Unlearning and rewording

I’ve spent the past few days curled up in bed and cuddling a hot water bottle, popping painkillers, snacking on cold toast and leaving half-drunk cups of tea in my wake.

Pain has pinched my edges, lined my brow and sharpened my tongue.

It’s been simmering under the surface for a while now, hot sharp flashes of pain have radiated through my body making me wince and gasp involuntarily. All fiery foreshocks that I have fought to ignore, so determined instead to keep on going, to try and muddle through. So determined to ‘soldier on’ and ‘battle’ through.…

All last week, my shadow was screaming out and yet, it was as if I had noise-cancelling headphones on.

How I wish to turn back to the Lucy of last week and tell her it’s ok to falter, it’s ok to pause and slow down. 

Before I go on, I don’t write this to seek sympathy or pity. 

I write this to myself. 

I write this to try and unlearn some bad habits and untangle some tangles. 

I write this to look at the language that I use when speaking about illness. 

For a very long time, I have felt an ‘ick’, not just with the embarrassment of the horrid symptoms that come with these two chronic conditions I have, not just with the medical misogyny and misunderstanding of these illnesses but also with the ‘battle’ language and metaphors that are used when discussing healthcare and disease. 

For a very long time, I have pushed the pain to the very edges, I have tried to soldier on and keep on, keeping on.

For so long, I’ve told myself a story that I now need to rewrite.

Let me make this clear, I am no warrior.

In fact, that is the last thing I feel I am right now.

I am someone with two conditions that are common yet are notoriously misunderstood, underfunded and under-researched. My illnesses are not life-limiting but they are painful, unpredictable and at times, incredibly disruptive to my day-to-day life.

Although it has felt like a continual uphill struggle and ‘battle’ to be seen, heard and understood, I repeat, I am no warrior and I don’t feel brave.

In fact, right now, I just feel weary.

But, I am also very lucky and today I am feeling grateful.

I have an exceptionally patient, loving and understanding partner and very supportive family and friends. After decades of trying to get an answer, I have a diagnosis and I am on a surgical pathway that will elevate my symptoms and some, hopefully, most of the pain. 

While the journey to get here has at times been infuriating and traumatic, I’m learning to let go of the fury and frustration that has accompanied me along the way. 

I’m learning to be patient, to allow myself the space and time to rest and recover, to stop blaming myself for things that have been out of my control…

I am also learning the impact of the language I use. But most importantly, I’m learning that I am in charge of choosing the lens through which I view my illness. 

I repeat, I am no warrior, I am not a ‘brave’ and I am not going to ‘battle’ through anymore.

So often, there is a temptation to provide answers and a cure when it comes to ill health, so often there is a desire to provide advice and solutions. There can be a temptation to call someone ‘brave’ or a ‘warrior’ and to equate their journey with that of ‘waging a war’ or ‘battle’ against the illness or disease.

But the path and course of a disease is frequently littered with obstacles, bumps and things that are simply bloody unfair and out of one’s control, things that simply cannot be won or conquered…

More often than not, the journey is so intrinsically individual that it can feel very isolating and lonely for the person who is suffering from that condition.

Let me just add a caveat here, I am very aware that for some people the idea of being a ‘warrior’ or ‘survivor’ provides encouragement and motivation to think positively. It can help to pivot their mindset and help them to manage their own situation and help them cope….

But, I am coming to realise that for me this language and the stories I have told myself have led me on a journey where I have pushed myself to the end of my tether and to the limits of my body. As I would so carefully pick and select the words when I write a poem or story, I’m slowly (finally…!) coming to realise the close attention that I need to pay to the language that I use towards myself.

Whenever battle metaphors are used for any type of illness or disease (arguably for anything in life), there is a challenge and a responsibility to consider the impact of the language that we use and an awareness of its potential to create both hope and despair in the person who is living that experience. In a wider context, there is a bigger question as to how we can open up a conversation around illness, so that those who are suffering don’t have to hide in embarrassment or shame, so that they have the space to share their story openly and without judgement.

I have no answers right now, just a growing sense of the damage that words can do and a heightened awareness of the importance of being able to find a way to talk about illness, so that it doesn’t isolate those that it affects.

For now, I will I return to the thought of Lucy from last week, who tried so hard to keep on going, who was so determined to battle through and who crashed and burned quite spectacularly on Sunday afternoon. I wish now I could just give her a hug and stroke her cheek. I wish now I could just scoop her up and put her to bed before it all got too much.

As I look towards my upcoming surgery and the prospect of changing my lens on life again, I’m leaning into being softer, more gentle and intentional with the words that I use and the things that I tell myself.

I’m leaning into finding the tenderness in the day-to-day and into letting go of some of the shackles and pressures that I’ve placed upon myself.

I’m leaning into the chance to say goodbye to some of the dark shouty shadows that have walked beside me and looking forward instead to carrying a lighter way of being.

I’m looking forward to giving myself space and time to heal.

An invitation for you… What kind words do you need to tell yourself today?

---

A little reminder about Solo Retreats

It has been such a pleasure to host some writers recently for a solo retreat, here are some nice words from a recent guest…

“Lucy has created something truly special. The space itself is beautiful, spacious, peaceful and quiet and there are few distractions. It’s a space that’s held with so much care by Lucy, and I arrived to carefully chosen snacks to meet my dietary requirements, thoughtful writing prompts and perfectly selected books and magazines. I got a huge amount of writing done, and was incredibly comfortable for my entire stay. Lucy was on hand if I needed anything, and was the perfect host - there when I needed anything, and so lovely to chat to, while giving me the space and quiet I was there for. I will definitely return and would recommend this space to anyone.”

There’s still time to get some money off selected dates and it would be such a privilege and honour to host you.

About the Retreat

• Take your pick of two or three nights accommodation in a completely self-contained one-bedroom annex at our home near Mitchell, Cornwall
• Space to focus on your craft
• Beautiful surroundings
• Inspiring writing places, from a bright and light well room to a comfy lounge with wood burner, to a dining area with views across the garden
• Ample space to relax and unwind
• Tea, coffee and some snacks provided
• Handpicked and curated resources and materials for your stay
• Local recommendations, suggestions for artists dates and access to lots of books and prompts

Special Offer: Get £50 off on stays taken between 2nd April and 20th April, and from 10th June to 23rd July and 9th September until 15th November, subject to availability.

*Available for stays taken between 2nd April and 20th April and from 10th June to 23rd July and from 9th September until 15th November, subject to availability. To book a non-refundable deposit of £50 will be required, the remaining balance will be due six (6) weeks prior to the start of the retreat. If you wish to spread the cost, you can do so by paying in two (2) installments, the first installment will be due two weeks (2) after booking and the balance will be due six (6) weeks prior to the start of the retreat.

If the cost is a barrier and you would be interested in a retreat, please get in touch with me.

---

Thank you so much for reading.