Small changes

Time slows when the lights are fluorescent and the days are punctuated by the rounds of the medical staff.

My head of studies for my PhD is a woman who is internationally known for her creative-design- person-centred approaches to dementia care. She’s an Occupational Therapist, with a background in art psychotherapy, and a PhD in using Art & Design methods in enhancing care in care-homes.

So I was super stoked when she asked me to be part of 1 of her many projects (some paid work on top of PhD). She invited me to be part of a project where we will design a Dementia friendly eye clinic. In real life.

Yesterday we had a meeting with some service users (I hate this term); a carer and his wife who has dementia. We spoke about all of their experiences of the eye clinic, from everything from leaving home and parking all the way through to leaving at the end.

There were many flaws in their care, some avoidable, some just a mistake, some just part of the design flaw within the pathway.

What I discovered when we looked back at our notes was that the things we could make better for people with dementia – would actually make these things better for EVERYONE who uses the service. How crazy is that?

I remember a few years ago, I had some crazy neurological stuff going on and it really effected my eye sight – I’d get like flashes of white light in my vision and I lost some of my peripheral vision. I had to see the eye doctor a bunch of times.

It was crazy just how unusual and difficult it was to go through that pathway. Eye drops that sort of itched, and we’d all sit staring at a wall, packed in like a crowded bus down a dim dirty coloured cream corridor. You couldn’t see anything clearly, but there was loads of small text leaflets teasing you to try and read them on the walls.  Your eyes hurt from the light. When it was time for anyone to call you, you’d get up and not be able to see who and where they were calling you from. Then the actual examination of the eye is uncomfortable – you have to lean onto some medical equipment – and being small, my feet didn’t touch the floor, there’s no arms on the chair & you’r completely unsteady – and my neck hurt from stretching it out across a small table to sit my chin in the face of the eye doctor.

It felt undignified, and intimate and vulnerable and stupid all at the same time.

Once they made me sign to consent to something I couldn’t even read because of the eye drops.

And then when it’s all over, you leave – by feeling the walls around you – and trying to remember which way was out. When you finally make it back outside – the light is bright. But in an unfamiliar way – and navigating the world through blurred vision enhances a crazy headache of sorts.

That was my experience as a young-un. Someone who has pretty decent eye sight (or did).

Now imagine that experience for someone who struggles to convey pain, or issues. Who is confused? Who has learning difficulties, short-term memory loss. Who can’t read?! 

I can’t imagine how disorientating and how scary and uneasy it must be.

I’ve been missing my clinical aspect of being a radiotherapist recently.

I think it’s the team work and the patients I miss the most. So I’m really looking forward to being part of a team, working with patients and their families, in a clinical setting again – but this time my main aim will be to come up with & test & prototype cool, person-centered creative & critical solutions — whilst at the same time learning some cool new researcher skills. Mostly how to get something you make, and apply it and embed it into the system. This is a skill I am really missing.

From just 1 meeting, I’ve already paralleled some similarities  of things that could change within radiotherapy and the dementia care pathway — there’s just such a long way to go. But, I’m excited!

We already have 4 areas of focus, and ideas to prototype. It’s too early to share or know if they’re any good or useful. But I can’t wait to share with you guys our future work on this!

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Nearly another year older: 29 things to do by next year.

Tomorrow, I turn another year older into my late 20’s.  Slowly, slowly edging ever more closer to 30. It’s crazy because I still feel 21 in my head. I still get I.D’d for booze at bars and if I’m really trying it on, I still get Teen cinema tickets at the local Odeon. 

But my life is that of an 18 year olds. I still rent, I don’t even own a wok (this is going to change), no kids,   no pension. I’m still a student, albeit I prefer researcher  now (PhD). Getting really sick in my 20’s kind of funked things up a bit. I lost time for making and meeting people and things. I lost money, and I spent a whole-lot of it when I got it — YOLOing or trying to find cures for my fatigue.

By societies standards, I’m not a success. But in my own standards (and I think this is what matters) I’m relatively happy with where I am right now.  I mean, I am alive. I get to travel, I get to do what I love every day. I get to try and make a difference. And my life is sweeter than it ever was before, because the stakes are higher. I feel time is like an old friend who helps me to see things with much more clarity. I have incredible friends & family who are there for me, every-step-of-the-way.    

As I missed New Years being sick, and as I enter the year of Copper on the periodic table: I feel like I aim to see things differently: 

glass: more sea, less broken 

music: more live, less elevator

dreams: more lucid, less fever

flies: more dragon, less horse

fires: more camp, less brush

roads: more country, less service

slides: more water, less land

light: more moon, less brake

letters: more love, less demand

sins: more carnal, less original.

Here’s 29 things I am going to do this year

1.) stare at the stars with the people I love.

When I fell sick, my first night of wide-eyed clarity was spent  staring at the milky-way on the ballfield on an island in New Hampshire. USA, thinking about all the things I haven’t done & might never get to do. Now when I look at the night sky. it shifts me back to that feeling, being part of the universe, but also grounds me. I feel the weight of time. It’s beautiful, and technically we’re just staring at the past. What better thing to share with people you love? Time travel.

2.)  make my own ice-cream

When I stayed with Tizzy & Tara in Washington DC in 2011, we drunkly came home & I really wanted some ice-cream. All they had was Lavendar and honey. I thought it would be gross – but I was SO wrong.  chomped it all and felt guilty. I’ve never been able to find this ice-cream, ever again, since. I will re-create it this year.

3.) go to the coast of italy and draw the towns from the sea.

4.) design my own typeface/font.

5.) straddle the International Date Line

6.) tell my mom I love her

7.) Play the piano 

8.) run

because who knows when you might not be able to

9.) go surfing

10.) write & perform a song

11.) grow some vegetables

easy vegetables to grow, like.

12.) get a real christmas tree at christmas

13.) go to Japan

this will be a testament, Japan’s been on the bucket list for years

14.) learn to cook more new dishes than i  have ever done before

15.) do something I’m afraid of doing

16.) ride my bike more

17.) live in a world that loves all people

we should all aim for this

18.) budget

lol

19.) have fun without technology  

20.) take nothing for granted 

21.) try and stop feeling like i’m running out of time

22.) take more 35mm film photos

23.) do more for charities and help people more

24.) People

The most important aspect of out lives are perhaps the people around us. My goal is to stay in touch with family and old friends, and to constantly strengthen the bridges built over time.

25.) finally update my damn website

26.) see more sunrises and sunsets

27.) remember that what matters most is how well you walk through the fire

28.) pay my bills & debts on time

lol

29.) laugh at the odds 

**(+ bonus which doesn’t need to be said but: 30.) Enjoy my PhD)**

Happy New Year friends

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Break it down, build it up, make it better around the world.

I’m now officially in this incredible and super lucky position of sitting across multiple disciplines all at the same time; i straddle across being an artist, a designer, a healthcare professional, a researcher and a patient.  It’s super exciting but it’s also incredibly scary – even overwhelming.

I’m kind of unique in this respect.  There’s not that many of us hybrids rocking around in healthcare, or who are “out” about it,  but I think that’s going to change dramatically over the next few years.  Healthcare is building up towards a renewal, globally, to change from being just this service where you get things sort of fixed – and that’s it – discharged.  But it’s going to change into this service that is adapted to personal needs; both preventative and continuous care – in different models.  That the healthcare education model will provide art & design training in it too – that it’s not just all numbers and science – &  proper useful & enjoyable reflective practice training. It’s going to experience a (probably very slow but) beautiful renaissance – where things will be designed purposely with and for the user; whether that be the patient/citizen or the healthcare professional, using stories/narrative and lived experience and critical reflection in the process. That healthcare professionals have the tools to design things themselves too.

Whilst I am obviously very passionate about combining all of this together I attended a talk  last week by Elizabeth (Lizzy) Scott on the Femcare information strategy (Lizzy is radiotherapist leading this project) that’s undergoing within the radiotherapy department I train at.  I originally attended due to my passion for better patient information, but what this talk showed me was exactly the reason why it’s so incredibly important to think not just in terms of information; but the design and presentation of information and equipment is also equally as and incredibly  important in being able to enhance quality of life and treatment experience and compliance.

This Femcare information is aimed at patients who have had a radical course of radiotherapy treatment to the pelvic region. The side-effects of this treatment can have massive quality of life issues in the future for these patients, especially when it comes to their sex-life.

I believe, in general, we don’t talk enough about the effect of cancer on peoples’ sex lives and relationships, and their relationship with their body. Change goes deeper than the physical. It’s emotional. It’s psychological. It’s part of who you are. We know embracing the changes in intimacy can be one of the most challenging parts of feeling ‘you’ again. Butt issues like these can be – due to the very British nature of us – difficult to broach the subject – we may just brush it off – downplay it, really don’t want to talk about and feel embarrassed. We maybe really open to discuss it. But everyone is different and we need a strategy to reflect this.

The correct information early on is incredibly important in being able to facilitate better quality of life later on for these patients.  In the talk, we were given some leaflets – which had some pretty intense diagrams of how to use a clinical dilator, and of course a dry pastel rendition of some flowers  on the front to represent femininity? – how imaginative.

If you’re able to move past this leaflet, what comes next is the the dilators we provide – which are so clinical and intimidating and cold – as pictured below:

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I can’t imagine what a user group would say about using these after treatment – whilst I can’t stress enough that they’re extremely very valid and very important – and i’m glad we do provide them rather than nothing. It makes me think the people who designed them didn’t really *think* about the user – just the use of them.

Lizzy discussed how she – too – wanted to redesign the Femcare strategy,  including the leaflet and had done some research into finding better dilators that may be less intimidating but do the job. Her efforts were rewarded when she found http://pleasuresolutions.co.uk/  – a  company with an ambition to help people reconnect and explore new realities after cancer, sexually. Whose products are specifically designed with clinicians and patients and with Japanese production as pictured below (made from a gentle Unique SoftTouch material with anti-dust coating

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I’ve never seen such an obvious need for redesign and rethinking with empathy and the end-user than in this case.

Imagine what the change in outcomes and perceptions would be if we in the NHS used the latter, widely, in practice. I suspect it would only be much more positive with more compliance.

What all this reveals to me is that we – as HCP and as artists/designers/thinkers/researchers – should use our superpowers of empathy and prototyping. Underlying both of these is a commitment to learning — learning about people’s needs, learning through experimentation and trial, and arriving at a solution through  discovery.

Creativity isn’t being used to its full potential in healthcare today. There are many other creative disciplines that have a critical role to play too. It is critical to create the conditions in the healthcare industry for designers/artists — along with healthcare ‘natives’ — to put the disciplines of empathy and prototyping into action.

When sharing my thoughts with the department (when I was asked to, lol) I said we make children’s hospitals all more accessible and aesthetically pleasing – why don’t we do that for the general population because it’s obviously do-able. They instantly jumped on, “well they’d have the money to do that”. But the fact of the matter is – if you’re spending the money on doing something anyways (as they were in this instance), or paying for clinically intimidating equipment that has obvious potential negative user-implication – it is either cost-nutural or at least more cost effective in the long-term. We need to stop blaming funding as a reason not to do something, we need to see past the short-term. Co-production/design can help us save money in the long-run through impact and investment. 

I feel like I am just at the very, very beginning of this journey but I am committed to this change. I believe in the power of creative practice — people-centered design/thinking — to radically transform healthcare.

Creative practice has the power to:

  • share and curate compelling stories that reframe issues.
  • I have the ability to synthesize complexity down to actionable challenges.
  • open up real collaborative practice
  • reimagining tools that enable rather than disrupt the healthcare workflow and empower patients/carers
  • advocating for the patient through new services, communications & products.
  • and much more.

We’ve got far to go but here’s my first and most important challenge as this creative hybrid healthcare professional:

1# People feel understood and cared for.

 

I can’t wait to see what Lizzy does to re-invision and re-invigerate Femcare to help enhance patients quality of life. Go Lizzy!

The world isn’t yet done.

Being freelance and working from home, I slowly turned into a sucker for cooking shows like Masterchef, The Great British Bake-Off, The Taste, Come-Dine-With me, and almost anything on the Food Network. No cooking show was too long or too low-brow and underproduced for me.  I thought it was probably an age thing – I never watched this stuff when I was younger: turned out it was just a love of different foods (probs due to aging-maturity) but I think it was more to do with avoiding doing work/relaxation thing. This became clearer as a healthcare student – I watched these shows even more religiously. The MasterChef series is ALWAYS on when I’m trying to revise for exams or have 100 deadlines. Trying to avoid reality.

One day after clinical placement, my housemates and I sat down with our food to eat and watch food on the TV. This was a show about a bunch of chefs trying to make it in this Italian restaurant/bakery engrained in tradition and processes. One of the young chefs tries to take a bunch of short-cuts and the older chefs catches him – and tells him off – saying, “that’s not how we do it here! We do it the long, hard, stupid way”. Which is stuff like not using yesterdays bread, making fresh new bread instead, making the soup from scratch. ect ect.

And this really stuck with me. The Long-Hard-Stupid-Way.

I think I do everything the long, hard, stupid way. I often get told this. If there’s an easy or a hard way – you can guarantee that i’ll find the hardest way first. My mom says it’s because I don’t have any common sense.

But I started thinking about the routes I’ve taken to get where I am now. And I wonder if I could take an easier path – would i have taken it? The answer is probably no. And I started finding pleasure in reflecting upon this rough, hard-stupid-way path.

There’s a whole spectrum of – here’s the long hard stupid way  – which is ultimately the way I seem to be compelled to make & do things, and then at the other end we have super efficient way over there.

When you work the long hard stupid way – it looks a lot like worrying, scratching new ideas, endless notebooks, trying to learn things you’d never dream of  doing before, it’s a lot of others looking at you like you’ve got it wrong, it’s staying up late and then having to get up early the next day (killer), it’s not returning your library books on time,  but all of these actions are inspired by just caring a lot.

That’s not to say you can’t be efficient and not care deeply – but i, personally, don’t know how to do that.

But behind the long-hard-stupid way is a gift. It’s a lot of heart.

It’s staying up late, and sketching out plans and learning how to code smart-phone apps (FYI – it’s not the same as making a website which I originally thought it would be. Just because you know italian doesn’t mean you’ll be able to speak french), and taking the time to make it – without ever thinking about having a plan to make it accessible. Turns out making apps is a rollercoaster.

It’s going through a really testing health-issue, that literally breaks who you are – and makes you question everything you are & your worth– and going through the system that doesn’t know what to do with you – because you’re not a child and not an old adult – and instead of being a normal person and try and change the system from the outside, you decide to re-train and try to make the difference yourself,  inside the system.

It’s deciding to apply for things you’ll probably never get accepted to do – for the love of learning new things, and the process, and meeting new people – & ultimately hoping that the rejection and the attempt itself  will lead to more change and things to build upon for the future.

And most of all, it’s deciding to do all of it together – at once. Long-hard-stupid-way.

Freelancing is often the long-hard-stupid-way. You’re never sure how much work you’re ever going to get. So you just say yes to pretty much everything, just on the off chance you hit a lull and therefore you’ll still have some money coming in.  All the while – burning yourself out. The thing is, you always work more hours than you get paid to work. Life-work balance is hard to strike. And you can never officially take a sick day.

Working alone is hard. Being your own investor is hard (& stupid sometimes). And running all of these things together – teaching, app making, website designing, conference drawing, illustration commissioning, clinical-student-ing, academic-working – all while feeling crappy & being broke- is super long, hard  & stupid – and to do it responsibly is even harder.

Learning to work your life-balances out is hardwork. And it’ll probably take you some long-hard-stupid-ways before you know when is the right time to say yes and when to say no. A friend of mine when i was feeling so awful from fatigue & I felt like i was letting people down told me – you gotta say no if you really want to say yes.

Would i have ever wanted to go straight into healthcare from school? The answer would have been hell-naw. I didn’t have the empathy. I didn’t have the experiences I have now. I needed to experience the hardship to gain the drive.

So even though the long, hard, stupid way is just that, what it produces is something cool. When we work this way, it sort of gains an empheral quality. It’s sort of in the air – everything always feels up in the air. Whenever we make things this way – either for ourselves or for other people. There’s some kind of value in that. And that value exists outside of commericalization or money. And I love that. It sort of becomes a gift.

The thing with gifts is that – you have to be given a gift. You can’t ask for one. The more a gift moves, the more value it gains (has it been passed on through the family, does it fill a gap – a representation of a bond, is it using someones time) — like wise – the more work you put into something – the more value is gained. Ultimately a gift  is a sacrifice.

Essentially the best work I do is when I say something or do something or give something , to really help people (in every/any way), or to people I really care about.

But the biggest potential is that – Doing things the long, hard, stupid way – you learn all sorts (mostly wrong things) – but you get a gift. Or you create a gift for others.

It’s that you can build a foundation or something for people. My practice is driven by my  belief in making things for other people. Whether that’s making time to listen and to help, making something to make people think, making something that will better their experience, making something that brings people together, to make someone laugh or feel heard. By making something for other people, by considering someone else it moves the edges of our beings closer together and we gain more overlap in the process.

And we should look at these overlaps, to talk to each other. to know what we all have in common and to create more situations to create more commonalities. And by doing this we can some how grasp the wonder that is so hard to grasp – of what lies in the heart of making – and making things the long, hard, stupid way.

And when I think about all the awful things this government is doing and pushing through – from ruining the NHS, and demoralizing Junior Doctors, to entrenching a future generation in 50,000 + debt for education, to cruel benefit changes, to making students criminals if they can’t pay back their student loan immediately after they’ve finished university, to trying to get rid of our human rights, to airstriking syria, to stopping free dinners for children who can’t afford to eat. It makes me so, so, so angry. And even helpless.

But the long, hard, stupid way is all about continuing to try, push and make something – we don’t care about barriers – or the challenges – or even the outcome: the gift that comes out of making things for others shows and says for  us to stop, look and look around us. It says everything is possible again. And the world isn’t yet done.

If we can find the courage, and the strength to make things (whatever that is) for others, we can give these gifts back to one another. There’s so much more what unites us than what separates us. People power goes a long way – even if its the long, hard, stupid way.

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1 year older, Casting Lines.

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

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

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

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

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

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

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

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

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

Time: Before I’m Gone

Time.

Time fascinates me no end. I’ve read a lot of theories about time.

Can you remember when the 6 week summer holidays used to feel so long and hazy and hot? And now, before you know it, it’s already summer when it was only just Christmas. And you’re left thinking? Whoa, time!?

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. It’s kind of a sad idea. But it does put things into perspective. We should be doing more things that are memorable! YOLO.

Another theory, by Paul Janet, is that we perceive time as relative to the ‘absolute’ time that we can compare it to. For example, when you’re born a day will feel MEGA long because it is literally ALL of your life. By the time your 50, a year will be 1 50th of your life. So that could explain why summer holidays felt longer than they do now, and waiting around fro christmas felt like a small lifetime. Because in time-terms – it was.

I’m not too sure on the latter explanation, as last summer when I was trying to learn the ropes of clinical radiation oncology and juggle the worst headache – the weeks felt long. Oh so very long. Now I know what I’m doing more, this summer has flown by. The years do feel shorter though and so I believe that time is a combination of both of those theories.

Money and time are both saved and spent. The more money that’s in the market, the less it becomes worth. Similarly, when you become aware of your time – and if you think it’s running out – or becoming shorter – the more worth it seems the accumulate. However, money can be circulated, you can get it back by many means, but time is fully-spent. Once time is gone, you can never get it back.

Death is always a surprise. No one expects it. We are never ready. It is never the right time. By the time it comes, you won’t have done all the things you wanted and should have done.

Sometimes I feel like I’m cheating time. I’ve been run over, fallen from buildings, been in a fire, and more. When I fell sick – I genuinely thought my time was coming to an end. I have days and weeks where I believe I’m going to live many years into old, old age. And then I have some days where I feel so poorly, and have the weirdest shit happen to me that I wonder if I’ll be here next year.

And then I have days – like yesterday – where you get a text in the middle of the train station and it literally takes away your breath and makes you forget how to breath.  I didn’t know what to do with myself. It makes you realize we care too much about things that don’t matter much. I’ve preached this before and often. Because when I’m in my everyday cycle – where I feel ok. The weight of mortality – that painful reminder – isn’t as ever present compared to when I’m in great pain.

Now I’m suddenly feeling this sense of urgency, again. For everything. Especially to spend more time with my mom & my nan & my bro, and my friends, and the world; to try and see them sooner rather than later.  And to correct all the wrong doings I’ve done (just stupid teenager-y stuff) It’s a lesson I keep on trying not to forget (and sometimes I do, and that’s bad).

All this has made me think, it’s not so much that we have so little time; it’s that we have so little awareness of time itself.

So I’m preparing to leave things in a way that if anything does happen to me – sooner rather than later, I have left my mark – I’ve left a trail – of something. I’m going to write blog-posts – letters – cards – emails. Sporadically. Thanking, forgiving, offering, planning, helping, laughing, grieving, making up for lost time and maybe even cheating time in the process.

As my nan says, “It all feels the same,”. Let’s not get caught up in meaninglessness. And let’s enjoy every second we get – together.

To the importance of time & what gives it weight.

Much Love, SMIZZ

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!

2014 moments: Hopes for 2015

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

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

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

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

That’s a little bit of everything good.

—->

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

2014 moments:

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

Jan:

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

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

I did some cool work for TalkTalk

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

Got Shep – the awesome German Shephard doggie!

Feb:

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

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

March:

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

Drew more stuff for TalkTalk

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

April:

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

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

May:

Saw my mom get married! Yay!

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

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

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

June:

DREW THE AMAZING SHEFFIELD DOC/FEST!!!

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

July:

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

Was in our first ever HUGE house fire.

Started skateboarding again because my bike was fucked up.

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

Designed a website for my friend and her exhibition at YorkshireSculpturePark

August:

Passed palliative case discussion.

Got a super dope mark (SURPRISINGLY) for ePortfolio

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

Got Shingles AGAIN.

Got another old-puppy – Finnley the Border Collie!

September:

Was made a recluse because of Shingles.

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

Did my first Pecha Kucha Talk! YAY!

Had an awesome house party!

Gemma left for New Zealand.

October:

Drew TEDXSalford

Drew stuff for University of Derby

Had an awesome Halloween pumpkin carving party at Charlottes!

WE ORGANIZED & HOSTED RAD conference successfully – YAY!

November:

Drew stuff for Uni of Sheff

Drew TEDXSheff

Had the bestest Thanksgiving!

December:

Went to Copenhagen & saw so much awesomely designed stuff!

Had an awesome Christmas!

HOPES FOR 2015

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

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

Thank you, thank you, thank you.

See ya 2013, Ahola 2014!

2013 was one crazy year. It was both insanely busy and then had weeks, if not months where it felt all I did was get up around 1pm, try and do some work – still feeling hungover- a heavy fatigue that I just can’t shake (even though I hadn’t touched liquor in months)  and by the time 5:30pm had come around I was running a bath & was already in bed by 7pm. I had literally 4-6 hours out of bed for weeks at a time.
Equally, when I had to get up to go to work or on my better days, I did LOADS of amazing cool things. I drew at the International Health Expo in London for NHS Commissioning Board, I drew loads of other things for them too, I drew at my job in London a few times, I drew INSIGNEO a new cool NHS & University of Sheffield research center. I drew other things for the Uni of Sheffield, I drew TEDxSHF, I drew Doc/Fest, I drew loads of other things too that took me around the UK. When I wasn’t doing that, I was doing a bit of teaching or designing websites for a few art things. And when I wasn’t doing that, I was going to interviews, spitting feathers about whether I had done what it needed to get a place at Uni to study Radiation Oncology.
The winter months turned into spring which turned into summer. My bed felt the same, and lets not forget how cold last year was (although judging the weather today – I’m like daaaayuuumm- IT’S COLD). I went back to America, had another super summer – which was to be my last- but this time with 2 of my fellow comrades and we roadtripped across the USA.  I came back, had more medical shizzle, went and enrolled onto my intense healthcare course. Drew some more stuff for lots of people! I’m now working on a few things for TalkTalk. And went to Paris.
The new year always makes me real nervous because I just don’t know what is in store… Great things can’t last forever, right? But all I can do is hope, and work hard. Keep my eye on the ball and take chances.  Here is to REALLY hoping that my prognosis for 2014 is even better. Thanks for helping make it so, you guys.
Each year I do a blog setting what I want/would LOVE to happen in the year ahead. It seems to kind of work. Who knows whether it would have happened  anyways or by writing it, it becomes a self-fulfilling prophecy or indeed if it was because I took the time to write this  list and it’s magic! (so taking no chances on anything). Here is my new list. It’s pretty much the same as last year with some re-thoughts. But I can’t stress enough my main goals are to:
STUDY-HARDER
BE MORE MOTIVATED
NOT WASTE TIME
WORK HARD (ER)
MAKE A DIFFERENCE (IN A POSITIVE WAY, SOME HOW)
MAKE TIME FOR FRIENDS
HELP OTHERS
HAVE MORE FUN
ADVENTURE
WHAT I WISH WISH WISH for in 2014: Keeping the same values/wishes/hopes/resolutions as last year:
  1. That my mom, bro, nan and friends are all super happy, heathy and that NO ONE DIES! Including ME! But I would die instead of the above people if it has to come down to that.
  2. Last year, and the year before that I asked for a job  that I enjoyed. I ended up getting at lots of cool small ones!  So thank you 2013 for an amazing job year;  PLEASE New Year help me find these golden eggs of opportunity and help me reach my potential. Help me make GREAT/BETTER impressions at the places where I currently work. Let me move small mountains. Please find extra work to fund me through uni. Please find me more amazing opportunities. Let me be BETTER. WORK HARDER. Even more so, PLEASE provide me with opportunities to help others and to make a positive difference! Esp. in radiotherapy.
  3. Make extra time for friends, make sure i actually see friends who live else where. Don’t let money define this.
  4. This year I need to be more motivated. Be more time-focused. Less TV and more drawing. More studying less sleeping. More blog work updates, less scrawling through the Facebook time-line. This is also very, very do-able if I just organize my priorities too! I need to make more great art-works rather than just research and develop ideas that never get shown. I need to remember the stuff I learn in class!
  5. I really really hope that i can make a positive difference this year, help others that need it, and make the world a place i’m proud to live in.
  6. More teaching opportunities PLEASE! This is a must if i want a chance at achieving number 5!
  7. I would like to interact with people better, so I can communicate effectively and be wayyy more better and likeable esp for clinical placement.
  8. As with any artist, any exhibition/residential/print opportunities no matter how small or little they may seem all adds to the endless cannon of critical thinking and art practice!
  9. I need to become more motivated to learn my material… I can only make the difference I want to make if I am disciplined enough to sit down and dedicate the time to master my craft. Please give me the strength, the focus and the motivation – and mostly the energy to do this!
  10. I just want to feel normal again. Like not have bone ache, or nightsweats, where i could get up in the morning and not feel insanely hungover despite not actually touched alcohol in weeks. I want to not feel SUPER tired for NO reason anymore. I want to be fit, i want to be healthy again, i just want my body and health back from circa 2006 (that was a good year ha!) I’d even take health back from circa 2010.
  11. I’d like to take up running, agaaaaiiiinnnn.
  12. I know I can’t travel like I have done previous years, but I would absolutely love to visit USA again & do lots of small local EU travelling like to Italy!

Thanks 2013 for a dope year, 2014 I know you’ve got my back. Here’s to hard-work, game changing, trying to stay focused, fighting against the ordinary daily events, challenges and finding ways or re-focusing when things might not work out exactly as we might want them to. TO FRIENDSHIP yo!

I want to work for something other than myself:

I’ve been keeping something secret for a while now. Mainly because I don’t want to jinx myself. And whilst it’s more-or-less official – I still have to pass ‘professional requirements’, which are things like CRB checks and the dreaded health-check. But – hopefully – if nothing bad happens & I pass all my ‘professional requirements’, in September I will be going back to university (as the Americans would say ‘med-school’ -sounds so cool) to study  Radiation Oncology. Yep.

This doesn’t mean that I’m giving up art, or indeed giving up on art. Quite the contrary, – if anything I believe this will become an extension of an already multi-disciplinary practice.  Art’s beauty lies in its ability to spread far-and-wide into other disciplines. Good art transcends something. I will still work as an Artist. I will still make art. I will still do commissions for clients – perhaps not as often as right now. But i’ll still be doing it – and I will still be teaching & working at SHU. Everything will be the same, except I will be studying on the side.  I’m always an artist first & foremost. Art is, and will always be, my passion!

Not many people know about my decision (something I decided  to commit to do just under a year ago now), and nearly everyone who I have told looks shocked (not in a good way). “Why? I don’t get it?” They all ask. (After what is Radiation Oncology?)

There’s many reasons for this. You might call it a quater life crisis. (it’s not but seems it).

After being told you might have Cancer, something fucks with your head. Like the rug gets pulled from under your feet. You might keep it together but you feel fragmented, you realize nothing at all is ever certain. You rationalise everything. You’re  completely in denial.  You’re strong – not only for yourself, but for your friends & family who are worried. You don’t make it a big thing, even though I think it’s something you just want to talk about all-the-time (or never speak of it?), just to make sense of it. But quiet doubt seems to consume part of your alone time.   The questions and the uncertainties seem endless.

Slowly I came to understand what could/might be/might have been happening. Part of this was writing on this blog to help let the pain out and I decided not to hide behind the mystery illness, but to go out into the world and live as best I could. In my spare time, I researched EVERYTHING about all different types of Lymphomas. The survival rates, how people discovered it, how it’s super tricky to diagnose, how it spreads, it’s genetic make-up, treatment plans, ect, ect.  After I read everything available on the first 10’s of pages on Google & many websites later, I started looking at other blood-cancers. I was fascinated. Curious. I wanted to know more. It became somewhat addictive.

I’m currently still having a bazillion tests, but the journey has already left its mark on me forever. I feel like a different person. It sounds cliched and it sounds weird, but I literally think and feel differently. Things I thought were important before seem trivial now. Before, my artist ego always wanted to be stroked. Now, I’m just happy that I’m doing what I love and meeting awesome talented people in the process. There’s no necessity to do a billion-things-at-once. It’s okay to smell the roses.  I have this whole new level of empathy that I never had before. Nearly every experience/emotion has been heightened. Which leads me on to reason number 2.

Since October last year, I have had 4 friends (or friends loved ones) diagnosed with Breast Cancer. My reaction to finding this news out, is completely different now than from a year & half ago, before all this crazy health stuff started with me. I don’t know why the reaction is different but now I feel like it’s personal – even though it’s so obviously not. It’s just a genetic systematic failure, that’s random or could be trigged by an environmental factor – but even that is in luck. 1  in every 3 of us will get cancer at some point in our lives.

Cancer nearly took my moms life in 2000, it nearly took my friend’s life, my friend’s moms life, the person down the street, on the bus, in the supermarket’s life – and i’ll be damned if it tries to take mine. This personal alignment has made me realize that I want to work for something other than myself, and i know i gots the skills to help. I want to help make cancer be no longer scary. Like getting chicken pox or something. I don’t want us to have this hurt. Because, the thing is, if caught in stage one, and even stage 2- They’re completely curable now! Which is awesome! But we often misread the early signs. (You gotta check-yo-self-before-you-wreck-yo-self!?)

Reason 3. In radiation Oncology it’s providing exceptional patient care without exception through developing & delivering radiation treatment plans & providing emotional & social/psychological support, it’s amazing research to cure or detect cancer early, it’s working with amazing advanced technologies & engineering technology. It’s working collaboratively, within a multi-disciplinary team of medical professionals, equally, doctors-nurses-nuclear physicists, ect – to create the best line of treatment to being cured (or to ease symptoms in palliative care cases).  I know that my background in art & technology will provide an interesting spin onto the research in this area. For example, 3D Printing (something we’ve been doing through the GRAVITY lecture series project) would be an awesome & much more easier/less stressful way to create moulds for patients for their treatments. BOOM! I have way more ideas. My over-all goal is that I want to go into the research side of it. It’s much easier to take what I learnt from art & apply it to oncology research, than vice-versea – but i’m super sure it will start to influence my work in someway.

The truth of the matter, however, is that when you go through some crazy dramatic life experience – such as this or something else. Things change. Even if you don’t want them to. When you live with this nagging small thought in the back of your mind that you might be dying, you feel like you deserve to spend the rest of your life on permanent vacation. And the reality is, you can’t. You must return to real life. I’ve been  finding it a bit difficult to go back. It’s like, how do you slip back into the ordinary world, and your ordinary routine and being your ordinary self when you don’t feel like yourself? My world view has been shifted, thus my whole line of perspective. It would be an untruth if i continued on being & making the exact same work.

I didn’t think I was going to get accepted onto an academic program this year. I thought that they would have made me get more science knowledge. So I was genuinely shocked when I got offers. I’m proud of myself for getting accepted to all 3 universities I had an interview at. I got interview invites at all 5 places I applied to. It’s all funded by the NHS so places are small. Once I got my unconditional offer from Sheffield, I withdrew from the last 2 interviews in Cardiff & London South Bank and accepted the S-Town. So here’s hoping that nothing bad happens between now and Sept & I pass my healthcheck – something I’m super nervous about since I’m still feeling really poorly.

I can’t explain my affirmation with this new area, other than it has poignant roots – and I know through it – if successful – I will be making a genuine difference. (The very thing that all I ever wanted to do was to make a difference). It’s going to be hard. It’s going to be less sexy. But I genuinely can’t wait for this new challenge. I want to work for something other than myself.  But remember guys, I’m still an artist – and will ALWAYS be an artist. Please don’t forget that.

It is to this end that I am committed to art but equally committed to creating/working on life-saving-research & I hope to make sure that  we work on developments which mean we will never loose someone young (prob up to about 80 years old) to cancer in the near future.

 

Photo on 27-03-2013 at 23.19