Love Is Love Is Love: Working To Make Things Better

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

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

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

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

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

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

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

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

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

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

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

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

Living and giving kindness is the best revenge. 

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

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

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

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

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

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

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Designing Healthcare through Art & Design.

Medicine develops so fast, especially radiotherapy. But one of the areas we’ve not caught up with and developed  is the design of healthcare. I know what you’re thinking. What’s art & design got to do with anything in healthcare, really? And if you’re thinking this – this basically uncovers one of the reasons why design is an issue – because no one is thinking about it.

Last year I made the first Radiotherapy Patient Information Smartphone app. RADcare. Just me. I drew it out on paper – big sheets of A3, pages and pages – in the library and in Starbucks, I read paper after paper on patient informational needs, scoped out what is already out there, thought about the pathway and critically reflected my time as a patient and doing first-day chats on clinical placement. After being a patient (not a radiotherapy one) I’ve always felt that patient information – from the letters that you get from hospitals with appointments on, to medical procedures  to be flat, lacking in information that you actually need (Like where do you check in? ) and just depersonalised. If you actually get anything at all. Visually, they’re not very good either. It’s no wonder most people don’t read the material we give them. It looks about as enticing as getting a filling done at the dentist.

Then there’s the issues of – how one leaflet can’t really fit all. It can’t offer all the information you might want to know, it may also be in a format that isn’t accessible for people – like literacy is an issue.

And yet the government wants us to be more proactive with our self care – using the internet to try and gauge what we have is important enough to visit our doctors. But here in lies another patient information problem. We don’t know how reliable websites are for healthcare data and information. So when a patient, or a family member/service user, wants to find out more information about their treatment – they end up in a sea of vague, out of date, in accurate, non-protocol information.

So I designed this prototype smartphone app.  I wanted it to be everything current patient information is not. Accessible. Even a bit cute. Detailed – but you have a choice on how much detail you want to access. And colourful. A mixture of formats – from animations, videos and text. And most of all – more personable with a bit of heart. I wanted to break all the corporate rules.

Whilst it’s so important to do your user-research first, and make the UX design user-friendly first before design aesthetics – I prepared it with research and aesthetics first. I knew that the coding stuff (I need someone to make it work better than my amateur coding can do) can be fixed later.

As Bon Ku discussed in his interview on the importance of health care design, he states that “most of us don’t realize that everything in health care is design.Someone designed the pills that we swallow, those gowns that we wear in examination rooms. But I think most of it’s designed poorly; we too often will design mediocrity in health care.

And Ku hits the nail on the head perfectly. I’m passionate about using art processes in innovating healthcare and it’s design away from mediocre.  I jumped ship from art to healthcare to use my passion of trying to eradicate social-injustices and inequalities to try and make the patient pathway better. I know, from my work with NHS England and other healthcare organizations, that creative methods – from drawing patient’s experiences, and filming their life – are great and affective ways to make the patient feel heard and valued – and as a result – you produce something with much more worth and use. Because it was built with the experience of the people using that service/prototype/leaflet.

I think part of the worry with using more creative ways of designing healthcare comes from healthcare’s obsession with measuring outcomes. In a scientific way, too. This culture needs to be adapted – not just for innovation but also for our practitioners whose continuity of care doesn’t get acknowledged. That extra 10 minutes spent with a patient – with no boxes to tick to get measured – but it made a massive difference for the practice and the patient.

But how do you evaluate the use of creative ways effectively? How do you measure them? Is small-scale testing enough? It’s a mine-field.

So I hope you’ll help me. I wanted to try and use my app as part of my dissertation — just so my spare-time project gets some academic acknowledgement. I’m doing a design evaluation of the app – and I’ll be putting key-parts of the design online with some questions and one-on-one interviews. If you want to help me evaluate the design — i would be extremely grateful.

If you want to help me – I would love to hear from you! – holla at me on Twitter, or by email smizz@sarahsmizz.com

If you have any cool articles about heathcare & designing/art – i’d love to know about them too.

And if you’re passionate about making a difference, or about art& design and health care too – Let’s share an email or grab a coffee.

Here’s a taster of the app (My favourite but is skin-care guide) 😉

 

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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.