Where wonder reigns and hope exists

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Where wonder reigns and hope exists…

Every day I woke up on the train with a desire to feel the Sun. Instead, the day offered gray sky with hints of a snowstorm. The peaks of mountains were hidden, the distance made blurry by snow blowing hard outside but I felt irresistibly drawn to its other glories: the purity of the wind, the promise of imminent thunder, the morning whisper of birds. Fields of Canadian Goose. I never knew why the Canadian goose was a thing, now I know that there’s 1000s out there. Flying together in frigid weather.

As we made our way through the long curvy rail-roads of the North of Ontario into the Prairies of Manitoba and Saskatchewan, the scenery reminded me of Alaska as seen on movies like Into The Wild (spoiler, Alaska is one of the 7 states that I’m missing off my 50 visited states list). Eminent mountains, frozen lakes, endless fields and many sightings of wild animals. Out here, I didn’t take many photos. I was content to simply be in the presence of this majestic landscape, treating those moments with the weightiness and value they deserve.

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In every sight, wonder. In every step, curiosity. In every feeling, awe.

Imagine a scene — you’re standing next to thousands of migrating birds in a snowstorm with endless fields as a backdrop. Swans flutter in the distance like rising snowflakes. You feel part of something big, something that you’ve seen only in National Geographic.

What would you do if you find yourself in a moment like that? It takes time to sink in. We need to listen to what these moments are telling us. Standing in the snowstorm, I experienced nature’s intense power, while at the same time, I am reminded of its sublime beauty.

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It made me think about hope, about what hope is and what it is not.

Over the past few years, chronic illness/pain has grinded  me down just enough to feel on the true brink of hopelessness, a good few times. I never really understood hopelessness, until I was there. Where you’d take being dead for being alive, at any moment, because being alive like that doesn’t even feel like being alive. It’s worse than being alive because you’re suffering.  suffering in ways that are difficult to articulate.  It’s like being stuck in between being alive and dead.  A place of purgatory. But the thing about purgatory is that whilst you feel an emptiness. You don’t realize what a dark place you’re in until you get out and you can see again. Change happens. But it can happen literally overnight. Like it did for me. Even though we’re taught change usually comes over time.

Today the train ran 5.5 hours late. I’m not sure how, but I think it’s something to do with freight trains. This meant that we had a knock on effect on how little time we had in other stops. We had a quick stop with surprise wifi in Edmonton. It was just enough time and wifi to quickly post photos i had accumulated on instagram, and a brief update for Facebook and Twitter so my mom knew I was still alive.

As I write on Facebook, a FB memory appears that stops me in my tracks. It really brings it all back. A few years ago today, I was leaving JFK airport after a YOLO road trip. It was the end of summer after gaining a life-changing diagnosis, which i had spent mostly running away from. I still remember this moment with crystal clear precision, what I was wearing, the smells, the reactions. I can play back most of that summer memories like as if on tape. I left the USA thinking I might not ever make it back. I cried. I felt sorry for myself. I didn’t believe it was true.

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But friends banded together across Sandy Island, then the country… and then across the globe! sometimes I was throwing up too much or too weak to talk. But we kept going. Friends donated time, money, connections. Strangers sent mail, hundreds of photos. All in the hope to save my life or at least make me more comfortable and show support.

I told myself that if I ever get through this, that stuff would be different. There was still so much I still needed to see, so much time wasted, so much to do such as i wanna see my friends kids grow-up, and other friends grow in their confidence and careers and homes. I created a bucket list to help.

I wish I could tell you that the 5 years since have been easier. They haven’t. Even just under 3 weeks ago I was in the Emergency Room with suspected clots. Needles, needles, needles, so many needles, fevers, infections, a never-ending-headache, severe mucositis, so-much-pain, anti-nausea drugs that results in weeks of lost memories, teeth issues, corneal damage, a slate of other issues a little too graphic to write about, crazy painful out-of-nowhere leg cramps…

…all bumps along the road. But these past 5+ years have been really good to me (outside of the health stuff).

I do feel more and more slowly ‘normal’ with every year that passes, despite wanting it to come quicker, and gaining newer or older issues along the way, some weeks are really truly crippling bad – but the good out-weights the bad ones now. I’m not sure if I’ll ever get back to my old self. But maybe that’s just as well?

Because here’s the thing,  as Mark Brown said in his lecture on hope: hope cannot be transferred like a credit card balance. The hope that we feel for someone cannot substitute for the despair and grief and anger and sadness that they feel for themselves. (I learnt this the hard way. ) So, to make hope happen we must first understand what it is and secondly understand why it might be absent. To understand its absence we must understand what depletes it, what stunts it, what pours salt upon its roots and what blights it when and if it ever flowers.”

I never would have ever believed that people would have come together for me in the way that they did in my times of need.

I realise that sometimes we need these long quiet intervals when we can drift ourselves away a little bit from the current. To gain some perspective. To see how far we’ve come, because sometimes when you’re in the dark, it’s hard to see how strong the current has been. Plus it’s always the best feeling in the world is coming back.

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This morning as I sat looking up at the sky in the glass carriage, I saw uncountable stars. The wind in the valley murmurs at the approach of the sun and I find myself fixed on the single small spark of Venus as the stars silently surrender to the light. The first light of day finds my eye and we are connected.

Today, standing here with the mountains, the first light suddenly feels like the. first. light. and I breathe it in with both soul and senses. Here we can remake the world by understanding the world in all its messy, horrific, amazing glory.

A couple of years ago I was on a plane from NYC to the UK because I was dying.

Today I’m on day 3 of 4, on a train crossing the Canadian wilderness, a lil bit worse for wear (i need a shower pretty bad and i’m still harbouring all of my health issues) but I feel more alive than I have in a very long time.

( I Wrote this 3 days ago,I’m now in Seattle, WA – USA!)

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Love Is Love Is Love: Working To Make Things Better

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

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

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

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

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

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

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

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

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

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

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

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

Living and giving kindness is the best revenge. 

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

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

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

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

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

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

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

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

Well, I’m being schooled,  once again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The things I’ve learned from a broken mirror

Saving a life doesn’t change the world, but for that person, the world changes forever.

I’m right at the bittersweet end of my 3 years of  BSc Hons radiation-oncology school training. Assuming I pass the last few things, in 3 weeks I’ll be technically allowed, once my HCPC registration and license and indemnity insurance comes through, to plan, care for and treat people who have cancer with radiotherapy. Which is really scary. I will be responsible and liable by law for the safety of my patients.

And yet, the 3 years has gone past in a whirl-wind. It has been both long (no thanks to working clinically all through the summers) and extremely fast. Energizing and completely ball-breakingly fatiguing. A mixture of: I’m not ready to be qualified yet to I just want to do the job, already! Slowly ticking off endless assignment after endless assignment. Slowly being able to reflect upon how far we have come.

And now I write this post. With a cool raspberry lemonade in one hand, I stare out of the window with the sun in my eyes and feel kind of relaxed for the first time in a long time.

Doing this course was a massive risk for me.

I had nothing and everything to loose.

Here’s what I’ve learnt:

A few years ago (y’all know the story), my original life had become broken by ill-health and everything changed.  No one should ever underestimate the lack of quality of life living with horrible, endless, chronic pain and fatigue offers.  And as a result, my old life just didn’t fit in the same way anymore. So, after drawing people wanting to change the NHS to make it better using their health experiences, and this personal medical experience of mine – I decided to give up my planned life of being a full-time artist and retrain in healthcare (with the perspective of an artist). This was because I needed to get closure, to understand the human-body, to gain some control from this knowledge, and a routine – to try and ease the fatigue (that turned out to be a LOL – there’s no rest in healthcare): but most of all, my biggest motivator was  to try and make a difference and really care for others.

This was because the NHS was the first place I had been shown any real true kindness  from complete strangers when I was at my most weakest. I felt (& I feel it even more now than ever) this pit of gratitude at the bottom of my stomach when I think about the care I have been given & continue to receive – from everyone in the NHS, not just doctors & HCP but to the students, receptionists and porters, ect.

From my GP (the awesome Dr. Marco Pieri) who would say we’re friends. And in the beginning, I thought that saying we were friends was weird.  I was suspicious. It’s just his job? I knew nothing about him.  But as I grew older with him, and cried on him when I was at my lowest (i don’t ever cry in front of people), and moaned, and repeated the same endless complaints at him -much to his dismay – he built up this incredible knowledge about me as a person – not just what was wrong with me. He asks me about my work, my life in general and about my fears. He asks me what I want to do in regards to my care and he gives me lil’ prep talks (even unsolicited NHS job interview advise) by telling me to keep going and just to live life to the fullest (fo’ serious). He was one of the first people I told (by chance) that I got this awesome fully-funded PhD scholarship. He stopped me from jumping around from random GP to GP, because I didn’t understand the importance of continuity in care at the time. I feel like he intrinsically cares – not just for my wellbeing – but for the whole population of Doncaster after discussions with him on his passion for improving life expectancy & outcomes for the Donx to meet the rest of the population (thus his role as a clinical lead in the Doncaster CCG).

It turns out that he is in fact both Physician and detective, and through time, he also became both healer & friend. And through experiencing a lot of his kindness, his humor, his knowledge, his time & care – I felt like I needed to return it.  I wanted to be that person he was for me – for my patients; to make them feel cared for and valued. To not feel insignificant when you’re at your most vulnerable.

What I’ve learnt is that patients have been my best teachers, but some of my lessons have been painful.

I  have learnt from their  incredibly life affirming stories of hope, humor, achievement and tragedy and heartbreak. There was a woman whose volunteer hospital transport driver turned out to be her long-lost niece – found and reunited together through daily drives to & from radiotherapy treatment. I’ve treated gold-medal winners from the Olympics 50 years ago, pilots, magazine publishers. I’ve seen people go home and back with nothing but the clothes on their back- for 7 weeks, heard stories of amazing neighbours and learnt a lot about people’s pets. I’ve heard horrific stories that just needed to be told and heard – of death, loss, and abuse. Every day is a day where I take at least someone home in my head. Some fade away, eventually. Though 3 years on – there’s some patients who are etched onto my mind and I don’t know why some really stay with you.  I stopped checking up on them post-treatment because quite a few have died since- and it makes me feel incredibly sad. These people who we often just shared 2 or 3 weeks together at 10 mins + at a time become significant to me. And  I hope I never loose this into qualification.

 

It will be weird not being with #teamleeds, every day; My friends who we’ve gone through and seen a lot together. These stories bound us together. They’re like brothers and sisters now. I imagine this is kind of how joining the army feels, but instead it’s a healthcare course.  It will be weird not joining in on a random Facebook conversation, not having to panic about the endless deadlines and  unclear learning objectives. My closest friends (most of them younger than me) on the course have taught me a lot about growing up. I’ve managed to have a second ‘coming of age’ experience through being good friends in their journey. We’ve travelled when we could together, hosted parties and feasts of food. Shared and supported each other through tragedies, deadlines, successes and the crazy profound things life throws at you. I am completely in awe of these now 21 year olds who are mature before their years. And I think about how their strength is true testament to how I’ve managed to get here – 3 years on. At the beginning of the course, we said that we would drag each other through to the very bittersweet end. And here we are, 3 weeks to go, still dragging each other. I’m pretty sure I wouldn’t be here now if it wasn’t for them, egging us on.

Then there is the staff at the place where I’ve trained, they have been incredible. They’re passionate about education and patient care and safety. They love radiotherapy. They’ve shown me time, enthusiasm and exactly what being a compassionate healthcare professional should look like. I’ve learnt how to ask questions, without being too leading. I’ve learnt to hear for things not actually said, but implied, by patients so that I know if they need more extra support. I feel incredibly indebted to them for their knowledge and time (and patience!). I hope that we stay friends at the end because they’re such great fun people. And I can’t thank my tutors enough for all of their guidance and knowledge in helping me shape me as a healthcare professional!

What I’ve learnt in my Healthcare education (both officially and as a patient) is that everyone in the NHS has a reason to do what they do: It’s almost never about money or our quality of life. It’s because we can make a difference. All any of us ever want to do is to make other people’s lives better. Sometimes it’s life-changing, sometimes it’s something much simpler.

Sometimes things don’t work the way we should. The system isn’t perfect. Neither are the people in it. But it is fundamentally decent and good and whole. That’s why I am absolutely committed to the principles, to the ideals of the NHS. I think it’s just about the best thing this country has ever achieved. It is remarkably robust, but the pressures facing it are immense, and there are few easy solutions. But we – the people of the NHS – ALL STAFF- are absolutely committed to it.

What I’ll always remember from my education in radiotherapy – and that crazy 3 years of unpaid labour – will be the stories that made these people into NHS.

Being a radiotherapy student has given me a lot of perspective and new skills I never knew I could do.  I’Ve learnt that whenever you can’t think of something to say in a conversation, ask people questions instead. Even if you’re next to a man who collects pre-Seventies screws and bolts, you will probably never have another opportunity to find out so much about pre-Seventies screws and bolts, and you never know when it will be useful.

Life divides into AMAZING ENJOYABLE TIMES and APPALLING EXPERIENCES THAT WILL MAKE FUTURE AMAZING ANECDOTES.

And life can be incredibly short. So see as many sunrises and sunsets as you can. Run across roads to smell fat roses. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it. Think of yourself as a silver rocket – use loud music as your fuel; books like maps and co-ordinates for how to get there. Host extravagantly, love constantly, dance in comfortable shoes,  and never, ever start smoking.

Thank you to the whole of the NHS for your love, and kindness, and education. It turns out studying Radiotherapy turned out to be WAY more than just a degree at the end. 

I have learnt, through pain,  that I am more than my pain, more than what was built & burned, more than all I’ve lost. You will get to build again. And if you’re lucky, you’ll get to share this adventure with the people who’ve helped you.   Remember it ain’t always about where you start, but it’s about where you’re going and end up.

To the last 3 weeks!

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1 year older, Casting Lines.

Tomorrow is my birthday. I’m getting old. I found my 10th grey hair today (yes I’m counting) But I’m still here. I’m still alive.  And it amazes me. But there’s a lot I don’t know. And there’s a lot I’m still learning. I’ll be Nickel on the periodic table. Nickel is a silvery white metal that takes on a high polish. It is hard, malleable, ductile, somewhat ferromagnetic, and a fair conductor of heat and electricity. Ni-64 is used for the production of Cu-64 which is used in radioimmunotherapy. Ni-61 can be used for the production of the PET radioisotope Cu-61. Which puts me in good company.

But turning a different number has less significance than having your first child or losing a family member. Those are real Life milestones.

When I was younger, I was worried I was going to be behind. I was always in hurry to do everything. Most people get a foundation degree before art school. I managed to convince art schools I didn’t need one. Then I mixed my masters with my undergraduate degree & completed them at the same time – it made me one of the youngest people in the UK with an art BA & MA at the time (First class, too). I went to summer camp as soon as I was allowed to apply for a J1 work visa. I went to NYC as soon as I was allowed to rent a hotel room alone (and worked 2 jobs to pay for it). Now I’m so behind my peers. And I want to slow down time. I sometimes wish maybe I should have taken my time & not rushed things. Smelled the roses, as they say. But There’s never enough time.  And now I’m in a place where I feel like I’m living on extra time I wasn’t expecting — which is pretty sweet. 

When I look at my photos of 2015 I think of the juxtaposition of beautiful scenery with private pain. Emerging from this exacting year, I am grateful (but still pissed off & frustrated with having pain) for the suffering because of how much it has taught me – and continues to do so, and how it made me even more compassionate to others. The kind of tumult I’m in is both a physical and an internal one, and it doesn’t detract from my gratitude that I am able to live a life involving new places, meet new people, laugh with friends, care for people in need, learn new stuff, see delightful sights and eat beautiful meals (most of which are cooked by my mom). It’s taught me that it’s always possible to find wonder in the world despite things being tough, because the world is full of wonderful things and people. These fleeting moments of awe, strung together with acts of kindness, kept me afloat.

I can’t help but feel severely indebted to everyone who’s helped me along my journey, especially in my search for a resolution. For all those people who ‘took a chance’ on me. For everyone who has replied to my late emails or who’ve reached out to me. For all my friends who’ve been right beside me, whether it be when I’m having a good time or when I’m tucked into my bed, drenched in my own cold sweat .

Who knows what 2016 will bring, but as my last day as 27 winds to a close I have learnt more, dug deeper, and thinking of my next year ahead. I want to take the an opportunity to redefine many things as well as to recapture certain values and certain things that are potentially important for me and for people in general…The importance of giving back is starting to be theme for me. I want to be generous to the people who have helped me out. I want to make sure not to ‘ghost’ on people either. In order to be credible, you must be authentic and true. I’m starting to write my proposal for my PhD in creative practices as a means of moving health research evidence and interventions into everyday practice. I’ve already applied for 2 of my first radiotherapy posts (probs. won’t get interview, like). Moderation in everything. Don’t be an asshole and don’t be a pushover. Change is the only constant in Life. It moves forward regardless of how hard you resist. Be kind. Be empathetic. Take care of your parents. Cultivate relationships with those that matter, those that genuinely care about you. Embrace them with your whole heart.

My birthday’s tomorrow, but help me celebrate since I’ll be spending the whole weekend revising. Donate time/things/currency to Yorkshire Cancer Research , Doncaster Cancer Detection Trust and/or another cause that’s close to your heart! Feeling blessed and lucky to have such great friends and family.

As for Birthday plans after my exam on Monday: Heading straight to laser quest, drinks, movies & some good ol’ pho in Sheffield. It’s going to be a birthday week.

2015: thanks for giving me what I needed and teaching me what I didn’t understand. You were challenging & profound.

Hoping for a 2016 where we open the doors wider and take care of each another

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I am hoping for 2016 to be a year where we open the doors wider and take care of each another

Susan Sontag wrote in her “Illness as metaphor” (1978) essay ,

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. “

I’ve found myself asking myself, “Smizz, how do you get from here to there? ” I’ve spent the last few years trying to find my way back to the kingdom of the well. 2015 was all about screwing up maps, getting really, really lost. Like I’ve been using Bing maps instead of google maps.  I feel like my good-healthy passport needs renewing.

I get good days, even weeks, only to be knocked down by by more complications, more intense symptoms.  Life wasn’t going my way, but that’s something I’ve been learning to get used to and it happens to us all. I definitely cope better now,  but what I can’t get used to is the feeling of being broken.

And what’s scary is that most of this is happening to us all, in some shape or form: depression, low-self-esteem, a loved one being sick, unemployment, abuse, bullying, war. ect. At some point, we all loose our footing. And in the wake of trauma, sure footing can be hard to find.

When all this started, and I thought I was going to loose my life,  I was full of regret.

I had a good life –  But  why did I spend so much time on Facebook ? There was so much more I wanted to do, places I was worried I was never going to see. I always wanted to have a border collie puppy. I always wanted to own an american fridge with an ice maker (not sure why, I don’t even like ice in my drinks). But here i was thinking I’d never have any of that. And what about my artwork, my art-life? I had dedicated nearly 7 years of my life to what I was doing. And I had left it behind, without saying a word to most people except close friends.

I wrote a will. I settled my affairs – they told me to. And i was terrified because I’m an artist – and i was seeing a future where if I go blind, I might not get to do my work anymore.
But I’m alive. I’m alive! And I’ve learnt that there’s a big difference between surviving and living.

 

So in 2013, I was slumped over with fatigue. I barely got out of bed. But what I do realized then was that I couldn’t just keep living my same old life anymore because it just didn’t fit anymore. The stakes had changed. My life view was flipped. All that stuff i thought was important, turned out not to be that important.

In 5 months time, I HOPEFULLY will be a qualified radiotherapist.  I’ve spent the past 2 years being pulled through my course by my amazing friends and family whilst managing horrible, horrible side-effects/symptoms?.  I will be qualified to deliver radiotherapy treatments, create treatment plans,  innovate and care  for my patients and their carers going through the cancer pathway.  And I’m super excited and shit-scared. I took on this course for a number of reasons: One was to help me cope & have some understanding of the human body, and genetics and control, 2 was to give back to the NHS and to emulate the great care I was given & to irradicate the poor care I saw too. But ultimately it was to help make the difference I want to see, to make the pathway better for others. To enhance and help empower patients and their carers narratives. Because if there’s one thing I’ve learnt is when you’re sick – you feel vulnerable and voiceless.

And at first, this change was really, really hard. I’ve questioned my decision maybe a 1000 times. But it still feels right, even when I have to do 100 pointless academic tasks and I miss having free days to make and draw things I want to make.  But together with my friends we organized the (2014 & 2015) first student led Raditation oncology conference, I made the first radiotherapy patient information app, got a drawing published in journal of medical imaging and radiation sciences, won an award for my app, and presented at the international  Design4health conference, did some clinical experience in North America,  and went viral with this blog post about what we do in radiotherapy,  raised £850 for Doncaster Cancer Detection Trust and some more. All through combining art and radiation practice and empathy. All in 2015.

If you asked me 5 years ago if I saw myself here – the answer would have been – what’s radiotherapy? And errr nO?! If you asked me at the beginning of my course if I would be in 3rd year now, I wouldn’t have been so sure. But now here i am, trying to adapt healthcare research with creative methodologies.

l’ve experienced chronic pain and fatigue. I realized how debilitating it can be, and how rarely we take the time to understand it in others.  But this lesson is still being learnt. The experience is humbling and, more than anything, made me much more aware of – and empathetic to – the hurt that we ignore.

This, in particular, is my motivation going into 2016. My resolution (although I hate the word “resolution”; it sounds flimsy and self-obsessed) is to take more time recognizing the pain in others and offering solace whenever possible. I aim to keep the dialogue open with all of you, whether online or in-person. I want us to be open, and warm, even in the face of the unknown. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it – and one person CAN change the world.

2016 maybe full of joy for you. It maybe full of challenges. It’ll probably be full of both. However it all plays out, remember that we have each other. Don’t wait to be asked for help; you’re already being beckoned.

I started 2015 feeling lost in transition, the pain was really, really grinding me down. I cried like twice on clinical placement because I felt behind & that I’ve got a lot to loose, I gave up my art life. There’s no roadmap to picking up the pieces of a broken life.  So I’ve been drawing my own roadmap, and somewhere along the way, I’ve started to feel like I’m living again with the help of all of YOU – my friends.  I’ve visited 5 new countries this year. I chased the Northern Lights with my friends, we rode under Niagra Falls, we drank thrugh the worst icelandic storm of 30 years. And as I  have watched the ocean many times this year, it reminded that the suns set, but it will  rise again and everything keeps moving. But we don’t get forever. And that’s ok. We just have to make sure the stuff that counts, really fucking counts.

 

I hope that 2016 will hopefully bring me some more closure, and I’m hoping for less headahce, much less fatigue, more adventures, taking more photographs, seeing friends, better email action, laughter, fun, love and hope. And finishing & passing my degree without a nervous breakdown (lol) . And hopefully a job offer, if I’m lucky. You never know what the road has planned though.

Happy New Year friends,

With so much gratitude for you for getting me here

Unconditional love, lets make the world a better place in 2016!

Your good friend Smizz x

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

 

Smizz’s top movies from 2015

So each year I do my top 10 movies. 2015 has been a great year for females. So many strong female-led movies. And it’s about time!

I love going to the movies, i love the anticipation of waiting to see a movie. However, this year I didn’t get much opportunity to see as many arthouse flicks as I would have liked, and this top 10 list reflects that. Now, each movie in my top 10 has a place – for it’s individual reason. So it might not be the *GREATEST* movie of the year, but it certainly achieved something for me in an area such as character development, or dialogue, or cinematography. ect. Sooo wasting no more time.

 

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10.) Mad Max: Fury Road.  Unhinged, high-octane vehicular mayhem. A tough-as-nails postapocalyptic feminist heroine bitingly portrayed by Charlize Theron. (And hey, Tom Hardy was pretty good too as the titular hero.) A crazed ride into a monumental, lightning-etched storm with the pedal all the way to the metal while a war boy howls “Oh, what a day … what a lovely day!” Unforgettable movie moments are made of this. And to think the picture was made by a director in his late 60s. George Miller, you are the (aged) man for the ages.

 

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9.) Carol. A breath-takingly beautiful cinematic journey of a forbidden love. Filmed as if an Edward Hopper painting had sprung to life, its mood washes over you in an evocative mix of opulence and despair as it dizzyingly dances with the forbidden. Some of the best scenes are filmed from the perspective of a person looking through a car window. 2015’s best romance.

 

 

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8.) Tangerine. This movie feels the most 2015. Shot entirely on iPhones and with a budget that wouldn’t cover cab fares on a blockbuster, Sean S. Baker’s indie dramedy makes virtue of necessity. Compelling filmmaking, too, in this Sundance sensation about transgendered sex workers, a pimp, cabbie and angry mother-in-law in lowdown L.A. Doing whatever it takes to make the invisible, visible.

 

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7.) JOY: Joy can be viewed as a modern day rags-to-riches fairytale. It’s Cinderella without the prince. In a way, that’s part of the film’s charm. Sure, there’s preposterous dialogue, but there are also so many electric sequences that made me lean in, smile, & care about a mop. It does give hope showing that no matter how one does struggle in life miracles of success are possible, so don’t read all the bad reviews and assume otherwise.

 

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6.) Steve Jobs. Side-stepping arguements about the accuracy of the biopic, the real achievement here is making cinema out of material that isn’t even a stage play as much as very expensive radio: a battery of dialogue, unbroken by reflective pauses or even, on occasion, the actors drawing breath. The staginess of the movie is its greatest benefit, allowing the characters and the dialogue to shine. Boyle, however, is not a director to be contained in dry rooms, and he allows this theatrical drama to move, via music and editing, into the realm of real cinema. It may be stagey, but make no mistake, it crackles and moves like a motherfucker.

 

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5.) Spy. Now i love a good comedy, but great comedies are hard to come by these days – and I feel like there’s less and less comedies being made due to their hard task. Spy makes making seemless comedies look super easy to make. Feig keeps his Spy machinery cranking so smoothly that nothing said or done feels as outrageous as, in fact, it is. McCarthy is the star of the film, but her willingness to let her fellow actors shine when an opportunity knocks to give the audience a belly-laugh is clear, and it’s the undeniable strength of the supporting cast that makes Spy a strong a film.

 

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4.) AMY. I was taken aback by how well an thoughtful this documentary was made. Watching Kapadia’s film, it is possible to see how badly she was let down by the male figures closest to her. it’s the music that suddenly feels monumental because somewhere in that dark stream of rolling notes and rumbling minors, we can hear the eternal soul of human sadness turned, for a brief moment, into something undeniably beautiful.

 

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3.) Inside Out. It’s an emotional rollercoaster, and it’s one of pixar’s finest. It takes a long walk down an infinite pier of personal identity in,  an animated tour of developmental psychology that captures the pain of growing up using primary colours and Amy Poehler’s voice.  As for visual style, it’s dazzling, flouting CGI’s tendency to photorealism in favour of overt cartoonishness in a 1950s retro vein, together with a refined exploration of light: the emotions are composed of fibrous bundles of luminescence.

 

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2.) 45 Years. An inner drama, taking place inside the characters. There are no heroes or villains in this film. Shot with loving attention to the silent vistas of the English countryside, 45 Years conveys a sense of isolation, of two people being together yet growing apart, a dream that has been shattered, and a lifetime of security undermined by a moment of doubt. It is a thorny subject but beautifully told with gentleness and love. Plus 2 outstounding performances.

 

 

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1.) The Martian. I actually can’t stop thinking about this movie. A fan of the book, I wasn’t sure how the motion picture would compare, and indeed make the main character-likeable. But yeah, there’s flaws. But there was something about The Martian that captured the 12 year old in me. Damon makes the most of this “me time”, engaging our interest, winning our sympathy and teasing our anxieties about his perilous predicament. Whilst the most surprisingly element about this movie was the screenplay.  What makes the movie unique to me was Watney’s optimistic point of view. He believes that he isn’t going to die on Mars, and this transforms this rather depressing situation into something comical instead, engaging us with many self-help survivalist discoveries. But when you really think about it, this is a very personal film about some people coming together to save somebody. That’s it. And in today’s world, it’s nice to hear an story about people coming together to save one of their own. It might take all the romance out of Mars, but substitutes in its place science, cooperation, and human perseverance. PS: You should read the book too – and check out the author’s videos on how everything is correct including the astrophysics!

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/

 

2014 moments: Hopes for 2015

My mom always says that on the first of the new year, you should do a little bit of everything good: small bits of good habits you want to carry through into the new year.

That’s how I’ve always tried to start every first day of the year, no matter where in the world I am.

This year, I am doing a little of the same here: going on (very) short runs, finishing unfinished books, starting a new one, do some writing, do some work, trying to be creative and challenge the boundaries. And then, because I’ll be in Lisbon, Portugal in a few days: I’m going to listen to some good music, go to galleries, eat whatever delightful food there is to wonder upon to and take a walk to explore and learn more about a new country, a new city and all it’s neighborhoods.

It allows for a little reflection, a little resetting, and a little bit of conscious forward-thinking about how you should spend the rest of the year.

That’s a little bit of everything good.

—->

I am, however, a kid of tradition (or superstitious – depends how you look at it). And if I find something that works – I go with it. i can’t take chances changing it.  Each year I sort of blaze over the best highlights, and then wish for the things I’d like to happen/achieve in 2015. It’s a good way to hold myself accountable – and additionally – i think it works 😉

2014 moments:

It was amazing. And bittersweet. And hardwork but full of laughs and adventures too.

Jan:

I sat my first ever exams in about 8 years. I can’t even remember how to do exams, but I passed all with Firsts. That was a trip!

My Slovakian Friends, Rado & Katka who I worked with for 2 years in the USA, came to live with us for a year! Exciting!

I did some cool work for TalkTalk

Gave a talk on #RONCrg twitter group that I run & recieved some great feedback.

Got Shep – the awesome German Shephard doggie!

Feb:

I started running & going to Row-Fit, which was really fun!

Found a new house for all of us to move into.

March:

Drew the International NHS Health Expo in Manchester, that was so rad!

Drew more stuff for TalkTalk

Got the HEADACHE from hell (which I still have as I type this).

April:

Had my first ever A&E admission [for worst headache ever], nothing like spending a night on an Emergency decision ward to make you appreciate the affects of life on people.

Went to NYC – got to see my friends exhibition, privately, and we got so drunk in the depths of Bushwick. I ended up seeing my first Brooklyn Bridge Sunrise (drunk), and worst hangover to date. I also had to take a plane to Vegas, hungover. So a bunch of firsts. It rained so hard that trip that I had to throw away my running sneakers.

May:

Saw my mom get married! Yay!

Went to Vegas from NYC – met with my great USA friend, Leah, and we had LOTS of including sneaking into pools and beach-pools that we weren’t supposed to & I accidently tipped a pool-boy $20. Call me generous.

Got Shingles – which I thought were bedbugs from NYC/Vegas – duh.

Sat some more exams which I passed pretty awesomely if I do say so myself.

June:

DREW THE AMAZING SHEFFIELD DOC/FEST!!!

More clinical placement antics. Really don’t remember anything of any value here. Just work, work, work.

July:

Got hit by a car & was pretty traumatised by it.

Was in our first ever HUGE house fire.

Started skateboarding again because my bike was fucked up.

Spent the last weeks of July trying to desperately do a whole years worth of ePortfolio in 6 weeks total. (I won’t be doing that again!)

Designed a website for my friend and her exhibition at YorkshireSculpturePark

August:

Passed palliative case discussion.

Got a super dope mark (SURPRISINGLY) for ePortfolio

Got mega cheap flights to USA – So went back to NYC & saw all my friends at Camp in New Hampshire!

Got Shingles AGAIN.

Got another old-puppy – Finnley the Border Collie!

September:

Was made a recluse because of Shingles.

Finished clinical for a bit – went back to uni. Moved back to Sheffield properly (rather than living in Leeds)

Did my first Pecha Kucha Talk! YAY!

Had an awesome house party!

Gemma left for New Zealand.

October:

Drew TEDXSalford

Drew stuff for University of Derby

Had an awesome Halloween pumpkin carving party at Charlottes!

WE ORGANIZED & HOSTED RAD conference successfully – YAY!

November:

Drew stuff for Uni of Sheff

Drew TEDXSheff

Had the bestest Thanksgiving!

December:

Went to Copenhagen & saw so much awesomely designed stuff!

Had an awesome Christmas!

HOPES FOR 2015

Here is my new list. It’s pretty much the same as last year with some re-thoughts. But I can’t stress enough my main goals are to:
STUDY-HARDER
BE MORE MOTIVATED
NOT WASTE TIME
WORK HARD (ER)
MAKE A DIFFERENCE (IN A POSITIVE WAY, SOME HOW)
MAKE TIME FOR FRIENDS
HELP OTHERS
HAVE MORE FUN
ADVENTURE
WHAT I WISH WISH WISH for in 2015: Keeping the same values/wishes/hopes/resolutions as last year:
  1. That my mom, bro, nan and friends are all super happy, heathy and that NO ONE DIES! Including ME! But I would die instead of the above people if it has to come down to that.
  2. Last year, and the year before that I asked for a job  that I enjoyed. I ended up getting at lots of cool small ones!  So thank you 2013 & 2014 for amazing job years;  PLEASE New Year help me find these golden eggs of opportunity and help me reach my potential. Help me make GREAT/BETTER impressions at the places where I currently work. Let me move small mountains. Please find extra work to fund me through uni. Please find me more amazing opportunities. Let me be BETTER. WORK HARDER. Even more so, PLEASE provide me with opportunities to help others and to make a positive difference! Esp. in radiotherapy.
  3. Make extra time for friends, make sure i actually see friends who live else where. Don’t let money define this.
  4. This year I need to be more motivated. Be more time-focused. Less TV and more drawing. More studying less sleeping.  This is also very, very do-able if I just organize my priorities too! I need to make more great art-works rather than just research and develop ideas that never get shown. I need to remember the stuff I learn in class! I need to be more confident in clinical.
  5. I really really hope that i can make a positive difference this year, help others that need it, and make the world a place i’m proud to live in.
  6. More teaching opportunities PLEASE! This is a must if i want a chance at achieving number 5! too
  7. I would like to interact with people better, so I can communicate effectively and be wayyy more better and likeable esp for clinical placement.
  8. As with any artist, any exhibition/residential/print opportunities no matter how small or little they may seem all adds to the endless cannon of critical thinking and art practice!
  9. I need to become more motivated to learn my material… I can only make the difference I want to make if I am disciplined enough to sit down and dedicate the time to master my craft. Please give me the strength, the focus and the motivation – and mostly the energy to do this!
  10. I just want to feel normal again. Like not have bone ache, or nightsweats, where i could get up in the morning and not feel insanely hungover despite not actually touched alcohol in weeks. I want to not feel SUPER tired for NO reason anymore. I want to be fit, i want to be healthy again, i just want my body and health back from circa 2006 (that was a good year ha!) I’d even take health back from circa 2010/early 2011.
  11. I’d like to take up running, agaaaaiiiinnnn. By the end of the year I want to run 10K – like a fit person.
  12. I know I can’t travel like I have done previous years, but I would absolutely love to visit USA again & do lots of small local EU travelling like to Italy!

Thanks 2014 for a dope year, 2015 I know you’ve got my back. Here’s to hard-work, game changing, trying to stay focused, fighting against the ordinary daily events, challenges and finding ways or re-focusing when things might not work out exactly as we might want them to. TO FRIENDSHIP yo!

Thank you, thank you, thank you.