Tag: survival

The trouble with ‘cures’

My good friend, writing peer and all round genuinely awesome woman, Carly Findlay has today written for Daily Life about her experience with false cures and how, at the end of the day, she doesn’t want to be cured of her rare and painful skin condition Ichthyosis. Like Carly, I’ve never wanted to be cured from Cystic Fibrosis. I’ve wanted to be free of it, which is different to a cure, but this dis-ease has shaped me into the person I am today and I’m proud of my ability to survive against often insurmountable odds. For The Two Carlys (like The Two Ronnies, but hotter), life is a gift.

Carly was kind enough to ask my opinion about how the lure of false hope can be a soul destroying experience – not only for the person suffering from an illness, but for their families and friends. You can read Carly’s article HERE and her blog can be found HERE where she writes prolifically about disability rights, appearance diversity, her personal battles and victories, and other very important issues, including her impending wedding – YAY!

Here is a photo of us taken last year when we met in Melbourne. It had been a long time coming. We share far more than our names.

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New beginnings

I had some really good news that I wasn’t able to share with you until I received my acceptance letter in the post today. I’m in the latest intake of a pastoral care course I applied for last year through the Queensland Institute of Clinical Pastoral Education. My interview was about ten days ago, and it went so well that I was offered a place on the spot, so I was quite chuffed to read the letter today. I’m going to be based at one of the city’s largest trauma hospitals.

I don’t ‘belong’ or subscribe to any religion, though if pressed, I would have to say that I’m agnostic. I have my faith and my own spiritual beliefs, but this course is so far removed from being about me – the care industry rarely is. It’s really about how I can best serve people who are ill, suffering and dying, and how this course will, no doubt, extend my charter of compassion. I suppose that it’s a little about me and my experience, but I’m there to listen.

I wrote in my application that it’s never been my intention to be a counsellor, but to ‘be a person who can listen and offer emotional and spiritual support to people who may be in distress due to illness, disability or other trauma’. I once looked at studying social work, and look at it hard I did. After weighing up the pros and cons, the cons became insurmountable – the main offender being burnout.

I see pastoral care as a gentle vocation, and it’s more of a team-oriented approach with other medical professionals that I hope to one day be working closely with. Suffice to say, pastoral carers are quite low on the allied health rung in hospitals, but as I heard last year at the Spiritual Care Australia conference, the landscape of care is changing, and pastoral and spiritual carers aren’t being shunned as they once were. I heard firsthand how nurses are actively calling upon us for their patients who are in an existential or spiritual crisis, which is heartening to say the least.

It’s going to be tough, harrowing and rewarding work. I’ve been a volunteer with various charities and organisations since I was a young girl – namely Cystic Fibrosis and Queenslanders Donate, which is now DonateLife – and while I don’t see my work in pastoral care as volunteer based, the volunteering and other care work I’ve done with the sick and the dying will prove to be an invaluable foundation. Now, I’m no Mother Teresa, but I have high morals, a strong ethical constitution and tremendous expectations of myself. My belief system is one of kindness, respect, equality and compassion, and my experience with illness and death will no doubt temper the potential stress I may encounter with the training I’m about to begin.

I’m expecting to be challenged, humbled and probably brought to my knees as I learn about what it truly takes to be a great spiritual carer. Again – I’m not in the business of ‘fixing’ or rescuing people. All I want to do is comfort people when they are most in need of spiritual support; to help them navigate whatever emotionally perilous journey they may be on. Let the learning and listening begin …

Where was this when I needed it?

Today I found the most amazing resource for people – young people – who have ileostomies and stomas (poo bags). You can read about my experience with my poo bag HERE. Ever so glamorous, though it was really the most harrowing time of my life and I physically and spiritually felt a part of myself disappear. A part of my womanhood and a massive chunk of my dignity where I lost myself. I guess that happens when your vagina is peeled like a grape, you have to have your bowel redirected in the form of a poo bag and you nearly die.

There is a lovely and courageous young woman called Talya blogging over at Feeling Ostomistic, and here are her top ten things people don’t tell you when you have an ostomy. The only point of difference is that I still have a normal belly button – I just have a gnarly scar next to it.

If only this support was around when I had my ileostomy, then I really believe it would have made my whole experience a little easier to bear knowing there was another young woman out there who was struggling just as I was. Knowing I wasn’t alone. Because I truly felt it. Talya is beautiful, brave, boisterous and I hope she keeps blogging forever. The world needs her.

Topography

She sits by the windowsill –

window seat holding her shearing form.

Fingers of sunlight splay across her back

and she smells tuberose on the morning air

as her body is swallowed by the full throat of summer.

 

Shifting her form to a gentle lean,

she spies a framework of desire

where the language of hummingbirds between webs of light

moves faster than the bay of the moon.

 

She swings her face towards the floor,

unknotting her legs from unfeeling.

Solemn of face and swollen of neck,

she looks to her breast – just the one.

 

A cleave in her chest – a gift.

The skin on the other like corrugated tissue paper –

the markings like an embroidery of truth

where she tells herself that it is just topography

and that she is safe.

I’m going to be a TEDx talker!

I have super exciting news. Yesterday, I was asked to speak at Brisbane’s TEDx event in October. In case you haven’t heard about TEDx, click here to find out what an inspiring global platform where people such as Bill Gates, Liz Gilbert, Jane Goodall and Al Gore have shared their ideas.

The 2014 speakers have been announced today on the Weekend Edition. I am equal parts excited, terrified and honoured to have been invited to speak at such an exciting event. I knew this year was going to be big, but this? I’m still pinching myself …

Am I nervous? I’d be lying if I said I wasn’t. I’m speaking alongside people like Samuel Johnson and Bob Downe (I can’t wait to do my impersonation of him to him), as well as brilliant game changing Professors and artists!

So what am I going to talk about? Life, survival, writing, death and my journey to becoming a spiritual carer. You can register for tickets here. I hope to see you there!

Here’s a likeness of how I looked when I got the phone call, except I was at home …

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The invisibility of illness

Cystic Fibrosis is an often invisible dis-ease. Because my body is working as it should be right now, I’m not underweight as I was pre-transplant. Weighing 38kg was certainly not invisible, and it came with stares and whispers of anorexia and bulimia. I know people who suffer from eating disorders and would never say, ‘if only it was that simple.’ Because it’s not. It never is. That’s not to say my body is free from the ravages of C.F. Even after transplant, I still have C.F. There is no cure. I’m buying time – coming up sixteen years in August – and I’m so bone achingly grateful for my donor and her family.

We all have scars. Some are visible; others are seemingly silent and buried like a restless river just before the bank bursts. I am a quilt. My upper chest is a patchwork of scars from CV lines, port-a-caths, chest drains, my transplant and other invasive therapies I’ve survived. My belly has a nasty scar from where my ileostomy (poo bag) was. The first thing the surgeon said when he saw me after the surgery was, ‘I just managed to miss your tattoo’, but it juts out from where the rainbow begins and is lumpy and misshapen because I ended up with an infection in the wound.

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I was still grateful. I have marks on my body from other medical adventures like skin grafts, but for the most part my dis-ease is invisible except when I have a line hanging out of my neck like this:

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I wrote the following post last year when I was quite sick. It’s called ‘It’s not chemotherapy, but …’ … it’s crushing exhaustion, aching bones, rigours, a barely there appetite, heart palpitations, diarrhoea, nausea, seizing muscles and I can’t seem to get enough sleep. Most mornings it’s a struggle to even sit up in bed, mix my antibiotics and push them through my CV line. ‘Antibiotics?’ I hear you say. Yes – antibiotics. Whenever I get a lung infection and have to have a very obvious CV line indelicately threaded into my jugular and stitched onto my neck, people look at me and assume the worst. I’ve heard people whisper, ‘oh, she must be on chemo,’ or ‘She must be on chemo where she doesn’t lose her hair – how wonderful’, ‘I wonder how long she’s had cancer for?’ and worst of all, ‘I wonder how long she has left?’

For the record, I don’t have cancer – not this year, anyway. But when people find out that I’m on an antibiotic regime and not chemotherapy, they immediately express their relief and tell me that they’re glad it’s ‘nothing too serious’. I guess it’s not ‘too serious’ until the antibiotics stop working and I die.

Right now, I’m on three antibiotics: Meropenem, Cephalothin and Tobramycin. Twice a week I have blood tests done to see if my Tobramycin level is too high, and for the last week it’s been high. High Tobra levels can send me into kidney and liver failure and affect my hearing to the point of going permanently deaf. Before my transplant, my levels were so high, I was falling over from vertigo, headaches and tinnitus. That’s not before the nausea, diarrhoea and rashes. And that’s just one antibiotic.

Tobrymycin has left me a shell of who I was seven days ago. I’m barely getting around my unit and the need to throw up is never far away. I can’t go shopping because this lethargy has me on such a short leash, and I’m afraid of shitting myself in public so I had to have my groceries delivered last night and even then I was too tired to put them away. Again – Tobra is just one antibiotic. Meropenem and Cephalothin can also send me into renal failure and I’ve had consistent nausea and diarrhoea. I need chemotherapeutic grade antiemetics, and the first four days of IV’s – and even now – I couldn’t do a solid shit, was dosed up on fentanyl for pleurisy and had violent sweats and the vomits. But hey … it’s not chemo, is it?

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We must always suspend our judgment of people. I may appear well with my face and body, but I’m not immune to pain, suffering or adversity. No one is. I’m blessed to have a great ‘shell’ (seriously, you should see my legs!), but many others have visible differences that are excruciating to live with, lest people literally picking them out of a crowd because they look different. If you knew what the inside of me looked like, or under my clothes with my patchwork of scars, I would stand out like a scarecrow in a poppy field.

Like me, people survive, live their lives as best they can while still kicking  ass and taking names. I just ask this of you: treat everyone you meet with respect and kindness. Everyone deserves that. The photo below was taken in 2007 when I had cancer surgery and had to have my bowel redirected in the form of an ileostomy. It was taken two days before I grand mal/tonic clonic seizured myself into a coma and ended up in ICU and on the edge of life. Never a nice place. I will always be beyond grateful I survived – scars, skin grafts, designer vagina and all.

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