Tag: kindness

Transplanniversary, with a solar eclipse chaser

We all reach places in life. Crossroads, turning points, junctures, choices, decisions – even Rubicon moments. For me, after nineteen years, I’ve reached a place of happiness and peace having come into the quiet of my heart. I feel settled. Life is simple, so I’m going with the ease and grace of that.

I’ve done a lot of letting go since I did some deep spiritual work earlier in the year. Relationships, patterns, behaviours, concepts, survivor’s guilt … the list goes on. We all release shit as our lives evolve, and it just so happens that this has been the year to let go of shit that just doesn’t serve me anymore.

Last night, I did a solar eclipse meditation where I anchored myself to the ground, and drew in the energy of the stars, the sun and the moon, and plugged into cosmos. This morning, I released it. I splintered it into a trillion pieces so that soft shards of love went to every human, animal and plant. Then I made myself a cup of tea, and sat in the garden; the sun at my back, the wind brushing my skin, and the hum of bees and the prattle of birds in the peach tree.

There was no rush. Just the warmth of the sun above me, a hot cuppa in my hands, and two dogs that came to greet me after their breakfast.

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It’s hard to believe that as I write, this time nineteen years ago I was on life support in intensive care after having surgery for a double lung transplant. I very nearly croaked it, as my friend Nic would say, and over the years I’ve come far too close to dying more times than is comfortable.

Like last year, I’m going to mark this year’s Transplanniversary by having an otherwise ordinary day. There’ll be no celebration. Instead, there’ll be a silent commemoration for my donor and her family who I know are still grieving after nearly two decades. A family who will grieve for their daughter, sister, wife and friend until the end of time. That is something that is never lost on me. Not ever.

There’s so much grace and wonder in the every day, and we forget that it’s even there. We’re all guilty – focusing on shit that shouldn’t concern us, like what people think of us, our beliefs and values, how we look, how we should act, how to go about our business, life, relationships.

The older you get, the less attention you dedicate to what others think about how you should be living your life. You only get one, so my hard won advice is to gather yourself up and find the marvellous in the mundane (for some strange reason, doing laundry brings me unparalleled joy), and revel in the fact that after all these years, Dr. Seuss is still right – ‘today you are You, that is truer than true. There is no one alive who is Youer that You’.

So go and grab your beautiful, messy life by the vagina (they’re far more resilient than balls), and shape it into something you’d be proud to look back on either at the end of the day, or at the end of your life. In the end, the only thing that matters is the love you give, the love you share, and the love you get back. Oh, and be kind, compassionate and do your best to help other people. That’s the secret to true happiness. You can thank me later.

Endnote: My mum turns seventy next week. She has loved me, nurtured me, taught and guided me. She’s been the kindest, most loving and selfless mother a person could ever ask for. Yeah, I know – that’s a lot for a person to be, but she’s been all that and more. Jewel by name, and Jewel by nature. Also the bravest person I know. Love and kindness is the answer, people.

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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