but it was a great excerise and I used my tutorial with the professor at the time to see if I could name drop him on another NY Gallery application.

I found the bestest people in my life, Postmasters. Who took a chance on a Smizz.

I was so inspired that summer after working there, that I started a bunch of iconic and life changing projects in Sheffield – Including CAKE artspace, which was a small room above a cool bar on West Street. We did so many cool projects over the 2 years we existed. Take-that my 2nd year lecturer who said I couldn’t do it.

I worked in art & political institutions across Chicago, and then mashed my BA & MA up together and graduated with my Masters in Fine art.

I graduated and I failed at getting most opportunities, but I kept on trying. In the meantime I took on jobs to make ends meet – and in these jobs – like Waterstones, I made some of my closest & giving friends. I learnt lots about bookselling and about publishing. I worked on 100’s of projects and started making a name for myself as a live-illustrator. I also used this time to re-connect with my friends and family.

I had to drown out, constantly, people telling me in so many different ways to give up – or that it’ll never happen for me. I even, at times, fell into the trap and would believe the self-doubt, I would wollow in self-pity. But i’d slowly pick myself up and dust off my trousers and start looking for opportunities again – with a lot of help and guidance from friends already in the art game.

I slowly started getting artist residencies in iconic galleries, and travelling the UK for drawing work. The working class kid from the Donx, making it as an emerging artist. Who would have ever believed it? Not me, that’s for sure. And not the people who believe you can never get work from art.

Then I fell sick. And I was rock bottom again.

All of my hardwork. Kind of disappeared over night.

People told me to just give up, because – well, who knows if I’ll ever be the same again. If I’ll ever NOT feel extremely tired. I had to let go of my old life. I refused, and it drove me down further.

And in that time I saw those gaps in the  healthcare system. I saw how people held me up when I was limping and at my lowest. I knew then that I wanted to be THAT person. I wanted to try and help lift someone else up. I wanted to help make society a more equal place. You do that through health equality and care. And I just felt, deep down that an artist could do it because I was sensitive to the system and peoples needs – having a very real patient experience myself.

And so I started looking into which area specifically I wanted to go into. And I chose upon radiotherapy & oncology for its continuity of care, my need to know more about oncology and the team working aspect.

When I applied, I had no healthcare working experience and no science A-Levels. Many universities were reluctant to say that I could *even* apply to do it because of no science – But I had a 1st class Masters. I can learn. I’ve proven this. I had more than enough (straight A’s at A Level) UCAS points.

I paid no attention and applied anyways. And i got interviews everywhere I applied. But even in the interview process I was met with reluctance. 1 university (not SHU) said to me, “Don’t take this the wrong way, but you’re not our usual applicant – The NHS is a bit like a conveyer belt – so do you ACTUALLY think you’ll even fit in?”  This threw me, how loaded with judgement and cynicism. I answered, yes I would fit in & much more.

I got offered a place, but SHU was for me. (Cuz I’m SHU until I die, obvs).

Plagued with self-doubt throughout the radiotherapy course, I constantly told myself that I didn’t belong. I had no science background. I was terrible on placement. I had no money. I had my arty habits. I’d think in these weird ways which took me longer to get to the right answer.  I thought that maybe I’d made a miscalculation.  I was sick. I was tired. I was miserable because everytime i didn’t do something right – i’d spend the next 20 mins + doing myself down inside my head – this was a constant cycle for months at a time all day, every week day. This is not the right way to go about it.

It was like I took all the baggage of all the many years of people telling me I couldn’t do something – and built it up into a mirror that I just tormented myself. I never began to believe the hype.

I somehow I got through 2 years of crippling self-doubt. And that was thanks to my friends, and all the supportive staff & people on twitter I had in my life — who thought that I could do it.

I went for my first RT job interview in Jan this year – and they took an instant dislike to me, which is fine. The next day they called to say i never got the job – which was like, duh. I asked for some feedback and they told me that my answers were “really, really good – just TOO detailed. And that they applaud my enthusiasm but they thought I was too ambitious ( which was that my long-term career plans was to enhance patient info by using patient experience [with specific examples] – not too ambitious in my mind)”. Whilst I’m 100% people did way better than me, I felt that that kind of feedback was unhelpful. Another voice just justifying to me my worst fear: that I’d never get a job in radiotherapy because i was too different, that i’m unlikeable, that the exact reason I wanted to go into healthcare to make a difference was seen as too ambitious. That I *couldn’t do that*.

 

Last week I picked up the national student therapy radiography of the year award, I won a bunch of awards for my first ever RT patient info app, I got my research chosen to be shown at the annual radiotherapy conference in Jan next year 

And today I graduated with 4 prizes for: most innovative research project, highest clinical marks, highest clinical and academic marks, and highest mark in PRO 3 (2nd year) module. 

I got my full scholarship to do the craziest PhD ever – combined all of this together — to, you guessed it, try and make a difference. To be ambitious there. (Although I am now riding myself with the same self-doubt and imposter syndrome that I had during my RT degree).

And this all came from people telling me that I couldn’t do it.

So I will take a leaf from this book of lessons.

When you want to make a positive change, whether that’s in the system or for yourself – and people say “you’ll never be able to get a job in that” or “you’ll never get accepted because you don’t have X” or “You’re just too ambitious” or “You haven’t got the right marks” or “That’s not HOW we do it,” Or “it’ll never happen cuz people won’t get it/don’t want it/people higher up won’t invest in it”

Do it anyways, try it. Test it out. It might be wrong. It might take longer than you expected. There might be loads of tears and headaches. Your relationships might be tested. But if you really believe, and you think it’s right. You’ll find a way through the bushes, or hanging across the cliffs. It might not be safe. But you’ll get there or learn something to use in the next move.

As Samuel Beckett says: Ever tried. Ever failed. No matter. Try Again. Fail again. Fail better.

0-2.jpg

 

Love Is Love Is Love: Working To Make Things Better

Around 5 years ago, my life changed in a fatal kind of way. When I was in America, I was given a diagnosis that made feel like I was looking down a barrel of a gun and made me question everything in my life. This crazy plot twist, that wouldn’t have been out of place in a Tramedy, set off a bunch of things in my life. The past 4-ish years have been personally-health-awful, but yet through this difficult time this happened:

Last night I picked up my crazy amazing big prestigious award from the Houses of Commons, like some kind of rock-star. It was surreal, and I’ll probably never get another opportunity to experience something like it. But it was such an incredible evening and I met so many amazing, talented, smart, giving and generous people who work within healthcare,  specifically within radiography and oncology care. We should be so proud to have these people – and people not acknowledged working day in and out within the NHS just like them – and in our country.

It’s more than anyone could ask for and it’s an absolute rare privilege; To be recognized for trying your best to help others. I’ve never really been acknowledged before,  but I can’t help but feel heavy with gratitude to everyone who got me here, as thanked previously in many, many blog posts previously. Because this award is just representative of everyone who got me here.  There is no greater gift than being able to be part of something bigger than yourself, trying to make things better for others. And so the honour of being part of narrative alone is incredible.

Then I got home, back to the north, anxious about the U.S.A. Elections, fell asleep and awoke to Trump president-elect.

When I fell sick, I had so much angst because I felt like there was so much left to do and so much more love to give in life. I’d cry because I felt sorry for myself. And I felt ashamed even more for behaving that way, for being weak. But then on reflection I realized that the tears  flowed because they needed to. Because things were building up instead of me like a pressure cooker, and I wanted to keep moving forward.

I was crying because I wanted to live, because I was afraid of not being here.  And I was afraid of being forgotten.

So having gone through that, and 2015 UK General Election and Brexist Ref vote – I figured we need a hope-of sorts – a plan of sorts. Here’s what I’ve learnt from my few years living invisibly and wanting so bad to enjoy life again. And how Brexit, and Trump and a million refugees stuck around the world make you feel powerless and everything is lost. But

Trust me when I say this time is short & this life is both terrible & beautiful.

Resentment & anger are inevitable & sometimes are important, temporarily,  but it’s important to not take up residence in that place. I PROMISE you deserve better. Even if you voted Trump. You do deserve better.

I promise you there are people who will leave you in life, but that others will embrace you unconditionally in your brokenness.

So you go out & run fearlessly in the direction of love. You are never alone. Your tribe is out there. GO GET IT. And please keep laughing. Joy is salvation. In the darkest, lowest moments, being able to find something, anything to laugh about can save you.

We never stop. We never give up. We fight for each other and protect each other.

Living and giving kindness is the best revenge. 

The most creative challenge of our lives is learning how to approach our own inner darkness with curiosity, empathy, and friendliness.

And that’s where it’s all going to come together.

Sometimes in life, if you are very lucky, you find the grace in having it all blow up in your face.

Our jobs for the day (life): Tell the truth; Be kind & curious; Love all people with all your heart; Don’t put up with any bullshit. 

Love Is Love Is Love, we’ve had a bunch of set-back but that just means we’ve got a lot of work ahead of us but lets keep working to make things better – for ourselves and for those who are voiceless, victimised, invisible or who can’t say it for themselves. There is so much more that what unites us than what divides us.

Our work isn’t done, and we need each other and others less fortunate than us, who are REALLY struggling need us. So don’t wait to be called, because you’re already being beckoned.

unnamed.jpg

Taming the beast in a complex system

Last week I had my first medium-plus allergic reaction to Shellfish (I think). I didn’t even eat it, I just ate rice that had been cooked with it. The kicker is, I don’t even LIKE Shellfish.

Literally within an hour my face swelled up (not like Hitch style but pretty bad never the less) & my throat became ridiculously itchy & sore, and I became wheezy like when you have an asthma attack. Needless to say, i wasn’t best impressed with this new hyper-sensitive immune system of mine. I hadn’t been to see a doctor in literally months, and i was hoping to keep it that way. Damn.

I had to go to the urgent care center, where I was given steroids, more anti-histamines, and a GP appointment. My GP prescribed me my first EpiPen, and a referral to an immunologist.

Today I picked up my EpiPen. I’ve never seen one up close before.

My GP gave me strict instructions about how to use it, & that I can see the practice nurse to show me how, and that I should call an ambulance if i use it & that I’ll always have to carry it and anti-histamines with me for the rest of my life now “just incase”.

But what struck me was the design of it.

It’s really quite big! And I wonder how smaller people (kids etc) carry their EpiPens about if they don’t bring a backpack? Its design is a bit impractical. They’re reliable, sure. They’ll buy a patient who’s in the midst of a severe allergic reaction a few crucial minutes to make their way to the hospital.

But they’re also bulky. Their epinephrine solution isn’t particularly shelf-stable, and will easily degrade in temperatures that are too low or too high (too cold in a bag in the winter? too hot in a jeans pocket perhaps?) and its expiry date on mine is in about a years time. So not very long.

I had a quick google to see if there was other designs available. In America, there was 100s of news articles on the esculating price tag: apparently a pack of two EpiPens now lists for $608 in the USA. (I checked the cost for the NHS & it’s £23.99 for 1 single dose).

This revealed that there’s a design patent on it until 2025. One company owns the monopoly of the EpiPen. & because of this, the design flaws of it for the user, are the profit for company. If it’s too big to carry, you’re more likely to buy more (in the US anyways) to store in other places or for back-ups.

Accidental injections seem pretty common, and instructions are relatively simple, but, adrenaline is invariably used in highly stressful situations, in order to treat a severe allergic reaction. As the auto-injector was originally designed for use in the military, the users were well trained to manage in these circumstances and the user group generally consisted of healthy adult males. Nowadays the devices are given to people of all ages, and with children suffering more from anaphylaxis than any other age group, the device has to be appropriate for a wide range of user groups.

On the recent BBC Radio 4 programme Dr Boyle highlighted how having to respond to a stressful situation can affect the person administering the drug. In his trial, more than half of the intensively trained parents were unable to correctly operate the devices in an emergency.

He cited some of the common errors associated with auto-injectors: holding them the wrong way round, failing to remove the safety cap and not pressing hard enough. They also discussed how little research into the efficacy of the device has been done because studies can cause severe allergic reactions in test subjects, plus real life situations are likely to occur in public and not in clinical settings. All of these issues have resulted in little drive to improve the devices over the last 50 years, leaving key issues unaddressed. (1)

The very fact that the EpiPen has been dominant for so long makes it hard for challengers to come in with a radically different design.

So, what does all of this mean? Well… there’s a HUGE Challenge for someone to make a MASSIVE difference to 1,000’s & 1,000’s of people, but also challenging in being able to design everything that is needed into an EpiPen (engineering, plastics, drugs, function, deisgn, safety etc) that’s life-style-functional & more cost effective long-term (shelf-life etc).

It highlights that instead of trying to carve out a focused segment of healthcare or a specific specialty of design, we should be re-framing these conversations about healthcare improvement around a set of challenges.

No one person or one organization can take on the whole system, but collectively we can make significant, people-centered change happen. I wrote on my blog last night about ‘critical making‘ – If there is one element that is sorely lacking in healthcare, it’s the ability to prototype, to critically make.

It can seem like a beast of a system can healthcare: its big, complex, and delivering on one of the most complex industries. But I’m trying to keep practicing at staying awake and trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

 

Who knew some Shellfish and an EpiPen  experience would be showing me and putting into practice that listening can tell you who you are. That paying attention can give us the change and the meaning that we so badly seek.

||||||||||

(1) BBC Radio 4, Inside Health, Wed 7 October 2015http://www.bbc.co.uk/programmes/b06flmg7

other readings:
Adrenaline auto-injector advice for patients, UK Gov.ukhttps://www.gov.uk/…/adrenaline-auto-injector-advice-for-pa…

Adrenaline auto-injectors, European Medicines Agencyhttp://www.ema.europa.eu/ema/index.jsp…

How Mylan tried to keep Teva from selling a generic EpiPenhttps://www.statnews.com/…/2016/08/31/mylan-teva-generic-e…/

 

0.jpg