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a family member/service user, wants to find out more information about their treatment – they end up in a sea of vague, out of date, in accurate, non-protocol information.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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Why the student NHS Bursary is important #BursaryOrBust

The Tory government believe that Nursing students (And I’m sure it will then lead onto other allied health care professional courses such as Radiotherapy, radiography, physiotherapy, ect) don’t need a NHS Bursary to help them fund their course and cost of living.

And  they’re so wrong believing this. It’s just another way to repress the NHS as we know it. And it’s bad for these reasons.

Firstly, I would never – EVER – have had the opportunity to go to university if I got no maintenance grant (for a normal – fine art course). I entered university in the first year  that tuition “top-up” fees came into play. Now, I had no sense of money so the debt didn’t really worry me too much.  And I still don’t have any money.  But I came from a family that had NO money too. I was brought up below the poverty line. No one in my family has any qualifications. There were about 12 out of my 6th form (of 250+ students) who went onto university in the area i’m from. Are you sensing all this lower-social-economic working class, less privileged stuff here?

My mom jumps from minimum wage temp job to temp job. Ruining credit scores after credit scores – but we get by. Thanks to door-step loans and borrowing from my nan  – back and forth.

When I went to university the first time – I kept a bunch of part time jobs, I had the summer to earn more money. I would wire my mom extra money to help her out too. I didn’t get ANY help. I worked in the USA on unpaid internships because I worked in the bookies in my spare time. I left university 4 years later with a debt of around £23,000. That was my tuition fees & living loan. I had also got a maintenance grant and a university bursary. And I can’t believe ‘normal degree students’ won’t get that in the future now either. I didn’t party too much, but I had to go to London a lot as part of my course and art materials and an art degree show is expensive to put on. But I made ends meet and I don’t ever remembering feeling like I was truely money screwed. But I lived in my overdraft. I didn’t care. It was free.

Fast forward to right now.

I’m in my last year of my 3 year Radiotherapy & Oncology degree. And I CONSTANTLY feel like I don’t have enough money to survive.

I’m doing this degree because after a horrific health experience I wanted to both give back to the NHS that has saved my life, and given me so much in compassion and help. It rocked my world-view. Falling sick changed who I was as a person and my old life just didn’t fit in the way it did before. But it was also really important to me to enhance patient care further,  to get rid of those moments of care where I felt misunderstood as a patient and not really listened to. Sometimes we all just need to be listened to, even if there’s nothing you can do about the issue at hand. And there’s so many systems and pathways that can be made so much better.

And so, I thought that the NHS could do with someone like me, someone who had already done work with patient experience, who can empathize what my patients are experiencing, who thrives on doing a great job and helping people, making things, and whose passion for social justice and a better society motivates everything I do.

But falling ill had made me even more strapped for cash. I couldn’t get out of bed, I couldn’t do my freelance job. I lost work, I lost hope. For a whole year. When I decided that studying radiotherapy would also be good for me as a coping mechanism and as a routine to get me back to functioning in the real world – to make me feel a bit human again and to understand the system that I loved and hated – i knew because my course was funded by the NHS I could ‘afford’ to do it. This was a hoop that wasn’t going to hinder me. I wasn’t discriminated against because I didn’t come from money.  If that bursary wasn’t there. I wouldn’t have been able to afford to do it.

But here’s the thing. The NHS Bursary barely covers living costs anyways. And they want to chop it?

Being a healthcare student isn’t like being a ‘normal course’ student. On my art course, we started late September, had a few essays, researched a lot, constantly worked (though this wasn’t logged) in the studio (realtively stress free) and you’d have a few assessments and shows along the way. You made it what it needed to be. As time consuming or dedicated as you wanted. We’d have a nice christmas break, and a nice Easter break. No exams. We’d break up for the whole summer around May time. And the cycle would happen again. I could work weekends if i wanted to because i did all my work during the week. I could work evenings because – well – i could go and work in the studio whenever it suited me. I had 4 months of potential time to save up from a part-time job and/or get extra experience in my area.

A healthcare course is much, much, much more and very different. We work 35+ hours a week on clinical practice. Helping patients, cleaning and setting up equipment, cleaning up patients,  letting them cry on you. You, as students, do carry quite a bit of the work – that keeps the NHS moving. But you’re being watched, constantly. You have this constant feeling of stress because you know you need something clinical ticked off, or you need to do more case reports, or case discussions/clinical examinations, you’re constantly being stretched and observed and building your professional knowledge, confidence and persona. And it’s not like the art studio, if I mess up – i can’t just come back to it, it’s someone’s life it’s affecting. Add 1-2 hours of commuting to work each way. And then time for cooking tea and tomorrows lunch. Then add on ALL of the academic work that you need to do that night and get up and go to work the next day again.

You have ePortfolio, exams, assignments after assignments, clinical competencies, IPE, dissertation, more exams. And you work ALL summer too. No Camp America for you. This is all on top of 35+ hours. But guess what, if you was doing a business degree, or a marketing or computer science degree with a work placement – You’d be paid for your work placement. What about us?

What about this Bursary?

Unlike normal degree students – healthcare students get sent across the region and the country for their clinical practice. They can be in Doncaster one placement and then in Sheffield the other. On my course people can be placed as far as Newcastle and Leister. Commuting from your house in Sheffield to Newcastle is probably going to be a no go. So guess what, you have to pay for 2 rents – often UP FRONT – out of your own money. But get this. That NHS Bursary barely covers your Sheffield rent anyways. Where are you going to get this extra cash from? How are you going to eat? How can you afford the bus to work? Sometimes it’s just cheaper to rent a place then it is to actually take public transport (which is pretty horrific) If like me, you’re just a poor kid from the Donx, whose mom can barely pay her own rent anyways, where do you get this extra money from? What happens if you’re a parent? What do you do then?

Then lets consider all this academic work on top of your clinical placement rota. Each 20 credit module equals 200 hours of study or teaching. Since you’re on clinical practice, that 200 hours is your own study time. But you’ve already worked 8 hours that day, you get home around 6-ish if you’re lucky. You need to do that work. What employer is going to be that understanding of your dodgy work pattern? And you’re probably going to be REALLY tired after finishing a whole day of clinical placement ontop a whole shift at Boots,  then go home and try to do some ePortfolio and do this ALL again. And people DO IT. That’s not the debate. But could you do it if that bursary wasn’t there at all? i don’t think so.

When you get a NHS bursary (which FYI is at the most around £380 a month) you don’t get any extra help from the university like you do on a ‘normal course’. You’re exempt from quite a few hardship funds in place within the university. And student loans will only lend you up to £2,200 a year – max. You have to work clinical placement all summer remember too.

Then lets consider all these extra costs which you won’t think about.

Your uniform has to be clean on each day. That’s 5 days of washing straight up. It’s white – that’s an extra load of washing. If you’re living in student accommodation – your washing is going to run you around 5-10 extra pound a week. You’re working all week,  and there’s something about clinical placement which makes you WAY more hungrier than in real life. And hospital canteen food is ridiculously expensive – so you have to plan ahead and pay extra in your food shopping to run the costs of a decent packed lunch to get you through the working day. There’s all the extra things too. You want to be ahead of the game for ePortfolio and job hunting – you need to go to conferences – often way expensive – even for students. But that’s part of your professional conduct and identity. Then you have your normal course costs. Really expensive course text books.

Then if you’ve survived all of this, and get to the end of the course and want to get a job. You have to pay for a licence to practice and a membership to your college of your profession to ensure you have insurance – before you’ve even got a job, a pay-check. This is around £380 before you’ve even started. I have no idea at this point where my money will come from to pay for that. We’ll see.

I’m lucky because I’m poor I get the full bursary. Others aren’t but their parents don’t help them out because they can’t afford to either. Many student accommodations are over £4000 a year rent now, which is more than your years bursary.

I work as a freelance artist so most of the time i can work within my own time-frames. However my health still sucks balls. I struggle with fatigue like you wouldn’t believe. So often I get home, and all I do is sleep. It makes doing my school work even harder on top of trying to do freelance work too. But I consider myself one of the lucky ones.

Others aren’t that lucky. Despite having my bursary and working my freelance jobs – i’m talking many jobs too – I barely make ends meet. I’ve ruined my credit score on this degree even further than before. I’ve got to the end of my over-draft and even had my card declined. That never happened to me before. But it’s because I’m paying up front for rents, for train tickets for clinical placement. For food that’s not covered by my loans.

Healthcare students don’t fit your normal format. Most enter the degree much older than your average student population. Many have children and family. They need this bursary. They too probably already have a degree like me. Their story is probably similar. They saw a loved one close suffer dilibertating illness that inspired their calling into healthcare; after having children they wanted to become a midwife; or sometimes they just needed time to mature to discover their true calling.

The NHS treats a population as diverse as you can imagine, and it needs staff that represents the population it is treating. We don’t want a select few who can afford to take on the debt or that their parents will pay everything for them. We want them as well as the people who know what it’s like to be down and out on your luck, who know what it feels like to suffer in constant pain, who have children and know what a parent may be thinking, who know how tough times are. We need people who are compassionate, and creative and passionate and brave. And I don’t want them to be priced out.

My mom has always brought me up with the belief that I shouldn’t make money a barrier. This has hindered me in different ways  – like buying things I shouldn’t have because I can’t really afford them – but not everyone is brought up with that belief and some people don’t have the emotional or financial support to be able to take a leap and do a course without any Bursary help.

You wouldn’t expect a kid to pay for their apprenticeship- you give them a terrible wage (which FYI- apprentices need to be paid more too). Nursing students, like all healthcare professionals DESERVE a LIVING WAGE. The bursary isn’t a living wage. But it’s something. Taking that away is disrespectful, it doesn’t acknowledge the hardwork and the goodwill that comes with the healthcare courses. The NHS does benefit from students. We don’t ask for much because we’re passionate about making the system better, about caring for society. It’s NOT about money. EVER. But this is forcing people not to have an opportunity, and potentially change the face of the NHS.

The consequences of not  having a NHS bursary in nursing are SO much bigger than you’d ever think on first inspection. We’ll loose our social mobility of the profession, the career progression, the mentorship, we’ll loose people applying for the course, and have a shortage ina  time that’s already suffering a shortage.

It’s bad news. And it’s not what the NHS stands for. That’s why I am standing with Nurses and all healthcare workers – for both the junior contract and the student nurses bursaries. We’re all one in the NHS. We work across professions and care for our patients and their carers and we need to look out for one another too. To the future of nursing, and all healthcare professions, and our care and the NHS.

 

 

The Heart of The Matter: Hope.

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

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

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

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

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

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

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

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

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

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

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

A Story of forgiveness, learning to trust again & my 10 years with Ed Miliband as my MP.

Now, I don’t want to preach, or tell you who to vote for in this upcoming election. Some of you have probably already voted by mail too. But I want to share with you a story of such, and hope that if you were feeling disillusioned, that you will use your vote for the better – and really vote!

I believe that everyone has the right to vote how they believe is right for them, and for their country.  Of course we all see and experience the world in many different and unique ways that our voting system often doesn’t come close to reflecting this – and can it truly do so? ever? Probably not. But it can try. Additionally, what is important to me (education, NHS, equality, social justice) may not be as high for on your own personal agenda.

Unfortunately, a lot of the time we’re mislead by a massive media elite that, as Marxists would put it, keep the working-person down for their own personal gain.  We see this with Rupert Murdoch acting as the Dark Lord sending tweeted threats to a Tory government failing to get a majority – because they work in favour of him and his $$$ million empire.

They (the elite) don’t want us to be equal, really. They plot us against ourselves, tricking us, lying to us, twisting the truth. Mashing up the narrative so much that we don’t even know what’s really going on, and what we believe any more. Who can be trusted? Our enemies become ourselves, our neighbours; immigrants (the majority of us are immigrants somewhere down the line); people who are on benefits; students; old people; people who work on minimum wage; mothers/fathers/single people; women; workers of all kinds; teachers, doctors, HCP, politicians, bus-drivers- whatever- you name it – they disguise the real issues,  hoping that we will never see past this vail of insecurity and fear that they continue to instil into us. Twisted pieces of the truth, so far from the truth it is a fabricated lie. Sold to you, as if it’s in your best interest. Now, not all media is evil – but a good huge chunk of it can be if it believes that it’s own interests are at risk. Media is probably the best-est social control agent that we have in society.

It is at the juncture that I have to admit that I too am majorly skeptical of politics, politicians and their hunger for power and unkept promises. However, we do need to trust people we’re not sure we can trust all the time – taxi-drivers, hairdressers, dentists and doctors, people on twitter, ect. It’s the bare-fabric of humanity being able to trust, and working in the greater good for all. And if someone breaks your trust – then shame on them, but we must be able to trust a vision we believe in, and we can rebuild trust. Forgiveness can be one of our most important tools in living.

That’s why I’ll be voting Labour in 9 days. Even though I voted Labour in 2010 (my first ever election – which was very exciting) it didn’t feel as right as I had hoped. The last Labour government, Blair et al, had strayed way far too neo-liberal capitalism-middle-of-the-road for my liking. If I wanted that, I would have voted Liberal Democrats. But still, I knew – despite many wrong doings over the 13 years Labour were in power – that in the heart of it somewhere, the real every-day struggling person was there in the value-system. Not just big media and corporation businesses and banks. I benefited hugely from many policies as a poor working class kid from Doncaster.

When Ed Miliband won leader of the Labour party I was very excited for a number of reasons. And so my story begins:

My background is – I was born and raised in Doncaster, a small ex-mining community. My mom fell pregnant with me whilst still in her mid-late teens, and she decided to do it all on her own. School was never her thing, a rebel in her own right, she left school with little qualifications. She fell in love with a bad-boy: my father – who turned out to be pretty violent and lazy (he was prison a bunch of times). Needless to say, I was brought up on council estates, hand to mouth poor, debt collectors and everything you can imagine. And it was miserable. My mom couldn’t escape this domestic violent relationship for the fear of not being able to afford to raise my bro & I on her own ( also lets not ignore the emotional and psychological tricks that get played into making the person believe it will be different next time, even though it’s not). They were never married. So little rights between my mom and father existed. We we’re made homeless when we did escape a dangerous situation, because – like – housing crisis. Duh. More shitty stuff happened, but I go on. I tell you this because it represents my struggle, past, present and future. It represents what is important in acknowledge what every-day-real-life living is like for the majoirty of people in the UK.

I’ve been following Ed Miliband’s political career for some time now. He’s been my MP for about 10 years? He won’t remember this but my friend and I went to visit Ed at one of his surgeries in his first year, maybe few months of being our new MP. My friend and I were 16/17. And had just applied to go to university (the very first in our families)- but UCAS had received our schools (NDTC, now Adwick-Outwood ) applications, cashed the cheque but not processed the applications – for months – making our applications super late, after the deadline.
We were so worried that it was going to affect our chances, already underdogs in the process. I’m not sure why we decided to go and see Ed, seemed like a good idea at the time – and I can’t remember  what he said. But everything turned out just fine – but I remember feeling like he really listened to us – and took our issue seriously. This had a profound effect, and one of the reasons why I know we can trust him as our leader. He asked us if we could help him come to our school because  he was new to the area. I think it’s really special & incredibly important how he acknowledged the younger voters and tried to get them interested in politics, genuinely – this wasn’t near any election at the time.
I went on to study Contemporary Fine Art at Sheffield Hallam. It was a dream come true & many of the best-est years of my life so far. I was able to do so much more than I ever thought was possible as a super poor, working-class kid from Doncaster. I got to work in a world class art gallery in Chelsea, NYC – so rare since the artworld is much like politics – you often have to either know someone, have a silver-spoon or grassroots your way up. I  worked in Chicago, scouting out social-engaged art practices, and political gatherings. I also worked for many summers for the YMCA of greater Boston, USA (This makes me a huge Boston Red Soxs fan too 😉 )
I tell you all of this because I think it’s so important that kids from disadvantaged backgrounds, like I was, to have a stable and good opportunity for a great education & then if they so wish – can afford to have the opportunity to go to university (£9,000 a year + living is just an insane amount of money). That all subjects – whether art or science, media or engineering – are worthy of the same merits. Things like EMA when I was at school made such a huge genuine difference, I was able to pay for my school dinners, and buy things for my classes since my school couldn’t afford them. AimHigher was also an important element in helping me have the right tools to know how to apply to university. Today, education is disjointed. Free-schools and academies run however they like – some amazingly, some absolutely poorly doing a disservice to students.
I believe and hope that Ed will help to restore the education system so it can help students believe in and reach their potential, or at least have the funding to do so. To re-invest in SureStart – which makes HUGE differences to struggling communities. And I believe he’ll  help to invest in the cultural, creative and technology industries in our country – because I believe that these are some of our most strongest areas as a nation, and not supporting or investing in them is hurting our economy as well as our nation. Take the British Film Council funding that the Tories cut for example. Film is a HUGE part of our industry, and a Tory government thinks it’s not worth it.
I  met Ed again when I attended his wedding reception party event in Bentley that he hosted for the area. Which I thought was an awesome idea, he is always putting on events (and has always way before he was leader of the Labour party – again prooving he really listens, wants to engage and wants to help local people).
In 2011 I was 22 working in Boston, USA when I  fell pretty poorly and got told some pretty messed up things about my health —- and my medical insurance at the time wouldn’t cover it. I was alone, 1000’s miles away from my family. I had a bit of an existential crisis.  My USA work-friends at the time covered my medical costs. So I  (eventually – I was in denial a bit) came home to receive some of the most compassionate and excellent  medical care I have ever seen and witnessed. My GP – still – gives me so much of his time, and i have great continuity of care. The experience of being in the privatized medical world of USA compared to the NHS of the UK made me appreciate what we have and proved just exactly why we can not allow the NHS to be privatized. Not only does the NHS save many lives – but also improves people’s quality of life – I would have been bankrupt if I was in a system where you had to pay for each appointment/treatment.
From this experience, I am now back at SHU retraining in Radiotherapy & Oncology. (I’m still working as a freelance artist!) I feel this undenying need to give back to a system that gives so much. I want to continue to give the best compassionate care, that I’m given, to everyone. I want to develop new research and tools that can help save lives, and my creative background has really helped me to do this. As a student working clinically at in Leeds – I see just how amazing the NHS is, what profound differences it makes to people & I can also feel and see the repercussions of this Tory government on the NHS. This is one of the main reasons why I want Labour to succeed in gaining leadership. Because the NHS means so much to everyone and Labour seem to be the only one willing to stand up and save it.  I know there’s the NHS Party, and the Greens have a pretty great NHS budget – but realistically – in terms of majority win – Labour is our only hope.
Additionally I met Ed again in 2013, outside Morrisons. I was helping out with Food Bank collection and he came to help and show his support. I thought it was necessary because he was acknowledging that local people are struggling so much to just put food on the table, whilst the Tories will pretend it’s not even a problem. Even stopping the official statistics of use of Food Banks because they don’t want the blood on their hands.
So, guys. After 10 years of Ed Miliband being my MP – having gotten to know him before it was super cool – I’ve grown up with him – he’s a bit like your family doctor. See him when you have problem; he always tries to fix it – and you both slowly get to know each other. I believe he really – genuinely cares about the gaps of inequalities we are all straddling and how we’re constantly tricked and decieved by corporations and the media. And we ALL deserve better. Especially better than what we’ve currently got. And he knows this. I think we can really call on him to be there for us.
 I just wanted to say thank you to Ed for his awesome 10 years of being our MP – and thank himfor running to be our future Prime Minister, because it was time to leave New-Labour behind. Sometimes it’s the most subtle differences, experiences, meetings that make the biggest of differences. The people of the UK need someone to believe in – need someone who understands what these services need and how necessary they are – and how people are struggling – and i think it’s Ed that we need. especially out of all the main running candidates.
And what’s even more impressive? Is that I wrote a similiar E-Mail to Ed a few weeks ago now. I didn’t actually think he’d read it – especially so close to the general election. But lots of the Labour Party Campaign people read it, the Doncaster Mayor read it, and they all made Ed read it. And he wanted to meet me again at his local campaign launch. It was awesome. There’s a charisma that sometimes doesn’t translate on screen thats genuinely caring and warm when you meet him in person. Everytime I meet him, he remembers that I’m an artist – now that’s pretty awesome you have to admit? 10 years running.
So guys, I’m hoping we can have Ed as our leader on 7th May. I hope you do too and will help me to try and get these votes. I know people are concerned mostly with the economy and are worried that Labour is not the party for this — but it’s a complete lie (again) that the Tories are competent at doing it. Our debt has massively increased, whilst our economy is barely moving and the most vulnerable and struggling are paying for a crisis caused my insane bank-lords, world-wide that exasperated the deficit of the UK. Not Labour. I will state again that the previous Labour Government did some shitty things and made some big mistakes-  but they’ve admitted their mistakes (which is good practice!) and we all benefitted to some degree with some  of their better policies. I can’t even name 1 policy under this Tory Government that actually benefits US?
And yeah, let’s save the NHS!
To learning how to trust again. Forgiveness and investing in the values that we really believe in: equality and compassion
Ed Milibae
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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/

 

Growing Up A Second Time

It was my good friends birthday yesterday. She turned only 19 years old. Still a baby. Although 19 was only 6/7 years ago for me, it seems so much longer. Being in your mid-20′s isn’t that old, but I feel like I’ve aged 2 lifetimes in the past 3+ years, I feel like I’m ageing in dog years. Maybe ageing like that makes you look back a bit more.

As I was out with my young course friends, I thought about what I’ve done so far in and with my life. And what getting older kind of feels like.

Philosopher Alain De Botton tweeted today that ” ‘Growing up’ in many ways a long process of learning to put up with stuff. Eventually, even the idea of dying.”

I came from an incredibly poor family, mostly it was just my mom, my bro, and me with my nan popping in often.    As a result I didn’t have many things considered as “cool” growing up. My clothes were cheap, and shabby. I was a bit weird, I loved hip-hop and animation as a 8 year old. I had this incredible imagination. And I was kinda fat. This made me such an easy target to be bullied every-single-day up to high school. I tried my very best to be “cool” and “likeable”, but we didn’t have the money and when I did save up to get some “cool things”, the clothes looked weird on me. It looked insincere & wrong.  Luckily, time and age taught me to slowly accept myself and follow what I like. And the strangest thing was, the more I accepted myself, the less grief I got from my fellow bully students. In fact, almost the opposite happened. I got more respected, and more known once I had accepted myself. Funny thing that, self-acceptance.

After my GCSE’s, we were made homeless (for too many reasons) for 6 months. We lived with my nan for a few months, until her landlord knew she was over exceeding her limit of people in the house. And then we went from temporary accommodation to temporary accommodation, all whilst I was trying to study for my AS levels. We finally busted the system and got enough points to get a council house. Crazy point: being homeless doesn’t give you enough points on the system to be eligible for a council house. Or it didn’t in 2004/5. How fucked up is that?  I remember at the time being incredibly embarrassed about this. I didn’t tell a soul for months. But it just reinforced my love for Marxism and social justice. I was voted, by the whole of Doncaster by kids, to be a Youth Councillor for the Donx Youth.

I lasted about 8 months (and resigned) when I realised we didn’t really do that much except organize fun pizza parties.

I met Ed Miliband, he was the new MP the North Doncaster then. My friend & I had gone to complain about UCAS taking our money and then not processing our applications making our application late, and after the deadline – potentially affecting our uni offers (It didn’t). I stated it was because we’re working class, and the system was against us (Marxist in me). Of course, it was just a person not doing their job correctly, some clerical error. I can’t remember what he said he’d do. But I do wonder how many 16/17 year olds go to see their MP these days? You guys really should if you have an issue!

Ed asked, since he was new to the area, if I could organize for him to come to our school. I was pretty stoked with this & ended up doing a lil work with Ed. I had no idea back then that he could be the potential prime minister of 2016! (Hopefully, eh?!) – People, strangers, you meet will always surprise you. Everyone has a story.

I then was head-girl of the school in 6th form, and then also got excluded (for political reasons) as Head-Girl. I was also embarrassed about this. But as time has gone on, I realized just how kind of awesome it was. And it’s just another crazy story I get to tell. This taught me that the system, if it really wants to, will make sure you’re screwed over if you try and disrupt corrupted power.

As soon as I turned 15 my mom made me get a job. I didn’t even want one.  And earnt a measily £2.50 per hour of my life. I knew my time was worth more than watching kids throw plastic balls at each other and fish dirty nappies out of the ball-pool. But as I got older, I realised why my mom made me do it. 1.) to instil a sense of labour and work and pride in earning your own way. 2) to learn how to interact with people you may never interact with outside of that environment. I swapped the wacky warehouse for scraping chicken fat off trays at ASDA in the rotisserie for 2 years every weekend & some more, but for £8.50 an hour. Not too shabby for a 16/17/18 year old. I saved all my money from this job, & EMA and took my mom to NYC for her birthday. It’s one of the best trips I’ve ever had.

I went to study Fine Art at university, I’m not sure how I came to decide to go to university as I’m the first person & so far the only person who has gone to uni in my whole family. It’s something that was never discussed. I just came home one day & was like, oh I’ve applied to university! Like I’d just subscribed to a mailing list. I remember feeling very casual about it. I even thought that once I got to university, that I wouldn’t be smart enough, get home-sick and drop out.

But I was pretty wrong. I ended up bulking up my time an extra year & getting a BA & a MA.  I didn’t really return home for longer than 3 weeks for 4+ years.

My first uni year I applied to do Camp America. I ended up  being placed on an island in the middle of a beautiful, clear water lake surrounded by mountains and trees in New Hampshire. Once I arrived to USA, I stayed in an industrial part of New Jersey for a night, I had to catch another bus at 5:30am to take me to port authority bus station, NYC, where I had to catch a greyhound bus to Boston, switch to another bus in Boston to a Fullers Gas station in Meredith, NH. (a lonely, virtually empty – and closed gas station when I got there) Where a complete stranger from the camp was to meet me, alone. I felt like I was some tame, none-drug induced version of Jack Karoac’s On The Road at age 18/19. The age my friend just turned.

I had a decent enough time at the camp, but I felt like an outsider in a very -family orientated family camp, enriched in family tradition – where everyone had been brought up together. I counted the days down to when I could leave and be back in NYC. The strangest thing was, once I got to NYC for a whole week. I felt incredibly lonely. I hadn’t realized that I had accustomed myself to Sandy Island life and friends. That’s the thing about time, it punishes you later for wishing away your time.

I decided to do live my fantasy of “On The Road” I had about $500 in my pocket from my camp summer job and a flight home from LA. I was still in NYC. So I took a bus to DC (I didn’t have any sort of game plan, don’t ask how I was planning to get to LA?!) but ended up meeting some people around my age who were going cross country in  a van and camping. They asked if I wanted to join them so I decided to tag along. We did > DC > West Virgina and went Wild Rapid Boating > Virgina > Tennessee > Alabama > New Orleans — where my identity was stolen and I  was fruaded and had no $$ in my bank account. At this point I had about $150 to last me. I cried. I had no idea what to do. But  thing is, things work out. I was with good people. My mom wired me $80 >> we moved onto Texas, survived a mild hurricane >> Hitch-hiked over the border to Mexico, got really drunk and had to beg my way back into the USA >> New Mexico – saw some crazy bats > Went to Monument Valley and stayed on Native American land. I’ve never seen skies so clear. I slept outside on the ground in my sleeping bag instead of the tent – not even thinking about scorpions and crazy spiders and snakes that could have been hanging around – to sleep under the milkyway >> Went to Zion – hiked angels trek, and through rivers, went to Grand Canyon and we partied so hard we got asked to leave. >> We went to Vegas where I fake-ID’d my way into clubs, and bought nothing because well I had no money. But my new travel buddies help to pay for my liquor. We did a limo and ate at this super cool sushi place just off the strip. My first ever sushi experience> We drove to LA where we drank in a dive bar just near downtown LA, under a bridge. I felt like I was in some indie movie. This was the last night I saw my travel buddies. They were carrying on to San Francisco. I had my plane to catch.

That was the last time I saw them. I’ve seen a few of them since and we’re all still friends on Facebook. But this taught me to talk to strangers, take calculated risks, some times not having plans works out way better than having a rigid plan.

I once lived in this hip-apartment in Williamsburg one summer, that over looked the NYC skyline with a bunch of cool people doing internships for MTV, Saturday Night Live and The Onion – all on their daddy’s $$$ funds. I was funding my own dream. One of the dudes is an upcoming comedian on the West Coast and was in that Oscar winning Ben Affleck movie.

We were a mixed group of kids, with high energy, big dreams. Wide-Eyed in NYC. I ended up working for some of the most amazing and awesome people who changed my life in a then Chelsea Gallery. I remember how hot a NYC summer is… Coldplay Vida viva song was hot shit too. That album & Chris Brown Forever always takes me back.  I asked M, the gallery boss, what her story was, how did she and her husband open the gallery. She spoke about communist Poland, trips to Chicago that made her fall in love with NYC, a burning love for art & art-history, selling shoes, joining rich upperside ladies visiting studios and collections, borrowing money & opening their first gallery that’s still going strong 28/29 years later.

I remember every single piece of art in that summer show and if I even really think about it – how much each piece of art was being sold for. I’ve never been so upset about leaving a job (even though it was so short), some people, a place before that. But one of my distinctive memories is my last day there, i walked out of the gallery, turned left walked down to 9th ave, kind of holding tears back looking up at a clear blue hot sky. I walked to the first working pay-phone I could  find to call home to my mom to say how i was so happy that i had this amazing opportunity, but how sad I was to leave.  I thought that I’d probably never see the Postmasters crew again, I thought I’d get forgotten about because that’s how my life was/is… Important people just fleeting between moments.

Luckily, I get to go and see them every year and this makes my heart  so happy.

I left NYC and worked in a bookies (betting shop), trying to gain back the money I spent on my NYC wild adventure. I learnt how to bet, how to calculate all different bets like round robins and how to really bet on horses. That a favourite horse is statistically 33% to come in at a meeting, if you’re willing to chase your money around. I learnt how to follow soccer and do football bets. A great way to make money if it accumulates!  I saved enough money to take an amtrak train ride across USA the same summer with my good friend shivvers.

She made me a rule. I couldn’t talk about art the whole journey. I suspect that’s all I was bothered about back then. We stayed in the Bellagio Hotel in Vegas courtesy of her dad. Shivvers wouldn’t even let me open the mini-bar so we created our own from mini’s from the vegas giftshops. We had a cab driver who had some sort of turrets and cursed death on every driver he drove past. I learnt that it takes about 3 whole days to take a train from LA to Chicago, and that you should pack spare clothes and not just check them all in. There was a guy who was giving strangers Tattoos on the train (certainly not us). We sat on the train, making up our own before sunrise stories up for all the strangers. 2008 was a good year. I keep telling the kids on my course that 20 was one of the best years of my life.

I taught spanish kids english in Hastings for what I think was the Spanish Mafia. They paid me about £400 a week in fresh £50 notes, cash. I’d take it to the bank and every time panic that they might question me. They never did but I was sure they thought it was dodgy money.  These Spanish kids were clever, and spoke many languages. They learnt quick. I remember my favourite and most promising student failing her exam. She was the only one out of all 16 kids I taught, but I felt a sense of  responsibility & guilt for it. That I was the reason why she failed. Perhaps it was nerves. Perhaps it was my teaching. perhaps we were both complacent. I often wonder what they’re up to now and how their English is.

I went to Chicago and worked on social art projects, and at the university of Chicago. I saw proper Labour Activist movements, I worked with real poor communities. I wrote things for great art magazines. I lived with people who worked at the MCA and Hyde Park Contemporary Art Center. I saw Obama’s house, I saw the Home Alone house, I had my first ever real Thanksgiving, and lived through the coldest weather I have EVER EVER walked through (about -20). These experiences woke something up in me, I went back to standing true to what I loved doing. Drawing and comedy and truths.

I wanted nothing more than a 1st class degree in art, but I couldn’t figure what I was missing to push my grade in to the first category. When I decided to go back to what I love, not worrying too much about the marking criteria, I finally graduated at the last hurdle with that hard worked for first class degree. Another lesson to be learnt. Sometimes you need to stick to your guns and your integrity. Don’t just do something to please others or because you think it will sell. People can see if it’s not true. And remember not everything that glitters is gold.

I have since never had to use my degree. No one has ever asked to see it, except when I went back to study. i do remember my art lecturer sending me an email telling me what I got. my heart was practically in my mouth, I opened the email using Boltbus free slow wifi on a bus from NYC to Boston (On my way to work back at camp some 3 years later from my first experience). I was stoked. I just wanted to tell the world! But I was travelling alone, so I did the next best thing. I wrote an email to my mom, a few select friends, to M at Postmasters and to a past lecturer michael corris who I looked up to in many different ways.

The first year after graduating with an art degree can be pretty hard. They never really tell you that, you assume it will be hard but you’re hopeful that it won’t. I graduated in the thick of the new recession. people were loosing their jobs left, right and center. Companies were being acquired or forced into bankruptcy. I got lucky and worked part time in a bookstore with another group of amazing people. Nothing prepares you for the doubt that you feel about following what you love when you consistently get rejected. But with rejections come some lessons. Lessons turned into opportunities and more opportunities and more lessons to learn from.

Things started working out for me with making a basic living with art and drawing. And then I started feeling all funny. I experienced fatigue like I’ve never experienced in my life, I was having these drenching nightsweats, I couldn’t eat, I had nose bleeds constantly, I had pretty bad bone-pain. It felt like flu-like symptoms but without the flu. I went back to the USA where I ended up being told it looked like Lymphoma. Cancer. I was like, fuck.

My whole life view was flipped upside down. Things that I thought was important didn’t seem as important as they once did. The unimportant things felt way more important. Time felt heavy. I had to grasp, in that moment, that my life and everything I’ve known will eventually blink away in a matter of decades, if not years, if not hours, and I will cease to exist. Which is hard, because when you’re young – you feel kind of invincible. Like you can put things off, because there’s always tomorrow, next week, next year. But there’s isn’t always more time.

Things carried on as normal though. As if nothing had changed. Which can be the most annoying thing ever, because I guess I’m still hurting and I want change. I want more urgency in things. I learnt from being unwell to ask for help if I need it. We can’t do everything on our own.  I decided to learn from these experiences and use them to make a difference, so I went back to university and I am now studying Radiotherapy & Oncology.

I got hit by a car on my bike 2 weeks ago and broke & bruised my ribs. I flew over my handlebars and through air, I flipped upside down and landed on my neck.  And I realized that there’s far more probability in me dying from being hit by a car than most other things.

So, what does it feel like to be older?

From time to time something reminds you of the past. Things hurt that never hurt before. Music was definitely better 10 years ago than it is right now. You start to buy things because they wash well, and shoes because they’re much more comfortable to wear. Time goes way faster. Experiences mash together like a tie-die. Leaving only horrendous memories and those euphoria, bucket-listy, nice moments that help build who you are in this very moment. There’s nothing much else in between.

When you get older, things you thought were important when you were younger aren’t as important and those things you thought were unimportant become more urgent.

I’m left looking at my younger course friends, what life experiences are in store for their next 6/7 years on this life, and just how much different a 19 yr old mind & body feel like compared to a 26 yr old mind/body.

I ended  my friends birthday with this thought:  What if we celebrated our expected years left instead of our years already spent?

 

 

 

 

 

 

 

 

 

 

 

 

Discussion: What it feels like to have significant “fatigue” rather than just being “tired”

The medical term for tiredness is “Fatigue”. It covers basically any word that could be used to describe tiredness – from exhaustion, lethargy, and listlessness, ect. It covers both physical and mental tiredness. Often both impending into each other, if a person experiences physical tiredness for long enough, it will often create a mental tiredness too.

Many of us will suffer at some point, generally, with tiredness. A fatigue. Some people, unfortunately, with chronic fatigue. Statistically, globally about 10% of the whole population suffer from insane fatigue.

But I propose a difference needs to be made.

As someone who is now trying to learn all the correct medical, difficult to say & spell latin terms, for certain presenting signs and symptoms a person may experience; and as someone who is constantly, endlessly feeling run down fatigued, I now believe that there should be a huge difference between the definition that describes tiredness and fatigue. That tiredness should be tiredness, and fatigue should mean extreme tiredness.

I remember ‘just’ tiredness well. It’s like an old friend, a recent distance memory. Tired to me meant that when you woke up after 8+ hours sleep, you would feel somewhat refreshed. Ready to go! Tiredness means that when you yawn, you know you can continue on, perhaps slower than before but you can continue. Tiredness means even though you want to go to bed, you can still do your tasks. There’s a reserve there. Just like when your car’s low gas warning light comes on. You know you have a good few miles before you really need to get gas. That’s tiredness, you can keep on going, regardless.

Fatigue is a different ball game. Fatigue almost ruins your quality of  life. And it’s confusing as hell.

Many of my patients going through cancer treatments complain of tiredness, fatigue. They talk about it in past tenses; “I used to be able to walk Adrain’s wall, now the thought of walking any distance is overwhelming.”

The thing is, I can totally relate to that feeling of overwhelming fatigue. If you try and explain it to someone who is lucky enough to never experience this extreme tiredness, fatigue, they think it’s the same as normal tiredness. And it’s not. A lot of people actually think it’s a mind over matter thing, that you could probably feel less tired if you wanted to, and it’s really not.

What makes it more difficult in us being able to define levels of fatigue is that it can’t really be scientifically or chemically measured. And if medical science has taught me anything, it seems that we’re pretty much all about evidenced based practice in chemical numbers, rather than patient-centered-based-evidence in emotions, experience and feelings.

The thing is, there seems to be very little in combating extreme fatigue. Normal tiredness, you can sleep and more often than not feel better and re-energized afterwards. No amount of sleep relieves you of the tiredness in extreme fatigue. Extreme fatigue makes you feel like you’re being slowly poisoned, that someone is pushing your head down below water. That if you were a Windows PC, you would run like you were full of firmware & viruses; frustratingly slow and lagging, delayed in every thought and movement.

I think I’ve read a lot of research papers, and looked at and tried A LOT of things that are supposed to help with fatigue.  I knew I had problems when I started considering illegally trying to get a hold of some Adderall RX as one of the side-effects is feeling energized and less tired & concentration. I didn’t, mainly because of the apparently addictive qualities. I can’t be doing with that. But I would literally do anything just to get back to my old energy levels, or even just close to them.

The advise we offer during in clinical to our patients is, if you can do some light exercise, do it.  It’s the same advice in chronic fatigue, to keep active rather than let the fatigue consume you. This is tricky business though. The fatigue has already consumed you. Do too much, and you can end up setting yourself up for a weighty fall. Do too little, it doesn’t contribute all that much. And of course, the actual act of getting up and doing it sometimes seems more of a work-out than anyone would know.

I invested in sleeping apps to analyse my sleep. On  those lucky relatively painless, night-sweat-less nights I’m literally dead in my sleep. I sleep like a good baby. So I know I sleep well.

I’ve seen 3 different “healers”. I’ve done the whole positive thinking, in denial, ignorance, rest, unrelentless bed rest, routines, sleep. I’ve had Raki. Tried massage. Tried Physiotherapy (until he told me he wanted me to be re-evaluated). I’ve done some yoga. I’ve bought so many fitness & health apps, you wouldn’t believe.  I bought a Nike+ Fuel Band to motivate me to do more exercise, like running. I joined row-fit & hurt my shoulder even more. I try and ride my bike anywhere I can. All of this is hard because running up 2 flight of stairs makes me out for the count.  I changed my diet to include even more veg and fruit. I dropped soda (most of the time) and swapped it for tea. I picked up a specially imported Yerba Mate Tea for the caffeine. I tried multi-vitamins that changed my bowel habits, and energy drinks that just ended up making me sick. I even pretended to be a smoothie maker business to be able to buy 45 packets of frozen puree Acai Berry because in the UK you can’t buy it ANYWHERE. Just in watered down juice form and power and capsules. Apparently Acai Berries are a super fruit that has so many amazing qualities in them to make you feel healthier. There are other things I can’t even remember that I’ve tried. Most of them were in the USA because those dudes are craaazzzyyy over there with their alternative medicines!

And after all of this. I still feel like shit. I can’t even begin to think about all of the money and time I have wasted chasing all of these things, hoping and wishing that it would be the thing that would eventually work. I wish I could tell you that some of this made a difference. And perhaps I am being a lil’ too hasty here. I do feel a bit of an energy improvement after I’ve exercised, but it decreases fast soon after those hormones have disappeared, and the crash is sudden and very real.

I go to bed tired.

Wake up in the middle of the night, tired.

Wake up in the morning, tired.

And I feel wussy talking about it, because what’s the big deal about being tired? Except when it lasts days, weeks, MONTHS. When it makes it hard to motivate myself to do anything, when I can’t work, can’t function, and can’t ever not feel tired. But writing this always feels therapeutic.

So, this is why I think it’s important that we understand that there are core differences between being tired, and being significantly fatigued.  And that we need to assess just how it affects others lives.  I know when my patients say to me, “I’ve been feeling so tired, so fatigued.” They’re saying to me that they just don’t feel like themselves. I get it.

And that’s what real fatigue does to you. It makes you question everything you was, and why you can’t be that person any more – the person who could multitask until 3am and get up in the morning and be totally cool about it. My old normal life is running current me into the ground.

And it’s not depression either. Because you’re not unhappy. You don’t feel sad. You just feel ridiculously tired. And when that fatigue really hits, you can’t even muster a word. You almost have to crawl home because you have no reserves left, you just have nothing left to give. And This is no exaggeration.

A friend said to me the other day about someone else & their tiredness, “I think maybe it’s a mind over matter thing”. And I flipped out, it’s a sore point for me. I tried explaining these thoughts of mine on a need for us to differentiate between tired and fatigue. And stand by it.

Because there’s nothing worse than feeling like you’re not only letting yourself down, but letting down others, your friends and co-workers, because you can’t muster the energy and enthusiasm you owe them and owe your work.

In extreme fatigue you just end up asking yourself, how do I pick myself when I have nowhere else to go from here?

There’s no foothold, nothing to firmly place your hand upon to hoist yourself up again. How does one recover from extreme fatigue when all the above doesn’t seem to work or fails and there’s no support system in place that understands this detrimental ailment?

How do you start over again?

 

 

 

 

 

 

 

#NHSChangeDay Pledges #Quality14

Here’s some people’s #NHSChangeDay Pledges that I’ve drawn on Twitter recently. I think it’s important sometimes, to have an image to help communicate/reach a bigger audience.

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pledge by @LAS_QI

 

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The awesome #Hellomynameis Pledge by the awesome @grangerkate

BlTMjDMIAAAdvuA

@wlasinclair

BlCfDY4IMAAZzPx

Drawing all these pledges was only possible because of @respirologist sharing his!

BlTH18wIYAAtIC3

 

@e_arnotsmith

 

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@whoseshoes Pledge to help people living with Dementia

 

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Make nurses be proud about their job @annabethAE

 

BliLZGUIUAAWDLb

 

SMILE! By @thebestjoan

 

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Think about the wider public health and wellbeing! @damian_roland

 

 

BliSRMeIgAAAM4n

 

@sugarpuffs66

 

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More smiles & hello my name is by @bexmoxon

Everything is fragile.

Mid-20’s isn’t that old, but I feel like I’ve aged 2 lifetimes in the past 3 years. Maybe aging like that makes you look back a bit more. Just as you can see from my blog, my focuses in life have shifted; I’m not just looking for self-improvement in what I can change per-say, but  more to learn how to have grace in the parts of me that won’t budge, or have grace in things I can’t control right now.

One of the hardest parts of having to adapt to being a much slower, less  interesting and hardly a multi-tasker Smizz due to illness, is being observed 24/7. I used to invite people to watch my performance of trying to make it in the artworld— I’d post lots of things I’d make, constantly advertise myself – I kind of craved the attention— but I had no idea that it was going to open me up to some damaging mindsets. It now makes me feel like I need to be on top of my shit 24 hours a day, and I can’t do that anymore. Mainly because I’m either in bed (mostly), studying (secondly),  drawing, or out trying to live life (making up for 1 & 2).  I’ve been trying to learn the “It’s okay to say no to things sometimes. Because if you can’t say no, you can’t fully say yes”.

I’m no longer  living up to the persona I assigned to myself.  I feel like I’m not only letting everyone down who invested their time into me, but I’ve let it make me believe I’m letting myself down too.

So after feeling like I was going to die, and feeling really sorry for myself. After not having the mental /energy capacity to work on my own work, just enough to work on others (which has been/is amazing, and I needed it to survive- both mentally & financially). After seeing people who I admire and respect because of their vision & dignity, struggle in this world. After months and months and months of wishing I could be part of it,  I returned from this ordeal to resume work and rejoin the artworld, but  my membership had expired. I felt like the Artworld had forgotten about me. And everything I made and saw seemed like trivial bullshit—because quite a bit of it was/is (not all of it). Disingenious money grabs.  all speed was stupid.  Some things was just despicable, because it stole the dignity of everyone involved. We deserve better.

This is harsh criticism, and way super cynical, but it is how I felt at the time. These feelings have eased a lil bit, but I’ve always had a critical view on the Artworld because I’ve always been coming from a disadvantaged point anyways. And I’m a Marxist. However, noticing the bad also makes it easier to see and notice the good. Many of the things I love about the artworld are still here, and doing maybe better than some of the crappy parts of the Artworld.

 

My friends, Lesley Guy & Dale Holmes did this super cool show  at Bloc Projects in Sheffield about Pizza  a few weeks ago. It was so good I went home & ordered a Domineos.

Screen Shot 2014-03-19 at 15.58.44

 

One of the best artists out there Gregory Sholette is trying to crowd-source this phenomenal project. http://www.indiegogo.com/projects/imaginary-archive-kyiv –  Which is an Imaginary Archive – a collection of fictional and real documents from a past whose future never arrived of Ukraine. It’s such a special and important exhibition, and so necessary at this time, so if you can find the time/$ to support it, that would be amazing!

 

Screen Shot 2014-03-19 at 16.10.17

 

 

I really, really, really want to see William Powhida’s phenomenal “overculture” show at the most AMAZING gallery Postmasters NY, that just opened this week. Powhida’s practice is about helping us see how fucked up things are and to inspire us to strive to a world of justice, supporting (art) world which encourages criticality and  risks.  it’s basically the (art)world we all really want, yet too scared to bite the hand that feeds us.  I keep putting (art) like this, because the artworld is just a microscopism of the ‘real’ fucked up world. Every problem within the artworld is a problem within non-art-related society. Mainly because it’s the same shitty force that drives both: greed and value in the banal, and unethical under-valued/under-paid labour in order to make $$. When in actuality, there’s significant power in our dark-matter-ness if we realize it, together.

 

My focus  and definition on “progress” made it easy  for me to forget that you can turn around from traveling in a wrong direction, and return to the place where things last felt right. You can go back. Now I feel like I’m starting from the beginning with my personal art practice, and it felt like a failure. But I’m slowly accepting that sometimes going back is sometimes progress.

A few painful years has taught me 1 of the important lessons about life: you only become bulletproof when you refuse to disguise your injuries. The wounds are a gift: You learn how to accept help, and better yet, how to better give it. This in turn is another reason why I’m studying again, to emulate the best care & understanding I kind of know that the patient needs. Remember: if you need help. Ask for it. We can’t do it all alone. All the time.

Life is now somehow more precious and less. I’m now back to my humble beginnings: To share what you know.

So that’s part of what I’ve been quietly doing/working on with F/O/R/C/E, a collaboration with Paul Harrison and a few others – >  forcelectures.org

Don’t wait for a life disaster to be the thing that spurs you into action. Everything is fragile and you are more resilient than you think.

Screen Shot 2014-03-16 at 12.53.10

I want to work for something other than myself:

I’ve been keeping something secret for a while now. Mainly because I don’t want to jinx myself. And whilst it’s more-or-less official – I still have to pass ‘professional requirements’, which are things like CRB checks and the dreaded health-check. But – hopefully – if nothing bad happens & I pass all my ‘professional requirements’, in September I will be going back to university (as the Americans would say ‘med-school’ -sounds so cool) to study  Radiation Oncology. Yep.

This doesn’t mean that I’m giving up art, or indeed giving up on art. Quite the contrary, – if anything I believe this will become an extension of an already multi-disciplinary practice.  Art’s beauty lies in its ability to spread far-and-wide into other disciplines. Good art transcends something. I will still work as an Artist. I will still make art. I will still do commissions for clients – perhaps not as often as right now. But i’ll still be doing it – and I will still be teaching & working at SHU. Everything will be the same, except I will be studying on the side.  I’m always an artist first & foremost. Art is, and will always be, my passion!

Not many people know about my decision (something I decided  to commit to do just under a year ago now), and nearly everyone who I have told looks shocked (not in a good way). “Why? I don’t get it?” They all ask. (After what is Radiation Oncology?)

There’s many reasons for this. You might call it a quater life crisis. (it’s not but seems it).

After being told you might have Cancer, something fucks with your head. Like the rug gets pulled from under your feet. You might keep it together but you feel fragmented, you realize nothing at all is ever certain. You rationalise everything. You’re  completely in denial.  You’re strong – not only for yourself, but for your friends & family who are worried. You don’t make it a big thing, even though I think it’s something you just want to talk about all-the-time (or never speak of it?), just to make sense of it. But quiet doubt seems to consume part of your alone time.   The questions and the uncertainties seem endless.

Slowly I came to understand what could/might be/might have been happening. Part of this was writing on this blog to help let the pain out and I decided not to hide behind the mystery illness, but to go out into the world and live as best I could. In my spare time, I researched EVERYTHING about all different types of Lymphomas. The survival rates, how people discovered it, how it’s super tricky to diagnose, how it spreads, it’s genetic make-up, treatment plans, ect, ect.  After I read everything available on the first 10’s of pages on Google & many websites later, I started looking at other blood-cancers. I was fascinated. Curious. I wanted to know more. It became somewhat addictive.

I’m currently still having a bazillion tests, but the journey has already left its mark on me forever. I feel like a different person. It sounds cliched and it sounds weird, but I literally think and feel differently. Things I thought were important before seem trivial now. Before, my artist ego always wanted to be stroked. Now, I’m just happy that I’m doing what I love and meeting awesome talented people in the process. There’s no necessity to do a billion-things-at-once. It’s okay to smell the roses.  I have this whole new level of empathy that I never had before. Nearly every experience/emotion has been heightened. Which leads me on to reason number 2.

Since October last year, I have had 4 friends (or friends loved ones) diagnosed with Breast Cancer. My reaction to finding this news out, is completely different now than from a year & half ago, before all this crazy health stuff started with me. I don’t know why the reaction is different but now I feel like it’s personal – even though it’s so obviously not. It’s just a genetic systematic failure, that’s random or could be trigged by an environmental factor – but even that is in luck. 1  in every 3 of us will get cancer at some point in our lives.

Cancer nearly took my moms life in 2000, it nearly took my friend’s life, my friend’s moms life, the person down the street, on the bus, in the supermarket’s life – and i’ll be damned if it tries to take mine. This personal alignment has made me realize that I want to work for something other than myself, and i know i gots the skills to help. I want to help make cancer be no longer scary. Like getting chicken pox or something. I don’t want us to have this hurt. Because, the thing is, if caught in stage one, and even stage 2- They’re completely curable now! Which is awesome! But we often misread the early signs. (You gotta check-yo-self-before-you-wreck-yo-self!?)

Reason 3. In radiation Oncology it’s providing exceptional patient care without exception through developing & delivering radiation treatment plans & providing emotional & social/psychological support, it’s amazing research to cure or detect cancer early, it’s working with amazing advanced technologies & engineering technology. It’s working collaboratively, within a multi-disciplinary team of medical professionals, equally, doctors-nurses-nuclear physicists, ect – to create the best line of treatment to being cured (or to ease symptoms in palliative care cases).  I know that my background in art & technology will provide an interesting spin onto the research in this area. For example, 3D Printing (something we’ve been doing through the GRAVITY lecture series project) would be an awesome & much more easier/less stressful way to create moulds for patients for their treatments. BOOM! I have way more ideas. My over-all goal is that I want to go into the research side of it. It’s much easier to take what I learnt from art & apply it to oncology research, than vice-versea – but i’m super sure it will start to influence my work in someway.

The truth of the matter, however, is that when you go through some crazy dramatic life experience – such as this or something else. Things change. Even if you don’t want them to. When you live with this nagging small thought in the back of your mind that you might be dying, you feel like you deserve to spend the rest of your life on permanent vacation. And the reality is, you can’t. You must return to real life. I’ve been  finding it a bit difficult to go back. It’s like, how do you slip back into the ordinary world, and your ordinary routine and being your ordinary self when you don’t feel like yourself? My world view has been shifted, thus my whole line of perspective. It would be an untruth if i continued on being & making the exact same work.

I didn’t think I was going to get accepted onto an academic program this year. I thought that they would have made me get more science knowledge. So I was genuinely shocked when I got offers. I’m proud of myself for getting accepted to all 3 universities I had an interview at. I got interview invites at all 5 places I applied to. It’s all funded by the NHS so places are small. Once I got my unconditional offer from Sheffield, I withdrew from the last 2 interviews in Cardiff & London South Bank and accepted the S-Town. So here’s hoping that nothing bad happens between now and Sept & I pass my healthcheck – something I’m super nervous about since I’m still feeling really poorly.

I can’t explain my affirmation with this new area, other than it has poignant roots – and I know through it – if successful – I will be making a genuine difference. (The very thing that all I ever wanted to do was to make a difference). It’s going to be hard. It’s going to be less sexy. But I genuinely can’t wait for this new challenge. I want to work for something other than myself.  But remember guys, I’m still an artist – and will ALWAYS be an artist. Please don’t forget that.

It is to this end that I am committed to art but equally committed to creating/working on life-saving-research & I hope to make sure that  we work on developments which mean we will never loose someone young (prob up to about 80 years old) to cancer in the near future.

 

Photo on 27-03-2013 at 23.19