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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Expect anything worthwhile to take a lot of time

Yesterday I went to the Drawing Matters Symposium in York. It was a day of inspiring talks and presentations, all grappling with drawing and its pros and cons. I even met a couple of healthcare professionals (a nurse & a physio) using drawing in their PHDs – as a critical tool too, not just a “wellbeing” tool*

There was a particularly interesting talk from an educator about drawings role in primary education, and how a lack of teachers understanding of drawing and time to do it/teach it (all documented in Ofsted reviews every 3 years) is affecting how people later on in life construct and evaluate knowledge. This then, of course, systemically affects every area we work in – from government policies, to leadership, to how things are designed.

They also showed how drawing also helps bilingual kids learn english. So drawing can help bridge across two different languages, two different paradigms. Enhance collaboration and share practices!

But the knowledge thing got me thinking about the healthcare system.

I’ve been trying to make things to help showcase people’s work within radiotherapy & beyond and I’ve been *secretly* developing  a framework/workshops to teach healthcare students (maybe even staff) to be and think creatively.
The workshops are designed to be facilitate hands-on activities and discussion designed to build 4 essential creative muscles:

  1. Seeing connections between disparate concepts
  2. Developing an openness to new ideas
  3. Building resilience through experimentation
  4. Authentic reflection

These 4 things goes beyond what most people think of when we say creativity (no, it’s not just drawing, and it’s not just being “different”). In business, the creative mindset is highly sought-after because in this time of incredible uncertainty and rapid change, we need agile thinkers who can recognize patterns and interesting adjacencies, who naturally come up with person centred solutions not rigid-1-fits all master plans, and who are comfortable conducting rapid experiments to learn quickly. But it’s not as much appreciated  in healthcare, despite needing the same kind of things as described above.

But alas,  both healthcare and creativity is complicated.

For years, researchers have studied the “bias against creativity” in the workplace. University of Pennsylvania researchers coined this phrase for the tendency of creative ideas – and the people who espouse them – to be systematically diminished, disparaged, and discredited. This is interesting stuff. I’ve personally experienced it at school, across many places I’ve worked, including within the healthcare system too.

In recent work from Stanford Institute for Economic Policy Research, economists took a novel approach to innovation research by matching tax data to patent grants and applications for almost two decades in the US. They found that children of parents in the top 1% of the income distribution were “ten times more likely to become inventors than those in the bottom 50%.” This is significant, but perhaps not that surprising. The fact that you’re more likely to be successful if your parents have money isn’t the classical narrative of the American dream, but we know it’s true. This data is reproduced across the UK too.

The real surprise in the research was that invention was not correlated with creative ability. Instead, the degree of successful invention was more closely tied to environmental factors shaped by race, class and gender. The conditions children were exposed to at a young age in their neighborhoods and schools were the dominant factor in predicting future success in innovation. In other words, if children didn’t see members of their family or community engaging in non-traditional, innovative pursuits, the financial barriers related to access to opportunity were virtually impossible to beat. It didn’t matter how naturally talented someone was if they had nothing to model.

This makes me think back to the healthcare system and the transformational leadership role and HCP ability to enact change – whatever band/level/experience they have.

“Creativity” may not be the magic bullet – but creative people are. We know that intentionally or not, we are teaching the next generation how to be good foot soldiers, but not independent thinkers. More confoundingly, we know that the things we design (whether policies, products, systems, services, pathways, leaflets, etc) we will use in the future to communicate and convene, work and drive and govern will be built by a cosseted minority who have great access, but may not have the greatest ideas. And even if they do, they will not represent the diversity that they could have.

The experience of engaging in the creative process is profoundly transformative for people, especially young people. Moreover, it’s something where each of us can have outsized impact, just by simply being present.

So how do we do this?

First step: embed it back into education and learning.

Organization design – the attempt to structure systems to produce the outcomes we want – has been an established field for decades and healthcare is an amazing example of this. But here’s the thing – if you step back a bit, putting the two words “organization” and “design” next to each other is actually quite contradictory — the historical rigidity of a typical organization, next to the inherent complexity of the humans in that system, combined with the fluidity of design.

The healthcare paradigm is a tricky thing to navigate. It’s so ensteeped and rigid in empirical  data and conservative methods that it’s hard to move things. Each coupling reveals a tension between chaos and structure; linearity and the non-linear; closed and open systems.  Teaching people to be flexible and open – and fun – will show them their potential and feel more confident is being more critical and open about their world and collaboration around them.

Step 2: We need to Challenge the world around us.

At the 99U Conference, Liz Jackson, founder of the Inclusive Fashion + Design Collective said: “You never see a person on a cycling sign. You see one on a wheelchair sign. You’re saying you can’t use that object unless you are that person,” as she strode the stage with the aid of a cane. “We are disabled not by our bodies but by the world around us. It is a social construct. Disability is nothing more than a brand, the world’s ugliest brand.”

The stuff we ignore, or don’t try and change, creates our world – makes it harder for us to do our jobs, our lives and our patients lives. So by giving people the tools to critically think, to be open, to try stuff, we can literally make a difference. Equally, to repress what makes us unique is to artificially constrain all the potential we have to offer. 

Step 3: Learning different ways of thinking to see from different perspectives

This is where a creative education works. Sometimes we all need to step back—be an artist or a healthcare manager— to find the most appropriate methods or  solutions for the problems. You don’t have to do everything yourself, and it doesn’t always have to be a questionnaire or RCT.   Equally, we need to  increase awareness of our biases (which we have MANY in healthcare) and begin to advocate for change, Norregaard recommends creating a space with your team where it’s okay to talk through our biases.

Step 4: Believe in the learning loop.

We teach reflection well in healthcare, but I’d argue not in a way that’s super conducive to working life and transformation. We know that hospital Trusts that are transparent and have an open culture to mistakes, make less big mistakes overall, and have higher quality care outcomes. This isn’t by mistake. Reflecting upon what you do, enables you to work out where things can be better. But the trick is about making reflection natural, critical, authentic – actually empowering and enjoyable and  not like a chore, it’s tick box excerise for just your license. Creative thinking does this.

 

However, even with all of this – we know culture doesn’t change over night and there will always be people high-up that can not see the benefit in such things. Expect anything worthwhile to take a lot of time, but in the meantime – the artist in me has taught me that if you don’t or can’t get a seat at the table – just bring a folding chair.

Having ideals is like having a compass that always points to your heart instead of your brain. If anybody wants to keep creating they have to be about change. Likewise, if anybody wants to be about change, they need to create.

 

 

(*side note: I believe the arts are incredibly important in theraputics however that’s a whole different debate). 

A long view of time can replenish our sense of ourselves and the world.

A long view of time can replenish our sense of ourselves and the world.

I’ve been thinking about it for weeks. Every so often when campers know I’ve been pretty poorly over the past few years, they ask me how everything is. I reply with that it’s the most “normal” I’ve felt in 3-4 years.
But it got me thinking: on Returning to Normalcy … What Does that Even Mean?
The last time i worked at Sandy Island, properly, My life was in a state of mental whiplash and I barely even realized it. In barely a few years I’ve gone from being in a death spiral to staying up super late drinking wine with friends, climbing icelandic waterfalls, running for late buses. I went from planning out my funeral to doing radiation oncology and beginning to start a PhD. I’ve gone from thinking I’d never step foot at Sandy Island again, to working my longest summer contract here.
But it’s taken me to get to this summer to look back to see just how far I have come, compared to even just last year. Even in January this year. Even April.
Before going further I have to share how profoundly grateful I am to everyone. I can’t even write these words without gushing tears.
So the thought of a return to normalcy is like a warm embrace: to feel like the last few years were a mere aberration that has been rectified. I can’t explain the joy I got when my brain could feel bored and my body wanted to live again. I have about 4–6 hours a day that feel like they did before. The thought of getting to blend my social passions with community and art and social change immediately sets me to problem solving and creating again. Or the thought of unlocking a new meaningful lifestyle that I can plan for has me losing sleep piecing it together while I should be sleeping. I tweeted the other day that I’m already overwhelmed by the projects I’d like to work on now. It made me so happy to tweet it, to feel like I could be back to normal.
But how can I expect life to be normal? I’m still on a small doses of medications to help with everything from pain, to swelling, to hormone balances, to immune function stuff. As much as a return to normalcy seems the obvious goal, I’m definitely not normal now – so much pain & fatigue, still, and it just hit me I have no idea what was so great about normalcy before.
Being in the USA, seeing friends, being at Sandy Island with friends (staff and campers) has been incredible because these friends are all hard chargers, both professionally and personally. They’re exciting to be around because they are making the most of all parts of their lives and doing so thoughtfully. One of them asked what the projects were I was referencing in my above tweet, and in full imposter syndrome mode I stumbled at trying to explain what I was going to professionally do.
I constantly share that my biggest life insight is that while you have the time, optimize on the meaning you find in life.

In some rush towards normalcy and wanting to make the most of said normalcy, I find myself leaping to my old life – a life where I didn’t see my family, I made excuses not to see friends so I could just work or do less meaningful things. I told myself that I was going to do loads of things at Sandy this year, and I didn’t – as much as I wanted to. I should have spent more nights with Julz and Katy. I should have visited Anya more. I should have drank with Chris more. So many shoulda-woulda-coulda’s. Instead, I spent a lot of time trying to catch up with online stuff (such slow, at times non-existent, wifi). I spent quite a bit of time in bed – fatigue. I spent time that I have no idea where I spent the time?!
So there, Sandy Island: I‘ve been racing to get back to normalcy, racing to shed my death shroud, and I’m on the verge of disrespecting what I’ve been living through just to feel “normal.”
What is so great about normal?. Many of the years of trying to work as a freelance artist were financially crippling. The past years working freelance and undertaking clinical placement whilst feeling ill were exhausting.
Am I sick or am I better? Is a return to normalcy my goal or my loss? How can I maintain this profound sense of gratefulness for life, if I queue up in the same old lines?
Is my death shroud an exoskeleton I can to pull myself out of, instead of dragging it along?
This summer has given me the time to reflect upon this, and think out what’s next, and Sandy Island people are helping me figure this new chapter out, and reminding me just how lucky I am. I’ve never felt so loved in my life; and I am so grateful to be.
Special friends have showed me just how normal love looks. It’s not always a mad-dash to the airport, it can just be a heartfelt hug for you feeling better. It can be an incredible gift like a personalised book full of love and wisdom to help guide you when you’re not super sure what’s next. It could be a cool turtle dove as a reference to your most favourite movie ever (friends for ever — home alone 2!).
The gratitude i feel for all of this is completely over-whelming.
A pilgrim is said to carry all their back-path with them as they move forward. It is the back-path that brought us to where we are now. Without it, we cannot enter the path that lays in front of us.

So i’ve been asking myself: Can I make a future of the unknown and still be myself? Can I ever return to normal? And why do I want to?
Thanks for reading this far if you have.

Much love always, your friend – smizz x

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Lasso The Moon

This week I was invited to #PatientsAsPartners16 event – It was organized in big part by Roz Davies – as part of Recovery Enterprises in Sheffield, NHS Confederation and Y & H Academic Health Science Network  & a bunch of other organizations and people.

Drawing events and workshops and conferences aren’t an unusual thing for me. It’s a huge part of my bread-and-butter. I  get to draw all kinda of things! From health & social-care, to technology, the government, to film, to education, to science, to social-media, to inspirational stories. You name it. I’ve had the opportunity to have a good draw of it. And in the 5 years of doing it, I’ve learnt a lot about subjects I never would have ever really thought about before. I’d love to, in the future, write a small book – based on all the things I’ve learnt as this “graphic facilitator”.

But  the ‘Patients as Partners’ event and working with Roz again reminded me of where this journey started for me. Back in 2012, I drew a  bunch of events for Roz and her colleagues at NHS England. It was all about trying to make the NHS more “people-powered”. We worked with patients and other service users like carers, ensuring they were part of the new design of PCTs turning into CCGs in march 2013. That the patient expertise and experience was central and a big part of helping local CCGs commission services that reflect the needs of their local community and patients.  That hopefully patients would be partners in this process, and not just an “involve a service user tick box” process.

And these “lay-members” and other patients relayed their experiences of having to navigate this fragmented system that just didn’t understand their needs – even though these needs represent the same needs of 1000’s more living with the same specific chronic medical conditions. And this misunderstanding, or even rejection of their needs, even though not done on  purpose or without care – was the start of a scaring and traumatic time for these people. But they didn’t give up.  They used their resilience to push forward new ideas, and new ways of working. Or setting things up to help others in similar positions. They learnt everything they could, they tried to redesign the system.

I had just started my medical journey at around the same time. And in the beginning it was fine, but the longer I was in this limbo position – the more I hated being a patient. I still hate it, probably even more. I feel judged, in not a good way. I feel ashamed – of myself for not being able to fix what’s happening, for not being stronger. I’m spoken to like I’m stupid. Healthcare professionals (worth noting not all of them, of course) say loaded sentences to me – try and blame things on me because I am “young and female” – seriously -. I feel bad for not fitting into the [healthcare] system (story of my life). I’m an issue, not an assest. I’m “complex in the way I present”. It’s so loaded.  I’m complex because I’m a human being and we are complex creatures, no?   Healthcare professionals can’t wait to discharge me – with no solutions or suggestions or even help. And I just think, my poor poor GP.

(I want to say that as noted in many posts that I have been shown incredible care & kindness by most HCPs and I think the NHS is phenomenal and has saved me in many ways – but that doesn’t mean there’s not issues or unkind words in the process)

And as someone who intrinsically makes connections across fields, knowledge, see how things are linked, no matter how big or small those connection are, who loves working with people, and coming up with creative ways – or trying new things/ways of seeing if something works. I find this whole process really rigid and foreign & I can’t understand why it’s like that? Because surely, people aren’t like this?!

And as a result of this old school way, I’m left completely alone. In constant pain – causing unnecessary health problems for future smizz as I try and figure out whether different things/medications/diets/ect will work. I’d be lying if this experience hasn’t made me Question the value and the worth of my own life. I’m often left feeling like I’m not even worth the time of the system because I’m complex and they’re not understanding how it has all affected me. Having to “live with it” without any direction, advice – or even hope – in what to do to help or move forward. It’s really, really hard.

Luckily, the struggle is my life. And I’m motivated by experience to try and make things better. And whilst I’d rather not have this pain and experiences, it makes me more empathetic to others struggles.

So, drawing all these events – where we’re trying to change culture, to redesign things so that actually we have care – not a just a stop and fix and go system – really resonated with me. And I thought if these people (patients) are using their experiences to make and design new things to compliment the system — then maybe I can use my own experience and my intuitive knowledge/creativity to be a better healthcare professional – and change the system that way. One -on One. Person by person. Making sure people feel listened to. Not judge anyone. And understand that sometimes it’s the really small things that make the biggest differences to someone, so not to just make assumptions. 3 years on, 7 weeks before I qualify, I try and make sure that no one leaves my care without knowing the support, plans and options for them going forward, and i always try and make sure they know that they can come back – – with questions, concerns, ideas. ect.

So that’s why I retrained. Due to hearing all these stories and seeing the virtue of human resilience. Not to back down, to help healthcare to become more than just instruction-based (practice, protocols) but also idea-based (critical thinking, envision ideas of others).

And the artist in me is integral to the process of helping to do this.  Patients as Partners discussed how we need to be more creative. We need to help people understand. We need to re-design new pathways, processes, community links, use peoples knowledge from lived experiences.  Nightingale showed that soldiers weren’t dying mainly on the battlefield, but instead they were dying in the hospitals due to the poor sanitary conditions there. Nightingale used this now famous diagram to influence hygiene practices in military hospitals, which resulted in lower mortality rates. The kind of design that Nightingale used can be thought of as, “Design to improve understandability.”  

For the past few years there’s been debate about healthcare reform. But for all the talk of funding and not being able to afford to do things, there’s a lot less talk about the stories and lives of the people who are the center:  patients and HCP.  And I believe art/design/creativity is going to help us bring the people, their knowledge, their experiences and co-produce things that matter and bring the people who matter to the center of it all (Although NHS does need WAY more funding, there’s no denying this ).

It’s hard to believe that 2012, doing the People Powered NHS and doing the Patient as Partners event in 2016 – of how much it has come together, of how much it has inspired my journey and thought process. And if that’s not proof that peoples stories can help change things and help us learn, help us to empathize, and grow – then I don’t know what is.

There remains a misconception that health is determined by health care. Through hoping to change things through art/design/creativity we can make cities healthier, we can involve the people who it affects, and learn from what helps/makes them worse, we can make people feel more empowered & valued, and in turn we can make people’s jobs feel more satisfied. And we will make the healthcare system more sustainable and caring in the process. And make society healthier and better in the long run.

It sounds all a bit grandiose but actually, after years of listening to people not giving up and showing how they’ve helped to change things locally and beyond through their lived experiences. It’s hard to ignore and not feel inspired. Hold onto ideas, esp when they’re considered risky. We can totally lasso the moon. I’m almost sure of it.

 

This is a great project that showcases the above: http://www.recoveryenterprises.co.uk/about/

Patients as Partners project will be written up into a report with recommendations.

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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

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/

 

Constantly Lucky: 26 years

It’s my birthday in about 48 hours. I used to hate getting older because, well, I always thought i’d have my life way more ‘together’ by now. Like, I thought that maybe I would have met someone special. Maybe I’d have what my mom calls a “proper job” (by that, she means oppressed, clock your card-in, have to leave the house to do it, ect – the working class way). Maybe i’d have a proper house, I don’t think i’d ever buy (still don’t) but renting – like realll nice. But life interrupts, and actually those thoughts were never my real desires anyway. They were implanted into my head by what is deemed as acceptable by a capitalist society.

But now I just feel constantly lucky. Lucky that I’m making it to 27 & my multiple of jobs means that I’m always working and meeting with inspirational people. I kind of hate the wrinkles near my eyes (crows feet?) but now I sort of love them. They’re a welcomed reminder than i’m alive, I am living, and living with fun – with a smile & laughter.

I know that age is arbitrary. I’ve read that your 30s are when things start to work. Your 20s are supposed to be outgrowing our 21st century prolonged puberty.  But it’s all relative, really. Hitting those ‘milestones’ are all just part something. Part luck, part shit bad-luck, part working hard, part partying hard, part kindness, part optimism, part time.

When I fell sick, I quickly realized that I had quite a lot of my priorities mixed up. My artist-ego was getting inflated, and you know, i was starting to get recognised across continents, getting a few good-profile residencies, getting paid to do what I do. I spent months and months away from home, never calling, never seeing my home-friends or family. I wasn’t mean, or nasty, or unkind – but I wasn’t very thoughtful of others. I distinctively remember my 20 year old self not understanding why a depressed friend couldn’t join us because she felt tired. Now I understand why others can not understand fatigue in me. If you’ve never experienced chronic fatigue & pain, you won’t really “get-it”, unless you’re truly empathetic/compassionate. Which I certainly wasn’t 5 years ago. That’s not really how I wanted to live my life, being self-obsessed, that wasn’t the person I wanted to be.

Then when I fell sick, in the beginning it was nothing. Then time went on & it got worse. And worse. Until it made me feel helpless. I cried. I felt sorry for myself. I didn’t know what to do. I didn’t believe it.

Life’s big decisions which were mine to make felt no more. My whole-life was tipped upside down. I was no-longer the worker-beaver I was- the persona I had so publicly built for myself crumbled – also publicly.  Still The Smizz of All Trades, just slow, really slow. No reply from emails for days… weeks. I just wanted to sleep. I had pain so deep. Nightsweats that made me feel like I had wet the bed, blood from anywhere. Everything we take for granted everyday, like holding a conversation, running up the stairs, having a shower took insane effort. I’ve lost days, weeks, even months of my life.

Despite my neglect of my friends & family whilst I  pursued my need for art-fame, when I fell ill – they caught me mid-fall & are still here, holding me up. Roadtrips where I was throwing up, or too weak to do anything – they stayed with me. Money I needed to cover my USA medical bills – they banded together and paid it for me. Christmas dinners, Thanksgivings – they do it because they know it makes me really happy.  Great drawing opportunities. Friends across the world donated time, money, connections, rides. Strangers sent mail. On the days I feel insanely shit, they mail and post super nice things on Facebook and Twitter. They keep me going. We always make a laugh about it. I owe them so much.

One thing I think about and often talk about when with friends is life and death. When I first got told that it looked like I had a lymphoid malignancy – all I did on my indenial roadtrip across the USA was research the odds, every McDonalds, Motel, Starbucks free-wifi connection – I’d update my status about some amazing thing we were doing & bookmark a page of research on lymphomas. That research and statistics still sits with me. I think about it with my patients. I feel a heavy weight that’s unexplainable in my chest when someone is dealt a devastating hand of event(s), when I’m writing my assignments, when I read peoples blogs. I don’t think about them every day anymore, which makes me feel like maybe time is a healer after-all.

Whilst feeling not the best, this year- my 26th year – I got to spend the year learning new things, all about the human-body, I see life on the edges every day. I got to meet many inspirational people, I got to do a few weeks in NYC, reconnecting with old friends, and returning to work at Doc/Fest. I saw my mom get married,  saw the sun set above the clouds and the clearest night sky in the world. I visited Denmark for the first time, and spent time working on some really cool projects with really cool people. Now I’m planning a trip to Thailand, Japan and Bali (Not all together).

Through these experiences, I realized how debilitating it all can be, and how rarely we take the time to understand pain in others. That was my main motivation to going to study Radiotherapy & Oncology. But this lesson is still being learnt. The experience is humbling and, more than anything, made me much more aware of – and empathetic to – the hurt that we ignore.

This, in particular, is my motivation going into my 27th year. My resolution is to take more time recognizing the pain in others and offering solace whenever possible. I aim to keep the dialogue open with all of you, whether online or in-person.

I am not sure about all that will come next.  I’m hoping my 27th year will be one of closure from this illness. But what I do know is that I’ve stopped wasting time (most of the time). I can’t help but feel the weight of its value each day. That awareness itself feels like a gift. I vowed that if I ever got through this that I would eat better, play harder, work smarter and love more. Never again would the significance of a moment pass me by.

It’s all just bumps along the road. Make sure you’re living life the way that is important to you. Don’t wait to be asked for help; you’re already being beckoned.

On the 9th, my actual birthday, I will be taking a flight to Lisbon, Portugal. I’ll watch the sunset, and toast to time & feeling really alive. Constantly lucky, y’all.

A World of Difference

Everything begins somewhere.

 

Very light muscle weakness, a constant-never-ending headache that refuses to disappear,  left facial numbness, drenching nightsweats, bone pain, constant appearances of shingles, heavy, regular nose-bleeds, a fatigue which drags you down & always wins. I tried to accept these changes as subjects of fascination — idiosyncrasies particular to my body. But nothing can prepare you for loosing a little part of yourself, for no justifiable reason.

 

 

In my early -to- mid-20’s, I thought I had things figured out. I thought I was invincible, in a normal every day way. I could take another codeine. I could push through the fatigue, the bone pain. But after awhile it gets actually really hard.

 

It’s very nearly christmas, and all I really want is to feel better again. I know that santa can’t bring me this, but I have learnt that everyday in itself is a gift – however cliched that sounds.

 

This hasn’t been an easy lesson to learn. And when I reflect over the year or two, or three, my whole life has changed in ways I would have never been able to conceive of – say, 4 years ago. If you had asked me 4 years ago if I was going to be working in Healthcare today, I would have been like – what are you talking about?!

 

But it was my experiences (both illness & drawing freelance for the NHS), and ultimately having 2 in particular doctors whose care has been inspirational, amongst many, many other amazing healthcare professionals, that pushed me into chasing my new healthcare venture.

 

I have been shown kindness in ways I never knew existed. We all have those stories of where a teacher has changed your life by believing in you, and taking extra time (I have like 5 of those stories) – if you fall ill, and are lucky enough – you have this story with a doctor, or two.

 

 

Like, the time I turned up at my GP (Dr Pieri) twice in one week, begging him to do something about this horrendous one-sided headache that was making me want to cut my face/head off. Twice. I’ve never-ever done this before but I was getting desperate – (it’s no ordinary headache) – and I needed to get back to just mild-medium pain to function relatively normally. I felt so ashamed of myself and guilty for going twice in one week, what a waste of his time? Who did I stop from seeing him? What will he think of me? I’m the reason why primary practice is struggling.

 

But he offered no judgement upon me. I got him to check my ears, maybe it’s an ear infection I mused? We both knew it wasn’t. But he checked for me because he knew that even though it wouldn’t help me directly,  it would ease just a little bit of my suffering. After checking my ears and saying “nope” out aloud, he put his hand on my shoulder for a moment. It was a hand of compassion. He gave me something for migraines and told me to call him with whether it worked. It didn’t, so I never called him. But I appreciated it in so many different ways.

 

A few weeks ago, I was seeing my endocrine consultant. I told him the usual, symptoms that he had no interest in – that couldn’t be explained by his field. He asked me if I had got back in touch with my other doctor, as he had wrote to me in August. I hadn’t actually received the letter – so I hadn’t replied to accept his help. My heart jumped, i sat up straight and at the end of my chair trying to peer at the upside down letter in my file. I was impressed that I hadn’t been forgotten about. The endocrine doc said, “Dr. Kersh has spent a lot of time thinking about all of this & trying to figure something out for you. He’s actually probably one of the only doctors who is actually interested.” This I already knew, but even this doctor was impressed with the extra time/help I was getting.

 

I’m a curve ball. I needed someone to game the system for me. I felt like I just needed someone to try. Someone who could understand just how delibertating this whole thing is, how I no longer feel like myself, how every day I feel like a hungover – windows computer full of malware and viruses. Dr Kersh made/makes me feel like I’m heard and understood, and what a gift to have – to make people feel less alone.

 

These 2 stories are just 2 tiny examples of the amount of care, kindness, generosity, compassion and time I’ve been given that I am forever grateful for. The extra time they’ve given me which no doubt made their clinics late, breaks probably missed, all the extra paperwork they’ve had to write, all the referrals they’ve had to justify. Words can’t match my appreciation of these people’s hardwork – the care they give to almost strangers – and I don’t want it go unnoticed.

 

Their actions inspired me to get into healthcare. As an artist, all I ever wanted to do was make a positive difference, and help rectify social injustices. I soon realized that actually healthcare is a place where this all comes together.

 

Anton Boisen (1960) coined an approach to care that is person-centred. From Boisen’s perspective, the patient is seen as a ‘living human document’, where practitioners learn about  dealing with illness by listening to, and studying, the responses of their patients. It’s person-centred in that it identifies the sacredness of the lived human experience and the wisdom found in ‘authentic experiences’ as patients respond and try to come to terms with the vulnerability, anxiety or other existential concerns that may arise in connection with their illness (Devenny, 2013). This completely resonated with me and my care.

 

 

It’s weird navigating the system as both patient and healthcare professional in-training. But I feel like I’m in the best place – I can now empathize with suffering which I didn’t before. I just knew it from a system, logical perspective – but now I know it, acutely.   I’m left wondering what is the relationship between empathy and understanding?

 

In the end, I don’t know if the old Smizz will ever return;  I feel profoundly, unmistakably different and broken in a way that’s hard to describe. But when I think about all the help I’ve been given by the super smart, funny, and personable compassionate doctors ( Dr Rod Kersh & Dr marco Pieri) it still takes my breath away when I think about it. I’m not just lucky that I have been given this compassionate care, but I’m lucky that I have some pretty amazing role-models for adventures in my future healthcare career. They’ve shown me that empathy is first an act of imagination, and the smallest of things can make the biggest difference.

 

Since it’s christmas, I don’t mind baring my gratitude for all to see. Thank you to all the amazing people working within the NHS. I will fight to make sure that we all continue to have access to life-changing, compassionate care for free.

 

I know that if I can take any of those guys qualities as doctors, I would become a better person – both professionally and personally.

 

With indebted gratitude and thanks, every day, all day.

Thank you for making a world of difference.

 

 

 

 

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

It’s  nearly been a whole year since the last Thanksgiving, already. I know, Thanksgiving as a Brit living England is technically not my holiday. However, I wish we had something similar in the UK. Like, I dunno, a Kindness-Day – a national holiday where everyone gets the day off & it’s a reason to take the time to really be grateful & help others out – without it having to be related to some underlying pilgrim genocide. But you know, a time to take in & be present for all the small things. Because they probably matter the most. And you guys have given me the bestest small moments this past year.
I started to pen this post in my head, slow walking home through a freezing fog through the quiet neon light of Sheffield city streets. I do like evening walks like that, just listening to christmas-jazz music. It makes me feel like I’m in a Hollywood movie.  But it’s also made me realize something about Sheffield that I love. I love how Sheffield’s meteorology is an excercise in whims and micro climates. I can see how Sheffield has become a city for rebels, artists, hackers, nerds, runners and hikers.  It often feels like we are not on the same schedule as everyone else. Time passes in a non-narrative mish-mosh of second winters, monsoons and fourth indian summers, calendar dates be damned. Ney, all this can happen in just one day! Those small things.
2013-2014 was very kind to me, work wise. And you were all very kind to me too. I got to draw some amazing things,  people and talks. Stories.
My medical ‘journey’ started making me think more about how narrative helps us all be more compassionate & empowered (if you’re telling the story)… How empathy is first an act of imagination. An illness is not merely a set of signs & symptoms – it is the story in which it is told that gives us the necessary clues of what needs to be done. What kind of support this person is looking for, how it is affecting their quality of life & ultimately what tests/treatments need to be done/undertaken. The thing is, it’s often the smaller things in a healthcare pathway which makes the most personal difference.
I tweeted the other day it was the 11th Anniversary from when my mom, bro & i were made homeless for about 6 months – properly (another post for another time). This is something I think of often when I check my privileges.  How I can never be certain of anything. We are made from our experiences – our failures & successes, our loves & dislikes, what we have witnessed; gentle creatures that get hardened by tragedy. I walk through streets, sit on the bus, in hospital waiting rooms and cafes and think about these people who surround me, I wonder what their stories are. What would be YOUR story?

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

But all i’ve learnt from this is that we are never-ever-satisfied. Life coaches think they’ve figured out the secret – to delete all your apps on your phone. Bullshit. Just turn it off!  #firstworldproblems. We await bigger phone screens, & watches that do the same as our phones  and complain about things that are arbitatory. I too am guilty of this. This is like a product of my generation.  But it’s just more proof of not us not enjoying our smaller things.

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

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

I am learning to be wild again. This week, I – arguably stupidly – decided to not do ANY work after class. I slept (because of the headache) I went on a date! I went to the movies with friends, I had 2 christmas parties, I stayed up and watched the Apprentice, I went reduced food shopping with rich, I finally managed to grab lunch with a friend I haven’t seen properly in ages. And the housemates and I sat down & had dinner together. I needed this. In so many different ways. I truly believe one of the keys to happiness is to build meaningful ways to make a living whilst working on something you wholeheartedly give a shit about — with good human beings who you give a really big shit about.

In each of our lives, things have changed, for better and for worse. Change and struggle is part of our every day. Becoming a new parent, as many of you are this year! is a struggle. Starting a new course, job, moving house, starting a new relationship is all full of struggle. But it makes us better, in some small shape or form.
My crazy 8 month headache (nicknamed Trevor today!) reminds me that whilst we might understand the surface of things, deep down there is unprecedented amounts of uncertainty that we have no idea of. All I know is that this Thanksgiving I am happy and thankful for the smaller things. The ability to hold a conversation, the ability to write a blog post, to live with several groups of amazing and kind friends in 3 different cities at different times of the year. I get to travel. I get to try and make a difference. I get to draw for my job. I get to hear your story. I get to call you my friends.
I believe that whilst our trauma’s may linger, kindness & friendship is the thing that helps us endure.
So this Thanksgiving, I ask you: What endures, what lingers, and what gets washed away?

Everything That Can Happen, Does Happen

I just bought a book I found in a bargin box for £2 on quantum physics. It’s by Brian Cox, it came out a few years ago when I was working one of my many part-part-time jobs in a bookstore. The book has always intrigued me from the shelf I used to stare at from the till, mostly because I love the font on the book cover (yes, i constantly judge books by their covers – USA bookcovers tend to be pretty bad) but also I really liked the title. “Everything That Can Happen, Does Happen”.

– Let’s all just think about this sentence for a moment. -“Everything That Can Happen, Does Happen”. !!!

Hot chocolates become cold, buildings crumble, and stars slowly die; that’s like a physical visual interpretation of time. The astronomer-philosopher Sir Arthur Eddington in 1927 cited the gradual dispersal of energy as evidence of an irreversible “arrow of time.”  In classic physics, this would be a mind-fuck because in theory you could put all the particles back together and reverse that effect. In very very basic lame-men terms.  (i’m blazing over some important parts, so this isn’t going to be your accurate quantum mechanics class)

Instead, what we’re left with is a strange effect called “quantum entanglement”. This is where energy disperses and objects equilibrate, scientists say it’s because of the way the elementary particles become intertwined when they interact. How cool is that? So  this entanglement builds up between the state of your peppermint hot chocolate and the state of the commuter train that you’re on.

So, now you’re wondering why I am banging on about hot-chocolates and entanglement which sounds like a sequel Disney movie? Well, entanglement could explain the flow of time. Why buildings don’t just re-build, why your cooled chocolate suddenly doesn’t get wicked hot again.

The story of time’s arrow begins with what we know, that nature is inherently uncertain.

In principle, as the state of your commuter train evolves, the hot choc could suddenly become unmixed from the air and enter another pure state of its own. But there are so many more mixed states than pure states available to the hot-choc that this practically never happens — and apparently we’d all have to outlive the universe to witness it. This statistical unlikelihood gives time’s arrow the appearance of irreversibility. But this is what makes it super interesting. Literally ANYTHING could happen to us. ANYTHING. There are endless possibilities, just the statistical unlikelihood which somewhat governs our chances.

This is just another significant discovery in trying to explain how changes in time occur, but we’re all still wondering about time in general? Like why it seems different (both perceptually and in the equations of quantum mechanics) to every one and everything. And helps with the questions of “why me?”, “why not me?”

I’ve written so much about time over the past few months. Trying to understand it. Own it. Its weight. Its heaviness and lightness. Its ungraspable real-ness.  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 (could be quantum flow of time). It’s kind of a sad idea. But it does put things into perspective. We should be doing more things that are memorable! YOLO.

Since I became sick, and lost certain abilities I used to have (still mourning)- and I seem to spend a ridiculous amount of time napping and sleeping than I ever did before. I have become obsessed with documenting and measuring time, in all of its forms. This is because I constantly feel like I either don’t have enough time, that I’m not using time wisely, or that it’s going to be snatched from me before my real time is/should be up.

As a result I have loads of apps that measure things for me.

One of my time-measuring things is my Fuelband. I like the Fuelband because it democratizes work outs and makes them all relatively equally by registering fuel points as apposed to steps, or calories, or work outs (it also measures those too) but the fuelpoint system works by making sure you get data and points for all activities equally from drumming, to running and walking to wood carving to even brushing your teeth. Whatever. But My Nike+ Fuelband obsession probably lasted about a month, and then maybe like 4 months before I truly didn’t give a shit about whether or not I hit my fuel-points target. This lack of concern came with getting knocked off my bike I think (anything can happen, quantum change!). Riding my bike was my main way of excerising because it’s fun, and free, and I can grind miles even when it’s really difficult to just walk.

But I am back, concerned about my time. It always takes a period of feeling stupidly unwell, and some crazy hospital visits to make me try and get my priorities back in line. I want to get back on the bike, to start to care again about my time &  get back on  doing stuff for my output into the fuelband. I want to spend more time with friends, do work in a timely manner, research loads, reply emails when I get them, not let them build up. Quantify my quality moments. Change bad habits into good habits.

It’s a lot to ask. But if a hot-chocolate can go cold because it equilibrates with the surrounding – I’m sure I can do the same.

Time is our most valuable resource, guys. Who knows how many christmas dinners I have left – so it’s about time that I take the time to spend with loved ones and enjoy things and do things that will help with using my time more efficiently. Because Everything That Can Happen, Does Happen.