Post Traumatic Growth – Trying to Make Sense of Things

One thing that my friends know about me, is that I constantly think about our existence.

As a kid, during computer club after-school – after printing out a million pictures of Lil’ Bow Wow to add to my collage shrine to the pint-sized rapper – I then pretended to be a 16/17 year old on a Philosophy Forum (I was about 13/14). I didn’t grow up with books, no one in my family is interested in the human condition – in fact I grew up with the plight of survival – the art of just getting by. On whatever that was. Ketchup sandwiches for lunch because that’s all we had in the house, and the rent was due – and in massive arreas. But I constantly thought that there must be more. I would devoure and try to understand these philosophical ideas on time, and fate, and existence. Ultimately – being.

By the time I got to university, by myself, by my own hardwork – and my own investment and time – with some guidance from a few teachers that believed in me at school – I started to think that the shit that I had endured years of my life – was part of a destined path. An experience I had to learn from. It taught me about social justice, the differences between in having very, very little and having a decent amount, it made me know that society is unfairly distributed – the marxist in me. I thought that it was practice – to give me a sense of what it’s like – and that I had got to where I was (uni) so I had some tools, a way to help make a difference, using this experience in hand. I had – and still continue to do so – imposter syndrome though. I thought I’d drop out, that I wouldn’t be smart enough, ect, ect. But the complete opposite happened and I always quote my best friends at uni as the reason why I fell head over heels in love with art, with learning, with working even harder than I ever had before on this passion of mine.

I’d think of all the factors that lead me to meeting them, and decided it was fate. That I had acted in a specific way, met all these people- specifically for a reason. Without them, I wouldn’t be here. I wouldn’t have had a specific experience, they wouldn’t have helped me, ect. That it was kind of written in the stars.

Now, maybe it is – probably it isn’t. The logical person in me says – no way. It’s just coincidence and it would be the same outcomes irrespectively because I’m a pretty decent judge of character.  The person – which is by far a bigger part of me – knows that psychological this is some sort of coping mechanism. And that actually, every person brings something different to any and every situtation. And I know a kid from my background has actually jumped a bunch of odds, and so I believe it’s some sort of fate thing. But i know I haven’t got here alone.

When I fell sick. I couldn’t get out of bed. I think back to when I was around 24 – and I actually can’t remember that year very well at all because I spent so little of it conscious. I couldn’t reply to emails – I’d go to sleep at 6-7pm, and not get up until 1-2PM and I’d force myself to get up – I’d attempt some drawing commission work for 3 hours or so. Waiting for 5-6pm to come back around as a decent time to get showered and go back to bed and replay this whole cycle. Over and over. Every minute awake felt like I was being crushed, I’d have day-chills, nose-bleeds, nightsweats, and the worst pain.

I felt like I was going to die. I was angry, upset, in pain, why me? I had lost who I had spent so many years building. Smizz the kid who’d reply an email in an instant, who could juggle a bazillion things at once, who kept down and writing and who couldn’t understand why others couldn’t be as committed to making the change. I lost that. I had lost my identity. But it didn’t matter anyways – because was it even important? Crisis, or what.

But through my health experience, I naturally did what I had done throughout my life. There was some sort of reason why this had happened to me, surely. Just another lesson. I still feel shit, and I have a bunch of stuff that constantly keeps happening to me.  I knew this awful experience – throughout the healthcare system – meant that I could change it – even if it was just being there to listen to patients. My shitty health changed me.

Occasionally I feel stronger than I did before,  more spontaneous and open to new experiences and even quicker to laugh. I might still sweat the unimportant stuff – like ePortfolio, an exam, but I know deep down it’s kind of meaningless in the greater scheme of things.  Not that I haven’t struggled. I still have to deal with disorienting symptoms daily, and there are still days when I’m stopped in my tracks by grief. I still mourne the loss of the old Smizz. I constantly see my GP – like every few months, a plead with him that there’s got to be a way to stop feeling this fatigue, to stop feeling the pain.  Even so, I try and use all these experiences as a springboard.

I made the RADCARE radiotherapy Patient information app – which won an award. I won the Health & Wellbeing Student Award for Leadership, I’m quite proud that my patients seem to give really nice feedback about me to my mentors on clinical placement, I’ve drawn loads of stuff to help change patient experience, patient involvement, to engage people across the spectrum – from enhancing Prostate cancer care, to Dying Matters and the End Of Life Care Pathway, and now I’m going to Toronto – and Harvard over the next 2 months to learn more and bring back these experiences to see if I can begin to invigorate the pathways for better supportive care.

People always think jumping from art to healthcare is a jump. And perhaps it is. But I don’t really see it as that. In my many hours spent trawling through the internet looking for explanations, looking for things that can help with my pain/fatigue. I found that there’s a name for how I’ve built myself.  post-traumatic growth (PTG), a term coined by Richard Tedeschi, PhD, a professor of psychology at the University of North Carolina. Dozens of studies have shown that trauma survivors can change in profound ways. And it goes well beyond resilience, or bouncing back from adversity. “With post-traumatic growth, a person who has faced difficult challenges doesn’t just return to baseline, which is what happens with resilience,” explains Tedeschi. “They change in fundamental, sometimes dramatic, ways.”

Whilst I still mourn my old life, how I could stay up later and was pain free -and ultimately more care-free. I’m not super sure I would change it on reflection. I feel wiser, I feel more emphatic, I know what’s important – my family & friends, I’m less of dick now, I feel even more motivated to get out there to help others, I’ve built the most unlikely friendships – even with my doctors – and working in healthcare has opened up way more opportunities for my artistic practice than I ever hoped to believe. I never knew that actually now is the time to be a healthcare worker artist!

now I’m not saying every bad thing has to have a happy ending, acceptance nor do you have to oozze rainbows and sickening positivity – sometimes I think that can be counterproductive too. I think it’s finding meaning on your own terms to give you some ownership to the shitty things that happen that are ultimately usually out of our control.

When I won the award for my app – I felt a huge massive amount of pride. Something I’ve not felt in a really long time. And I think it’s because I designed it – with my experience in hand – with my patients stories in the other – with my passion for making things and wanting to help people. I wouldn’t be here right now if I never fell sick and my life changed in a way I didn’t want it to. I can still barely see where I am going, I’m still amazed I’m still on my course, that I’m still alive. I think I felt the pride because i realized that to get here I’ve had to trust myself, to learn from my bodies failure. To know that I have the bestest friends and family behind me 100% of the way in whatever I do. Because, like I said, without them anyways – i wouldn’t be here now – regardless.

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

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

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

But I propose a difference needs to be made.

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

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

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

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

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

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

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

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

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

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

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

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

I go to bed tired.

Wake up in the middle of the night, tired.

Wake up in the morning, tired.

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

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

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

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

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

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

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

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

How do you start over again?

 

 

 

 

 

 

 

Trying to Understand Early Russian Formalism & the Smizz Life

1. ABSENTATION: A member of a family leaves the security of the home environment

Picture: It’s a few years ago. I left for America. I love America.  Except I wasn’t leaving home on my usual terms. I was feeling super run-down. I had been having nightsweats, bone pain, this insane fatigue that wouldn’t subside. The UK doctors told me it was just a “mono-style virus”, so I left for work & adventure. Except my boss in the USA was having none of me just waiting out the virus. She made me see a doctor, who made me see a haematologist oncologist, who then told me it looked bad & that I needed to go home & get it sorted ASAP.

I didn’t though. I thought that this guy is talking shit. I ran away from this statement. I suddenly felt the weight & value of time. I did a pretty amazing YOLO roadtrip visiting 3 coasts of America with friends, all with that thought in the back of my mind.

 

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In my younger days, I studied Media Studies as one of my A-Levels (& got an A, of course). We looked at a crazy Russian Literary Formalist called ladimir Yakovlevich Propp who came up with something called Morphology of the Folktale  which basically looks at breaking up fairy tales into sections and 31 functions/options of resolution and narrative. His elaborate categorisations of classifications pegs plots points: tricky, guidance, rescue, ect.

Propp claims that you can shuffle any of these into constant rearrangements. They mark a moment where an action takes us in a different direction. It’s a nice way to to look at disruptions. He says everything proceeds from us loosing our place.

 

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2.) INTERDICTION: An interdiction is addressed to the hero

We’re out of order and we’ve hardly begun. I was instructed to not stay in the USA and wait out what was happening to me. But I did.

 

3.)VIOLATION of INTERDICTION. The interdiction is violated (villain enters the tale).

The villain and hero here are both myself. The villain is an illness. A feeling of ill-health. A feeling that has slowly taken over and taken everything that was me. I was just in my early 20’s. I had never been properly sick. Sure I had colds and sore-throats, and sickness bugs – but this felt different.

I was a self-absorbed young adult with gritted determination to make it in the art world.  I had learned to be different, to try harder – no matter who I left behind. I had started to get just a tiny-lil bit cock-sure of myself. Just a tiny-tiny-bit. I had just got a prestigious artist residency at Site Gallery when I got hit.

I’d arrived somewhere without being invited.  Maybe I didn’t have the right to be in that place. Maybe that didn’t make it right that I fell ill, but maybe I wasn’t purely innocent either.

 

4.)RECONNAISSANCE: The villain makes an attempt at reconnaissance. The villain (often in disguise) makes an active attempt at seeking information.

 

There was no tricky. But there was deception. For months and months, and months, this illness  hid away. Making itself really hard to put a name to. To be recognised. But, it knows who I am. It knew I stayed up working until late, that I was fairly active. It fed on my inability to get rid of it.

 

8.) VILLAINY or LACK: Villain causes harm/injury

The illness took virtually nearly everything. I no longer can work all day and stay up.  It made me work less, sleep more,  which in turn made people forget about me, helped me to ruin my own reputation I had worked so hard to get. It made me bleed in places I never knew I could bleed. I have days where I literally feel like I might be dying, I catch myself looking super tired & worn-down in pain in a mirror & saying to myself: “I’m ok, I’m ok, I’m ok”. I’ve lost days, weeks, months of my life. I’m still  having pain which no one understands. This makes me feel alone.

 

17.) BRANDING: Hero is branded (wounded/marked, receives ring or scarf);

I was branded. I have no scarfs or rings but emotional scars & a few physical ones. Somethings have shifted under my skin. Emotions and lymph nodes. Things pressing on things which present as neuralgia or headaches or bone aches or passing outs. Swellings around memory, swellings around my intellect and pride which hurts.

 

14.) RECEIPT OF A MAGICAL AGENT: Hero acquires use of a magical agent

Through this struggle, my whole world view changed. I gained this whole new perspective, this whole new weight of the importance of empathy. Before, I now realise, I had little empathy – towards everything. I wasn’t a dick or anything, but I didn’t or couldn’t understand others plights – because I was so blinded by myself. I just understood the system that affected others, not HOW it made them feel & how that affects them.

am more thankful. It’s just not in the way that’s immediately assumed. I am grateful for the pain, because now I understand it better. I am grateful for the struggle, because I can be of more use to those in the midst of it.

 

29.) TRANSFIGURATION: Hero is given a new appearance

I used to only work in art stuff. Now you can find me in both the art-world and in healthcare. I wanted to re-train myself to work in healthcare to both give back, and to be the person who understands because I felt (and still do) misunderstood on how the villain really affected my quality of life. The central question I now ask myself is “What’s the relationship between caring and understanding?”

 

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When I think about my life in these terms I see  all kinds of functions that I never asked for: struggle, challenge, trickery, frustration. There’s some fighting, and a lil bit of winning.  The gold-dust comes in the realisation of personal-growth and amazingly supportive friendships along the way.

The materials of my life, as memory recalls and deforms them, will always involve the villain: the stranger, the illness.

When I casually drop into conversation to people that I’m studying radiation oncology, as well as still working as an artist, and still feeling shockingly poorly, they look shocked. They think it’s a huge turn, or that art must not be working for me. But it’s not really. I sit in class, reflecting upon my own life like text. I feel like i’m still constantly shuffling together pieces of a puzzle i can’t see the edges to yet.

There is no function designated for this last part. Where the hero turns to studying healthcare & medicine alongside art to try and understand her own hurt and use it to try and help her to understand others hurt.

 

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23.) UNRECOGNIZED ARRIVAL

I could spend everyday like it was a holiday. I feel like I deserve to spend my life constantly on vacation. But you can’t. You have to return to normality. But this is hard. It’s hard to return to a familiar land, to return home, to do everything like you used to, when you no longer feel like yourself. Things have changed.

 

 

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! 🙂

This much I do know: (reflection on 2012 & life in general)

Intro:

2012 has been a year of awesomeness but a huge steep learning curve for me. Things started off amazing. I got the SITE Gallery Residency, met some awesome people, and I quit Coca-Cola, I still had my bookstore job and things felt good.

But I started to feel really unusually tired, and worn down. I brushed my shoulders off & blamed the no drinking coke thing, started to drink it again to reverse the supposedly effects, and ignored what my body was trying to tell me: that something wasn’t right. I started getting incredible bone ache around my left side of my body-specifically my shoulder, and drenching night-sweats. I lost over 1.5 stones in weight (that I had somehow put on a few months previously) without even trying! I got nosebleeds regularly for no reason, had an enlarged spleen for a while, lost my appetite, lost my get-up-and-go. I kept up with work, and took any opportunity open to me, but I slowly lost my connection with a whole community of people because I couldn’t make it to their exhibition openings and such – as I felt so poorly/tired. Which sucked more than anything.

Great work:

But I carried on working, regardless. Thanks to the amazing Doc/Fest crew, I got another chance at being their resident artist – and they recommended me to draw a TEDx talk in Sheffield, which got me my new part-part time job in London that I started in November!  Drawing a TEDx talk was a dream come true, and continuing to work with Sheffield Doc/Fest is one of the best-things ever.  My role on the Gravity Lecture series at Sheffield Hallam University has grown substantially. And I feel equal to my colleagues, where my ideas are often pushed forward. Which is insanely awesome. Even gaining some teaching opportunities – which I never thought would happen unless I did a PhD.

The “Unifying diagnose”: 

I went back to America to work for the YMCA for my 3rd year in a row. That place is now like family. It was here where people were pretty concerned about my mystery illness that my UK doctor had said was just “probably a mono-style-virus”. They made me see a specialist in haematology & oncology (despite me not wanting to) who told me that “a unifying diagnosis is a lymphoid malignancy”. Yeah, pretty hardcore stuff.

In denial  I carried on ignoring all these signs. Against doctors orders, I continued to work & do our legendary roadtrip from coast to coast in a month. But things became apparent on my roadtrip, that this was probably no virus. I left it until October to go back to my GP with a cough I still have, Taychicardia, & some lumps and all the above symptoms, and 2 months later I started fainting, and getting blinding white spots in the bottom half of my vision, i flunked my field of vision test at the Opticians when my actual vision is fine, and now my immune system is completely compromised. I’ve picked up pretty much everything that’s going around. The naro-virus, I just have to look at someone with a cold and I find myself full of snot. My tongue also looks like i’m diseased and i’ve had a  numb big toe for about 6 weeks now – which i think is in part due to what i’ve been taking medication wise.  It still hasn’t been disproven that I don’t have cancer. But, at least I’m sort of being treated with something at the moment. I  have Christmas off and go back in January for more tests, treatments & hopefully a clearer view.

What it revealed & what I’m learning from it:

This illness, whether as serious as predicted or not so serious, is humbling and extremely revealing – it has forced me to survey my life- perhaps super early than i would have- with an unforgiving eye. There are some shameful, lazy, hurtful, and weak acts in there. Everything I thought was important, suddenly seemed kind of unimportant. Everything I thought was unimportant, became important. I read a book about a guy diagnosed with cancer who said “If I live, who is it that I intend to be?” I read this and found that I too had a lot of growing up to do.

Even now, I was pissed off and taken aback when I went to see my hot GP about 3 weeks ago, about the blinding spots in my vision, who then freaked out  with me for changing my appointment with a specialist because it clashed with a work commission (ironically for the NHS). I said, “But you don’t understand, this is important” (This being Money firstly, and reputation secondly, getting more work thirdly) he said and quite aggressively for a GP, “No, Sarah, I don’t think YOU understand…. You need to put yourself first sometimes.” He was right. I don’t understand. I don’t understand why I’m still not back to normal health, and I still haven’t learnt my lesson that there ARE more IMPORTANT things in life than money, or fitting into what is socially acceptable. Dare I say it, that, you know, MY life/health is important. Reader, YOUR life is especially important.

I didn’t think people even cared about me. Until this year. I’ve witness kindness and amazing generous acts. Even from strangers. A woman who I met in the airport line, scrambled against the line at the end a plane journey to give me her card, told me to keep in touch and offered to do a bone marrow drive in NYC if it turned out I needed one.

But the one thing I am exceptionally grateful and humbled by is my friends. I keep saying it, but this is because i feel like I might have taken them for granted, or not shown them my appreciation until now. Friends are supposed to be there for you in tough times. But these guys are everything and more! They are my mirror back board. I wouldn’t have done ANY health thing if it wasn’t for them telling me to get myself checked out, or the doctor needs to know about this, ect. Even when there are moments of doubt and somewhat fear, they are there.

It made me realize that I need to make more of an effort with keeping in touch or caring about the needs of others. My art or resume won’t keep me warm at night. And if all of that ended, what would I have to show for it?

So here I am, I am trying to make every obstacle an opportunity. Doing something amazing takes so much effort and risk. Trying to fight against the inertia is wicked hard and tiring but it is ultimately the fight that counts. I’m asking myself what is meat and bones important?

I’m still figuring out stuff, but i know i see more beauty now than I ever did, I take care of my body way more now even with limited energy reserves. I try and keep and document my life just incase. It helps me see if this is what I want my life to look like. I know in 2013, I’m going to give back, help others in need. I’m going to work so much harder, I’m going to get up earlier, go to bed earlier, waste less time (harder than it looks!), i’m going to be kinder, I’m going to learn new things, I’m going to try and not let anyone down. i am going to be a better person, a better friend, a better friend to world whilst remembering it is the FIGHT that COUNTS.