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!

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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/

 

A World of Difference

Everything begins somewhere.

 

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

 

 

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

 

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

 

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

 

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

 

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

 

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

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

 

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

 

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

 

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

 

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

Thank you for making a world of difference.

 

 

 

 

#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

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@wlasinclair

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

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@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

 

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SMILE! By @thebestjoan

 

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Think about the wider public health and wellbeing! @damian_roland

 

 

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@sugarpuffs66

 

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More smiles & hello my name is by @bexmoxon