Category: feet

Endings, beginnings …

A few months ago, I was driving to see a client, and as I always do when I’m on the Inner City Bypass, I quickly looked to my left where the Royal Children’s Hospital is. Or I should say, was. When I’d finished my shift, I drove back to the Royal, parked my car and got as close as I could to the site. I cried big, ugly tears, and had to take some deep breaths to ground myself. I took some photos and spoke to one of the traffic guys about my time in there.

Going back was not about burying my suffering. It was about bearing witness to the destruction of what had been my second home. That might sound hyperbolic, but it’s where I did half my growing up. It’s hard for people to grasp that I spent nearly half my life in hospital before I had my transplant. It’s about being there, grounding myself in the suffering that is still with me – the suffering that will always be a part of me, and when it comes to that suffering I’m not broken or stronger for it. I just am.

I don’t live in the past. I AM my past. It’s like that saying, ‘you don’t have a soul. You have a body. You are a soul.’ 

Just when you think you’ve released all the guilt, there’s a dark corner of me that feels I need to be there to pay penance for having survived when most of my friends did not. Sound stupid? Try living it.

This place is sacred ground for me and so many others. There were so many first and final moments on that land. I fell in love for the first time there and I never believed the time would come when such a place was torn apart piece by piece. The state government made that decision years ago when Anna Bligh decided to entertain her vanity project of a children’s hospital in South Brisbane because Brisbane had a perfectly good hospital and infrastructure at Herston because: politics. I can see the new children’s hospital from the place I’ve left (it’s revolting, just in case you were wondering), and I remember the uproar in the medical fraternity when the idea was initially tabled, both with doctors and patients.

Back in the 90s, I was in hospital for much of the construction of the ‘new’ hospital (the one that’s been demolished), and I also happened to be an inpatient when the Deen Brothers demolished the old hospital. If you live in Brisbane, you’ll know that the Deen Brothers were the go to guys who knocked down iconic landmarks such as Cloudland and the Bellevue Hotel under our despotic Joh Bjeilke-Peterson dictatorship. Under Joh, they demolished much of Brisbane’s beautiful heritage buildings from the 1970s and beyond, often under the cloak of darkness and surprise.

And so the Deen Brothers were given the job to demo the old red brick hospital buildings in 1993, and I was a fierce sixteen year old who took shit from no one so it was nothing for me to jimmy open a window so I could yell at the Deen Brothers ‘you heretic c*nts!’. I’d shout until I was literally blue, my face covered in the dust of my past, present and future. I’d do this as many times as I could during the day when I wasn’t studying or having treatment. I would rage and cry, and punch the glass separating me from so many years of pain and suffering. I would wait until they met my eye (because they would) and I’d rage and cry, and give them the finger. They must have thought I was a mad little girl, but they  were just doing a job. Maybe I was doing mine, and the job of so many souls who had gone before me in those buildings.

The one image that brought me to my knees was when the kitchen being ripped out – the timber splitting like kindling, and the terrazzo floors being smashed. I wanted to throw myself on the ruins of that building and die with it. I was sixteen and I was in a constant state of grief. Heavy, sodden grief.

I’ve often said that I don’t live with regrets, and that I live with lessons instead. But I do have one regret. I wish I’d got some bolt cutters to break into the old Adelaide Billing ward before it was levelled. I feel that regret in my marrow, and I have a recurring dream where I can’t get into the ward. But there’s another dream happening where I’m right there, seeing myself not being able to get into the ward. Sometimes I get in without the bolt cutters. The double doors open up slowly, and I can feel the cool, polished terrazzo under my feet.

I still have nightmares about its old lift that shake me awake, and leave me unable to get back to sleep. They’re cyclical, and after a watched the hospital being torn down, I had more recurrent dreams about trying to get into the old Adelaide Billing doors.

But with every ending, there’s always a beginning. The day before Christmas, I moved into my new house, and I’m beyond besotted. I can see the stars every night, there are trees as far as the eye can see, the birds sing to me every morning, and I think I have an owl after finding a feather from a Powerful Owl, which is curious because I asked for an owl to look over me at the beginning of the year. Sometimes life is funny like that.

And so, I’ll cast my attention to this new beginning with fairy dens, banana palms, owls, native hibiscus and old, thickly rooted jasmine. And yes, my new place has terrazzo floors …

Why I’m NOT sorry

Today, my friend – the other Carly, Carly Findlay – wrote a shut up amazing piece about apologising and how she no longer wants to apologise for what is beyond her control. Shortly after reading Carly’s piece, I saw the photo Annie Leibovitz took of Amy Schumer in all of her near-naked and non-apologetic glory. I wrote the following on my chasing away salt water page:

I am loving this photograph of Amy Schumer by Annie Leibovitz for the 2016 Pirelli calendar. Beautiful and real, replete with her natural curves and belly. Amy writes on her Twitter account – ‘Beautiful, gross, strong, thin, fat, pretty, ugly, sexy, disgusting, flawless, woman. Thank you.’ No Amy, THANK YOU. 

As a woman with Cystic Fibrosis, I’ve always had a belly (even at 38kg) that I’ve been embarrassed about. Why? The way women who have won the ‘genetic lottery’ are portrayed in the media are partly accountable. Compare the 2016 Pirelli calendar to the 2015 one of highly fetishised shots of ‘supermodels’, and there’s another answer.

I stopped reading ‘beauty and fashion’ magazines many years ago for a couple of reasons. Firstly, there was no substance in the writing, and I felt that the articles were trying to dumb me down even though they carried the token ‘be empowered!’ bylines. They made me feel as though I wasn’t in charge of my life because everything from my personality to my body, my diet and the colour of my skin had to be curated to please others.

The images in these magazines come a close second. They are photoshopped and airbrushed to within a pixel of their life, which is not telling you anything new. Over the last year, I’ve been celebrating my body more and more because it is strong, capable and really fucking incredible. This body with it’s bi-afran belly and beauty marks (scars) has been through dozens of surgeries and survived. It took me a long time to accept – let alone be proud of – my scars, and while these surgeries have shaped me, they do not define me. My body is unique, beautiful, capable and tenacious and that’s something I celebrate every day.

Like Carly, it got me thinking that I’ve been apologising all my life for things that are beyond my control. A prime example is when I would have massive coughing fits for the twenty-one years before my transplant. I would be in a constant state of apology – always to the person next to me (especially if it was a boy) even when they would tell me I had nothing to be sorry about.

But what was I actually sorry for? For not being able to stop the brutal evolution of my dis-ease? For not being able to stop my lungs drowning in mucous where the only way I could get any relief from the crushing pain was to hack up green and brown slugs, or red if I had had a bleed?

I’ve been in bed with lovers and have apologised for my belly and my scars. The thing is – I know they don’t care because orgasms are more powerful than any mark on my body. My scars are a testament to my survival. I started calling them ‘beauty marks’ long ago, but I know that they’re just scars and most humans have them – just maybe not as many as I do. Men are told ‘chicks dig scars’, but I’ve never heard anyone say ‘men dig scars’. These indentations on my body represent my survivorship and they tell me – and others – that I am a warrior.

But sometimes there are apologies you have to make. I’ve done a lot of apologising over the last couple of years because I needed to say sorry to my family for lying to them about my addiction issues.

I was brought up with a fairly strict hand, replete with a really solid set of manners, and maybe that’s why I’m such a passionate apologist. I apologise a lot to men for no good reason, and as a society we’re conditioned to say ‘I’m sorry’ when someone dies. How about ‘that really fucking sucks – what can I do to help?’ Because you can always help.

I was talking to someone on the weekend about Facebook and how my personal presence on there is very small compared to what it used to be. Instead of having 800 ‘friends’, I now have about 80, and a lot of them are for my deathie work. The reason I deactivated my profile and had a ten month Facebook hiatus after I did my vipassana was because I had essentially turned into many of my Facebook ‘friends’ own private therapist.

I love helping people – it’s my passion and purpose – but when people would message me to help solve their problems, I would do the very best I could until I became overwhelmed and needed time out. Yes, I feel guilty when people work out who I am on social media (I use a pseudonym) and send friend requests which I decline, but I can’t be everything for everyone. I won’t say sorry – I’ll just say ‘no thanks’.

I spend time with my family and friends and I hold a sacred and sometimes all-consuming space for my patients and clients. I have learned to let go and learning that was not an easy lesson. By establishing boundaries, I’m happier and feel more secure than I ever have both personally and professionally, and while I have this blog, there are many facets of my life that remain private – things people will never know.

2016 will be my own year of no apologies because I’ve done the hard yards and have owned my shit. I hope this post doesn’t sound intentionally angry, but I won’t say sorry if you think it does. I’ve only ever been able to be aggressive assertive with doctors who have lots of letters after their names because I’m terrible – really terrible – at confrontation. I am, however, very assertive when it counts, like when I’m sick and I need to self-advocate. I’ve advised several mums who have children with CF to ‘get their bitch on’ because sometimes, that’s the only thing that works. Here is my anti-apologist pictorial*:

I will not apologise for not being afraid of my own shadow or loving rock and roll.

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I will not apologise for my pale skin or wearing a bikini with an imperfect body or the tattoo I have loved since I was 19. Or the vein mapping on the left side of my chest thanks to numerous DVT’s/clots.

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I will not apologise for loving minerals. Or rocks, or crystals if you want to call them that. They give me strength, make me feel grounded and bring me back into my body.

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I will not apologise for my bruises you CAN touch.

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I will not apologise for enjoying using firearms in a controlled environment. And besides, if you need any organs, I’m a crack shot.

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I will not apologise for NOT wearing makeup/face paint, or showing my vulnerability on the shittiest of days.

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I will not apologise for demolishing a ginger bread house come Christmas time.

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I will not apologise for only being able to draw rainbows and saying ‘fuck’ a lot. 

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I will not apologise for eating phallic themed desserts. Or any dessert, for that matter. Ok, ESPECIALLY phallic desserts.

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I will not apologise for being a bit of a hippie and banging on my Tibetan singing bowl. I love ritual and ceremony.

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I will not apologise for asking questions and seeking answers.

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I will not apologise for taking bathroom selfies in hospital clothes after I’ve spent time in isolation.

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I will not apologise for loving flowers. Any flowers. 

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I will not apologise for twirling. It’s my thing and sometimes it’s how I get through the day.

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I will not apologise for hugging the shit out of my best friends at every opportunity. Or hugging anyone I like or love. I will not apologise for public displays of affection. If I really like you, I’ll hold your hand and kiss you wherever and whenever the hell I want, and I’ll never be sorry for telling you how I feel. If I tell you that I like you, then I *really* do, and that’s called being very fucking vulnerable. I won’t apologise for that, either.

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I will not apologise for having a medical history that may scare you. It does not define me or my future, and if you can’t deal with stories about me at my ‘worst’, then you will never know me at my best.

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I will not apologise for being a secular chaplain who is spiritual and does not belong to a church. I belong to myself and the people I serve.

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I will not apologise for taking feet selfies, because they are my most redeeming feature.

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I will not apologise for writing every chance I get.

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I will not apologise for knowing my worth.

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I will not apologise for loving my nephews so much that sometimes it scares me.

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I will not apologise for my rad transplant scar and the free breast lift I got from Medicare (and my new vagina). They might be scars (I call them beauty marks), but they’ve made me into a FUCKING WARRIOR. So yeah, fuck ‘sorry’.

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*not an exhaustive list.

When silence is deafening

‘Silence is safer than speech’ – Epictetus

Silence. Do we ever truly know what it is? What of the white noise that sweeps over our everyday lives, or the incidental noise that punctures the air? What does silence look like? This photo I took today is what silence looks like for me, out here. Thousands of miles of a seemingly silent landscape. It’s what that lies underfoot; what the earth bequeaths us when we least expect it.

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It’s going to take a few days to ‘acclimatise’ to the silence. It always does.

The sky turned it on tonight, but I’m holding out for some wicked cloud formations over the coming weeks, all of which I plan to share with you.

Another glimpse of silence. The earth opening up, as though it wants to take me somewhere. Not like Alice into the garden, but to take me through the arteries of the land that lay beneath my feet. These cracks by the homestead are small – delicate and polite, even. The crevasses in the paddocks seem to invite you to sink into them, as though they want you to disappear into them.

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We need rain out here. We need rain yesterday. We need rain last week. There hasn’t been any good, solid rain since March. It’s dry. Not as bone dry as I’ve seen it, but dry.

We went for a wander tonight, trying to find en emu one of the dogs had attacked and dragged through the fence. We failed to find it, but it must have scarpered to stumble and die. The dog had had a really good go at its neck, so it was mortally wounded. This is country life. Life and death.

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^ Bird on a wire ^

Destination reached

Here are a few shots I took today when I arrived on the property. The garden is dedicated to my friend Meagan Walker and on Sunday (Father’s Day), a big and rambunctious group of us will congregate at the Longreach train station from where we will walk 11km to Meagan’s Aunt Midge’s house to celebrate Meagan’s far too short life. Midge instigated the inaugural mini-marathon many years ago and I’m so happy to be here for it (my second).

There are pellets of words barreling through my head and heart right now, so I’ll give you some visuals instead.

Boots on the dash …

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The leaning Weeping Willow just where Meagan’s granite boulder is has new growth, even with a split trunk. You can just see Meagan’s stone behind it on the left, which has also moved.

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The arbour. At least 70 years old.

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A tree Katrina (Meag’s older sister) and I transplanted quite a few years ago, has grown into a beauty, considering the spindly little thing it was. So proud!!

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New water feature.

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And I saved the best for last – digging my feet into the ochre earth. Feeling energised already.

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9 1/2 weeks, Princess Diana and trampoline competitions

I’ve always dreamed wildly; the dreams being intensely vivid ever since I can remember. I’ve even dreamed about people who have ‘visited’ me. When I was six years old, my friend Rachel floated through my window and sat on my bed. I knew she had been very sick, and possibly knew she was dying. Rachel said that she had to go and that she was coming to say goodbye. We talked for a while and then she floated back out the window. I told my Mum about it the next morning, and as it happened, Rachel had died overnight. I remember Mum saying, ‘that wasn’t a dream,’ and giving me a big cuddle, then telling me that Rachel had indeed ‘gone’. I found it comforting that my friend had come to me to let me know that she was leaving.

I excessively dream/night terror. Many are strikingly real and can sometimes stay with me for days. A University of Iowa study in 2003 revealed that people who are creative, imaginative, and prone to fantasy are more likely to have vivid dreams at night and to remember them when they wake up. David Watson, a professor of psychology in the University of Iowa College of Liberal Arts and Sciences, said that the more bizarre a dream was the more likely his subjects were to remember it.

Around 2.30am this morning, I woke in a horrific sweat that saw me tearing my sheets off (who wears clothes to bed anyway?) I was exhausted from all of the salt I’d lost with the series of sweats that I’d had, so I made a cup of tea, swallowed a handful of salt tablets, dried off and after about half an hour, I ambled back to bed.

And then the dream began.

It started with a friend and her young son who was – at least in my dream – a trampolining champion. She had made a dessert of creamed rice, sliced peaches and berry coulis, and while one of my best friends and I tried to calm her down about her sons trampoline competition, I dipped my spoon into the bowl, making sure I had loaded my it with extra coulis based on my love of berries. With my friend being so panicked, I decided to jump on the trampoline with her son to get him started, and he blitzed the entire competition, beating kids and adults alike. My friend then relaxed and wondered why she was worried at the outset. Her son had excelled, her face had unfurled from concern and she was happy, content and still.

Within seconds of her son winning the championship, a media fracas erupted. My friend was interviewed and for some strange reason they interviewed me. Just as the reporters left, the article instantly materialised in the newspaper we were holding, just as they do in the Harry Potter books and films. The headline read ‘Born to trampoline’, but the article was about my medical journey, which of course bothered me immensely. This wasn’t about me. The reporter who had got it so wrong was Brisbane city councillor Milton Dick, so I chased him and Princess Diana up an escalator to tell them they’d made a mistake; that if they wanted an article about me than they should do one solely on my friend’s son and his trampolining talents and if they were that desperate for a piece on me, they could write a separate story. After all, it was all about the little boy winning the championship.

As I climbed the escalator, the air so dense and humid – like swimming through jelly – Princess Diana, who was at the top along with Mr. Dick, was trying to get a literal foothold of two books that kept being swept away by the lip of the escalator. I tried to get to the books, but she eventually trapped them with her feet and they both walked away. Because I was trapped at the top of the escalator, I threw a fishing rod and a broom at Milton Dick.

Meanwhile, at my 20 year high school reunion where the mean girls were still mean, I was standing in a communal bathroom – much like a toilet and shower block at a school camp, but with fancier fit outs – when a fierce African-American woman began swearing at me and spraying offensive words as she stood behind me. I looked into the mirror and I had long, dark brown hair, brown eyes and olive skin. I swore at her in a language I had made up, and she laughed maniacally because she thought she had me. She presumed I was speaking Columbian, which would mean I was speaking Spanish and I knew that she was an ace at the Española. I bit back, telling her it was Swahili, at which point she became bitterly affronted, flying into a rage. I’d won the first battle and so left the bathroom with a feeling of empty victory.

I then found myself at an event that Tom Cruise was MC’ing. There was a big room, much like one you’d find at a runway show where my school friends and I were getting dressed and made-up for some sort of grand event. I was the last to leave and thought it odd that Tom Cruise had waited until everyone had left, because he wanted to talk to me. I remember feeling panicky and not flattered at all. I thought (just like in real life) that he was weird and had dastardly plans to make me his concubine, or worse – his wife. The second time he waited for me, Uma Thurman was in the room and wouldn’t leave. Thanks Uma.

Skip to the next frame, and I find myself in the company of a tiger – his coat silken, but flocculent. In the foreground was a rawboned looking woman who had been looking after the tiger as though it was her child, and though she said the tiger really liked me, I just couldn’t trust it. It would deliberately catch a claw or scratch a tooth on my skin like some sort of weird power game. It was in control and it was like 9 1/2 Weeks, except without Mickey Rourke. And without the food and the hot sex and Kim Basinger’s hosiery and the horse whip. Dream fail.

And so the lady and the tiger were separated which left her bereft. So bereft that she collapsed and was laid down on a stretcher. Who cares, I AM STILL FANTASISING ABOUT CRAWLING ON THE FLOOR FOR VINTAGE MICKEY ROURKE BECAUSE I MAY HAVE WATCHED IT LAST WEEK. It then emerged that she had lost her daughter to Cystic Fibrosis many years before, and so the tiger was akin to a replacement for her child. She showed me photos of her daughter who she said I had known. But I couldn’t remember her child and felt an acerbic stitch of guilt.

I comforted her until her wailing became a soft sound of regret. She stayed on the stretcher, and her face shrunk as the minutes passed. It was as though the more she talked about her dead daughter, the more life drained out of her. She was pallid and cyanotic, having taken on the look of an end stage AIDS patient. We were at the top of an amphitheatre full of people; a massive audience. My parents were there, as were girls I went to school with and I ran down the sparsely spaced steps. The audience turned their attention from Tom Cruise to me; my bare feet hammering into the timber thumping through the air.

Skip to another room and there’s a young man with Down Syndrome who was sweet, but was using his condition by trying to kiss me. I resisted and told him ‘you can’t use your disability as an excuse to do whatever you want’. I said that it would be like me having CF and taking advantage of people and situations, and that it was morally wrong – ‘I know how having a terminal illness works, buddy. You can get concessions and things that would otherwise be out of reach, but just because you can doesn’t mean you should.’ PREACH!

A group of people made up of strangers and friends nodded in approval, and then I fell into a pond after missing a stepping stone because of the darkness that quickly peeled over me.

NOW ANALYSE THAT.

CrazyDreams

Feet, jesus, spooning dogs, goats and Birkenstocks

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Well, is it? ^

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The ‘Woomba ^

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Post Pent-Warming ^ Pent got warmed.

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Cannulation. ALWAYS have perfect peds in case of emergency.

*a brief intermission*

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Yeah. Eff off, Jesus.

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I do have *unreal* feet. Surely something had to go my way …

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My balcony. Magically warm on the peds in winter.

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With Billy Bob in Bangers, near the farm.

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Still not sure …

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Mmmmmm, blood-a-licious.

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Blood THAT far up the line isn’t a good look. Nor is a cannula in your foot, but it can always be worse.

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At oncology clinic.

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Aesop. Spa. Place up in Moolools. Oh, yeah.

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Not feet, but leg centric. And Bert, my protector/best spooning partner ever. Bertle is my main man ♥  ♥  ♥

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Praise Baxter bottles of Cefalothin 🙂 Gotta love thyself a hospital chapel.

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So we’ve determined that I have great feet, so why do they always cannulate them? #shitIVaccess

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Pro Hart approves.

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Feet on the clinic desk wheel-of-fortune!

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Hospital selfie.

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Oh, Bert … you ARE special.

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Last weeks transplant clinic feet on the desk Wheel of Fortune …

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Because I can.