gifts and choices

In my procrastination of trying to write up my methods section for RF2 (my next PhD barrier) I came across Jeff Bezos’s commencement speech from 2010. (Not super sure how I reached  it in my click-a-thon).

But I found it to be incredibly important.

After my life got shook up when I fell sick, I had to change how I worked, how I lived to move around shitty symptoms that really brought me down. It made me question everything I was, and who I am, and where I was going.  It hit me when I was on my way up in the intermediate art-world, and brought me tumbling back down to the ground, really hard – really unprepared for this new world – injured in so many different ways. Every time I looked at myself and my life, it was like looking at a mirror that had been cracked a bunch of times. I’m still not over it all.

At times, I feel more broken than I ever was, but I feel at different times and in different areas I have gained so much more. One area is in personal growth. Whilst I’m still trying and learning to be a better person (and sometimes failing,) I realized that I WANTED to REALLY be a better person. I had no idea how I was being supported years before I fell sick, and even still to this day, where I felt incredibly stupid for taking it all for granted.

Some days I literally feel like I’m dying, and with this came a fear of what would be my “legacy” (this is such a loaded and over-the-top word). But what do I want to leave behind? What do I want my work to be? We spend so much of our time at work, doing work – of all kinds – that it makes sense that we should try and enjoy and make the world a better place than what we found it in.  This doesn’t have to be a grandios project – we know it often only has to be the smallest thing that can make the greatest of differences. Listening.  Offering to help someone out.  Introducing yourself.  Donating to charity. To giving someone a helping hand up. The list is endless.

Bezos’s speech really resonated with me, and I think some of his words are good markers. Especially when the road is rough, and rocky, and risky and dark.  So I hope these bits I’ve chopped up here – help you.

In 1986, Jeff Bezos graduated from Princeton with a degree in computer science. In 1994, he founded Amazon.com. He was literally selling books from his garage. In 2010, he went back to Princeton to address the graduating class about the difference between gifts and choices — a profound reflection on reconciling being smart with being kind, an illusory choice many “successful” people feel like they have to make.

Cleverness is a gift, kindness is a choice. Gifts are easy — they’re given after all. Choices can be hard. You can seduce yourself with your gifts if you’re not careful, and if you do, it’ll probably be to the detriment of your choices.

Tomorrow, in a very real sense, your life — the life you author from scratch on your own — begins.

How will you use your gifts? What choices will you make?

Will inertia be your guide, or will you follow your passions?

Will you follow dogma, or will you be original?

Will you choose a life of ease, or a life of service and adventure?

Will you wilt under criticism, or will you follow your convictions?

Will you bluff it out when you’re wrong, or will you apologize?

Will you guard your heart against rejection, or will you act when you fall in love?

Will you play it safe, or will you be a little bit swashbuckling?

When it’s tough, will you give up, or will you be relentless?

Will you be a cynic, or will you be a builder?

Will you be clever at the expense of others, or will you be kind?

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Adventures Ahead: The Lake Moon

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I got my 6th USA work visa approved on Thursday in London and now I can allow my trip to feel real.

It’s been 3 years since I had the real freedom to leave the UK for a long-ish period of time. I’ve been pretty poorly in-general and then clinical placement or school work and money had been other reasons. But I’ve pined for this opportunity again.

When I left America in 2013, it was with a heavy heart – I didn’t know if or when I’d be coming back. And I certainly believed that I wouldn’t be coming back to work, maybe only for a small holiday – if I was lucky. In fact, every summer I get to see feels like a blessing.

Last year when we got to do our clinical elective in Canada and Boston last year, I felt what I had been missing.

For the past 3 years I’ve wandered the streets of Leeds on sunny days and closed my eyes and willed myself to think I’m back in New York. The sun, the heat, the buildings when you look up towards the sky, people pushing past you and back to back traffic in the city center is enough to trick yourself that you could be in NYC. I go to the movies and the smell of popcorn and coffee makes me feel like i could still be in NYC. Sometimes I hunt down all the food I love to drink and eat whilst in the USA to try and muster that same feeling; thai-tea, pangang curries, guc, chips, salsa and good tacos. But they’re all weak immitations.

I frequently have dreams of just walking around NYC and they’re freakishly real.

So I decided, last year, whether I could afford it or not – that I would work really hard to get to spend my last summer there. In the place where I was broken and found. A place where it made me believe in myself, showed me the kindness of strangers – people who I had only worked with whipped around & paid for my medical bills, and treated me like I was part of their families. The country with many people who have helped me believe that I can be and am an artist. Who completely inspire me with their unwavering work ethic.

Just like Barack, all my life, I have been stitching together a family, through stories or memories or friends or ideas. And these guys helped me put it all together and made my stitching stronger.

But now it’s all real, all pretty much official. I’m going back.

I’ve had many years thinking about how if you’re lucky enough to be doing work you love, it’s your responsibility to plan for the day when you can’t do it anymore. And it’s been hard.

I leave Leeds in 3 weeks. I arrive in NYC on the 17th June. We’re going to go to catch-up with amazing friends, go to art-openings, find the best bagel (still not managed it!), eat the best cheesecake on the beach, ride the Wonder Wheel, I’m going to draw, drink those favourite drinks of mine, sit in Williamsburg and complain how gentrified it’s getting, look over the city from roof-top bars and watch the sunset over the East River. I’ll wonder the streets at night, trying to take it all in – so I can continue to close my eyes and take myself back there when i need it the most.

Then we leave the crazy bustle of the city to  go a place that’s pretty cut off from the world. Basically no internet. No public transport once you get off the island by boat. We’ll arrive at Sandy Island – an island in the middle of a beautiful lake surrounded by mountains and tress/forests in New Hampshire. This will be home til September.  The moon sets bigger than my head here. Deer and bear roam, and you can fish or chuck pebbles into the lake from the sandy beach.  And you can lay on the baseball field and watch the milky-way & countless shooting stars. It’s pretty magical. It’s a good place to try and figure things out, to learn how to reconnect with people without having technology blare out for attention at you. You can literally leave the ‘real world’ behind.

We’ll then leave New Hampshire for a quick stop in NYC and then to San Francisco, CA.  I’m excited to run up the hills and skate down them. We’ll make fires on the beach and eat pizza whilst the sunsets. From here we’re going to Napa-valley, CA – drink some wine whilst paddling in fresh water in fields of vineyards whilst the sun sets. And go hiking in Yosemite, CA.  We’ll go back to fly out to Maui, Hawaii (a state I’ve yet to tick off my ‘life-list’ – making it 43 states I’ve visited!). Here we’re renting an apartment on the beach with turtles. I’ll hunt down the best acai-bowls to eat, and we’re going to hike some volcanos, surf and relax on the beach after the relentless work this past 3 years has taken.

Then we’re flying back the Seattle, WA – I’ll be re-connecting with some of my friends who are artists working on really cool social projects. And We’re taking the training to Vancouver, Canada – then back home!

And I CAN NOT WAIT. 

I’ll be chipping away at my bucket list – now re-named ‘the life-list’, making art, helping people with their projects, writing, taking photos, and working on myself, helping others. I’ve a million ideas for new projects, but I’m trying my best not to start anything. For a little while, at least.

Follow along if you like!
Life can seem so challenging sometimes. It’s a scramble up a rocky cliff that feels like it’s two grabs away from a landslide. But we’re not meant to do it alone. And we don’t have to do it all at once. Take time to take care of yourself and look back to see just how far you’ve come

“Time is space. You are moving through that galaxy. Wait for the stars.” – Matt Haig

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“It’s called a hustle, sweetheart.” The resolutely difficult advice to follow.

To celebrate getting a PhD scholarship, I did what any normal adult would do. I went straight to the movies (one of my favourite things to do) and went to see Zootopia (or Zootropolis as it’s called in the UK).  YOLO.

During the movie, it became clear why I had been patiently awaiting the release of this movie.

The film takes place in the vibrant, diverse world of Zootopia, a place where predators and prey live together in harmony, and are free to be whoever and whatever they want to be. These reasons are precisely why the land attracts Judy Hopps, a small bunny with dreams of being a police officer. Living on a farm, her parents fear this because, not only has a bunny never become a police officer, but they feel Judy should confine her aspirations to selling carrots on the family farm because that’s what is expected of her by society, something Judy has no interest in doing.

After successfully – but through hardship – completing police training, Judy is thrust into the force alongside other, more muscled animals such as rhinoceroses, rams, bulls, and elephants. Oh my.

Judy’s boss, Chief Bogo , a buffalo, forces her to be a “metermaid” while the other animals take on the bigger crimes, specifically a case involving fourteen missing predators. Judy tries to show herself by issuing over two-hundred citations in just a couple of hours, but to no avail, as Chief Bogo wants to make sure she knows her place on the Zootopia police force. When Judy winds up catching a weasel after robbing a store, she is just about to be fired when Chief Bogo tasks her with finding a local otter who has been missing for over a week. If she can find the otter in forty-eight hours or less, she can keep her job, but if she doesn’t, she’ll be forced to resign. Judy enlists in the help of Nick Wilde, a fox, one of the most looked-down-upon predators in Zootopia, who has been doing number of odd jobs since he was young, after blackmailing him in order to get him to cooperate. Together, the two work to find the otter, but in turn, discover something bigger. Oh my.

As you can probably tell, this is a film about both racism and sexism and underlying that – social-class (my favourite chip-on-my shoulder)  & how fear creates hate. Screenwriters Jared Bush and Paul Johnston carefully construct a world, predicated upon a particular dream, and within that world, populate it with a variety of characters, some labeled as normative, others quietly labeled as the enemy that many are waiting to step out of line. Bush and Johnston pen Zootopia carefully, but bluntly, to the point where you can’t ignore its profound, but simple message of inclusion and acceptance of peers. Oh my.

But on top of this, is the message about not giving up on your dreams, pushing boundaries and always attempting – no matter how hard it seems – to make the world a better place, no matter how small that thing is. Don’t let society dictate to you what they think you should be doing, if that’s what you really want. Always fight against the status quo.

I love movies with messages like this. Like Eddie The Eagle, who constantly shows us – it’s not about the triumph in life, it’s about the struggle. It’s about doing what you love, and not giving up in the face of immense adversity. Eddie The Eagle is another movie that shows the  working class character (based on truth this time) stick 2 fingers up (metaphorically, through determination) at the elitism of Great Britain Olympics Committee and whilst doesn’t win any medals, he wins a place in our hearts because he amplifies what it means to keep going.

Part of me sees my life narrative reflected in these hollywood-poetic license stories.  I think sometimes people think I’m exaggerating what I’ve been through in my life. From homelessness, domestic violence, i’ve had to be a carer, i’ve done some amazing travel, endured crazy poverty, the amount of jobs i’ve had to work to make ends meet or to do what others just naturally have the opportunity to do, life-altering (chronic) illness, terrible accidents (mostly on bike), fires, ect, ect. It’s all true. The good shadows the bad, but the bad has been pretty horrific – and I know many people from my background are enduring much worse. And society allows for this to happen, or to continue the unfairness that propels it further, or makes it difficult to get out of.

It gives me this weird -bittersweet – perspective of the world. I have my weight in empathy and in understanding how exploited and unfair and socially unjust our society is & how all the structures are generated to helping middle class and beyond people success, whilst discriminate those with less and working-class & below..  I think this kind of understanding probably only becomes so cemented when you experience life from the other side. Or see how your friends on the other side live.

I’m grateful to be alive,  I’m blessed to have all my friends, I’m just so lucky to have had the opportunities I’ve had and to follow what I love (art) & people pay me to do it for them & for the support I’ve had along the way & currently on this journey. I’ve visited many countries now because my university education allowed me a passport to see the world and work in different cultures.

 And literally, 17 year old smizz, or even current Smizz,  would never ever, ever, ever really  would believe i’d be here.

I’ve always felt a bit kind of behind everyone else, you know – in everything – art, radiotherapy, academia, life. Like a bit of an outsider, and a bit stupid. I’ve always had this chip-on my shoulder about the background I’ve come from & everything I’ve had to do to get where I am compared to a lot of my friends and peers. That i’m not as articulate, as likeable & as quick as others,  and I was worried I wouldn’t be able to compete. The world loves talent – but pays in character. And I kind of have neither.

And so it felt fitting, to celebrate my next chapter watching Zootopia. And Eddie the Eagle.  It reminds me that to “succeed”, we have to take risks.

We have to take bold leaps and move forward, brave and scared shitless at the same time. We will undoubtedly fall flat on our face. It happens. But we learn, make adjustments and not fall as hard or as far the next time.

But when we fail to trust ourselves to take that leap in the first place—that’s the real problem. It becomes an excuse to indulge our fear: to believe that we are not in fact talented or worthy enough— to believe that our crappy yet comfortable circumstances should win. This particular lack of momentum is called “Business As Usual” and it can continually crush our plans for greatness.

We don’t fail by falling. We only fail when we stop taking the leap. The idea is from Rumi’s observation, “Birds make great sky-circles of their freedom. How do they learn it?
They fall and falling, they’re given wings.”

Keep going. Keep jumping, keep falling. Don’t let others, or society imply, what you should be doing and how to do it.

I’ll try and remember this too.

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The world isn’t yet done.

Being freelance and working from home, I slowly turned into a sucker for cooking shows like Masterchef, The Great British Bake-Off, The Taste, Come-Dine-With me, and almost anything on the Food Network. No cooking show was too long or too low-brow and underproduced for me.  I thought it was probably an age thing – I never watched this stuff when I was younger: turned out it was just a love of different foods (probs due to aging-maturity) but I think it was more to do with avoiding doing work/relaxation thing. This became clearer as a healthcare student – I watched these shows even more religiously. The MasterChef series is ALWAYS on when I’m trying to revise for exams or have 100 deadlines. Trying to avoid reality.

One day after clinical placement, my housemates and I sat down with our food to eat and watch food on the TV. This was a show about a bunch of chefs trying to make it in this Italian restaurant/bakery engrained in tradition and processes. One of the young chefs tries to take a bunch of short-cuts and the older chefs catches him – and tells him off – saying, “that’s not how we do it here! We do it the long, hard, stupid way”. Which is stuff like not using yesterdays bread, making fresh new bread instead, making the soup from scratch. ect ect.

And this really stuck with me. The Long-Hard-Stupid-Way.

I think I do everything the long, hard, stupid way. I often get told this. If there’s an easy or a hard way – you can guarantee that i’ll find the hardest way first. My mom says it’s because I don’t have any common sense.

But I started thinking about the routes I’ve taken to get where I am now. And I wonder if I could take an easier path – would i have taken it? The answer is probably no. And I started finding pleasure in reflecting upon this rough, hard-stupid-way path.

There’s a whole spectrum of – here’s the long hard stupid way  – which is ultimately the way I seem to be compelled to make & do things, and then at the other end we have super efficient way over there.

When you work the long hard stupid way – it looks a lot like worrying, scratching new ideas, endless notebooks, trying to learn things you’d never dream of  doing before, it’s a lot of others looking at you like you’ve got it wrong, it’s staying up late and then having to get up early the next day (killer), it’s not returning your library books on time,  but all of these actions are inspired by just caring a lot.

That’s not to say you can’t be efficient and not care deeply – but i, personally, don’t know how to do that.

But behind the long-hard-stupid way is a gift. It’s a lot of heart.

It’s staying up late, and sketching out plans and learning how to code smart-phone apps (FYI – it’s not the same as making a website which I originally thought it would be. Just because you know italian doesn’t mean you’ll be able to speak french), and taking the time to make it – without ever thinking about having a plan to make it accessible. Turns out making apps is a rollercoaster.

It’s going through a really testing health-issue, that literally breaks who you are – and makes you question everything you are & your worth– and going through the system that doesn’t know what to do with you – because you’re not a child and not an old adult – and instead of being a normal person and try and change the system from the outside, you decide to re-train and try to make the difference yourself,  inside the system.

It’s deciding to apply for things you’ll probably never get accepted to do – for the love of learning new things, and the process, and meeting new people – & ultimately hoping that the rejection and the attempt itself  will lead to more change and things to build upon for the future.

And most of all, it’s deciding to do all of it together – at once. Long-hard-stupid-way.

Freelancing is often the long-hard-stupid-way. You’re never sure how much work you’re ever going to get. So you just say yes to pretty much everything, just on the off chance you hit a lull and therefore you’ll still have some money coming in.  All the while – burning yourself out. The thing is, you always work more hours than you get paid to work. Life-work balance is hard to strike. And you can never officially take a sick day.

Working alone is hard. Being your own investor is hard (& stupid sometimes). And running all of these things together – teaching, app making, website designing, conference drawing, illustration commissioning, clinical-student-ing, academic-working – all while feeling crappy & being broke- is super long, hard  & stupid – and to do it responsibly is even harder.

Learning to work your life-balances out is hardwork. And it’ll probably take you some long-hard-stupid-ways before you know when is the right time to say yes and when to say no. A friend of mine when i was feeling so awful from fatigue & I felt like i was letting people down told me – you gotta say no if you really want to say yes.

Would i have ever wanted to go straight into healthcare from school? The answer would have been hell-naw. I didn’t have the empathy. I didn’t have the experiences I have now. I needed to experience the hardship to gain the drive.

So even though the long, hard, stupid way is just that, what it produces is something cool. When we work this way, it sort of gains an empheral quality. It’s sort of in the air – everything always feels up in the air. Whenever we make things this way – either for ourselves or for other people. There’s some kind of value in that. And that value exists outside of commericalization or money. And I love that. It sort of becomes a gift.

The thing with gifts is that – you have to be given a gift. You can’t ask for one. The more a gift moves, the more value it gains (has it been passed on through the family, does it fill a gap – a representation of a bond, is it using someones time) — like wise – the more work you put into something – the more value is gained. Ultimately a gift  is a sacrifice.

Essentially the best work I do is when I say something or do something or give something , to really help people (in every/any way), or to people I really care about.

But the biggest potential is that – Doing things the long, hard, stupid way – you learn all sorts (mostly wrong things) – but you get a gift. Or you create a gift for others.

It’s that you can build a foundation or something for people. My practice is driven by my  belief in making things for other people. Whether that’s making time to listen and to help, making something to make people think, making something that will better their experience, making something that brings people together, to make someone laugh or feel heard. By making something for other people, by considering someone else it moves the edges of our beings closer together and we gain more overlap in the process.

And we should look at these overlaps, to talk to each other. to know what we all have in common and to create more situations to create more commonalities. And by doing this we can some how grasp the wonder that is so hard to grasp – of what lies in the heart of making – and making things the long, hard, stupid way.

And when I think about all the awful things this government is doing and pushing through – from ruining the NHS, and demoralizing Junior Doctors, to entrenching a future generation in 50,000 + debt for education, to cruel benefit changes, to making students criminals if they can’t pay back their student loan immediately after they’ve finished university, to trying to get rid of our human rights, to airstriking syria, to stopping free dinners for children who can’t afford to eat. It makes me so, so, so angry. And even helpless.

But the long, hard, stupid way is all about continuing to try, push and make something – we don’t care about barriers – or the challenges – or even the outcome: the gift that comes out of making things for others shows and says for  us to stop, look and look around us. It says everything is possible again. And the world isn’t yet done.

If we can find the courage, and the strength to make things (whatever that is) for others, we can give these gifts back to one another. There’s so much more what unites us than what separates us. People power goes a long way – even if its the long, hard, stupid way.

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What should you be spending more time on?

I’m self-employed, and a full-time clinical based health-care student – and professional poorly person.  So I can’t stop thinking about work. When you’re by yourself, it’s easy to overwork yourself.

I’ve realized recently that my family (my mom & my bro) is full of people who work very hard. They all work extremely hard and they enjoy it. It took years for me to figure out that that’s a trait that was passed onto me.

When I’m working, I’m being functional and useful to someone, but I’m also making money to pay the rent. When I can, I like to work on personal projects because it gives me an avenue for self-expression – and to try and make change. I can put work out on the Internet that people might like and, by extension, hopefully like me. Which is secretly a lot of what I want from my work.

What I’m realizing is that there are other areas of my life that need that same sort of focus and rigor that I give to work & sleep. There are friendships and relationships and things that are every bit as important.

There’s half of me that is very proud of the work that I’ve made and where it has taken me. But there’s another half of me that knows that I live in Leeds/Sheffield/Doncaster and that I’m very privileged to already have a masters,  be studying radiotherapy and making the work I’m making. When I was growing up, my mom worked 2 low-paid jobs – just to make rent. These days, she only works 1 low-paid job to try and make rent. No one ever told me i could or should go to university – because it wasn’t ever a thing, no one does that in my family. I just discovered it some how in the last year and half of school but my mom has always been so supportive of everything I do, she basically told me ‘Don’t just do something to make money, find something you love and find someone who appreciates you for it. And then try and get a job.’ Whilst she was drunk last weekend she told me to, “Try, take risks, fail doing stuff, because it doesn’t matter – this is always your home. You will always have a roof over your head. I just want you to be happy. I don’t care if you fail or get 100% – because you’ll get there — and I’m proud of you anyways.”

I’m always  aware of where I come from.  My friends parents know all about the league tables of the universities they attend, and their parents help them pay the rent.  They come from homes with hot-tubs, and convertible cars.  No one in my family understands the value of higher education. But it doesn’t mean they don’t support me – even if they think what I do (my art-freelancing stuff) “isn’t a real job” lol.    But I’m also aware of where I am now and how I can help more people get to where I am. Maybe a little thing that I do can make a difference, even if it’s just very slight.

That’s probably a bit naive, but these are big things that sometimes need to be reduced so we can start to deal with them. A tweet, blogpost, whatever, isn’t going to solve the problems we have with inequality and privilege, but it might help us slowly move incrementally to something better than what we currently have.

Empathy is first an act of imagination. I know how difficult it is to get from one side to the other. But if we spent more time teaching, sharing, learning, listening — I think we could make something better.

 

 

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.

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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.

 

 

Getting sick was (is) the worst thing that ever happened to me, but

Last week Facebook memories reminded me that the exact week in 2012, I wrote on my Facebook status that I was finally seeing a NHS haemotologist oncologist after my crazy USA medical adventure. I have certain dates etched into my collective memory, which feel like I’ll never be able to erase , even if I wanted to. But this date had slipped my memory.  In the facebook status I wrote how many people had sent so many great and supportive messages and had helped me so much. The same still stands today.
Every so often I get a message from someone who’s heard my story, seen my whining tweets/blog,  or I get contacted by various volunteer coordinators for my work with and fundraising for various charities.
Every time, I’m nervous about how the call or the email will go.
But what happens is that they get in touch and often share with me these amazing, personal, intimate stories. These stories are of hardship, courage, loneliness, heaviness, of life and death. Of feeling disempowered, the feeling of the weight of time.
Will I be able to help them? What will I say to this person who’s going through what I know is probably the hardest thing they’ve ever done? I see and feel it every day at work too.
And EVERY TIME, every day I’m amazed.
Amazed by how optimistic and brave people can be, even when they’re terrified. Amazed that even when their life, or loved ones life, was/is on the line and there’s little they can do, we can laugh together about pain, side effects, the dumb things that go along with this life with whatever the struggle is.
Raising money to try and get Radiotherapy in Doncaster ( http://justgiving.com/sarah-smizz1 ) has opened up another opportunity for people to share their stories with me. I feel constantly humbled, and touched that they’ve chosen to share their narrative with me, and want to support me too.
 It reminded me of this website a friend showed me based in Canada, about the faces of healthcare. I think I am going to make something similiar in the UK. I am going to create a beautiful visual platform to help share peoples stories to help us learn from and build better connections and services, and make us think as healthcare professionals how we connect with people. And to also help celebrate not only these peoples lives & struggles, but also how awesome the NHS and it’s staff are too.
This time of year always makes my wounds feel rawer, but my need to thank and be grateful gets more intense too.
 Getting sick was (is) the worst thing that ever happened to me, but in so many ways it brought out the best in me. I guess I shouldn’t be surprised it does the same in others.
3 weeks & 5 days till I can go OTT on giving thanks. FRIENDSGIVING, and y’all are all invited 🙂

In search of a resolution

Before i embarked on my North American clinical & holiday experience, my GP suggested that maybe I should talk to someone who has the time to listen — about everything — from my crazy medical journey to my past dotted with potential traumas. So after a few days of being back in the UK, I saw that recommended counsellor to talk about my nearing 4-5 year medical journey.

I wasn’t best pleased about the idea. It felt like a personal failure. I wasn’t even sure what we’d even talk about — and I certainly wasn’t pleased about the potential things he might make me do – a group session of our feelings perhaps, keeping diaries, ect? Really not Smizz style. But I duly went along because I’ll do anything to feel better, or cope better, and if my nearly upcoming 2 year long headache is something to do with a personal-trauma then let’s get it sorted.

But I was pleasantly surprised. VERY surprised.  I can’t explain how nice it was to just talk to someone impartial who listened compassionately – who was really helpful. He was consistently open. And I don’t think I’ve ever had someone so good at listening, listen to me before. I spoke about how hard it’s been. How misunderstood  & alone I feel in the (health) system. The constant feeling like my time is limited. How I want to make a positive difference. How i feel like a hindrance – to friends, and the NHS. How it’s completely changed my life upside down, inside out, and all the big adjustments I’ve had to make to keep living life as normally as i can. how it affects my work, my relationships, my social time. How it’s hard to live life normally, when it’s no longer my normal life. He made lots of suggestions – including that I should continue to live my life to the fullest.  I left feeling a lil bit lighter. With more food for thought. Because I’ve been dealing with everything alone for some time now, I’ve read A LOT of stuff out there on coping with life adjustments, chronic illnesses, chronic fatigue & pain – ect, ect. And I’ve adapted A LOT of these into my life, so I’m coping well, so I don’t have to go back unless I want to go back and chat – whenever – — since I’m already doing what some of the services offer – and have an awesome support system of friends & fam (who read my whiney long emails and blog posts and tweets). It was especially nice when he said I should be proud for how far i’ve come & how i’ve coped. And that feels weird that I needed to be praised for it — but I guess I needed my struggle to be acknowledged on some level – to feel like I’ve been heard & that it’s been really difficult.

I tell the world wide web about this experience because i know I put off ever going. But I’d recommend and encourage anyone going through something that has changed your life, a struggle- current – ongoing – or past that has changed you, something that’s not resolved itself, if you’re feeling really low, alone, need someone to listen to you – you should go (it’s free, obvs – and it’s really not like you’d expect it be. I genuinely can’t say how good it was) You’re not alone . The cancer of so many struggles is feeling like you need to deal with it in isolation. & it’s difficult because certain (medical) experiences are all uniquely personal. But let others help carry your burden. I know that I’m super lucky because I’ve always got friends and fam who will help me carry the burden – but there’s always more – there’s always stuff there that you didn’t know was there.

So I was up this morning, watching this sunrise — thinking.

Screen Shot 2015-09-27 at 14.19.43
There’s a lot I don’t know, there’s a lot I’m still learning. When I think I’m letting go, I find that my body its still burning. 
And I’m still held down, and Its still got me living in the past. Come on and pick me up. Someone help me clear this wreckage from the blast. But i’m alive. & I don’t need a witness to know that I survived. I’m not looking for forgiveness but I need a light in the dark to search for a resolution.

Sometimes I feel like I’ve gone from 0 to 100. I’m going to try and start rock climbing (once i get my dodgy foot looked at) – i’m back on my fixie and I’ve told myself — I’m going to go a search for the Northern Lights over this next year.  I really want to use this crazy medical/life experience to make the pathways so much better for future patients / service users. We should see every act as a contribution to a finite set of acts, all building to a contribution of goodness to the world. We should not delay working on the things that make us feel alive in the world, and help the world feel alive. We spend so little time trying to make the most out of the time we get. Your time is too valuable to let a moment go to waste. Steal as much life as you can out of each day

Post Traumatic Growth – Trying to Make Sense of Things

One thing that my friends know about me, is that I constantly think about our existence.

As a kid, during computer club after-school – after printing out a million pictures of Lil’ Bow Wow to add to my collage shrine to the pint-sized rapper – I then pretended to be a 16/17 year old on a Philosophy Forum (I was about 13/14). I didn’t grow up with books, no one in my family is interested in the human condition – in fact I grew up with the plight of survival – the art of just getting by. On whatever that was. Ketchup sandwiches for lunch because that’s all we had in the house, and the rent was due – and in massive arreas. But I constantly thought that there must be more. I would devoure and try to understand these philosophical ideas on time, and fate, and existence. Ultimately – being.

By the time I got to university, by myself, by my own hardwork – and my own investment and time – with some guidance from a few teachers that believed in me at school – I started to think that the shit that I had endured years of my life – was part of a destined path. An experience I had to learn from. It taught me about social justice, the differences between in having very, very little and having a decent amount, it made me know that society is unfairly distributed – the marxist in me. I thought that it was practice – to give me a sense of what it’s like – and that I had got to where I was (uni) so I had some tools, a way to help make a difference, using this experience in hand. I had – and still continue to do so – imposter syndrome though. I thought I’d drop out, that I wouldn’t be smart enough, ect, ect. But the complete opposite happened and I always quote my best friends at uni as the reason why I fell head over heels in love with art, with learning, with working even harder than I ever had before on this passion of mine.

I’d think of all the factors that lead me to meeting them, and decided it was fate. That I had acted in a specific way, met all these people- specifically for a reason. Without them, I wouldn’t be here. I wouldn’t have had a specific experience, they wouldn’t have helped me, ect. That it was kind of written in the stars.

Now, maybe it is – probably it isn’t. The logical person in me says – no way. It’s just coincidence and it would be the same outcomes irrespectively because I’m a pretty decent judge of character.  The person – which is by far a bigger part of me – knows that psychological this is some sort of coping mechanism. And that actually, every person brings something different to any and every situtation. And I know a kid from my background has actually jumped a bunch of odds, and so I believe it’s some sort of fate thing. But i know I haven’t got here alone.

When I fell sick. I couldn’t get out of bed. I think back to when I was around 24 – and I actually can’t remember that year very well at all because I spent so little of it conscious. I couldn’t reply to emails – I’d go to sleep at 6-7pm, and not get up until 1-2PM and I’d force myself to get up – I’d attempt some drawing commission work for 3 hours or so. Waiting for 5-6pm to come back around as a decent time to get showered and go back to bed and replay this whole cycle. Over and over. Every minute awake felt like I was being crushed, I’d have day-chills, nose-bleeds, nightsweats, and the worst pain.

I felt like I was going to die. I was angry, upset, in pain, why me? I had lost who I had spent so many years building. Smizz the kid who’d reply an email in an instant, who could juggle a bazillion things at once, who kept down and writing and who couldn’t understand why others couldn’t be as committed to making the change. I lost that. I had lost my identity. But it didn’t matter anyways – because was it even important? Crisis, or what.

But through my health experience, I naturally did what I had done throughout my life. There was some sort of reason why this had happened to me, surely. Just another lesson. I still feel shit, and I have a bunch of stuff that constantly keeps happening to me.  I knew this awful experience – throughout the healthcare system – meant that I could change it – even if it was just being there to listen to patients. My shitty health changed me.

Occasionally I feel stronger than I did before,  more spontaneous and open to new experiences and even quicker to laugh. I might still sweat the unimportant stuff – like ePortfolio, an exam, but I know deep down it’s kind of meaningless in the greater scheme of things.  Not that I haven’t struggled. I still have to deal with disorienting symptoms daily, and there are still days when I’m stopped in my tracks by grief. I still mourne the loss of the old Smizz. I constantly see my GP – like every few months, a plead with him that there’s got to be a way to stop feeling this fatigue, to stop feeling the pain.  Even so, I try and use all these experiences as a springboard.

I made the RADCARE radiotherapy Patient information app – which won an award. I won the Health & Wellbeing Student Award for Leadership, I’m quite proud that my patients seem to give really nice feedback about me to my mentors on clinical placement, I’ve drawn loads of stuff to help change patient experience, patient involvement, to engage people across the spectrum – from enhancing Prostate cancer care, to Dying Matters and the End Of Life Care Pathway, and now I’m going to Toronto – and Harvard over the next 2 months to learn more and bring back these experiences to see if I can begin to invigorate the pathways for better supportive care.

People always think jumping from art to healthcare is a jump. And perhaps it is. But I don’t really see it as that. In my many hours spent trawling through the internet looking for explanations, looking for things that can help with my pain/fatigue. I found that there’s a name for how I’ve built myself.  post-traumatic growth (PTG), a term coined by Richard Tedeschi, PhD, a professor of psychology at the University of North Carolina. Dozens of studies have shown that trauma survivors can change in profound ways. And it goes well beyond resilience, or bouncing back from adversity. “With post-traumatic growth, a person who has faced difficult challenges doesn’t just return to baseline, which is what happens with resilience,” explains Tedeschi. “They change in fundamental, sometimes dramatic, ways.”

Whilst I still mourn my old life, how I could stay up later and was pain free -and ultimately more care-free. I’m not super sure I would change it on reflection. I feel wiser, I feel more emphatic, I know what’s important – my family & friends, I’m less of dick now, I feel even more motivated to get out there to help others, I’ve built the most unlikely friendships – even with my doctors – and working in healthcare has opened up way more opportunities for my artistic practice than I ever hoped to believe. I never knew that actually now is the time to be a healthcare worker artist!

now I’m not saying every bad thing has to have a happy ending, acceptance nor do you have to oozze rainbows and sickening positivity – sometimes I think that can be counterproductive too. I think it’s finding meaning on your own terms to give you some ownership to the shitty things that happen that are ultimately usually out of our control.

When I won the award for my app – I felt a huge massive amount of pride. Something I’ve not felt in a really long time. And I think it’s because I designed it – with my experience in hand – with my patients stories in the other – with my passion for making things and wanting to help people. I wouldn’t be here right now if I never fell sick and my life changed in a way I didn’t want it to. I can still barely see where I am going, I’m still amazed I’m still on my course, that I’m still alive. I think I felt the pride because i realized that to get here I’ve had to trust myself, to learn from my bodies failure. To know that I have the bestest friends and family behind me 100% of the way in whatever I do. Because, like I said, without them anyways – i wouldn’t be here now – regardless.

Time: Before I’m Gone

Time.

Time fascinates me no end. I’ve read a lot of theories about time.

Can you remember when the 6 week summer holidays used to feel so long and hazy and hot? And now, before you know it, it’s already summer when it was only just Christmas. And you’re left thinking? Whoa, time!?

I just read a book called Time Warped by Claudia Hammond, which talks at length about how we perceive time. One of her arguments is that as we get older, we have fewer meaningful experiences. We fall into a routine of sorts and life becomes less memorable, which makes our perception of time feel like it’s speeding up as we age. It’s kind of a sad idea. But it does put things into perspective. We should be doing more things that are memorable! YOLO.

Another theory, by Paul Janet, is that we perceive time as relative to the ‘absolute’ time that we can compare it to. For example, when you’re born a day will feel MEGA long because it is literally ALL of your life. By the time your 50, a year will be 1 50th of your life. So that could explain why summer holidays felt longer than they do now, and waiting around fro christmas felt like a small lifetime. Because in time-terms – it was.

I’m not too sure on the latter explanation, as last summer when I was trying to learn the ropes of clinical radiation oncology and juggle the worst headache – the weeks felt long. Oh so very long. Now I know what I’m doing more, this summer has flown by. The years do feel shorter though and so I believe that time is a combination of both of those theories.

Money and time are both saved and spent. The more money that’s in the market, the less it becomes worth. Similarly, when you become aware of your time – and if you think it’s running out – or becoming shorter – the more worth it seems the accumulate. However, money can be circulated, you can get it back by many means, but time is fully-spent. Once time is gone, you can never get it back.

Death is always a surprise. No one expects it. We are never ready. It is never the right time. By the time it comes, you won’t have done all the things you wanted and should have done.

Sometimes I feel like I’m cheating time. I’ve been run over, fallen from buildings, been in a fire, and more. When I fell sick – I genuinely thought my time was coming to an end. I have days and weeks where I believe I’m going to live many years into old, old age. And then I have some days where I feel so poorly, and have the weirdest shit happen to me that I wonder if I’ll be here next year.

And then I have days – like yesterday – where you get a text in the middle of the train station and it literally takes away your breath and makes you forget how to breath.  I didn’t know what to do with myself. It makes you realize we care too much about things that don’t matter much. I’ve preached this before and often. Because when I’m in my everyday cycle – where I feel ok. The weight of mortality – that painful reminder – isn’t as ever present compared to when I’m in great pain.

Now I’m suddenly feeling this sense of urgency, again. For everything. Especially to spend more time with my mom & my nan & my bro, and my friends, and the world; to try and see them sooner rather than later.  And to correct all the wrong doings I’ve done (just stupid teenager-y stuff) It’s a lesson I keep on trying not to forget (and sometimes I do, and that’s bad).

All this has made me think, it’s not so much that we have so little time; it’s that we have so little awareness of time itself.

So I’m preparing to leave things in a way that if anything does happen to me – sooner rather than later, I have left my mark – I’ve left a trail – of something. I’m going to write blog-posts – letters – cards – emails. Sporadically. Thanking, forgiving, offering, planning, helping, laughing, grieving, making up for lost time and maybe even cheating time in the process.

As my nan says, “It all feels the same,”. Let’s not get caught up in meaninglessness. And let’s enjoy every second we get – together.

To the importance of time & what gives it weight.

Much Love, SMIZZ