Getting sick was (is) the worst thing that ever happened to me, but

Last week Facebook memories reminded me that the exact week in 2012, I wrote on my Facebook status that I was finally seeing a NHS haemotologist oncologist after my crazy USA medical adventure. I have certain dates etched into my collective memory, which feel like I’ll never be able to erase , even if I wanted to. But this date had slipped my memory.  In the facebook status I wrote how many people had sent so many great and supportive messages and had helped me so much. The same still stands today.
Every so often I get a message from someone who’s heard my story, seen my whining tweets/blog,  or I get contacted by various volunteer coordinators for my work with and fundraising for various charities.
Every time, I’m nervous about how the call or the email will go.
But what happens is that they get in touch and often share with me these amazing, personal, intimate stories. These stories are of hardship, courage, loneliness, heaviness, of life and death. Of feeling disempowered, the feeling of the weight of time.
Will I be able to help them? What will I say to this person who’s going through what I know is probably the hardest thing they’ve ever done? I see and feel it every day at work too.
And EVERY TIME, every day I’m amazed.
Amazed by how optimistic and brave people can be, even when they’re terrified. Amazed that even when their life, or loved ones life, was/is on the line and there’s little they can do, we can laugh together about pain, side effects, the dumb things that go along with this life with whatever the struggle is.
Raising money to try and get Radiotherapy in Doncaster ( http://justgiving.com/sarah-smizz1 ) has opened up another opportunity for people to share their stories with me. I feel constantly humbled, and touched that they’ve chosen to share their narrative with me, and want to support me too.
 It reminded me of this website a friend showed me based in Canada, about the faces of healthcare. I think I am going to make something similiar in the UK. I am going to create a beautiful visual platform to help share peoples stories to help us learn from and build better connections and services, and make us think as healthcare professionals how we connect with people. And to also help celebrate not only these peoples lives & struggles, but also how awesome the NHS and it’s staff are too.
This time of year always makes my wounds feel rawer, but my need to thank and be grateful gets more intense too.
 Getting sick was (is) the worst thing that ever happened to me, but in so many ways it brought out the best in me. I guess I shouldn’t be surprised it does the same in others.
3 weeks & 5 days till I can go OTT on giving thanks. FRIENDSGIVING, and y’all are all invited 🙂

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/

 

Everything That Can Happen, Does Happen

I just bought a book I found in a bargin box for £2 on quantum physics. It’s by Brian Cox, it came out a few years ago when I was working one of my many part-part-time jobs in a bookstore. The book has always intrigued me from the shelf I used to stare at from the till, mostly because I love the font on the book cover (yes, i constantly judge books by their covers – USA bookcovers tend to be pretty bad) but also I really liked the title. “Everything That Can Happen, Does Happen”.

– Let’s all just think about this sentence for a moment. -“Everything That Can Happen, Does Happen”. !!!

Hot chocolates become cold, buildings crumble, and stars slowly die; that’s like a physical visual interpretation of time. The astronomer-philosopher Sir Arthur Eddington in 1927 cited the gradual dispersal of energy as evidence of an irreversible “arrow of time.”  In classic physics, this would be a mind-fuck because in theory you could put all the particles back together and reverse that effect. In very very basic lame-men terms.  (i’m blazing over some important parts, so this isn’t going to be your accurate quantum mechanics class)

Instead, what we’re left with is a strange effect called “quantum entanglement”. This is where energy disperses and objects equilibrate, scientists say it’s because of the way the elementary particles become intertwined when they interact. How cool is that? So  this entanglement builds up between the state of your peppermint hot chocolate and the state of the commuter train that you’re on.

So, now you’re wondering why I am banging on about hot-chocolates and entanglement which sounds like a sequel Disney movie? Well, entanglement could explain the flow of time. Why buildings don’t just re-build, why your cooled chocolate suddenly doesn’t get wicked hot again.

The story of time’s arrow begins with what we know, that nature is inherently uncertain.

In principle, as the state of your commuter train evolves, the hot choc could suddenly become unmixed from the air and enter another pure state of its own. But there are so many more mixed states than pure states available to the hot-choc that this practically never happens — and apparently we’d all have to outlive the universe to witness it. This statistical unlikelihood gives time’s arrow the appearance of irreversibility. But this is what makes it super interesting. Literally ANYTHING could happen to us. ANYTHING. There are endless possibilities, just the statistical unlikelihood which somewhat governs our chances.

This is just another significant discovery in trying to explain how changes in time occur, but we’re all still wondering about time in general? Like why it seems different (both perceptually and in the equations of quantum mechanics) to every one and everything. And helps with the questions of “why me?”, “why not me?”

I’ve written so much about time over the past few months. Trying to understand it. Own it. Its weight. Its heaviness and lightness. Its ungraspable real-ness.  I just read a book called Time Warped by Claudia Hammond, which talks at length about how we perceive time. One of her arguments is that as we get older, we have fewer meaningful experiences. We fall into a routine of sorts and life becomes less memorable, which makes our perception of time feel like it’s speeding up as we age (could be quantum flow of time). It’s kind of a sad idea. But it does put things into perspective. We should be doing more things that are memorable! YOLO.

Since I became sick, and lost certain abilities I used to have (still mourning)- and I seem to spend a ridiculous amount of time napping and sleeping than I ever did before. I have become obsessed with documenting and measuring time, in all of its forms. This is because I constantly feel like I either don’t have enough time, that I’m not using time wisely, or that it’s going to be snatched from me before my real time is/should be up.

As a result I have loads of apps that measure things for me.

One of my time-measuring things is my Fuelband. I like the Fuelband because it democratizes work outs and makes them all relatively equally by registering fuel points as apposed to steps, or calories, or work outs (it also measures those too) but the fuelpoint system works by making sure you get data and points for all activities equally from drumming, to running and walking to wood carving to even brushing your teeth. Whatever. But My Nike+ Fuelband obsession probably lasted about a month, and then maybe like 4 months before I truly didn’t give a shit about whether or not I hit my fuel-points target. This lack of concern came with getting knocked off my bike I think (anything can happen, quantum change!). Riding my bike was my main way of excerising because it’s fun, and free, and I can grind miles even when it’s really difficult to just walk.

But I am back, concerned about my time. It always takes a period of feeling stupidly unwell, and some crazy hospital visits to make me try and get my priorities back in line. I want to get back on the bike, to start to care again about my time &  get back on  doing stuff for my output into the fuelband. I want to spend more time with friends, do work in a timely manner, research loads, reply emails when I get them, not let them build up. Quantify my quality moments. Change bad habits into good habits.

It’s a lot to ask. But if a hot-chocolate can go cold because it equilibrates with the surrounding – I’m sure I can do the same.

Time is our most valuable resource, guys. Who knows how many christmas dinners I have left – so it’s about time that I take the time to spend with loved ones and enjoy things and do things that will help with using my time more efficiently. Because Everything That Can Happen, Does Happen.

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?

 

 

 

 

 

 

 

 

 

 

 

 

2013: I started this year, as like last year too, unsure if I would be around to finish it.

I’m sat here, eating a Twizzler that was given to me by my USA friends who I met in London yesterday. How lucky am I with all those values in that sentence? I can travel, I have friends, I have friends who think of me, I’m eating one of my favourite USA Candies!

I started this year, as like last year too, unsure if I would be around to finish it. But here I am, still surprised at the reluctance and strength of the human body and mind,  and at modern medicine. Life naturally changes, it often discriminately changes too, but sometimes in the most beautiful ways.

Here’s some of my 2013 changes, lessons, and awesomeness:

This time last year I was perfecting my personal statement to apply to university to study Radiotherapy & Oncology. I started my new course this year, which 4 months into, I STILL ABSOLUTELY love.  Being super healthy and indifferent before all this stuff happened to me, I had NO idea I was actually interested in medicine – as I had no contact with it, really. And Oncology mostly.  We know from the kind of art I like to make, that in order to understand something I have to be part of it, or try to make the change I want to see from my personal experience (I.E. power struggles).

On my better days, I feel connected to something very big… I like to think my experience happened to me to point me in this direction, ignited a fire of curiosity within me. Hell ,I still have no idea how i even got accepted onto the program with my arts-no-science background – my ambition is to help innovate Radiation Oncology in the future. I’m here now because I needed to understand what’s happening, and also make sure the patient pathway is  always full of the best care and compassion and empathy. Protein make-up of tumors and immunology have really caught my imagination this semester too. To be part of some great changing research in the future would be dope. All of this is extremely important to me. Because, the scary truth is that many of us in the cancer world — both doctors, HCP and patients — are  kind of winging it here, just hoping that the cure  & the disease doesn’t kill us along the way.

My course is a different kind of pace than studying art was, a different way of thinking (as you’d expect, but really!), and still being a freelance Artist makes juggling both jobs hard  – but everything good takes time and it feels worth it.  And i’m so damn lucky to be here, studying this, being part of it and still maintaining my art career!

Another thing is that for all the pain and uncertainty I’ve experienced, I’ve received 10 times that in the love and generosity and devotion from friends, family and even random strangers! I have been constantly over-whelmed by the goodness of people within my life. That’s why this year, I feel like I’ve waned towards childhood fantasies – christmas makes me more excited, i love dinosaurs more & onsies, even more than I did when I was a kid! It’s a great “grey-area “to be in because I’m discovering the wonder of mystery again, the possibility of things unseen — and mostly – the joy of savoring the moment before it’s gone.

When you think you’re dying  (and surprisingly don’t ) eating Twizzler’s at 12:18am doesn’t faze you. This year  I’ve ticked more stuff of the good ol’ bucketlist. But strangely most things that got ticked off – was only possible because others made it possible!

One of my favourite artists, role-models – and over-all-inspirational-good-guy William Powhida made me my own piece of art! (6 months on, I’m still awe-struck & completely made up with this) Bucketlist TICK! , My mom bought me a gorgeous cookbook this christmas so I can tick off [Learn to cook], A friend who is an amazing woodsmith showed me how to carve wood- basically, I’ve sort of worked for a start-up this year (but I could expand on this), soon I’ll be able to bike a part of the tour-De-France as they’re opening up a route via Sheffield! Friends and I megabus-ed to Paris to see it at Christmas,  I swung on a trapeze, splashed in the ocean and lakes, saw breath-taking sunsets and sunrises around the world, rode horseback across a desert, did another USA roadtrip with my friends and all I seemed to eat was pretzel bites and jalapeño cheese & chips for lunch, because, what the hell. I went to the movies a billion-times. I threw coins into fountains and made wishes. Made lots of new friends, learnt a bit of Italian (That I’ve kind of forgotten), learnt that my French is absolutely terrible, and that I’m definitely an “arty type” rather than a “sciencey type”. And I opened my skeptical heart to love again.

I’ve learnt that I’m crappy at a lot of stuff (like saying medical words, gawd it’s hard, and getting up early), but my friends are phenomenal at being there for me and helping me go about the business of living. We all need miracles. There’s nothing like reality to make you trust in the impossible. These miracles are also your mom and your  brother and your grandmother and all your funny, spirited, kind friends. These miracles are every tender moment of your life, which disappears with every tick of the clock, and, I have no doubt, every fantastic adventure you have yet to come. The miracles are part of all of us, at every age, still willing to give, still willing to hope…

And so here’s my hope. I wish and hope that all my friends and family are surrounded by the people and things that they love. That 2014 is full of beautiful, amazing, simple and complex adventures and ideas and happiness and health for you. I hope that these experiences keep helping me to be a better person, a better friend,  a better health-care-professional, a better artist, just generally better.

Keep being awesome yo. Friends, thanks for the support. Here’s to more learning, more drawing, more motivation and healthy happy thoughts for 2014! 🙂

What 15 Years of Art Has Taught Me About My Life: If You Need Help, Ask. We Can’t Do It Alone.

As anyone who knows me, will know that the journey of illness changed my course, some-what drastically. I was prepared to dedicate my life to trying to navigate the art world path, and that alone. And I was having a good go at it too. But getting sick made travelling that rocky, unstable road of unemployment or quiet freelancing months difficult. Then the goal posts changed. 

 

I’ve been doing art – dedicated to it since I was 14/15 years old. You’d think half a life would be enough to get into a groove, but no. I went from a kid drawing scooby doo, to graffiti artist, to art school student who played around with architecture and socially engaged practices to institutional critique drawer, to an artist who helps to facilitates ideas for change. Age and maturity give you the eyes to see how you differ in subtle ways. But so does impending potential death sentences. One of my big insights from this year is that my polarities are inverted when it comes to knowledge in art and life in general.

 

Up to a few years ago, I had never been to the doctor. I lived a relatively carefree life. I had little empathy geared towards illness because I had never really experienced anything that hindered how I felt or what I wanted to do that wasn’t in my control. I was a night-owl. I stayed up late, all night, multi-tasked until 3am. I tried to make sure no stone was left unturned. I look back on my ability to juggle things almost effortlessly, and my never-failing energy levels with nostalgia, frustration and even a bit of jealousy at my current state of not being able to stay up past midnight (if i’m lucky) and needing to sleep/not having any real proper cognitive function for hours between 5-9pm because I’m so damn tired. 

 

Art was (is) key. The most important thing to me. I wanted to be an “art-star”. I wanted to be respected. I wanted to inspire, make people think about changing the world for the better. I wanted to make a living from doing this thing. I wanted to be in coffee table books, on blogs, I wanted YOUR job because i thought i could probably do it better. What an ego! Naturally, with wanting to be the best (lolz), or at least acknowledged, comes a big side plate of ego. I was starting to get somewhere too, and this just made me worse. People would give me compliments, stop me on the street. And I, not prepared for this part of my personality, would write my name all over anything that I was a part of. I needed recognition.  My personal relationships suffered from all of this because all I would talk about was art, my art, who was doing what wrong. My priorities had no perspective, no context. No depth. I thought art could change the world (which I still believe it can) because it had changed my life so much. I was just the small, stupid kid from the Donx who had never left South Yorkshire until I was 17, who was the first in her whole entire family to go to University. And here art was, giving me a passport to see the world and its beautiful people and cultures.  Art made me feel smarter than I was (am). People invited me in and it changed me for the better. But it also made me loose sight on what was really important in life. (Which happens to the best of us, in everything). Plus, I was young and reckless. I never went home, never realised just how much support my friends and family gave me in order to follow this narrow art path. I Never really offered support back to those who supported me, just kind of took and never gave back because I never really thought about it. My eyes were on the prize. Never really understood others personal plights, just the external structures/systems of which affected them. All of the time, missing the point – Mary Kelly once said that, “the personal is the political”.  I always thought that my practice was personal because of where I was coming from, underdog-thicko, poor, working class northern kid. But now, I’m not sure it was as personal as I thought it was.

 

But as I got sick, and I lost all that time during being undiagnosed too. I couldn’t be the force I wanted to be. I couldn’t balance all the plates. I couldn’t be present at all the art openings. I couldn’t even be present in person because I constantly felt (and still often do) like I was in a daze of pain/general unwellness/fatigue and heaviness. I lost my competitiveness. I’ve lost days, weeks – even months of my life.  People forgot who I was. I was starting to forget who i was too. I felt angry at  myself for not being able to shake off what was happening to me, for not being there, or being able to process the same amount of things. I stopped being able to do residencies. I kind of stopped applying for opportunities…. How do you even come back from such a thing? All of the promise that I had shown. Gone. Forgotten. Fickle. Meaningless. A performance of holding yourself together. 

 

But strange things started to happen. People started to share my work for me. I started to get more work opportunities through than I ever did when I was trying to be obnoxiously pushy, granted these opportunities weren’t immediately within the art world. I chose projects that were meaningful. That could really help to make a difference in the world, like working with the NHS or on TEDx.  I realised the amazing support network that surrounded me. My personal relationships began to flourish too because I was no longer fully neglectful. I became a better friend, a better teacher, a better sister and daughter. The pain I feel was transcended into new full blown up empathy.  I relate to people better now. Possessions and money lost all meaning. I now crave time & space. I feel happier. Art feels a little bit lighter. The sky feels bigger, the seasons more beautiful. I have a few scars but most marks are left on my psyche..

 

The thing is. I never asked for help. I was lucky enough that I had surrounded myself with amazing, loving, courageous, smart and kind people who never once thought to give up on me, or resented how much I talked about (my) art before who all helped without me ever needing to ask. I am now forever indebted to those who have and continue to help me, support me, help nurse me back to health. Who continue to help me navigate my art practice, and who send me work to keep me finically alive, who are helping me to slowly try and come back from this unexpected departure.  I’m not sure if I will ever re-bound back into the real art world. I’m not sure I’ll ever be able to make a full recovery – both career wise and health. 

 

Most people use time to hone down and specialise. But specialising bores. It’s just a way to pigeon hole us into parts so other people know how to think about you. your place in societies cogs. Art for me has always been about closing the gap, turning the elitism on its side, helping the dark matter reveal it’s true potential. Allow the powerless to have some agency. I don’t believe it can be bound by discipline or industry. I always loved that about art. I’m using this extra time, my new found empathy, my obsession on cancer, my need to make a change, gain some stability in a life which seems to be dominated by so much uncertainty to gain new knowledge in a new area, and combine both things together – radiation oncology and art! 

By refusing to choose sides, you open yourself up to the idea that the relationship can be symbiotic, not combative. How can they be made at the same time, so they shine on one another, too?

 These are interesting questions. The kind you could spend a life pursuing. I tell you all this because the thing I’m left thinking is: how many people are out there are struggling?  Who need help, who feel like they can’t ask for help? How many of us are out there on our daily grinds, just trying to make it, who aren’t paying attention to those who hold us so close, who could need help too?

 

So, if  that’s you, and if you need help, ask. We can’t do it alone.  

It is a privilege to be here, alive, with you – my amazing friends.