The Year of Zinc

I’ve not blogged in ages. I keep reflecting, but it’s stored in hidden word documents on my laptop – sometimes making an appearance at a conference, or on my Facebook – in the safety of friends and not just the internet-public.

But I’ve been thinking about getting to 30. Alive. I really can’t believe it.

26232058_10155729342256508_24155792453069920_o

On the periodic table 30  is the element Zinc. Roughly one third of all metallic zinc produced today is used in a process known as galvanization. During galvanization, an object that is subject to corrosion, such as an iron nail, is given a protective coating of zinc. I like the idea that my new decade is started with the year of Zinc: an element that is most useful in trying to stop corrosion.

5 years ago, an event happened that changed my life. Some of you where there, and others have followed the progress reports. But, honestly, i think it’ll take a full ten years for me to understand the impact and outcome of that one event.

26230979_10155729351741508_3632719397441686654_n

Life in many ways is like a paint by numbers book, where you can colour, one tiny bit at a time but within invisible lines. The whole picture emerges much later. Perhaps Steve Jobs said it best:

“You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever.”

A decade ago, today, if you had asked me today if my life would turn out the way it has done — I wouldn’t have been able to answer that question. In many ways, life has been so much better than I ever really thought it would be!
18622486_10155064070551508_622901385659812572_n-1
Getting to 30 isn’t really big news, but it’s a biggie for me, and ANY of my friends will vouch for me – I never thought I would make it to here. I thought this at high-school. I guess living in abject poverty makes you feel like this – like there’s no future. And this was even before I fell sick. But then when I did fall sick, I would look at what was happening to me and how i felt and thought for sure I wouldn’t be alive by now. At times, I actually didn’t want to live. Like, I just felt like I couldn’t live with this kind of pain – for the rest of my life – without someone understanding what this experience was doing to me with me.

So, I’m really grateful to be getting here.

26232369_10155729356106508_8051937412151038125_o

Despite this being kinda big news for me, i’m surprisingly anxious about it all too. I still feel 21 in my head. I still get I.D’d for booze at bars & M&S when buying BucksFizz, and if I’m really trying it on, I can still get Teen cinema tickets at the local Odeon.
My life is that of an 18 year olds. I moved back home, have no kids, no pension, basically a few $ in savings, the worst credit history – ever. I’m still a student, albeit I prefer researcher now (PhD). But 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 confidence, and money and I spent a whole lot of it when I got it — YOLOing or trying to find cures for my fatigue (all didn’t work BTW).
Processed with VSCO with hb1 preset

Processed with VSCO with hb1 preset

By societies standards, I’m not a success. And I can feel it. I should have *done more* by now. People my age are consultants and own houses, and head-teachers and more. And it’s hard not to compare yourself. 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 do think about that a lot.
13909309_10154215791566508_1529846474189984075_o
Confronting mortality makes you ask some fundamental questions of yourself and your relationships. It makes you a lot more honest with yourself. It forces you to say no more often, for you know the fleeting nature of life, the minuscule time we have on the planet and what matters is how we choose to spend it. And how you choose to act aswell.
13235351_10153524944696516_4657960027669526504_o
But 30 years is a long time to have witnessed change and fragility.  Over the past 5 years of ‘illness’, I realised that BEING alive and FEELING alive are 2 different things. And what I’ve learnt over 30 years is what Oprah’s words from her Golden Globes speech encapsulated:

“What I know for sure is that speaking your truth is the most powerful tool you have.”

DSC04075

I recently read Dr Rod Kersh’s response to Henry Marsh’s guardian article  on the treatment by the legal system and the media, of a transplant surgeon scaring in his initials into patients livers.

And it got me thinking about empathy, and dignity, and teams and Zinc. Rod is one of the most compassionate (& innovative) doctors I know.  I first met him like 5 years ago. It was my 3rd time ever at a hospital appointment. I still hadn’t learnt how to “behave” in these situations (i think i still struggle with what to say and what not to mention even now).  But I still remember our first clinic with clarity, exact words and phrases. He told me how he was going to treat/talk to me (like an equal).  And it properly threw me. I thought about it for weeks afterwards. It was a weird thing to say. But it properly made me feel like I could trust him, that I (my life) was important. This phrase was further backed up by his actions, because in trying to describe what was happening to me, i described it more in how these symptoms was really hindering my life. And he was super intrigued by this. He’s the only doctor (except the ENT doctor this week who was genuinely concerned with my massive hearing loss and my quality of life/future) who seemed to gauge what was important to me. I noticed that when people didn’t hear me out, it made me feel more desperate. (That’s not to say everyone else I see or have seen don’t care… because that’s simply not true at all, but there’s a difference in acknowledging).

26196212_10155729361401508_7046809245281834131_n

He, and a few of my HCP, inspired me to be the best healthcare professional I could be. I subconsciously learnt what was good care and what wasn’t as good as that. And now everytime I am with a patient, I remember what is important to me when I am in this system. And the differences in actions and languages. And I want to make sure people feel seen and heard. Feel like whatever they’re telling me that is bothering them in their lives, that it matters. That they matter. Despite whatever is happening. Because often people just want to be heard.

13320519_10154041065631508_7429482640041572543_o

Many forget that it’s a rare privilege to find something you care about so deeply and be able to make it part of your life. For me, I realize that it makes sense that 30 is Zinc.  I am so endlessly grateful. These years have gifted me experiences, skills, lessons, and friendships. I would not be me without them because these people: my friends, teams, colleagues, working together – have acted like Zinc. 

26731674_10155729408506508_1613470528407362670_n

They have provided me with a coating, that has helped to ease the corrosion of life (from art, to work, to learning, to sickness and more). And in doing so have taught me how to be Zinc too.

You will never regret offering dignity to others.

We rarely get into trouble because we overdo our sense of justice and fairness. Not just us, but where we work, the others we influence. Organizations and governments are nothing but people, and every day we get a chance to become better versions of ourselves.

26198662_10155729371016508_3317734056922904311_o

And yet… in the moments when we think no one is looking, when the stakes are high, we can forget. It’s worth remembering that justice and dignity aren’t only offered on behalf of others.

Offering people the chance to be treated the way we’d like to be treated benefits us too. It goes around.

11951878_10153459295211508_6103714190593318793_n

The false scarcity is this: we believe that shutting out others, keeping them out of our orbit, our country, our competitive space—that this somehow makes things more easier for us.

But today, value isn’t created by filling a slot, it’s created by connection. By the combinations created by people. By the magic that comes from diversity of opinion, background and motivation. Connection leads to ideas, to solutions, to breakthroughs.

26840616_10155742486586508_7668713170692508625_o.jpg

The false scarcity stated as, “I don’t have enough, you can’t have any,” is more truthfully, “together, we can create something better.”

18221922_1517658601586429_4659177885555474145_n

And going forwards in setting the tone to my next decade is just that. To be Zinc: to help, share, collaborate and support. To be compassionate and empathetic.  I will do whatever it takes.

I just like to take this moment to say thank you to everyone in my life who have gotten me here too (from everything). I love y’all! Keep being awesome!

26677841_10155743410866508_6405139282187911718_o

Advertisements

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

Every transformation that we are witness to changes the world, & this in turn, changes us: 3.5 weeks of lessons in PhD-kingdom

It’s only been basically 3.5 weeks of being an enrolled PhD student. And what is it teaching me?

Well, I’m being schooled,  once again.

I keep being met with questions of what I’ve done – and I try to justify my lack of products with: “I’ve been doing it for 3 weeks?”… but people want something more concrete, I guess.

At first people  told me I should be reading, and reading lots! Getting together my bibliography. That’s what I should be doing for the first weeks they said. So my first week, I diligently sat in the library and looked up interesting books and downloaded paper after paper from the library gateway on creative methodologies and healthcarec(& spent a hefty time on twitter). Then the second week rolled around,  really quickly I might just add, & other people started saying that I really should focus on the making art bit because, you know, it is a practice led PhD after all and I don’t want to get to christmas and have nothing to show for it. Too right. So I started making some really terrible pieces of parts of work/thinking process (you know, it always starts off that way, so not too worried at this stage). Then week 3 was met with that I *really* should be focusing pretty much on the REF1. which has to be submitted in literally 6 weeks now. Scary AF.

So I’ve sat and stared at my REF1 form on word for about a week now, feeling the pure weight of re-framing, of patching up the holes of my research proposal, maybe even changing it slightly, of finding out an extensive and integral and good literature list.  Of finding artists to reference and draw from, of figuring out where I sit – art? design? healthcare? sociology? anthropology? (it’s obviously all of those things, but hot damn) —  trying to get my head around my potential methodologies and the pitfalls that they entail, and figuring out how long everything *should* take me to create a plan of sorts, and lets not even talk about my issues of ethics – and my potential plans in place whilst I endure a long ethics procedure — all of this needs to fit into 1000 words. No joke. And I have insane imposter syndrome that it’s not even funny.

My head of studies told me I needed to take a few weeks to just play, to knock down these boundaries I’ve learnt/built up during the past few years. To reflect upon all of the things I’ve experienced, and frame them. To see the tensions that lie within the frameworks of healthcare methodologies and artistic/creative methodologies – how these paradigms work. How they oppress and close discussion or the opposite or even offer more opportunity.  I wrote quite a few reflections, maybe I’ll share some on here in due time.

I applied with a proposal for my first symposium talk in London(combining art and healthcare together – more info soon) and got it, showed folks how to use drawing as a research and reflective tool at the IPE conference at SHU, and I’ve got the radiotherapy annual conference in Jan to present my other design research from earlier this year. All of which I’ve started to pull together over the past 3 weeks too.

I’ve drank a lot of tea, I’ve sat and stared at the walls in my studio. I’ve moved into my city center apartment/flat.

But mostly what all of this has taught me is that when the ground shifts, the next chapter begins. Here’s what I’ve been thinking and learning and trying to tell people when they’re super confused about why I’m using artistic practice-led work to create healthcare change.

Making things can expand one’s understanding of what it means to be human. Finding the vehicles for exploring the edges of your experiences can be really, really scary but it’s a great way of transforming thinking into practice. Change is inevitable, adaptation is optional.

Every transformation that we are witness to changes the world, and in turn, changes us.

‘Making’ is a process. In comes from ‘doing’. Doing something. ‘Making’ can bring you face to face with your own agency. ‘Making’ has some of the qualities of an echo. It can travel in space and time and come back to you in the form of a feedback loop.   It helps to make something that you don’t necessarily understand. And even if you think you understand what you are making, the act of making it will change your understanding of it and you will feel yourself get bigger.

I have been exploring my own tracings, teachings, drawings, wanderings and wonderings, feelings, thinkings, questionings and assumptions ever since to better see what can happen when something opens and something else falls… out. And like all ‘critical making,’ it attempts to create a context to make tangible some of the possibilities that can drive passion and engage spirit by striving to go beyond the things we know and towards our own reckoning.

‘Critical making’ can remind us that even when we act alone—as an artist, as a designer, as a healthcare professional, or as a hermit—in isolation, we are part of a larger community.

Seeing is a reflexive process, and like an echo it can find its way back to you. Of course, it all depends upon listening. Everything depends on listening. Listening is different from hearing. Hearing can tell you which way to go. Listening can tell you who you are.

I’m having to re-learn to be diligent, and teaching myself to be better with my time, and my work. I’m practicing at staying awake and  trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

I said that i was going to take every single opportunity I get as a PhD student. And I’ve attended nearly 75% of everything open to me, talk wise within my free time.

I plan on paying attention to everything. And remembering what Linda Sikora said when I feel crazily over-whelmed with all of the above.

She says that, “It’s more important to keep paying attention and to follow your attention wherever it goes, than it is to think about meaning and content, because meaning and content come from paying attention to the world.”

canada.jpg

 

learning to lean in

Words are  often a poor substitute for imagery.

One of my Doctors: “So Sarah, why do you want to work in healthcare – even though you’re an artist?”

I spoke about my own experiences & the opportunity artistic practice can offer to enhance care and services – the ability to use a different perspective to make a difference.

He turned to me expressed his heartfelt regrets and said: “Art gives you, like flying, something that other people don’t have.”

It was as if he was saying, what you lack in a functional immune system, you make up for in other unique ways.

And with this, a few days ago I found out that I passed my radiotherapy & oncology BSc Hons degree with a 92.6% First-class degree!!!

I have a fully-funded PhD scholarship offer bringing together 2 of my passions together (art & healthcare) that starts in October, and I leave for the U.S.A in 5 days times for a good couple of months. I genuinely can-not-believe it!!

Not too shabby for the working class kid with no science background or previous healthcare working experience.

I am humbled, and most of all feeling extremely privileged to have shared this crazy journey with you all. I wasn’t sure I was going to make it to this day, in all kinds of ways, and for this reason this achievement feels incredibly important and special.

For a long time, I had made who I was by being a work-horse. I could totally juggle 8 things at once. I could totally stay up til 3am in the morning working on hopeful-kick-ass projects/ideas/gigs – and then get up at like 9/10am the next day — no questions about it.  My mind constantly buzzed with all the cool things we could do. I’d sleep with a notebook and jot down cool ideas in the middle of the night. If you needed something doing – I was the person! But Nothing prepares you for the day when you can’t do what you do any more.

I didn’t feel like myself. I felt broken. I loathed who I had become.

There I was, hopeless – barely there. Not feeling alive.

I cried. I felt sorry for myself. I didn’t believe it was happening to me.

I’ve spent the last couple of years searching for the Old (younger) Smizz. I’ve looked for her all over  —But there’s no going back to my old life.

I am broken. There’s no protocols or discharge instructions to guide people back to their lives.

But I am alive.

I do think about that a lot.

 

This degree course allowed me to gain some control, it gave me some much needed (if not too much) structure and helped me to try & hopefully make a difference. After all, what is the point of saving a life if the life isn’t a meaningful one?

And the friends I’ve met whilst doing it – all with their own personal stories – have helped to inspire, and alongside all my other friends, they’ve helped me to carve this new path for myself.

It highlights the fact that I’ve never actually accomplished a single meaningful thing by myself, and this is included.

The past few years has taught me that reading the fine print of your mortality is a great sifter of rubbish.

In the chase for the extraordinary we can sometimes forget to embrace the ordinary moments. It’s about embracing our vulnerabilities and learning to ask for help. We also need to invest in others without expecting returns – because that’s real love.

And it’s about realizing that your time is valuable — what you do with it, how you spend it and with whom.

 

It’s picking yourself up when life knocks you down and finding beauty in your bruises. But this might take years and years to do, it’s not an overnight fix. We are all damaged & broken & traumatized & mistake making in some way or another. But it doesn’t define who we are. So don’t be so hard on yourself. And Don’t be so hard on others.

3 years ago, I literally couldn’t get out of bed. Today marks a HUGE milestone for me. I got out of bed each placement morning (1000’s of hours of free labour) (i wasn’t happy about it lol), I ground myself down, I gritted my teeth and pushed through most of the fatigue & pain, and some how completed 3 years clinical education. Super early mornings, physical lifting, lots of moving, emotional distress, stress, deadline after deadline, many naps where ever I could find them, doritos and a 2 year long headache. And somehow I got here.

Whilst I still live in deep pain, and still haven’t learnt my fatigue limits, and I’ve lost feeling all on my left side, and a headache that often leaves me crippled to the floor. I’m proud of how far I’ve come. Recovery is hard. I don’t think we give enough people credit for that part.

I Never, genuinely – hand on heart –  would have believed any of this would have been possible.

So thank you to YOU ALL.  My mom, my bro, my nan, my amazing friends – old & new, stafff, lecturers, my twitter fam, my internet friends. Anyone and everyone.
Without your advise, support, jokes, cleaning, food, tears, stories, knowledge and just being there and accepting I take 7-10 business days to return a text/email – I’m not so sure this would be the blog update it is today.

I plan on using all of my time allocated.

And I can’t believe I’m here.

13320519_10154041065631508_7429482640041572543_o.jpg

13317015_10154058284426508_957648983160443094_o.jpg12141096_10153360318613375_7064953595367521226_o.jpg12370664_10153651239561508_5429585895926538300_o.jpg13308422_10154058195236508_4836840088406079601_o.jpg

 

I don’t want to waste any more of my time. That’s all: A look back upon my 2015

 

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.

What being an artist, trying to learn how to code & feeling like I’m dying has taught me.

It’s kind of exciting not really fitting into pigeon holes. They say I’m a Smizz of all trades, master of none. I’m currently designing and coding an app in my (limited) spare time, which I hope will help to aid patients in having a better patient-centered-care experience. The app hopes to include all the information for their treatment, and later on become interactive- enabling the patient to get the support they really need (financial, emotional, physical, ect) by using a series of questions over a period of time, and documenting how they’re coping/feeling/side-effects, ect. It’s exciting stuff. But learning coding for this is a steep learning curve.

As an intermediate dabbler in website designing and coding, and now embarking on objective-C and swift codes I am no stranger to being able to take a problem and see the inevitable solutions, but also I’m pretty skilled now in being able to hypotheize the potential for disaster – what problems could I run into using a certain code with another, or ethically, or in language, ect. We use this kind of thinking in Healthcare too. It’s figuring out what our best practice is by eliminating all the problems for optimal experience and outcomes. In art, we use these problems too, to breakdown into manageable truths. As a Marxist, I’ve naturally developed a somewhat cynical ability to breakdown systems really easily into oppressive segregations & loopholes  & weaknesses.

But thinking like this naturally, or often, comes with its consequences. Your every day problems become disastrous in your mind. I catch myself getting caught up in this mind-set – Unanswered phone calls become bad-news,  someone being late becomes a car accident, late arrivals due to delayed trains and buses become missed opportunities. Being poorly and not doing as much as I used to became career stagnation.  The omnipresent of ‘but-what-ifs’ continue to grow.

However, now I try and use this unconscious worst-case-scenario as a way to panic myself into action. Rewards come from risk, and a life without risk is a life that’s probably pretty boring.

When I arrived in the land of the ill – i wasn’t sure i was going to survive. It was the worst I’ve ever felt in my life. I made a list of all the things I’d do if I ever recovered. If I got a second chance. I mean, yeah, i had led a pretty interesting life up to that moment, but I had made sacrifices in the present for a future which I had no idea I’d ever get, as we all do. As a patient, I often felt misunderstood. I was demeaned within the healthcare system 1 or 2 times. I felt ashamed for being poorly. (As well as being shown amazing compassion).  I could see levels of the system that I knew I could instantly change if I was in the system (such as just simplying listening to the patient, making them feel heard). I also ferociously  read everything i could on cancer, & healthcare and compassion. The experience made me want to be the change I so desperately wanted to see as a Patient. I thought, mane, this system needs some more creative/different thinkers! I have this habit of trying to game systems. So when I started to get back onto my feet a little bit, or learning to live with what was happening, I began to realize some of those things on my list. After talking to a lot of people, I realized the potential possibilities so I applied & started my healthcare adventure.

Being told that it looks like you have a malignancy forces you to realize that life can end literally any time. And this quickly changes what you deem worthy of your attention. I was furious at myself for not being as present with friends and family as I should have been. All the nights-out I missed at university, all the times I wasn’t empathetic to my housemate for his anxiety with post-graduation life. I was absolutely Furious! These were things I hadn’t even calculated in my head until I got ill.

The junction between mortality and mundanity is an exquisite source of perspective.  I often sit on the bus, watch a sunset and I think about how these boundaries between are treacherous and illusory.  It’s hard to gain this kind of perspective, and it’s equally hard not to lose it, not to start slipping back into old habits. Partially for that reason, I enrolled onto my radiation oncology course. I love art, and it makes me happy and fulfils my soul.  But I do miss the way people think in art, and the discussions and dialogues when I’m working in healthcare. I miss the playfulness of the every day I had when I was a fulltime artist – but I believe there’s somewhere in between for both areas.

Art makes me the person who doesn’t trust everything I am taught in the healthcare system. Art is the reason why I can understand and empathize with a persons story, with the person and not just the disease that we’re treating. Healthcare makes me appreciate the edges of life, the possibilities, the beauty & tragedy in it. Designing something brings these 2 worlds together for me.

But coding has taught me about action. This is extremely important right now. We are standing in the middle of time, where great injustices go untouched. Architects of the financial melt down continue to swoon with the governments. & yet our laws and governments continue to value capitalism over humanity. Under-funding the NHS, profiting from education, trying to put laws into place to criminalize our movements when we try and mobilise against things that are wrong, cutting funding for those who are in great need of it, where we give up our freedoms, and allow ourselves to be spied on by the NSA, ect all under the guise of protection.

Change doesn’t roll in on inevitability, it comes with continuous struggle.

So, just as I promised my bleeding, puking, bruised former-self, I plan on raging against the bullshit, and make things that can help others, and keep the door open with kindess & listen. I will wander for a while: call this just 1 of many future sabbaticals.  Life isn’t linear. Neither is coding, making, changing.  In the end, I think my job over-all isn’t healthcare student, nor artist – but to remind myself every day that my time is limited. And so is yours.

As Aaron Swarts used to say, “What is the most important thing you could be working on right now? And if you’re not working on that, why aren’t you?”

 

Here’s somethings I’ve been working on:

http://livemappingsmizz.tumblr.com/

http://f-o-r-c-e.org.uk/

http://gravity21.org/

 

Explain A Patients Reaction To….

I look back on my life so far, and I ponder for a moment and wonder how I’ve got so far (yet also so far  to go). I reflect and think, yo, did that really happen? That was AMAZING! Or that was pretty horrific, why didn’t I see the difficulty at the time. Why was I such a dick, or why can’t I be as motivated as I was back then?

Tonight I’m writing this blog instead of doing revision for my last and hardest exam of Jan. I probably should be using my time much more wisely. I’m super tired and I feel like I should be asleep right now. I feel like my brain can’t take anymore information today – but it is indeed a revision past exam question which has made me want to write this post.

The said question in question is, “Explain a patients reaction to a cancer diagnosis.”  – it’s only worth 3 marks.

We’re taught that the patient can go through a myriad of reactions, and neither of them are time sensitive. They could happen instantly during the breaking news, during or months after treatment. We’re told that in the beginning most people are in denial, “There must be some sort of mistake?”  “Pretty sure that this is wrong, it’s not happening to me?!”  Some patients never stop being in denial, most come around. Guilt. Responsibility for others (What about my family/kids/parents what do I tell them?). Fight spirit. Depression. The options are really really endless. Everyone deals with everything in their own way.

This question brought back memories for me. I thought about when I first got told that it looked like I had a “Lymphoid Malignancy”.

Remember this? I bet you do:

screen-shot-2012-09-02-at-21-25-59

I still – to this day – remember that day with crystal clear exactness that I’ve never experienced with any other memory.  I think its surreal-ness is what makes it stay with me.  And I think the above exam question – that the patient will also have the most crystal clear memory too.

Here’s my reaction to the above news. I feel like I want to share it, because I still – to this day – think about it daily. I think about how weird it was. Imagine being told you could have a fatal disease, 10000’s miles away from family & in the presence of your work boss? (My boss is now, as you can imagine,  1 of my closest friends). How disjoined my journey was afterwards. and the amass of emotion and questions that seems to have manifested itself into a whole new career venture. Pretty sure not every patients reaction to a cancer diagnosis is – I WILL BECOME A MEDICAL CANCER ZAPPER RADIOTHERAPIST RESEARCHER PERSON! But here’s part 1 of my crazy story.

——-

After being asked what felt like a bazillion questions  such as, “You’re an artist, do you think you could have accidentally poisoned yourself with chemicals in your art materials?”, a super  thorough  physical  (much more attention to detail than we do in the UK) and some tests & bloodwork, I sat in an examination room with a pretty good looking doctor in a white lab coat (in America, Doctors really wear them – with their names on no less!?). I was wearing a broken gown, backwards. I felt really unprepared. I remember thinking that I wish I had shaved my legs better, not just up to the knee.

I was also sat in the room with the doctors colleague (who was also a qualified haematologist dr) who also happened to be a friend to my boss, and my boss from my American summer camp job.  I usually hate people going to the doctors with me. In fact I do all my doctor-y, hospital stuff alone. I don’t know why. I guess I don’t like people being present when I tell an almost stranger  about the real pain and symptoms I try to hide or down play in real life. I ultimately don’t like feeling vulnerable in front of others. But both – the doctor friend & my boss, asked if they could be present during my consultation and who was I to say no? After-all, it was them who made me go and who were paying for it.
So, here I am. With my boss, of all people, being told that it looks like cancer. I remember how the doctor built up to it. He gave me the positives first. My bloodwork looked pretty good, normal. My boss, sat behind him against the adjacent wall wearing a thick yatch-like-J-Crew meets Old Navy cardigan, but facing me, put 2 thumbs up in the air with an American style movie smile. I smiled back acknowledging. In my head, I was about to curse that I knew this was going to be a complete waste of EVERYONES time & money. That it was indeed a virus or just “all in my head”.

Then the doctor said,”… but it looks like Lymphoma… a cancer that effects mostly young people. It’s really treatable, and easy to fix. It’s just it could be time sensitive.  If it’s aggressive then we could have a problem.” I looked straight at my boss who had no clue how to react, thumbs still sort of mid air between celebratory and disbelief. I remember kind of swinging my legs under the chair like a child, sat on my hands. Feeling kind of shoulder shrugg-y.

The doctor recommended me to go straight home back to the UK and get it sorted (you know, cuz I wasn’t insured for Cancer. Bummer.) All 3 of us left the examination room, went in a lift and left the hospital without speaking a word.

The day was over-caste. It began with heavy rain. I was wearing my super cool raincoat with a picture of Colorado on the inside lining and my multicoloured grey H&M wool jumper.  My boss tried making me eat a breakfast burrito. I wasn’t hungry & I also had stolen 2 bananas from the dinning hall before we had left for Boston. I left the uneaten burrito in the car.

We leave the hospital grounds, get to the road near the parking-lot & make small talk about parking in Boston & payment for parking. My boss’s friend-doctor and my boss  wished each other good bye. I thanked the doctor guy. As soon as he was gone, as I watched the lift doors shut, my first words were – whilst staring at the bottons with floor numbers on in the lift in the car-park: “You know that I’m not going home, right?”
The shock of hearing that I might have something that could end my life – especially if time sensitive – was something my mind couldn’t really grasp. In denial didn’t even come close.  I’m not even sure that a “life”, as a seperate entity really exists. Maybe I’m a kid who lives with their mind racing ahead into tomorrow more than I should, but that night I couldn’t stop thinking about all the plans and dreams that I had that might never be.  I felt as if I had wasted huge amounts of time in my life, and that I had to have a second chance immediately.

I convinced my boss to divert our route via an artshop where I spent exactly $38.38 cents on a bunch of my fav drawing pens and sketchbooks – I also pretended to be a student for 10% off. Later on, we stopped off at a bookshop on our 3 hour drive back to camp. I mean, how could she deny a dying kid their last wishes? I bought a pretty great art magazine, and my boss bought me an iced-chai-tea-latte from Starbucks. We talked about pretty much everything else BUT my potential impending doom. When my boss brought it up, I was pretty blunt that I wasn’t going home.  She would say, “Well, I don’t know about that Sarah Smizz.” I would have no discussion about it. I felt like if I did have cancer, that another 6 weeks wouldn’t make much difference, and  if I didn’t have it, then what a waste of everything. And then that if I did have cancer I was going to endure some hardships  so I wanted to make sure that I had to live my life hard and fast. I thought that this, after all, could be my last summer in the USA. Ever. Last summer ever.

That was part 1.  Other posts reference my crazy disjointed journey of illness and let’s be honest, I will probably write about it again.

Fast-forward to right now. I think we have to live fast, stay lucky. Try to be better. Work harder. Always put family & friends first. Money is circulated. Time is spent. There’s never enough time to learn everything. oH-wEll. Mistakes are made. Lessons learnt. Collaboration is key. Always be ready for an opportunity even if it doesn’t arise. Ask for help when you need it. Sleep is GOD. Illness is a bitch. It will rob you of everything for a moment – whether it’s the flu, gastritis or cancer. Stay true. Smile. Be cliche. Instagram.Help others.

I’m left wondering if my story above would have got me 3 marks in my exam?

See ya 2013, Ahola 2014!

2013 was one crazy year. It was both insanely busy and then had weeks, if not months where it felt all I did was get up around 1pm, try and do some work – still feeling hungover- a heavy fatigue that I just can’t shake (even though I hadn’t touched liquor in months)  and by the time 5:30pm had come around I was running a bath & was already in bed by 7pm. I had literally 4-6 hours out of bed for weeks at a time.
Equally, when I had to get up to go to work or on my better days, I did LOADS of amazing cool things. I drew at the International Health Expo in London for NHS Commissioning Board, I drew loads of other things for them too, I drew at my job in London a few times, I drew INSIGNEO a new cool NHS & University of Sheffield research center. I drew other things for the Uni of Sheffield, I drew TEDxSHF, I drew Doc/Fest, I drew loads of other things too that took me around the UK. When I wasn’t doing that, I was doing a bit of teaching or designing websites for a few art things. And when I wasn’t doing that, I was going to interviews, spitting feathers about whether I had done what it needed to get a place at Uni to study Radiation Oncology.
The winter months turned into spring which turned into summer. My bed felt the same, and lets not forget how cold last year was (although judging the weather today – I’m like daaaayuuumm- IT’S COLD). I went back to America, had another super summer – which was to be my last- but this time with 2 of my fellow comrades and we roadtripped across the USA.  I came back, had more medical shizzle, went and enrolled onto my intense healthcare course. Drew some more stuff for lots of people! I’m now working on a few things for TalkTalk. And went to Paris.
The new year always makes me real nervous because I just don’t know what is in store… Great things can’t last forever, right? But all I can do is hope, and work hard. Keep my eye on the ball and take chances.  Here is to REALLY hoping that my prognosis for 2014 is even better. Thanks for helping make it so, you guys.
Each year I do a blog setting what I want/would LOVE to happen in the year ahead. It seems to kind of work. Who knows whether it would have happened  anyways or by writing it, it becomes a self-fulfilling prophecy or indeed if it was because I took the time to write this  list and it’s magic! (so taking no chances on anything). 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 2014: 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 for an amazing job year;  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. More blog work updates, less scrawling through the Facebook time-line. 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!
  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!
  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.
  11. I’d like to take up running, agaaaaiiiinnnn.
  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 2013 for a dope year, 2014 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!

2013: I started this year, as like last year too, unsure if I would be around to finish it.

I’m sat here, eating a Twizzler that was given to me by my USA friends who I met in London yesterday. How lucky am I with all those values in that sentence? I can travel, I have friends, I have friends who think of me, I’m eating one of my favourite USA Candies!

I started this year, as like last year too, unsure if I would be around to finish it. But here I am, still surprised at the reluctance and strength of the human body and mind,  and at modern medicine. Life naturally changes, it often discriminately changes too, but sometimes in the most beautiful ways.

Here’s some of my 2013 changes, lessons, and awesomeness:

This time last year I was perfecting my personal statement to apply to university to study Radiotherapy & Oncology. I started my new course this year, which 4 months into, I STILL ABSOLUTELY love.  Being super healthy and indifferent before all this stuff happened to me, I had NO idea I was actually interested in medicine – as I had no contact with it, really. And Oncology mostly.  We know from the kind of art I like to make, that in order to understand something I have to be part of it, or try to make the change I want to see from my personal experience (I.E. power struggles).

On my better days, I feel connected to something very big… I like to think my experience happened to me to point me in this direction, ignited a fire of curiosity within me. Hell ,I still have no idea how i even got accepted onto the program with my arts-no-science background – my ambition is to help innovate Radiation Oncology in the future. I’m here now because I needed to understand what’s happening, and also make sure the patient pathway is  always full of the best care and compassion and empathy. Protein make-up of tumors and immunology have really caught my imagination this semester too. To be part of some great changing research in the future would be dope. All of this is extremely important to me. Because, the scary truth is that many of us in the cancer world — both doctors, HCP and patients — are  kind of winging it here, just hoping that the cure  & the disease doesn’t kill us along the way.

My course is a different kind of pace than studying art was, a different way of thinking (as you’d expect, but really!), and still being a freelance Artist makes juggling both jobs hard  – but everything good takes time and it feels worth it.  And i’m so damn lucky to be here, studying this, being part of it and still maintaining my art career!

Another thing is that for all the pain and uncertainty I’ve experienced, I’ve received 10 times that in the love and generosity and devotion from friends, family and even random strangers! I have been constantly over-whelmed by the goodness of people within my life. That’s why this year, I feel like I’ve waned towards childhood fantasies – christmas makes me more excited, i love dinosaurs more & onsies, even more than I did when I was a kid! It’s a great “grey-area “to be in because I’m discovering the wonder of mystery again, the possibility of things unseen — and mostly – the joy of savoring the moment before it’s gone.

When you think you’re dying  (and surprisingly don’t ) eating Twizzler’s at 12:18am doesn’t faze you. This year  I’ve ticked more stuff of the good ol’ bucketlist. But strangely most things that got ticked off – was only possible because others made it possible!

One of my favourite artists, role-models – and over-all-inspirational-good-guy William Powhida made me my own piece of art! (6 months on, I’m still awe-struck & completely made up with this) Bucketlist TICK! , My mom bought me a gorgeous cookbook this christmas so I can tick off [Learn to cook], A friend who is an amazing woodsmith showed me how to carve wood- basically, I’ve sort of worked for a start-up this year (but I could expand on this), soon I’ll be able to bike a part of the tour-De-France as they’re opening up a route via Sheffield! Friends and I megabus-ed to Paris to see it at Christmas,  I swung on a trapeze, splashed in the ocean and lakes, saw breath-taking sunsets and sunrises around the world, rode horseback across a desert, did another USA roadtrip with my friends and all I seemed to eat was pretzel bites and jalapeño cheese & chips for lunch, because, what the hell. I went to the movies a billion-times. I threw coins into fountains and made wishes. Made lots of new friends, learnt a bit of Italian (That I’ve kind of forgotten), learnt that my French is absolutely terrible, and that I’m definitely an “arty type” rather than a “sciencey type”. And I opened my skeptical heart to love again.

I’ve learnt that I’m crappy at a lot of stuff (like saying medical words, gawd it’s hard, and getting up early), but my friends are phenomenal at being there for me and helping me go about the business of living. We all need miracles. There’s nothing like reality to make you trust in the impossible. These miracles are also your mom and your  brother and your grandmother and all your funny, spirited, kind friends. These miracles are every tender moment of your life, which disappears with every tick of the clock, and, I have no doubt, every fantastic adventure you have yet to come. The miracles are part of all of us, at every age, still willing to give, still willing to hope…

And so here’s my hope. I wish and hope that all my friends and family are surrounded by the people and things that they love. That 2014 is full of beautiful, amazing, simple and complex adventures and ideas and happiness and health for you. I hope that these experiences keep helping me to be a better person, a better friend,  a better health-care-professional, a better artist, just generally better.

Keep being awesome yo. Friends, thanks for the support. Here’s to more learning, more drawing, more motivation and healthy happy thoughts for 2014! 🙂