Today, I discovered that I’ve forgotten my path, maybe even who I am.

“If you change the way you look at things, the things that you look at change.” — Max Planck

I’ve written about it endlessly before, but I feel like I’m living a new – unexpected – even unwanted version – of my life. i’ve endured years and years of being in pain, delibertating symptoms and fatigue that made it so my old life didn’t fit the way it used to. My old life – and still does when I get close to mirroring it – drove me into the ground.

I love art. I love it with every fiber of my being. It was the thing that kept me awake all night, and i worked and worked and worked on this pure love of mine. It didn’t matter that it wasn’t really money viable – it didn’t matter that I kept 3 part-time jobs down as I jugged residencies and commissions, and writing endless proposals that would mostly get rejected. I loved it. I loved the potential for it to connect people, and ideas, and potentially make a change. Make a difference. I could never see a future for myself where art wasn’t in it. It’s still the thing that helped me keep a part of my self through the big change.

Unfortunately this tidal wave came begging to tear down my dawn, and made me struggle against it, made me choke on salt water. And it changed how i saw the world. I took a bit of a different direction — but I told myself, it would be with art too. But it was hard to see a future when I wasn’t sure if I was going to have one.

Trying to be arty and creative in healthcare is hardwork. Some people are suspicious of your enthusiasm, suspicious of your motivation – they don’t really understand you. Some people just don’t get it. Some people are amazingly visionary and creative and risk-taking too – and super supportive which excites me and I’m endlessly grateful for these people. But it’s hard. And my personal-art practice took a bit of a backseat in my eagerness to better the patient pathway.

I’ve been writing a proposal — another one that will probably be rejected – in true art form – but it’s reminded me of my old life again. Writing pretentiously yet beautifully philosophical sentences feels good for my soul. Writing emotively instead of just cold-facts – blunt, how do science people do it all the time?  I can slowly feel the warmth coming back into my fingers and heart. I can feel parts of my brain working in a way that I’ve missed.

Conceptions of the body are not only central to medical anthropology, but also to the philosophical underpinnings of Being. Western assumptions about the mind and body, and the individual and society, affect both theoretical viewpoints and research paradigms. These same conceptions also influence ways in which health care is research and delivered in Western societies.

Foucault (1972, 1977, 1980, 1988) stated in his writings on biopower that medical technologies frame and focus healthcare professionals’ optical grasp of the patient, with the ‘medical gaze’ that abstracts the suffering person from her sociological context and reframes her as a “case” or a “condition”. Patients are seen as the voiceless, lost in a system that reduces them to their diagnoses, or not even that making the experience even worse, and often fails to understand their suffering. This is exemplified through my own experiences and was exactly the reason why  I – the artist and experiencer – needed to change things.

Clinical biomedicine is the product of a Western epistemology. Healthcare professionals often struggle to view humans and the experience of illness and suffering from an integrated perspective, they often find themselves trapped by the Cartesian legacy. This lacks a precise vocabulary with which to deal with mind-body-society interactions, resulting in the disconnectedness of care throughout a patients’ pathway and beyond.

In writing this, I realised just how disconnected I had become from my own art practice — the person I was – and my experiences. I had to go through archives of old websites to remind myself on what I did in my art years for this application; the time before I fell sick, before I committed most of my energy to healthcare. It just seems like a distant memory now. And I was shocked.

resume2011drawing

It was like in a movie when someone discovered old, worn-yellowed newspapers of events they couldn’t believe happened.  Here existed an amazing list of my achievements, that I had forgotten all about. The pain had erased them. Struggling to survive, and get through each day had taken its toll upon me. I had literally forgotten what had made me who I am.  The crazy thing is, I struggled and worked so hard to achieve all of this. And it had disappeared as quickly as my old life had been taken. What amazed me more was how this was pre-bucketlist. I have since, began to tick a few of my other goals of my past life off, unknowingly. And I have achieved a bunch of stuff that became more important. (It’s als important to note – i’ve been drawing loads & getting paid as an artist/illustrator – it’s just not the same stuff)

But as my radiotherapy studying chapter is coming to a close, I’m starting to feel the eagerness to reconnect with my old life – despite still having all the issues that made me change my life direction in the first place. And it’s confusing.

“We must be willing to let go of the life we’ve planned, so as to have the life that is waiting for us.” — Joseph Campbell.

I let go of the life I had planned, but the life that is waiting for me is unclear. I’m unsure what to do, where to go next. Healthcare doesn’t fully accept me for me, but art doesn’t either. It has so much commodity and rewards so much self-absorbed-ness . Life is precious and there’s suffering – which art can help aid – but the Artworld doesn’t understand what I’ve been through, and felt, and why healthcare needs to be changed so others don’t have that experience.

But who will accept me? And why have I written this? Well, if finding my old resumes and pieces of my old life dotted around like dusty digital footprints has taught me anything today – is that we should be archiving our lives, our work, just incase we do forget what we’ve done. If we forget who we are, or who we were.

And I also know that there’s people like me out there. This here serves as a reminder for future Smizz – who will probably be doing something else completely insane – like a career in maths or something else I can’t do. And for anyone else going through a hard time.

You gotta swim, swim for the music that saves you when you’re not so sure you’ll survive. And swim when it hurts. The whole world is watching – and you’ve haven’t come this far to fall off the earth. Currents will pull you away from your love – just keep our heads above the water. Memories are like bullets and fire at you from a gun. We all get cracks in our armour – but don’t give in. Sometimes the nights won’t end. But you gotta swim for your families, your sisters, your brothers, your friends. You gotta get past wars without cause, past the lost politicians who don’t see their greed as a flaw. You gotta swim in the dark, there’s no shame in drifting, feel the tide shifting away from the spark. You gotta swim, don’t let yourself sink – you’ll find the horizon, please believe me – I promise you it’s not as far away as you think.

The current’s will always try and drag you away from your love- just keep your head above the water and swim.

Art is part of my being. It’s what makes me tick. It’s what makes me feel truly happy. But I also know I can’t let inequalities, and issues that exist that I know can be fixed – happen without any input.

So even though I had forgotten 80% of my art life. I’m going to put it down to trauma. I don’t necessarily think people are born as artists, but they certainly die as artists. I’m always going to be an artist – even if I lose my footing a bit. And I look forward to building more goals to combine art and suffering into better change.

I never want to forget who I am again.

 

 

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Hoping for a 2016 where we open the doors wider and take care of each another

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I am hoping for 2016 to be a year where we open the doors wider and take care of each another

Susan Sontag wrote in her “Illness as metaphor” (1978) essay ,

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. “

I’ve found myself asking myself, “Smizz, how do you get from here to there? ” I’ve spent the last few years trying to find my way back to the kingdom of the well. 2015 was all about screwing up maps, getting really, really lost. Like I’ve been using Bing maps instead of google maps.  I feel like my good-healthy passport needs renewing.

I get good days, even weeks, only to be knocked down by by more complications, more intense symptoms.  Life wasn’t going my way, but that’s something I’ve been learning to get used to and it happens to us all. I definitely cope better now,  but what I can’t get used to is the feeling of being broken.

And what’s scary is that most of this is happening to us all, in some shape or form: depression, low-self-esteem, a loved one being sick, unemployment, abuse, bullying, war. ect. At some point, we all loose our footing. And in the wake of trauma, sure footing can be hard to find.

When all this started, and I thought I was going to loose my life,  I was full of regret.

I had a good life –  But  why did I spend so much time on Facebook ? There was so much more I wanted to do, places I was worried I was never going to see. I always wanted to have a border collie puppy. I always wanted to own an american fridge with an ice maker (not sure why, I don’t even like ice in my drinks). But here i was thinking I’d never have any of that. And what about my artwork, my art-life? I had dedicated nearly 7 years of my life to what I was doing. And I had left it behind, without saying a word to most people except close friends.

I wrote a will. I settled my affairs – they told me to. And i was terrified because I’m an artist – and i was seeing a future where if I go blind, I might not get to do my work anymore.
But I’m alive. I’m alive! And I’ve learnt that there’s a big difference between surviving and living.

 

So in 2013, I was slumped over with fatigue. I barely got out of bed. But what I do realized then was that I couldn’t just keep living my same old life anymore because it just didn’t fit anymore. The stakes had changed. My life view was flipped. All that stuff i thought was important, turned out not to be that important.

In 5 months time, I HOPEFULLY will be a qualified radiotherapist.  I’ve spent the past 2 years being pulled through my course by my amazing friends and family whilst managing horrible, horrible side-effects/symptoms?.  I will be qualified to deliver radiotherapy treatments, create treatment plans,  innovate and care  for my patients and their carers going through the cancer pathway.  And I’m super excited and shit-scared. I took on this course for a number of reasons: One was to help me cope & have some understanding of the human body, and genetics and control, 2 was to give back to the NHS and to emulate the great care I was given & to irradicate the poor care I saw too. But ultimately it was to help make the difference I want to see, to make the pathway better for others. To enhance and help empower patients and their carers narratives. Because if there’s one thing I’ve learnt is when you’re sick – you feel vulnerable and voiceless.

And at first, this change was really, really hard. I’ve questioned my decision maybe a 1000 times. But it still feels right, even when I have to do 100 pointless academic tasks and I miss having free days to make and draw things I want to make.  But together with my friends we organized the (2014 & 2015) first student led Raditation oncology conference, I made the first radiotherapy patient information app, got a drawing published in journal of medical imaging and radiation sciences, won an award for my app, and presented at the international  Design4health conference, did some clinical experience in North America,  and went viral with this blog post about what we do in radiotherapy,  raised £850 for Doncaster Cancer Detection Trust and some more. All through combining art and radiation practice and empathy. All in 2015.

If you asked me 5 years ago if I saw myself here – the answer would have been – what’s radiotherapy? And errr nO?! If you asked me at the beginning of my course if I would be in 3rd year now, I wouldn’t have been so sure. But now here i am, trying to adapt healthcare research with creative methodologies.

l’ve experienced chronic pain and fatigue. I realized how debilitating it can be, and how rarely we take the time to understand it in others.  But this lesson is still being learnt. The experience is humbling and, more than anything, made me much more aware of – and empathetic to – the hurt that we ignore.

This, in particular, is my motivation going into 2016. My resolution (although I hate the word “resolution”; it sounds flimsy and self-obsessed) is to take more time recognizing the pain in others and offering solace whenever possible. I aim to keep the dialogue open with all of you, whether online or in-person. I want us to be open, and warm, even in the face of the unknown. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it – and one person CAN change the world.

2016 maybe full of joy for you. It maybe full of challenges. It’ll probably be full of both. However it all plays out, remember that we have each other. Don’t wait to be asked for help; you’re already being beckoned.

I started 2015 feeling lost in transition, the pain was really, really grinding me down. I cried like twice on clinical placement because I felt behind & that I’ve got a lot to loose, I gave up my art life. There’s no roadmap to picking up the pieces of a broken life.  So I’ve been drawing my own roadmap, and somewhere along the way, I’ve started to feel like I’m living again with the help of all of YOU – my friends.  I’ve visited 5 new countries this year. I chased the Northern Lights with my friends, we rode under Niagra Falls, we drank thrugh the worst icelandic storm of 30 years. And as I  have watched the ocean many times this year, it reminded that the suns set, but it will  rise again and everything keeps moving. But we don’t get forever. And that’s ok. We just have to make sure the stuff that counts, really fucking counts.

 

I hope that 2016 will hopefully bring me some more closure, and I’m hoping for less headahce, much less fatigue, more adventures, taking more photographs, seeing friends, better email action, laughter, fun, love and hope. And finishing & passing my degree without a nervous breakdown (lol) . And hopefully a job offer, if I’m lucky. You never know what the road has planned though.

Happy New Year friends,

With so much gratitude for you for getting me here

Unconditional love, lets make the world a better place in 2016!

Your good friend Smizz x

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The Heart of The Matter: Hope.

About 2 weeks ago I found out that I’ve been shortlisted for another award, this time for — “Most innovative student-driven digital tool” — for the design of my *future* Radiotherapy Treatment Patient Information App – “RADcare”. And I’m still blown away by the shortlist. I don’t think I’ll win, but this definitely feels like one of my most proudest moments of my life so far, and I don’t know why? I’m just so honoured and surprised by being shortlisted!

My story is one we can all relate/resonate with. I got stuck. Like, really stuck. I encountered an illness I never saw coming – and for the first time in my life – felt really lost, and out of control.  At such a young age too, in the middle of building my artist career, and shaping the rest of my life. I felt so misunderstood. And when you’re not understood, you feel almost worthless. Dealing with these feelings on top of very distressing symptoms whilst trying to continue to run your life as normal as possible is actually really hard.  I had experiences with the healthcare system – both amazing and poor. As a patient I often felt powerless, stupid, a hindrance — and ultimately — voiceless. This lead itself to personal anxieties. Sometimes I felt like no-one cared. (But this was not true at all). But also I got treated every-now-and-again-like family. Like an old friend, with kindness, love and care. I’ll never forget those moments. And I soon realized that, that’s all I wanted to do; To make people feel cared for & important, and needed, and even loved. And as with my art practice, all I’ve ever wanted to do is make a positive difference. To help people. To make people think, think of the injustices, to act upon these inequalities, to feel better, to make the world a better and more just/equal place. People are struggling all around us. Every single one of us has something we’re struggling with each day – although the degrees of struggle are massive.

People need people, and they need truth, heart & hope. Authenticity wins, every time.

I look to the world around me, with this continuing experience in hand. And I see that we need coffee shops, sunsets and roadtrips. New & old songs, planes, trains and food. Fast internet connection & Twitter – but most of all – we need other people in our lives.  And at some point in your life, you will need to be that “other” person to someone else who needs you. You will be their living breathing, screaming, invitation to help them believe in better things.

We do not know how long we’ve got here. We don’t know when fate will intervene. What we do know is that with every minute that we’ve got, we can live our lives in a way that takes nothing for granted. We can love deeply. We can help people who need help. We can teach our children what matters, and pass on empathy and compassion and selflessness. We can teach them to have broad shoulders. And that’s all I want, really.

My friends say that I’m a “Smizz of all trades, master of none” – because I go out of my way to learn new things if I can’t understand it. That’s why I do work in all areas, from art, to printing, to photography, to web and app coding and designing – I’m very well read in political & economics too – and now radiotherapy/healthcare.  If you’re unhappy with something – don’t wait for someone else to make the change for you.

So every encounter that I have with a person at work (colleague, friend, patient, ect), or outside work, I try to make them feel understood, AKA – valued/respected/dignified. 2 days ago, I did a first day chat with a patient & at the end I said I was a student – and she said, “That explains why you’ve spent more time with me & listened to me.”  Time is extremely fraught in all of our lives, but we must make time to try to understand people and their journey.

So that’s why I decided to make my Radiotherapy app (RADcare). To hopefully help patients and their careers understand what’s going to happen, be able to feel like they can take more control by knowing what’s going on and have good, coherent, interactive and personal information covering all aspects of their radiotherapy treatment journey.  I hope that by all of us having a better understanding, we can make time for the really important things. I hope the app will be really useful in the future, and really helps patients and their loved ones going through their journey, a better – less stressful – journey. (It’s worth pointing out here that the app is just an addition to a service & MUST NOT be used in place of information contact in person with healthcare professionals).

Living with an illness, or after, is really, really hard. Normal life is never normal again.  It makes changes – both psychological and physical – that you had never anticipated. But it’s not all bad. I now feel more empathetic to other struggles than I ever did before, I cry more than ever at injustices (not on you- so no worries), and I know now that time is what ever you make it – the days are long but the years are short.  It’s not about your grades, or your clothes, or car, or house. It’s about being with those who love you, doing what you love, and trying to be the change we need.

I hope I can bring big heart to every thing I work on. I especially hope I can achieve it with the app. Life is hard. And I wouldn’t have got here today – feeling extremely loved – without the support of all my amazing friends (you guyz!), course-mates, my mom & bro, my colleagues (NHS, uni, art, Doc/Fest- ect), my doctors & other healthcare professionals and everyone else.

Hope you can help me evaluate the prototype app soon! Much love, Smizz!

2014 moments: Hopes for 2015

My mom always says that on the first of the new year, you should do a little bit of everything good: small bits of good habits you want to carry through into the new year.

That’s how I’ve always tried to start every first day of the year, no matter where in the world I am.

This year, I am doing a little of the same here: going on (very) short runs, finishing unfinished books, starting a new one, do some writing, do some work, trying to be creative and challenge the boundaries. And then, because I’ll be in Lisbon, Portugal in a few days: I’m going to listen to some good music, go to galleries, eat whatever delightful food there is to wonder upon to and take a walk to explore and learn more about a new country, a new city and all it’s neighborhoods.

It allows for a little reflection, a little resetting, and a little bit of conscious forward-thinking about how you should spend the rest of the year.

That’s a little bit of everything good.

—->

I am, however, a kid of tradition (or superstitious – depends how you look at it). And if I find something that works – I go with it. i can’t take chances changing it.  Each year I sort of blaze over the best highlights, and then wish for the things I’d like to happen/achieve in 2015. It’s a good way to hold myself accountable – and additionally – i think it works 😉

2014 moments:

It was amazing. And bittersweet. And hardwork but full of laughs and adventures too.

Jan:

I sat my first ever exams in about 8 years. I can’t even remember how to do exams, but I passed all with Firsts. That was a trip!

My Slovakian Friends, Rado & Katka who I worked with for 2 years in the USA, came to live with us for a year! Exciting!

I did some cool work for TalkTalk

Gave a talk on #RONCrg twitter group that I run & recieved some great feedback.

Got Shep – the awesome German Shephard doggie!

Feb:

I started running & going to Row-Fit, which was really fun!

Found a new house for all of us to move into.

March:

Drew the International NHS Health Expo in Manchester, that was so rad!

Drew more stuff for TalkTalk

Got the HEADACHE from hell (which I still have as I type this).

April:

Had my first ever A&E admission [for worst headache ever], nothing like spending a night on an Emergency decision ward to make you appreciate the affects of life on people.

Went to NYC – got to see my friends exhibition, privately, and we got so drunk in the depths of Bushwick. I ended up seeing my first Brooklyn Bridge Sunrise (drunk), and worst hangover to date. I also had to take a plane to Vegas, hungover. So a bunch of firsts. It rained so hard that trip that I had to throw away my running sneakers.

May:

Saw my mom get married! Yay!

Went to Vegas from NYC – met with my great USA friend, Leah, and we had LOTS of including sneaking into pools and beach-pools that we weren’t supposed to & I accidently tipped a pool-boy $20. Call me generous.

Got Shingles – which I thought were bedbugs from NYC/Vegas – duh.

Sat some more exams which I passed pretty awesomely if I do say so myself.

June:

DREW THE AMAZING SHEFFIELD DOC/FEST!!!

More clinical placement antics. Really don’t remember anything of any value here. Just work, work, work.

July:

Got hit by a car & was pretty traumatised by it.

Was in our first ever HUGE house fire.

Started skateboarding again because my bike was fucked up.

Spent the last weeks of July trying to desperately do a whole years worth of ePortfolio in 6 weeks total. (I won’t be doing that again!)

Designed a website for my friend and her exhibition at YorkshireSculpturePark

August:

Passed palliative case discussion.

Got a super dope mark (SURPRISINGLY) for ePortfolio

Got mega cheap flights to USA – So went back to NYC & saw all my friends at Camp in New Hampshire!

Got Shingles AGAIN.

Got another old-puppy – Finnley the Border Collie!

September:

Was made a recluse because of Shingles.

Finished clinical for a bit – went back to uni. Moved back to Sheffield properly (rather than living in Leeds)

Did my first Pecha Kucha Talk! YAY!

Had an awesome house party!

Gemma left for New Zealand.

October:

Drew TEDXSalford

Drew stuff for University of Derby

Had an awesome Halloween pumpkin carving party at Charlottes!

WE ORGANIZED & HOSTED RAD conference successfully – YAY!

November:

Drew stuff for Uni of Sheff

Drew TEDXSheff

Had the bestest Thanksgiving!

December:

Went to Copenhagen & saw so much awesomely designed stuff!

Had an awesome Christmas!

HOPES FOR 2015

Here is my new list. It’s pretty much the same as last year with some re-thoughts. But I can’t stress enough my main goals are to:
STUDY-HARDER
BE MORE MOTIVATED
NOT WASTE TIME
WORK HARD (ER)
MAKE A DIFFERENCE (IN A POSITIVE WAY, SOME HOW)
MAKE TIME FOR FRIENDS
HELP OTHERS
HAVE MORE FUN
ADVENTURE
WHAT I WISH WISH WISH for in 2015: Keeping the same values/wishes/hopes/resolutions as last year:
  1. That my mom, bro, nan and friends are all super happy, heathy and that NO ONE DIES! Including ME! But I would die instead of the above people if it has to come down to that.
  2. Last year, and the year before that I asked for a job  that I enjoyed. I ended up getting at lots of cool small ones!  So thank you 2013 & 2014 for amazing job years;  PLEASE New Year help me find these golden eggs of opportunity and help me reach my potential. Help me make GREAT/BETTER impressions at the places where I currently work. Let me move small mountains. Please find extra work to fund me through uni. Please find me more amazing opportunities. Let me be BETTER. WORK HARDER. Even more so, PLEASE provide me with opportunities to help others and to make a positive difference! Esp. in radiotherapy.
  3. Make extra time for friends, make sure i actually see friends who live else where. Don’t let money define this.
  4. This year I need to be more motivated. Be more time-focused. Less TV and more drawing. More studying less sleeping.  This is also very, very do-able if I just organize my priorities too! I need to make more great art-works rather than just research and develop ideas that never get shown. I need to remember the stuff I learn in class! I need to be more confident in clinical.
  5. I really really hope that i can make a positive difference this year, help others that need it, and make the world a place i’m proud to live in.
  6. More teaching opportunities PLEASE! This is a must if i want a chance at achieving number 5! too
  7. I would like to interact with people better, so I can communicate effectively and be wayyy more better and likeable esp for clinical placement.
  8. As with any artist, any exhibition/residential/print opportunities no matter how small or little they may seem all adds to the endless cannon of critical thinking and art practice!
  9. I need to become more motivated to learn my material… I can only make the difference I want to make if I am disciplined enough to sit down and dedicate the time to master my craft. Please give me the strength, the focus and the motivation – and mostly the energy to do this!
  10. I just want to feel normal again. Like not have bone ache, or nightsweats, where i could get up in the morning and not feel insanely hungover despite not actually touched alcohol in weeks. I want to not feel SUPER tired for NO reason anymore. I want to be fit, i want to be healthy again, i just want my body and health back from circa 2006 (that was a good year ha!) I’d even take health back from circa 2010/early 2011.
  11. I’d like to take up running, agaaaaiiiinnnn. By the end of the year I want to run 10K – like a fit person.
  12. I know I can’t travel like I have done previous years, but I would absolutely love to visit USA again & do lots of small local EU travelling like to Italy!

Thanks 2014 for a dope year, 2015 I know you’ve got my back. Here’s to hard-work, game changing, trying to stay focused, fighting against the ordinary daily events, challenges and finding ways or re-focusing when things might not work out exactly as we might want them to. TO FRIENDSHIP yo!

Thank you, thank you, thank you.