Shame, Gratitude, (health) Care & Resilience: Working in Art & in Research

Shame. It’s a shameful thing.  To feel ashamed. It makes you feels weak. It feels like you’re kind of worthless. The other day, my GP shamed me. He told me that I just “need to suck it up & live with it”. (it being bad-ass headaches/migraines/face/shoulder pain) I’m not sure he meant to, but he did. I wasn’t even there for that. He tried to quickly move on – but it hung in the air & it is now burnt into my mind ever since. I keep replaying the moment inside my head of all the things I *wished* I had said in response to him. To call him out. But I stumbled over my words and I itched my head as I usually do when I feel socially inept and at a loss of words as all of the emotion came over me at once.

This moment, which I had gone for antibiotics for a chest infection (which i got!),  all came down to him reading some clinic notes that the physio had written. She had said that I take (over the counter) codeine about twice a month  for a 5-year chronic headache & INTENSE neck/face pain, but only when its pain scale 8+ & it’s grinding me down. And it’s true.   The neurologist prescribed me stuff for it 3 years ago – but the GP refused to keep on prescribing it. we tailored the drugs off – and now I just live in pain. I get it. I understand why he doesn’t want me on these drugs. It’s chronic pain, it’s probs a bit psychosomatic – but i do have shit wrong with me that would actually give me chronic headaches like hypercalcemia that gets so high sometimes I have to be hospitalized.  And also like, migraines are a real thing! But he doesn’t see that. And again, I do  it get the “no drugs thing”. That’s why I have adapted my own coping systems. I know stress makes it worse, Physio helps my neck & shoulder & gives me really good relief for a decent amount of time, and I know I need to sleep-in at weekends to give my body *Something* to building itself back up. I know the GP won’t give me shit for it – so I take the odd over the counter pain relief? So what!?  If he wants control over the stuff I am taking – then he should offer the support. But he doesn’t – so, I guess that’s structural iatrogenesis for you.

I have to take the pain relief when the pain grinds me down so much that I feel COMPLETELY worthless – like the pain makes all my left side of face feel numb and sometimes I can’t actually get language out. It’s embarrassing. My job is about communication – and sometimes i just can’t communicate properly with people cuz the headache/face numbness is so bad i loose my ability to grasp the correct word – or know how to spell it? It’s a weird sensation. It’s like having the worlds slowest seizure. But it goes on FOR DAYS. WEEKS. Even months if it’s SUPER bad like it was back in the radiotherapy training days.  It literally makes me feel like I want to kill myself – because anything is better than not feeling like you’re alive. I joke about this with friends at work. They laugh but pull me up on it. “You’re not serious though, are you?” they say. I just laugh and & say “i don’t know” because honestly on those days, i just – don’t know.  We get back to typing on our laptops and pretend we’ve not really exchanged this odd truth because it doesn’t sit well with who i am.  When the pain is manageable – i’m like the chillest, generally happiest person you’ve met that day.

The GP – a dude who I really respect & admire – made me feel like *proper* shit by shaming me like that (again esp when I didn’t bring it up!). I carry the shame around with me all the time. It weighs me down, and the dirty secret of mine.  I don’t need to hear to suck it up from someone who is supposed to at least be pretending to help.  So I was like, what’s even the point, right?  And It’s not the 1st time he’s shamed me. I can’t blame him directly tho. Healthcare is historically built upon shaming women (Especially) .

I’ve been making my medical shames into comics (this 1 isn’t finished yet). Maybe one day, i’ll give them to my GP.

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So what’s this shame gotta do with everything else? Well, this is the thing. I know that shame is the opposite of art.

When you live inside of your shame, everything you see is inadequate and embarrassing. The pain you can’t seem to get rid of.  A lifetime of traveling and having adventures and not being tethered to long-term commitments looks empty and pathetic and foolish, through the lens of shame. You haven’t found a partner. Your face is aging. Your body will only grow weaker. Your mind is less elastic. Your time is running out. Shame turns every emotion into the manifestation of some personality flaw, every casual choice into a giant mistake, every small blunder into a moral failure. Shame means that you’re damned and you’ve accomplished nothing and it’s all downhill from here.

Working in art and academia/research kind of makes it super easy to fall into shame. The way these worlds work – defaultly – can make you feel pretty inadequate at times. I mean, anyone who has received the raft of reviewer #2 will know what I mean.

Shame creates these imaginary worlds inside our heads. This haunted house that I have created is forged from my shame. No one else can see it, I keep trying to describe it to them. I find ways to say, “You don’t want any part of this mess. I’m mediocre, stupid/boring, and poor. Do yourself a favour and leave me behind.” Sometimes I think it’s because I want to be left behind, though. That way, no one bears witness to what I’ve become.

I’ve gotten super lucky recently though when it has come to work, somehow. I’ve been blessed with an incredible opportunity to do a commission for Yorkshire Visual Arts Network (YVAN) – on creating a work based on snapshots of working in Yorkshire and Humberside as an artist.   And I decided I’d look at this iffy word Resilience.  It absolutely does my head-in, does that word.  It’s a new buzzword. And it gets banged around in scenarios where people are in really stressful situations: an overstretched NHS, an underfunded school, understaffed university, a over-stretched and increasing demand public sector. The reasons why people are stressed & burnt out & things are taking longer *isn’t* the underfunding – no – people just need to be *more* resilent. Here this is the placing the structural injustices onto individuals – and it turn it shames them too.

The North, traditionally and currently, gets less funding than the south. But – it’s cool because WE ARE RESILIENT.

Over the past few weeks I have been digging down deep across various areas: Sheffield, Doncaster – soon Hull and Withernsea. A bit of Huddersfield. I’ve been taking documentation, talking to people. About labour, about art, about making, about worth/value/time.

But I am left more inspired than I first thought I would be.  Every single conversation has ended up about being and providing some sort of care. I am refreshed. This wasn’t what I was expecting to find. I had chosen these specific people because I knew they were doing something special, and was responding to these structures that build shame around us all. They are responding with a resilence built around care.

Over the past few decades the individual, the self, has been at the center. But I’m finding people who are leading us toward a culture that puts relationships at the center. They ask us to measure our lives by the quality of our attachments, to see that life is a qualitative endeavor, not a quantitative one. They ask us to see others at their full depths, and not just as a stereotype, and to have the courage to lead with vulnerability. These  people are leading us into a new culture. Culture change happens when a small group of people find a better way to live and the rest of us should copy them.

I am excited to share this new body of work (still in the process of being made) with you – but the website will be shared with y’all soon.

All of this has made me see that we all need to discard some of this shame that we’re carrying around all the time. But even if we can’t cast off all our shame that quickly, through the lens of art, shame can become valuable.

When you’re curious about your shame instead of afraid of it, you can see the true texture of the day and the richness of the moment, with all of its flaws. You can run your hands along your own self-defeating edges until you get a splinter, and you can pull the splinter out and stare at it and consider it. When you face your shame with an open heart, you’re on a path to art, on a path to finding joy and misery and fear and hope in the folds of your day.

Instead of thinking what needs fixing? we need to be here instead. We can build a new kind of existence, one that feels small and flawed and honest, but each day we can accumulate a kind of treasure that doesn’t disappear.  A reminder that you are alive. And you’re worthy and valued and seen. Chronic pain, citations, published journal articles, bad reviews and all.

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(In)Visibility and Art [& suffering]

Today, after 9-10 days of a horrific infection, I found myself feeling human enough to do some actual work. We’re organizing a conference about art and visibility, my PhD friends and I. More info coming soon! So I started writing the stuff we need to move forward today.

But what it made me think about was visibility within healthcare, and illness, and art.

I started thinking about Greenberg ( visibility of the aesthetics of experience), – and then about  the Cubists and other Post-Impressionists perspectives being  particularly poignant for illness and suffering.

But contemporarily, how  are we and can we understand someone else’s pain or convey our own to others? How do we make sense of the nonsensical, whether the chaos of life-as-lived or the inscrutability of dying? How do we answer the questions “Why me?” and “Why now?” when we are diagnosed with disease? How do we paint what we know is there but cannot see?  These are heavy questions which lie sullen at the bottom of every action within my PhD enquiry. Modern medicine, like much pre-Impressionistic art, tried to square this circle by instituting a technical and professional gaze that filters out the ephemera of the individual in order to identify and name what is hidden by opaque bodies (see, of course, Foucault 1994).

But this is not arts aim; it’s not a reductive attempt to discover the building blocks common to all landscapes or buildings or humans or musical instruments. It’s to uncover the essence of a thing, that particular thing, in order to reveal more.

Our representations of disease may actually conceal even as they seek to reveal. We know that socioeconomics and other social determinants (e.g., discrimination, exposure to violence, lack of education and social support, etc.) are tied to health and risk of illness and disease. We also know that socioeconomics and other social determinants affect prognosis and recovery. (Read Michael M’s The Health Gap for more of this)

Although the media love to highlight the enemy on our borders threatening to disrupt our safe worlds insulated from many of the realities of danger and suffering, it is actually our capacity for self-destruction that constitutes our greatest foe: poverty, poor nutrition, lack of access to care, neglect of mental illness, climate change, and war, both declared and undeclared. But far easier to wind up a distant epidemic and see a remote danger to ourselves (while thousands die in a distant place) than address our real threats. Despite many genuine humanitarian responses from wealthier “first-world” countries, it is still clear that we have primitive protective responses (at home and abroad) that largely ignore the real wolves at the door.

As the NHS looms on a crisis that was caused my a greedy, beaurocratic , irresponsible government, and Brexit heightens tensions, and Donald Trump’s inauguration starts to truly loom ahead, I got thinking.

Thinking about  all of this, I wonder if art is our tool to help both recognize suffering but also help build bridges with communities we have trouble connecting with due to these issues.  If the digital world fosters isolation, what evokes empathy? Which of our personas do we believe in—our social media portraits or our reflections in the mirror? What are the consequences of a digitally-created society in the psyche of the global community? Art *can* cross boundaries, social class, geolocked nations. It exists in between physical, real and the social-digital world.  It links us through history, makes the other seem friendly, it can hold up a mirror when everything else seems shattered and untrue. Art explores the complicated yet timeless questions of influence, superficiality, and powerlessness.

When I was first an art-student, I remember finding and learning all about this activist art history. From Ad Reinhardt creating “communist” comics under a false name and being investigated by the FBI, to more direct examples such as the Gorilla Girls, and PAD-D groups. They made work with a political edge.  It was so exciting! I wondered about how awesome it would have been, to be growing up in such a polarized and politically difficult time and then being involved in such grassroots political activity and art being the tool, or the process.  Almost a license to get it out there and be archived for the future. But that same political drive, was also given to the artworld too – Gregory Scholette of PAD-D continues writing about art and political activism with his artwork representing his ideals and holding the artworld accountable for its Dark Matter, Reinhardt wrote lots of essays – as published in “Art as Art” with his disgust of the commercialization of art.

Of course, now I found myself, in a much different world than 8 years ago where hope resided, and people were less obvious and less aggressive with their hate. Where politically, things all felt relatively stable and fine. I have since lost my political art naivety that I had then, and I don’t feel the same excitement as I did when I first found it —- but what does remain is my gut feeling that art CAN make a difference, and my passion in the use of criticality esp within a political art canon. Art can be urgent and important and poignant.

I wonder about all of these experiences, and lessons. And I think – yeah, it’s our turn to make the invisible – visible. We are traumatized witnesses, some of us accomplices, groping about in the gap between passive outrage and mobilized action. We are both: perpetrators and victims, objects and subjects endlessly exchanging roles.

It’s our turn to show that mirror to those who can’t see a reflection. It’s our turn to help people practice empathy, to feel less powerless, to make people accountable, to stand up for what is right – and I think it’s about time the artworld got out of it’s comfort zone.

I’m not sure what that looks like for me.  Some artists are already doing it. But our Art is about changing the world, rather than study how it is. It’s not just about making things, but making things happen. There is much proof out there that our common community has not been relinquished.

Is art sufficient to the task of unpacking these contradictions that lie within our society – or should it complicate matters further? Such questions are unanswerable, but we shall see and we shall do.

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Love Is Love Is Love: Working To Make Things Better

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

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

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

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

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

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

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

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

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

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

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

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

Living and giving kindness is the best revenge. 

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

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

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

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

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

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

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Taming the beast in a complex system

Last week I had my first medium-plus allergic reaction to Shellfish (I think). I didn’t even eat it, I just ate rice that had been cooked with it. The kicker is, I don’t even LIKE Shellfish.

Literally within an hour my face swelled up (not like Hitch style but pretty bad never the less) & my throat became ridiculously itchy & sore, and I became wheezy like when you have an asthma attack. Needless to say, i wasn’t best impressed with this new hyper-sensitive immune system of mine. I hadn’t been to see a doctor in literally months, and i was hoping to keep it that way. Damn.

I had to go to the urgent care center, where I was given steroids, more anti-histamines, and a GP appointment. My GP prescribed me my first EpiPen, and a referral to an immunologist.

Today I picked up my EpiPen. I’ve never seen one up close before.

My GP gave me strict instructions about how to use it, & that I can see the practice nurse to show me how, and that I should call an ambulance if i use it & that I’ll always have to carry it and anti-histamines with me for the rest of my life now “just incase”.

But what struck me was the design of it.

It’s really quite big! And I wonder how smaller people (kids etc) carry their EpiPens about if they don’t bring a backpack? Its design is a bit impractical. They’re reliable, sure. They’ll buy a patient who’s in the midst of a severe allergic reaction a few crucial minutes to make their way to the hospital.

But they’re also bulky. Their epinephrine solution isn’t particularly shelf-stable, and will easily degrade in temperatures that are too low or too high (too cold in a bag in the winter? too hot in a jeans pocket perhaps?) and its expiry date on mine is in about a years time. So not very long.

I had a quick google to see if there was other designs available. In America, there was 100s of news articles on the esculating price tag: apparently a pack of two EpiPens now lists for $608 in the USA. (I checked the cost for the NHS & it’s £23.99 for 1 single dose).

This revealed that there’s a design patent on it until 2025. One company owns the monopoly of the EpiPen. & because of this, the design flaws of it for the user, are the profit for company. If it’s too big to carry, you’re more likely to buy more (in the US anyways) to store in other places or for back-ups.

Accidental injections seem pretty common, and instructions are relatively simple, but, adrenaline is invariably used in highly stressful situations, in order to treat a severe allergic reaction. As the auto-injector was originally designed for use in the military, the users were well trained to manage in these circumstances and the user group generally consisted of healthy adult males. Nowadays the devices are given to people of all ages, and with children suffering more from anaphylaxis than any other age group, the device has to be appropriate for a wide range of user groups.

On the recent BBC Radio 4 programme Dr Boyle highlighted how having to respond to a stressful situation can affect the person administering the drug. In his trial, more than half of the intensively trained parents were unable to correctly operate the devices in an emergency.

He cited some of the common errors associated with auto-injectors: holding them the wrong way round, failing to remove the safety cap and not pressing hard enough. They also discussed how little research into the efficacy of the device has been done because studies can cause severe allergic reactions in test subjects, plus real life situations are likely to occur in public and not in clinical settings. All of these issues have resulted in little drive to improve the devices over the last 50 years, leaving key issues unaddressed. (1)

The very fact that the EpiPen has been dominant for so long makes it hard for challengers to come in with a radically different design.

So, what does all of this mean? Well… there’s a HUGE Challenge for someone to make a MASSIVE difference to 1,000’s & 1,000’s of people, but also challenging in being able to design everything that is needed into an EpiPen (engineering, plastics, drugs, function, deisgn, safety etc) that’s life-style-functional & more cost effective long-term (shelf-life etc).

It highlights that instead of trying to carve out a focused segment of healthcare or a specific specialty of design, we should be re-framing these conversations about healthcare improvement around a set of challenges.

No one person or one organization can take on the whole system, but collectively we can make significant, people-centered change happen. I wrote on my blog last night about ‘critical making‘ – If there is one element that is sorely lacking in healthcare, it’s the ability to prototype, to critically make.

It can seem like a beast of a system can healthcare: its big, complex, and delivering on one of the most complex industries. But I’m trying to keep practicing at staying awake and trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

 

Who knew some Shellfish and an EpiPen  experience would be showing me and putting into practice that listening can tell you who you are. That paying attention can give us the change and the meaning that we so badly seek.

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(1) BBC Radio 4, Inside Health, Wed 7 October 2015http://www.bbc.co.uk/programmes/b06flmg7

other readings:
Adrenaline auto-injector advice for patients, UK Gov.ukhttps://www.gov.uk/…/adrenaline-auto-injector-advice-for-pa…

Adrenaline auto-injectors, European Medicines Agencyhttp://www.ema.europa.eu/ema/index.jsp…

How Mylan tried to keep Teva from selling a generic EpiPenhttps://www.statnews.com/…/2016/08/31/mylan-teva-generic-e…/

 

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

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

Well, I’m being schooled,  once again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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