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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In search of a resolution

Before i embarked on my North American clinical & holiday experience, my GP suggested that maybe I should talk to someone who has the time to listen — about everything — from my crazy medical journey to my past dotted with potential traumas. So after a few days of being back in the UK, I saw that recommended counsellor to talk about my nearing 4-5 year medical journey.

I wasn’t best pleased about the idea. It felt like a personal failure. I wasn’t even sure what we’d even talk about — and I certainly wasn’t pleased about the potential things he might make me do – a group session of our feelings perhaps, keeping diaries, ect? Really not Smizz style. But I duly went along because I’ll do anything to feel better, or cope better, and if my nearly upcoming 2 year long headache is something to do with a personal-trauma then let’s get it sorted.

But I was pleasantly surprised. VERY surprised.  I can’t explain how nice it was to just talk to someone impartial who listened compassionately – who was really helpful. He was consistently open. And I don’t think I’ve ever had someone so good at listening, listen to me before. I spoke about how hard it’s been. How misunderstood  & alone I feel in the (health) system. The constant feeling like my time is limited. How I want to make a positive difference. How i feel like a hindrance – to friends, and the NHS. How it’s completely changed my life upside down, inside out, and all the big adjustments I’ve had to make to keep living life as normally as i can. how it affects my work, my relationships, my social time. How it’s hard to live life normally, when it’s no longer my normal life. He made lots of suggestions – including that I should continue to live my life to the fullest.  I left feeling a lil bit lighter. With more food for thought. Because I’ve been dealing with everything alone for some time now, I’ve read A LOT of stuff out there on coping with life adjustments, chronic illnesses, chronic fatigue & pain – ect, ect. And I’ve adapted A LOT of these into my life, so I’m coping well, so I don’t have to go back unless I want to go back and chat – whenever – — since I’m already doing what some of the services offer – and have an awesome support system of friends & fam (who read my whiney long emails and blog posts and tweets). It was especially nice when he said I should be proud for how far i’ve come & how i’ve coped. And that feels weird that I needed to be praised for it — but I guess I needed my struggle to be acknowledged on some level – to feel like I’ve been heard & that it’s been really difficult.

I tell the world wide web about this experience because i know I put off ever going. But I’d recommend and encourage anyone going through something that has changed your life, a struggle- current – ongoing – or past that has changed you, something that’s not resolved itself, if you’re feeling really low, alone, need someone to listen to you – you should go (it’s free, obvs – and it’s really not like you’d expect it be. I genuinely can’t say how good it was) You’re not alone . The cancer of so many struggles is feeling like you need to deal with it in isolation. & it’s difficult because certain (medical) experiences are all uniquely personal. But let others help carry your burden. I know that I’m super lucky because I’ve always got friends and fam who will help me carry the burden – but there’s always more – there’s always stuff there that you didn’t know was there.

So I was up this morning, watching this sunrise — thinking.

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There’s a lot I don’t know, there’s a lot I’m still learning. When I think I’m letting go, I find that my body its still burning. 
And I’m still held down, and Its still got me living in the past. Come on and pick me up. Someone help me clear this wreckage from the blast. But i’m alive. & I don’t need a witness to know that I survived. I’m not looking for forgiveness but I need a light in the dark to search for a resolution.

Sometimes I feel like I’ve gone from 0 to 100. I’m going to try and start rock climbing (once i get my dodgy foot looked at) – i’m back on my fixie and I’ve told myself — I’m going to go a search for the Northern Lights over this next year.  I really want to use this crazy medical/life experience to make the pathways so much better for future patients / service users. We should see every act as a contribution to a finite set of acts, all building to a contribution of goodness to the world. We should not delay working on the things that make us feel alive in the world, and help the world feel alive. We spend so little time trying to make the most out of the time we get. Your time is too valuable to let a moment go to waste. Steal as much life as you can out of each day

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!

Constantly Lucky: 26 years

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hoping for 2015 to be a year where we open the doors wider & take care of one another

Whoa, 2014. You were such a supremely bittersweet year. Full of opportunities that I am endlessly thankful for and hardships that are unspeakable. You’ve made me even more grateful for every moment of grace and love that we get.

I saw my mom get married, my bro move out for the first time & find love. I lost 2 amazing friends to disease & suicide. I’m part-time raising two young cute dogs.

I’ve had Shingles like 2/3 times, 1 constant long 9 month headache & half a numb face, got run over on my bike & damaged my ribs, broke a bone in my hand skateboarding & was in my first ever massive house fire – where my friends and I helped to save a woman (who was a doctor) trapped in the kitchen (she started the fire, whoopz). I got so many emails from strangers around the world offering support and advise and tips on health-stuff.

I raised about £700 in total this year for various charities & donated over £200 to support others. I worked out earlier this week that I’ve written way over 80,000 words on cancer stuff this year including my ePortfolio. Which is kind of a lot. Endless assessments and 20 weeks of clinical placement (feels like so much more though) & maintained my freelance work of live drawing countless of amazing  & awesome talks & events, website design and teaching.

I moved house twice. Slept literally for some weeks, and weekends at a time. I tried rowing, running more, hiking and learning italian this year. All of which failed miserably. Or, every time i got somewhere, an injury or illness would happen. I’ve had 5 christmas parties, 2 Thanksgivings, 4 massive house-parties, 2 international flights, and visited 1 new country this year. I helped to organize the first student led- conference on Radiotherapy & Oncology in the UK & I got to do my own  Pecha Kutcha Talk instead of just drawing someone elses talk, Yay!

I did all of this (and some more) all whilst feeling really, really run-down, extremely fatigued & in pain.  I often find it hard to keep up with myself.  I look at the above sentences and just sit back and say “Wooooweeeeee!”

After all that, I’m going to share with you what I’ve learnt from this year:

I learned that a good way to force yourself to make more personal work is to travel. So I did.

I road tripped around Nevada with friends in a convertible like we were start-up founders. I explored the peaks of the peak district. I rode bikes through Brooklyn streets, and cruised the lakes of New Hampshire. I’ve taken countless bus trips across asphalted highways in many countries. I lived for half the year in a new city Leeds, traveled miles of sidewalks through Paris, Copenhagen and London, and danced in NY ’til sunrise.

I learned that focusing on things other than work, such as health and relationships, actually makes your work and life 500 times better. I learned to appreciate my good friends, and have learned to cherish good friend time over acquaintance time.

We talk a lot about what it means to be busy — both with work and life. But how much do we know about what it means to just be? To what end must we drudge on about our lives in hopes of becoming happy and healthy if only we just work hard enough to earn it? And not just in monetary currency do I mean that we work hard, but in social currency as well.  I’m slowly learning that a relationship is the most valuable gift we can ever expect to have in this life, and all kinds of relationships. From friendship, to relative, to love to relationships with strangers. How we can help one another?

Being sick has taught me that great relationships are about what you give to it that matters more than what you take. Because my friends and family have given more support to me in ways they probably don’t know how much it means to me.

We can overwork ourselves to the point of being absent from relationships – of all kinds, love, friendship – work. Thereby weakening it, or we can become lazy and miss the blessing that comes from tending to its daily needs. There is a great balance that hangs in the air between one person and another and it’s often a fight to find time just to just to stand still. The challenge here-to lies in making time for quality time. In true form – money is circulated – time is spent. You can never get your time back.  2014 reminds me that I need this to be a constant lesson to be learnt – in 2015 I hope to be able to manage my time better so that it’s spent and invested in wisely.

Additionally I’ve also learnt that time is already a tough customer, but it becomes torturous when you start measuring how much of it maybe left;  and  when you start measuring yourself to others by it. DON’T – DO – THIS.

I’ve learnt that words are often the most explicit example of clear thinking. (Alongside some drawings 😉 )

As someone who is obsessed with type – it’s hard to get away from being beaten over the head with typefaces, grids, and rules in the beginning – trying to learn it all —and rightfully so—but typography can act as a smoke screen. There is so much to learn about the letters that it’s easy to forget about the words.  Ugly words in beautiful typefaces are still pretty dumb.  I then fell into something I’m still attempting to understand: words are the most explicit example of clear thinking. We should tell people how thankful we are for them and the things they do, not only through gestures, but also words.

Life is a set of nested envelopes—the seed of you is held in the mind, which is in your body, which is encased in your family, your relations, workplace, society, ect.

But ultimately, if there’s anything I’ve learnt – is that 1. I love a cliche and 2) it’s this cliche lesson; The greatest part of life is found along the journey. The sweat, the blood and the tears are where we find our truest strength, our truest friends, our unknowing trust for kind strangers. The mountain top experiences are short lived. Yes, reaching the top of the summit is truly rewarding (as it should be) but you can’t expect to stay there for long. There’s new things to see, and do. But you do need to pack up your experiences, successes and failures, and head out on the next adventure. You grow. You get stronger. You learn to pace yourself.

But becareful to think you must journey alone. I’ve learnt that nothing great is ever achieved alone.

Thank you x 10000000 to all of my clients, collaborators and wonderful friends. You’ve been there for me in ways I can never repay. I’ve been shown kindness by strangers and love by friends and family that fills my heart. I now hope to take everything I’ve learnt from 2014 and the people in it – to open doors wider and hope we can continue to take care of one another.  I hope I can continue to have amazing opportunities to draw awesome events and stories, and design really cool things whilst being a really empathetic, compassionate and caring healthcare professional.  I want to be a better friend, a better student, a better time-user. I want 2015 to be amazing for you all.

As the proverb says, if you want to get there fast – go alone, if you want to go far – go together.

HAPPY 2015 Y’ALL!

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On Navigating Stuckness

I’ve loved a lot of cities, but I didn’t know what it was like to be *in love* with a city, until New York. 

Today I take my flight home (and i’m bringing the shingles back with me too). Whilst I’m not best pleased to leave, it marks another summer that I’m still here, kickin’ it and this fact feels good. After a year of falls, bike-accidents, too many punctures to count,  fires, shingles, doom-headache-facial-numbness-from-hell, treatments, steep learning curves, sleep-less nights, never-ending deadlines, constant doubt and having to rebuild my confidence to name a few – I’m feeling pretty [very] lucky. 

Time is already a tough customer, but it is torturous when you start measuring it. Becoming a new parent is a struggle (as most of my friends are now new parents! congrats, guys!). Starting a new course is a struggle. Staying with your values and staying healthy and keeping a good perspective is a struggle. But struggling is good. It is one of the only things that exercise the deep well of will and vitality within us. That help us dig into ourselves deeper, that push us to grow.

I went back to Sandy Island this vacation on different terms than previous years. And I was welcomed with so much warmth and posters everywhere that said WELCOME BACK SMIZZ! I felt like I had come home. I can’t explain the feeling.

When I think about my time at Sandy I just don’t know where to begin. It was there where I started to get the help I needed when I fell sick a few years ago now, and well, it’s always on my mind because ALL of my friends (sandy, donx, sheffo, nyc, everyone!) came together to help me through it all – and they still are. falling sick has taught me a lot about loss and resilience and the will to live and adapt. I feel broken, always. But when I start talking about the outpouring of love and support that I had received since my illness and accidents, ect, I become really weepy. Because I realized that for the first time in my life, I was truly letting love into my heart. Losing a small part of me has connected me to others in a way I had never felt. And whilst I feel broken, a sense of myself lost from feeling constantly tired and in pain, in a way, I feel as if I have gained much more.

This trip I’ve had the chance to see people I never thought I’d get to see again (or for a very long time). I got to see friends, and meet their friends, and meet their awesome boyfriends. I got to go to my first ever garage jamming session. I got to drink in brooklyn dive bars and see a record album release party! I saw a hipster version of charlie & chocolate factory store, got to see more of the sketchbook project, tried properly independently brewed coffee (still think coffee is gross), I gave up my seat on a bolt bus so 2 kid brothers could sit together and then the people on the bus all gave me an applause?! i went into the lake, felt sand between my toes, watched a new hampshire sunset. Went to my favourite chinese restaurant in  Meredith, NH with 3 great amazing people and the owners remembered not only who I was – but also what my favourite dish was! I went to my favourite thai-food place and managed to get really good Thai-iced tea. I survived 3 craz thunder-storms, including when I was on a BOAT! I made some cool new friends, and stayed up until 4am learning all about my new friends lives. I got a t-shirt with my artwork on ! And then managed to get a ride all the way from NH to Brooklyn, for free, so I could get there to NYC in time to see the US Open with another super special person who took me! I officially fell asleep on the streets of NYC whist waiting in line to get super awesome improve comedy free tickets. and I’ve drank enough delicious horchata to last until my next trip. 

I’ve done lots more, and ate a lot more food than mentioned here. But this stands out.

 I can say that i’m old enough to have a past with some regrets, but young enough to feel like I have a stake in the game for righting the course, and self-obsessed enough to have a hyper-vigilant sense of justice. I feel it. Life is a set of nested envelopes. 

“In the trade off between timeliness and timelessness, choose the latter. The zeitgeist rewards timeliness, but your soul rewards timelessness.” – Jonathan Harris

My trip reminds me that we need to work on things that will last.  I leave this here as a reminder to write the counter-point to this quote. My current belief is that after timelessness comes a second stage of timeliness: attention to quality time with people and interests you love, independent from their longevity.

As I’ve said before, I have some time left, and if I use it well, it will be more than enough.

Hopefully I will see you USA folks soon (without the gross shingles), and to my UK friends – I’m going to see you all super soon to catch up! 

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?

 

 

 

 

 

 

 

 

 

 

 

 

Top five regrets of the dying

I read this Guardian article over the weekend. It was about a nurse who  has recorded the most common regrets of the dying, and among the top ones is ‘I wish I hadn’t worked so hard’.

What would your biggest regret be if this was your last day of life?

I’m not so sure what my regret would be. Perhaps not working hard enough? Perhaps taking my friendships for granted. God knows I could be better at replying messages, emails, texts. Would it kill me to drop a line every now and again to a friend who I haven’t seen in a while? The answer is obviously it wouldn’t.

Would spending too much time on the internet be a regret? Not seeing enough of the world and everything it has to offer (I.e Japan & India)? Not going to see 21 Jump Street again.  Buying too much Hollister & not enough fun? Not learning how to surf properly. Not taking a real beach vacation with friends. Not renting a proper studio.

I’ve never been in love, although I did announce my love for my soulmate – admittedly via an email HA and a mixtape  (cuz i was a coward to do it in person)- but he never receipted that sentiment back, not even a tiny bit. But I’m glad I got it off my chest, after all, it’s not everyday you find your soulmate – and it’s not everyday i say the word soulmate! And we’re great mates.

I don’t think I’ve ever been loved back unless by a friend or a family member.  I’ve never been so drunk that I couldn’t remember what happened the previous night. Never had a hangover. Never drove a car. Never sat first class in anything – whether that’s a train or a plane. I never missed school for the fun of it, but I did miss a few French lessons on rolling dinner time by pretending we were in year 10 and not year 9 (and it shows). I’ve never eaten at an IHOP.

I nearly always order the same thing at certain restaurants (71 at Wagamamas, chicken bhuna at the Agraah, Spag Bog at Central Park & McChicken Sandwich without Mayo at McDonalds). I’ve never ate at a super posh restaurant. I’ve never said the phrase, “put it on my tab!” I have loads of disposable cameras that need to be developed but put it off  just incase the photos are crap and I’ve wasted £6.99 on shit photographs.

There’s obviously so much more in this world that I haven’t done. But there’s also been lots that i’ve already done!

I’ve worked my dream-life for a whole summer in 2008 whilst interning at Postermasters Gallery, NYC. I’ve gone from coast-to-coast in 4 weeks across America, blagged my way into a VIP party on a rooftop of Las Vegas at the tender age of 18 with fake ID and shit clothes, I’ve watched the sun set and rise on many different continents. I’ve attempted to surf multiple of times, but I probably say swallowing a lot of salt water is more apt. I’ve slept on a park bench, in the back of a car in brutal february weather. I was the first person to ever go to university or graduate high school in my entire family history. I got a first class honors degree, a masters degree at that. I occasionally get head-hunted for my skills. I’ve been published in a few books and magazines. I’ve taken last minute flights from airports. I’ve missed many flights from airports. I’ve tried crazy food. Even if I didn’t like it, i always try it again later. (Sushi!) I may not be able to drive, but I’ve met some of the most interesting people whilst taking public transport. I’ve seen the Titanic movie – 3 times.  (I probably won’t be seeing it in 3d).

I think sometimes it is easy to dwell on what wasn’t. And even though I think it’s great to think about what you haven’t done, or don’t do and would like to. It’s important to consider everything else you have done in evaluating your regrets.

 

Here are the top 5 regrets:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.

2. I wish I hadn’t worked so hard.

3. I wish I’d had the courage to express my feelings.

4. I wish I had stayed in touch with my friends.

5. I wish that I had let myself be happier.

 

What’s your greatest regret so far, and what will you set out to achieve or change before you die?

Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last 12 weeks of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, which gathered so much attention that she put her observations into a book called The Top Five Regrets of the Dying.

Help me plan a USA Road trip this summer

I’m excited. I have 3/4 friends who are actually game for a roadtrip in the USA this summer. I know what you’re thinking, why do you need friends to do a roadtrip anyways? I can’t drive. So basically I need friends so I can be a freeloader passenger (map navigator I will call myself). It’s really the only way you get to see America, all those small towns in the middle of nowhere. You sort of go past them on the train, you sort of get soda & use the bathroom at service stations of these nowhere places when you take the bus. But you never get to actually check them out.

Since I actually can’t drive. Or never attempted to do so, (ha) I have no idea what navigating the roads will be like.  Luckily my new shexy phone has a GPS in it. Yeaaaahhhhh buddy! But where to go?!

If any of you have tips for roadtripping USA, whether thats experience or how to do it on the cheap, or whether that’s some MUST see places, or places to check out on our desired route, please holla!

You can collaborate on the map of ideas here!!!

The Perfect Summer

This image pretty much encapsulates the awesomeness of the summer. I’m sad to say my American 2011 adventure is coming towards the end – but maybe I’ll do the whole thing all over again next year. Try and get another show in NYC. The more I do the job for the Y, the more I wanna come back each year. One day I’ll get a real job where I’ll have to work all the time and it won’t be in a shop, or a call center, or a bank, or in a fast food restaurant, or ect. Not justifying anything here, but, I probably have to come back to start my book anyways. Yeah!