On creativity, sharing and empowerment
Personal aplastic anaemia blogs tend to end abruptly.
Following weeks or months of emotionally charged posts, without announcement, they just… stop.
This leaves my mind to flit anxiously between the only 2 possible scenarios:
a. the patient has grown tired of recounting their health journey and neglected to inform their readers, or
b. the patient has died
18th January 2021
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Home is a beautiful place to be!
10th January 2021
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How hard times can save your life
Don’t you hate that phrase?
“When life gives you lemons… make lemonade!”
You’ve just lost your dream job. Or found out your partner slept with your best friend. Or your kid has contracted a serious illness. And some well-meaning moron tries to infuse you with their glass-half-full approach to life – when all you want to do is scream “Fuck off!” to the world.
29th December, 2020
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Please indulge me. It’s Christmas Eve and the world is ridiculous.
24th December, 2020
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It’s a question we ask and are asked constantly – which is curious, as it tends to elicit such a meaningless response.
“I’m very well, thank you! How are you?”
Any elaboration on all that is going on for you – or just an honest “I feel crap” – is generally received with unease.
These days, I am bombarded with the question – but it is saturated with unprecedented levels of sincerity and compassion.
17th December, 2020
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Being born becomes easier with age – true or false?
I have a bumble bee jasper stone, polished into the shape of a heart, about the size of my big toe.
A jagged grey line cuts right through the stone, bisecting it in the middle, breaking the heart in half.
The left side is yellow flecked with delicate wisps of off-white and golden ochre. The right side is yellow mottled with angry orange splotches, each starkly outlined in grey.
9th December, 2020
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So long, farewell, auf wiedershen, good night
Goodbyes come in many guises.
Some are grief-stricken, some are joyful. Some are laden with regret, some are triumphant. Some are transient, some are final.
This week, I am doing my round of goodbyes.
As I temporarily retreat from ‘normal life’ – knowing that the party will carry on without me – I feel like all the von Trapp kids rolled into one.
2nd December, 2020
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It’s tricky to articulate immense gratitude for a man you don’t know…
26th November, 2020
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Do you remember those saccharine sticks of rock you used to buy at the seaside? The ones with words like ‘Southend on Sea’ impossibly inscribed along the middle.
If you sliced through my bones, you would find the word ‘Planner’ debossed in indelible ink along their core.
How does an inveterate planner prepare for an unfamiliar medical procedure and drawn-out recovery?
18th November, 2020
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Bouncing back after a bad patch
It’s hard to be inside.
I mean, confined to a room with no view of the wild world, no sweet scent of nature, no feel of the vagrant wind caressing your skin.
Last week, I had a trial run as an in-patient. Keyhole surgery and a 2-day hospital stint. A preparatory exercise ahead of the transplant.
9th November, 2020
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Good things come to those who wait
Picture it.
It’s 1998 and the world is spinning faster each day.
The Internet is teaching consumers to want things NOW.
28th October, 2020
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What a hallucinogenic honey hunter can teach you about risk and reward
I’ve been badgering the doctors for the precise risk-profile of my upcoming procedures.
Demanding hard stats – like the fact that 80% of aplastic anaemia patients are still alive 5 years after initial diagnosis.
Percentages that allow me to build a framework around my condition – to neatly place each possible outcome into a box and arrange them in a line of likelihood.
21st October, 2020
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Countless hours have been expended on me this week.
So many resources. Such a vast team of helpers.
How much is one life worth?
14th October, 2020
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The trouble with forcing round pegs into square holes
“Fuck that.”
The nurse gasped.
Some patients craned their necks, to better see the action.
I regretted my choice of vocabulary.
6th October, 2020
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7 ways you can be as healthy as me
Yes, I know, the long version of that title is “7 ways you can be as healthy as a woman whose body doesn’t make enough blood to keep her alive”.
Why on earth should you read on? What could you possibly learn?
Let me explain…
29th September, 2020
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How to view each passing moment with 20/20 vision
Last week I almost cried.
For the first time in 3 months.
I thought my will was getting stronger – but everything got to me.
You know how that happens sometimes? One seemingly innocuous irritation piled on top of another, until you have a precarious tower of anxiety.
23rd September, 2020
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How to be courageous and fearful, certain and unsure
The doctors have almost found me a donor.
A 23-year-old man from England.
He matches my HLA profile and blood type beautifully – two of the three most important criteria for pairing stem cell donors with recipients.
I should be over the moon.
17th September, 2020
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What to do when you’re thriving, and others are failing
Your body is AMAZING. Your blood cells are constantly depleting and being recreated on demand, deep within your bone marrow.
You make billions of new cells every day. That’s several million in the time it’s taken you to read this far.
Feeling awesome yet? You are.
10th September, 2020
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On childhood memories, mortality and the power of positive thinking
One day in primary school, my Year 3 teacher taught a class about bone marrow transplants.
“…afterwards, the patient needs to stay in hospital for many weeks and recover for many months,” she explained.
Stupefied, I raised my hand. “How can it take that long for a person to recover from anything?”
31st August, 2020
About me
Hello! I am Jodie – dancer, writer, yogi, baker, wild-swimmer, traveller, wife, mama, and lover of life… and more recently, severe aplastic anaemia patient.
I blog for catharsis, to raise awareness around a rare life-threatening illness, and to politely ask for your blood.
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