I haven’t written a poem for a few years now. Lots of notes, but no poetry. On 1 April, I found out that my dear friend Camille had only weeks to live after a diagnosis of incurable angiosarcoma in January. For some reason, I grabbed a pencil and notebook and started writing.
Cam had a double lung transplant for a rare immune disorder in February 2013. She messaged me that morning to let me know that lungs were available. We both cried out of joy and fear. I was just about to walk into a ten day silent meditation retreat, and didn’t know for a couple of days whether she had lived or died until my teacher told me she had survived.
Cam knew I was going on this retreat, and when she woke up from her surgery she scribbled the word ‘retreat’ on a piece of paper (I believe she was still intubated). Her family had no idea what it meant, but we eventually explained it to them. It was her first word and I will always feel very honoured by that.
On the 7 April, my friend Katherine and I went to Melbourne for Cam’s early 45th birthday party. People travelled from interstate and overseas and it was full of love and colour just like Cam who was a gifted sewer and crafter and lover of anything bright. What was truly special about her party was how she had brought so many people together through her CurlyPops blog and instagram feed (the girl loved her social media).
In her final weeks, she travelled to New Zealand and Uluru, made quilts for her nephews, raised money for cancer research, went to her nephew’s basketball final (they won), and spent Easter in Tasmania with her family. And that’s when things went a little pear shaped. Friends chartered a flight for Cam on Easter Sunday and she died on Tuesday afternoon. I usually write long posts about my beloveds who have died, but I don’t have the head space to keep writing. It’s fair to say I’m fucking devastated and many hearts are broken. And I’ll leave you with one of the last things Cam said to me – ‘please don’t forget me’. Oh, Cam – how could I ever?
NOTE: My poem has been submitted to a competition, so it will be back up in August. If you want the poem sent to you, please email me at email@example.com
Over the last two weeks, I posted some thoughts and opinions on my Facebook page as to why I believe that chasing happiness can be like a sickness, and how the pressure to be ‘happy’ or ‘on’ all the time can do more harm than good. Here it is in full:
Hi lovelies, I read a quote earlier in the week and it’s been irking me. Like the thinking out loud girl I am, I feel compelled to write about it because what I’m about to share affects most of us at one point or another. So strap yourselves in, because this is a long post. This quote rubbed me the wrong way as soon as I read it. It had a nasty sting in its tail and summed up my very strong opinions about what I call ‘positivity‘ or ‘inspiration’ porn’. I’m not going to post the quote for copyright reasons, but the gist of it was this: ‘our pain is a gift and we can harness that pain into passion and other good stuff. Be grateful for your pain, as it has many lessons to teach us.’ Well. I. Call. Bullshit (hello bullshit? Are you there? It’s me, Carls … yes, I’m calling to report about how skewed the positivity and happiness movement is. Hello? Hello?! Ugh.)
Last year, I had a conversation with a like-minded gentleman about how the positivity movement oft times does more harm than good. We’re expected to suck up our situation and smile through it like an automaton, so here’s a question (one I’ve asked before) …
WHY THE FUCK WOULD I BE FEELING GRATEFUL WHEN I HAD A BROKEN VAGINA AND A POO BAG? Did having cancer give me any wisdom I could hammer into gold? Nup. It was one of the most horrific experiences of my life. See that photo of me? I’m not looking very grateful, am I? Well, shame on me for not gleaning anything out of the subsequent coma I’d soon be in and the three months I existed with an ileostomy that either leaked or exploded every single day. At this very moment in time, I was terrified, miserable, and in pain.
Here’s the thing. So many people have fallen into the happiness trap where every experience – good, bad or indifferent – is a chance to learn something positive about ourselves that we can share for the greater good. Well, I’m here to tell you that that’s not true and you shouldn’t feel guilty into thinking otherwise. I tend to look at things through the lens of reality.
In this photo I’m not smiling because my reality at that time was a massive bowel obstruction, seizures, coming close to death (again) and some of the most horrific physical and psychological pain and suffering I’ve ever known.
If you’re going through shit, you have every right to be curmudgeonly, to wallow and even scream. We’re human and not every fucking thing is a lesson or a chance to be more ‘enlightened’. A hyper-positive attitude was never going to get me through transplant or cancer. It was more down to sheer will, the marvels of modern medicine, my transplant team, the love of my family and friends and the knowledge that I had no other choice except to go on.
I didn’t know who or what or how I was supposed to be after my transplant and it was a time of mass confusion with what felt like a thousand conflicting emotions that I felt so guilty for even having in my head, let alone holding onto. There’s so much more I could write (I’m writing a chapter on this at the moment), but I’ll leave it to you to feel how you want to feel. Don’t buy the hype. Fuck Deepak Chopra, Louise L. Hay, Tony Robbins and other charlatans who espouse this rubbish that in order to grow, we must suffer. In the spirit of Fleetwood Mac, my best advice is to go your own way. In the spirit of me, fuck that shit. Peace out.
The post received a fairly conclusive reaction apart from one single exchange of words with a person who doesn’t even follow my page. Coming from a place of fear and unresolved issues will do that. But further to what I posted last week, yesterday I scrolled past this old chestnut.
And as much as I love a stone cairn, I have no time, patience or tolerance for such a misguided sense of privilege. I prefer this gem …
And so I present, my 2018 Health Shit List …
1 bronchoscopy (which equals one general anaesthetic)
1 appointment with my gynaecological oncologist which lead to …
1 pre-admission clinic so I could have …
1 unilateral oophrectomy (removal of an ovary due to a giant cyst I was worried was cancer. It wasn’t)
2 bouts of bone pain as a side effect of antibiotics
Countless episodes (and days) of nausea where I’ve needed chemotherapy grade anti-emetics
1 major sinus infection and the six months of migraines and headaches every day preceding IV’s
1 chest infection
1 major depressive episode
Complex PTSD where the closest comparison my psychiatrist could come up with was me being like a concentration camp survivor
1 CT scan chest = 1 episode of scanxiety
1 CT scan sinuses
6 chest X-rays
Dozens of appointments with my GP
4 lung function tests
5 courses of oral antibiotics (one of which made me suicidal)
2 attempted courses of nebulised antibiotics my throat couldn’t tolerate
50+ blood tests, including needles in my feet
2 internal jugular lines for IV antibiotics which necessitated two trips to ICU
100’s of finger pricks for diabetes
100’s of shots of insulin
5 serious hypos/low blood sugar levels where I was unable to walk, had trouble breathing and thought I might die on the kitchen floor. Naked.
2 optometrist appointments
1 dental appointment (routine) as well as two cracked teeth and two fillings (wtf?)
1000’s of tablets, some cytotoxic and cancer causing
5 psychiatrist appointments (with more to come)
2 psychologist appointments
1 EMDR session (with more to come)
1 trial of a norepinephrine and dopamine reuptake inhibitor for depression, which has mercifully worked
1 trip to emergency
2 inpatient stays, albeit short
6 lung transplant clinic appointments
1 skin check because I have a 65% higher chance of developing skin cancer and melanoma from the combination of anti-rejection medication and how they interact with ultraviolet light. Because I’ve stayed out of the sun and worn sunscreen pretty much every day since I was 21, my skin check was perfect
The possibility of a condition called mycobacterium abscesses which would involve a year – A YEAR – of IV antibiotics, as well as other oral antibiotics which can stuff my liver and kidneys. Thankfully, my doctors are 99% sure I don’t have it, but since it takes six weeks to culture I still have two weeks where I could get a phone call to say I have it. The waiting alone is a complete and utter mind fuck
Terminal thrush. There, I said it.
I’m yet to have my Pap smear, colonoscopy or my mammogram
Here is a sketch I did at the beginning of the year to show what my body has been through. After I drew this, I walked back to it a couple of days later and thought, ‘holy shit, I’ve been through a bit of trauma.’
I’m not one for comparing my experience to others, but a friend sent me her shit list today and it made me feel like I’d come away relatively unscathed from my own annus horribilus. And really, I’ve come off lightly after speaking with other transplant friends who have had cancer, are on dialysis, who’s lungs are failing and the rest. Everything is always uncertain, and while this might sound hyperbolic, lung transplant recipients live on a razors edge. I say ‘lung transplant recipients’ because lungs are the most challenging organ to transplant and keep healthy.
Before transplant there was a sense of safety – an absence of fear, if you will. I was always ‘fine’ because I knew what to expect. Septicaemia in my port-a-cath? Fine. Blood poisoning? Fine. Spending my birthday in hospital? Fine. Having a port-a-cath accidentally surgically inserted upside down? Fine. Coughing up blood before singing in front of several hundred people? Fine. Having my lady bits rearranged and an ileostomy? Not fine.
Having a transplant is the ultimate gamble, but I’m not a gambling woman. But I didn’t want to die so I went on the list. I didn’t want to die so I clawed my way back to life and said yes the night I was offered donor lungs. I didn’t feel elated. I didn’t feel excited. I felt sick. I felt sick because I thought I was going to die that night, and for so many nights after that.
I find myself oscillating between gratitude and guilt, and feel a palpable sense of that when I have a moment, a day, a week or a month when I hear myself say exactly the same words I said in the days and weeks after transplant – ‘I wish I’d never had the surgery.’
Afterwards, I didn’t know who or what or how to be. It wasn’t as though I wanted to die – I just didn’t know how to live. Twenty years on and I am still learning. Adapt or perish.
I realise that these lines of thought will make some people uncomfortable and even combative, but until you’ve walked the line with me with one foot planted in life and the other planted in death, it’s best if you keep your opinions to yourself. I’ve survived the unsurvivable, and not just once. I’ve learned more than my fair share of lessons, so here are a few I’d like to share:
– Sometimes when you reach for a life jacket, you’ll find it’s made of barbed wire.
– Time is a healer and a thief in equal measure.
– Grief and life are one and the same – one minute you’re gasping for air, the next your rolling through peals of laughter and joy.
– There is no point railing against genetics, as brutal as their truth may be.
– I am the custodian of two lives – mine and my donors.
– I fear decline more than death.
– I feel as though I need to atone every day even though I wasn’t responsible for my donors death.
– When it comes to guilt, you can treat the symptoms but not the cause.
– My body has been a sterile field more times than I can remember.
– Everything in my life at one stage or another has been pathologised – emotionally, physically, psychologically.
I’ve also learned that despite these harsh truths, I’ve had a wonderfully rich life. I might have lead a double life, but I was a happy kid who was just thrilled to be here. I was lucky enough to have two incredibly dedicated parents who did everything in their power to keep me well. I travelled overseas. I had an excellent education and my friends have never faltered even when they could have. I’ve had some marvellous opportunities come my way, and people who were once strangers are now friends. I was lucky to be a mistress of adaptation from a very young age, and so I’ve worked out what works best for me when I’m either happily paddling along or if I have to adapt yet again:
– Hibernate to rejuvenate
– Long periods of silence, reflection and limited contact with the outside world (aside from my immediate family and friends – okay, sometimes them too, but they understand)
– Music and singing (badly)
– Watering my garden, watching the transformation of my little ecosystem of trees, seeing my veggies growing and talking to my plants
– Being surrounded by books and reading voluminously
– Being in nature, preferably the forest where I can touch and hug trees, but the ocean works too. It’s nice to wash the day/week/month/year off
– Being rude and vulgar with friends who get me
– Observing and forgetting all concepts of time
– Essential oils (I can feel the eye rolls)
– The full lunar cycle
– Simplify, simplify, simplify, because all I want is to live a simple life with as little ‘stuff’ as possible (except for a mass surplus of books)
– Help others when I can, which also means ‘shut the fuck up and listen’
– Ritual and ceremony, like the spell I recently cast on the last full moon
– Beautiful conversations with friends and strangers. You should say ‘hi’ to a stranger because they often have a story to tell you and you’ll learn something new
– Deep, deep breaths every morning
– Yoga 🧘♀️
– A good cuppa and outstanding coffee
– A bloody good laugh (honestly, I’d be dead without gallows humour)
There is much to celebrate, and while I balk at the afore mentioned inspiration porn, there’s a march of pride in my chest knowing I’ve nearly made it through one of the most unyielding years of my life. I’m not going to say ‘next year will be different’ because it may not be, although I’m feeling a little more buoyed by a couple of prospects.
Finally, as I learn to love and let go of my past – as fetid as it may be in my mind – if I keep invalidating my experiences and softening the truth, then really – who am I?
I call Cystic Fibrosis a series of small brutalities. But small brutalities multiply and before long you’re deep within Traumaland. On Monday, my Mum and I returned to the Royal Children’s Hospital for a site visit after it was demolished last year and it made me feel like I’d lost my tribe all over again
I said a tentative goodbye last year when I saw the buildings being torn apart; being eaten by strange looking machines, their steel teeth enjoying the feast. I hadn’t been into the bowels of the Royal for twenty-four years, and the bones of my childhood resembled a modern ruin. It was the place where I fell in love for the first time. So many firsts and lasts. I cried. A lot. I ugly cried in front of confused workmen who so kindly asked if I was okay.
But Monday was something entirely different. There was very little sadness. Instead, the encounter was strange and tender, with stories shared (mostly of sacrilege and mischief), hugs with the two lovely women who organised our visit and a chaplain I know from the P.A hospital.
That afternoon I posted a video to my Instaspam and Facebook page, but you can’t write a small blurb about a big story so I thought I’d best give it some context.
I grew up in two places; my familial home and the Royal Childrens Hospital. My earliest memory is of looking through the bars of a prison; I now know that I was gripping onto the bars of my cot, either crying for my mother or a nurse, or simply because I was crotchety and didn’t like being contained.
If you want the definition of a double life, then read on.
Living with CF was akin to being a spy. I would live my ‘normal’ life at home, have my ‘normal’ friends at school, and do ‘normal’ stuff. Then I would go into hospital for a few weeks at a time where I had my hospital life complete with hospital school and my CF friends.
I would turn it on and off at ‘normal’ school when I was with my friends, in social situations, and especially when I was at school. If a friend died, I simply went to school the next day as though nothing had happened as I tried to focus on my schoolwork. Study was my escape. Throughout primary and secondary I basically had to keep my shit together – more for other people than myself. And so there was home and there was hospital. But like any good spy, I could seamlessly go from hospital to ‘normal’ with barely giving it a second thought. It also helped that my illness was invisible.
Although I’d be physically better, I’d often start back at school spent and raw. Any admission had the probability to cut you to the quick, especially when a friend had died and often in horrific circumstances. In hospital I had my tribe. And it was tribal. I’m not using cultural appropriation here; we had elders, there was a hierarchy, we pooled resources; there were short lived disputes, and we were unusually close.
I doubt my school friends would have known the gravity of my situation, but I didn’t really want them to. Ever the actress, I was always ‘fine’. I’d rocket in to the school grounds with my big voice, drop my bag and I’d be back to myself. It never failed to please me when I returned to school, because I could get lost in the minutiae of being a teenager – music, boys, exams, who was doing what. I was just like every other school girl, and that’s how I wanted it to be. That’s how I needed it to be. Adaptation was the one skill I had mastered by the time I was six years old.
And so through all phases of my life until I turned eighteen I was tethered to this place and as I stood with Mum I felt a gentle cadence move through me like a l mood. The place was silent because of a public holiday, so there were no people, no noise, and no dust. That morning I was trying to think of something I could take with me to the site, so I took a piece of tumbled rose quartz and after a little prayer of thanks, I threw it into the pit. Half of my heart will always be there, so I thought that fitting.
If there’s a feeling that describes our visit on Monday, it would be peace and the sense of an ending*. Not closure, because closure doesn’t exist in the tumult of grief.
I had a friend tell me this week that I am ‘terrible at dying’; tell me the odds and I’ll fuck them up. I’m happy with being an under achiever in that regard and an outlier in others. Rest easy, RCH. And for the thousands of souls who died on that site, I will remember you.
*Julian Barnes has written a brilliant book with this very title.
This time twenty years ago, I was dying in hospital. Not to be hyperbolic, but I really was. That’s why it was so strange when I had to go into hospital last week to start IV antibiotics for a sinus infection. Sinus – it sounds so innocuous, doesn’t it? Except that it’s become one of my biggest ongoing health issues. I’ve had four big sinus surgeries where surgeons have apparently scraped the base of my skull (their words, not mine), but I still end up with a head full of polyps and infection because that’s just the way my CF rolls.
After brawling with a sinus infection for months, I deteriorated last Wednesday, so on Thursday I found myself in emergency with my mum. After four ultrasound guided attempts to get blood, a vein was found in my foot and later that afternoon I was taken to ICU to have a CV line placed in my jugular.
I have impossible peripheral IV access, so a CV line is the only way in. When I arrived upstairs to have my line placed, I was greeted by smiling faces, but I knew I’d have to answer some questions because I always have to.
‘Why do you need a central line?’
‘Fuck,’ I thought, ‘here we go’. I explained that I was impossible to access.
‘I’m sure we could get something in.’
Um, no. Not even when the best anaesthetists struggle.
‘What about a PICC line? A central line seems like a bit much.’
It was when I had a small crowd of people disputing what I’ve known to be true my entire life, and with the CV line on the trolley ready to go, when just short of losing my shit I said ‘with all due respect, I know you’re the best, but I have no access. I can’t have a PICC in my left arm because there’s a massive clot there from a port-a-cath which was my seventh, and on my right arm there’s nothing. Trust me, if I could have a PICC line in my arm rather than a line going into my jugular, I would’. Now that’s for a couple of reasons. Despite my CV line being sewn into my skin with stitches to anchor it, if I did happen to rip it out I’d rapidly exsanguinate aka bleed to death because it’s in my jugular. There’s also the ever present danger of infection which can lead to blood poisoning and septic shock, and you know what? Been there, done that.
And so I was polite, but firm and the procedure began. I was taken to the ward and I politely asked to be told my brilliant consultant I was leaving on Saturday because being in a hospital room isn’t an entirely painless experience for me. After spending so much time ‘incarcerated’, after my transplant and when I was eventually well again, I had this seemingly limitless freedom. I wasn’t on a hospital schedule. I could sleep uninterrupted, I could stay out all night dancing, and go out any time I wanted. I could take long baths and spend time in nature. So when that freedom is taken away and there’s no other choice except to be an inpatient, it feels like the walls are closing in and I have to get out of there as fast as I can.
It’s always an exercise in humility when I hark back to what I was doing twenty years ago. It calls to mind how and when my body began to wind down. I was lily white – fluorescent even – and my muscles had turned to mush, my bones like chalk.
By this stage, I would have stopped reading because I wouldn’t have had the energy for it – I couldn’t even concentrate on a newspaper let alone Seamus Heaney’s ‘The Redress of Poetry’. My oxygen levels would have been perilously low, I was a shade of cyanotic blue, and while I wasn’t on any pain relief yet, I really should have been. One wasn’t palliated for CF back in the 1990s, and the pain was exquisite in a way that you never forget.
My partner would have still been taking me on outings, but I’d be tethered to an oxygen tank and needed help walking because a wheelchair was the final insult. L and I got so close in what should have been the final six weeks of my life, and that too was exquisite.
So twenty years ago, I was dying. And I was okay with that. Really, I was. I’d had twenty-one years of engaging with the world where I was fierce, loud, brazen and totally shameless. I was addicted to life. Nothing was nuanced with me, because it never had been. Every moment was fully weighted, yet tinged with urgency. I was indifferent to what people thought of me because I had lived my mad, raucous life – all twenty-one years of it. But then one night in late August came a phone call, and I would be ripped from my dying and thrown back into life with such violence, I would never be the same.
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.
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 …
Last week, I joined the Queensland Writers Centre #8WordStory challenge on Twitter, and out of thousands of entries, the audaciously talented Nick Earls chose one of mine to feature on a digital billboard from earlier this morning until late tonight.
It’s a bit of a thrill being chosen, because there have been so many prolific writers who’s stories have been featured. It’s the closest I’ll be to ever having my name in lights, so thank you QWC and Nick!
My Twitter handle is @thedeathmidwife, and the billboard is on Bowen Bridge Road at Herston in Brisbane.
I don’t usually share fundraisers, and I don’t have any time for often vacuous fundraising campaigns, but this one is so far from vacuous, I don’t even know where to start. I’ve said time and time again that Cystic Fibrosis is a fucker of a disease. It takes everything both necessary and dear to you – your breath, your mobility, your dignity, and then your life. As I roll through life, it just keeps taking. The only thing it’s ever given me is an almost debilitating sense of fear.
So I’ll cut to the chase before I *totally* lose my shit.
I grew up with a lad called Matty Kidd. – one of those rough and tumble really good kids. We both loved metal, and even though he wasn’t in hospital too much growing up, he was one of those kids that left an impression. I was so surprised when Matty contacted me earlier this year. If I’m truthful, I’m always a little taken aback when a CF’er I haven’t heard from in a long time writes me or shows up at a funeral because the simple and brutal truth is that they’ve died – I just haven’t heard about it. The CF grapevine doesn’t work like it once did, because there’s only few of ‘old skool’ CF’ers left.
Matty’s partner Racheal had just given birth to a healthy son – he was a Dad! Matty sent me photos of him and his beautiful baby boy, and I cried tears of joy that Matty was still alive and that he now had a beautiful little family of his own. He’d been assessed for a double lung transplant, and while he had all the normal fears, he knew it was the best decision he could make for his young family.
Last week, Matty received his transplant but he suffered catastrophic complications shortly after and he died over the weekend. He leaves behind a shocked and bereft family and friends, and my beautiful friend Kate – also a double lung transplant recipient – has created a gofundme page. Ironically, Kate and I have rolled our eyes in the past at the entitlement of people who use crowdfunding for things that aren’t for something legitimate like medical expenses.
The reality is, Matty’s family need financial help as they plan his funeral, and to prepare for a future without their son, partner, father, brother and friend. I can’t even imagine having to face such a thing. If a potato salad can raise $55K on Kickstarter (I’m not even joking), then we can do better than $20K for real people. So I guess this is where I share the link. I’d be ever so grateful if you or anyone you know could donate to this worthy cause – https://www.gofundme.com/please-help-towards-jakes-future
Matty, you will be so desperately missed. Your memory will be kept alive for your little boy by everyone who was lucky enough to know you.