My Heart’s a Black Feather

“I don’t know what to say, do or be. You were my everything – more than that – you were you.

I’m so good at boxes or compartments, places for people and experiences, for heartache and love. My head is full of them; there’s one for my childhood, firmly closed. One for my adolescence, closed but not locked, like a love-sick diary. My mum has a box that is continually being added to and Ben. Ben has a box which was locked before I even attempted to go through the contents. What a mess. You, Nige, you are not in a box. I couldn’t bear that. I decided a year ago that you wouldn’t be archived but you would stay as an open book by the side of our bed. I decided that I would embrace this tragic experience of ours and feel every second, not skip the painful bits and shut them away. I did this because to do so honours you and improves me.”


Poetry, Reflective

Nothing Is What I Have Now

Nothing was what we once were

And happiness didn’t live there.

Then something became available

We breathed a breathe,

Took a step,

And happily became a pair.


Something was better than nothing

But something wanted more.

So children beckoned us in

We breathed a breathe,

Took a step,

And delightedly we became four.


Everything is what we had then

Nothing fazed us, you see.

Then fate decided to show

We breathed a breathe,

(A long, slow breathe.)

We took a step,

(A faltering step,)

And pulled together as three.


Nothing is what we are now,

Something is missing in here.

But we hold each other tight

We breath a breathe,

We take tiny steps,

We stand together,

Forever and ever.

Everything shows us you’re near.




“People say, ‘Oh, he lives in my heart,’ and I go, ‘Yeah, yeah, no, I know,’ but he doesn’t. I mean he’s in my heart, but he doesn’t live at all.”

Nick Cave



Who Looks After You?

“Who looks after you?” is a question I’m asked most weeks and I usually answer with a smile and a shrug but actually the truth is I’m looked after by everyone and no one.

Family first. I’m not alone as both boys are still living at home and I’m hugely grateful for that. I have my big brother, Nick, who’s doing lots of work around the house so he’s a regular visitor too. The three of them fulfill very different needs in me: Gabriel has a huge sense of justice and helps me to pick my way through my the thoughts that bombard my brain continually, whilst Harry allows me to say out loud my darker, more unthinkable thoughts with no judgement and tremendous humour. They find their dad’s deterioration hard to watch, of course, and so when I’m at work they tend to stay in their bedroom. Although I would prefer them to take a more active approach to Nigel’s care, I’m not keen on playing the ‘guilt’ card. Besides, what do I really know? Could be their laid back approach that’s keeping Nige sane… I mean, to have the three of us constantly watching him isn’t exactly conducive to that relaxed, calming environment we’ve strived so hard for in the past twelve or so months. There’s a price for that, by the way, for the normality we’ve upheld. It’s being charged to our personal lives – Harry’s all spent out, I’m on a low budget and Gabe’s actually managing to save. Between us we’ll even each other out. Through Gabe, there’s Lois. Our very own Little Blue Wolf. I’m not sure I’ve ever met a lovelier person. Honestly, for one so young, so vulnerable, she takes altruism to a whole new level. A week seldom goes by without a message on my phone from Lo, checking up on me and seeing how things are; offering to relieve Nigel’s boredom with impromptu visits… With her own illnesses to combat, I am both amazed and honoured to include her as part of our family, and that extends to her own family too. Then there’s Nick. He helps without knowing it, aside from the obvious help he’s giving with the garage of course. It takes a huge amount of courage to continue to embrace a broken family such as ours. After a week or two away, working or travelling, he bounces back up our steps, not knowing how we are, how Nige looks or sounds: how the cancer has progressed. I can tell by his face if there’s a difference (being with Nige constantly clouds my vision of progression) and that’s an enormous help too. Spiritually, Nick provides me with a constant link with my other self; the Barnes girl with the ‘Doc Martens and roll-up’ attitude who I know will be a huge help to me in the coming months and years. I feel protected when he’s near, without him doing or even saying anything. Which is perfect as he talks very little!

Never one to surround myself with friends, I have found myself quite overwhelmed by the few I do have: Marianne checks in like a warm arm around my shoulder, allowing me to speak or not speak, hearing the silences as well as the rants. She’s done this for me from the very beginning, choosing to ignore my request for isolation and giving me what I actually need; support, as well as the occasional coffee and cake outing. She’s smart and bright, sugar-coats nothing and wastes no words. We’re like two peas in a pod. Gemma gives me her naive perspective on things, paring it down to it’s core. She has a need to understand me, and I do too, so chatting with her often reveals things about me I never knew! She has thanked me over the years for all I have taught her, little understanding just how much I have learned from her. Though, of late, I think she’s realised. Michelle is a haven of fresh air and woodland walks, with the occasional bottle of wine thrown in. She symbolises a future of sorts, my future here, on the Hill, for though I’ve known her for the past five years, our friendship has only really grown since Nigel’s diagnosis. Since then we’ve walked miles of a morning with her dog, shared stories of our pasts and even completed a 26 mile Hike for Macmillan together.

There are more, of course, but these are the friends and family who take care of me without first having to ask. They all just shove their noses into my business, make me face uncomfortable truths and listen. I don’t know how I’d manage without them. The thing is, I don’t do a great job at managing with them either. Oh I think I exude strength and I know I have everybody’s admiration but I am unravelling. I can feel the facade cracking, the tears are constantly waiting to drop and in the darker hours drop, they do. No one can help me. Not with this bit. There are no words, you see. It’s all emotions; raw and terrifying. Now, I know some of you reading this will offer me help (and thank you) but, honestly, I’m right. This bit is for me. If I don’t have a part of myself that is unfixable then how do I know that I ever went on this journey? Where’s my scar? It’s for me to figure out and then to fix, when I’m ready. And I absolutely will. I just can’t tell you when.

So if I come across a little unhinged from time to time, that is just me looking for the best way to manage my raw emotions. It’s temporary (I hope…) and once all the pieces have fallen back into place, I’ll be fine. We will be fine.




Diary, Reflective, Thought of the Day

Who are you and what have you done with Lisa?


In conversations with myself, I have formed many analogies. The analogy of an analogy is a familiar scenario that perfectly describes the indescribable, nay, ludicrous scenario you actually find yourself in. It somehow normalises the whole thing, making you feel less insane and on a par with the world around you.

“You remember Terms of Endearment, that tearjerker film of the 80s, where Debra Winger lay dying with loved ones stifling sobs? Or Guardians of the Galaxy with a young Peter Quill refusing to watch his mother pass away? Well, we were there; seated uncertainly around Nigel’s hospital bed, sharing stories, all raw emotion and tears. Disbelief and hopelessness building up within, filling every internal void. Then, as if the universe needed to take a pee, the pause button was pressed. Whilst on ‘pause’ we seem to have entered a different dimension, where things appear normal. Where Nige is well, working in the garden and sawing up wood for a winter he may not see and, instead it’s the family cat that’s taken on his illness; lying on his deathbed, fighting for every breathe… But we can’t appreciate any of this or capitalise on Nigel’s good health because we are too busy listening for the flush of the toilet, for the universe to return and for the play button to be hit once more.”

c9a408e98943f6db7d3d5856b7922ed2--eckhart-tolle-dark-cloudWhen I say life appears to be normal I mean that Nigel appears to be well… from deathbed to flowerbed in just a few weeks. The steroids have made him emotional of course, and the tumour is still wreaking havoc with his memory and vocabulary but in comparison to the Nigel on pause, this one is fucking dandy. But as we navigate through this other world, we still seem to be stuck eternally in the real one, paused or not. The only difference is that the bed covers have changed from being thin, blue hospital blankets to a deluxe feather quilt, the view is no longer a square courtyard but wild birds and flowers blending into the woods at the back of our house and the visitors aren’t crammed around the bed but coming and going, with room to move around each other. Everything else is the same though; same tears waiting to spill forth, same emotions coursing through our bodies and the exact same illness trying to steal the life of a man beloved to us all.

“It is taking every fibre of my being to resist curling up in an embryonic pose in the centre of the bed, with the quilt heavy on top of me and not move forever. To open the post box, retrieve the mail and open it. To care even the tiniest bit about my appearance. But I’m winning, I think. At least, I am at the moment. You need to do the same Harry, ‘always forward, never back.'”

So while we await the inevitable in one world, we have the opportunity to create many 3064d43c36ca1fea6f21a94628603697--black-watercolor-tattoo-watercolor-paintingsmore memories in this one. We’ve been given a golden ticket to a world where we still have the husband and father we so adore, with added quirks and oddities. But there is a cost; Eccles. In essence we have swapped one deathbed for another and, though terribly sad, I’m okay with that. Eccles, our lone cat, has dodged many bullets in his 16 years and has led a life of unparalleled decadence. Anyway, in cat years he’s 76 and by anyones reckoning, that’s a far more palatable life expectancy than 54.

That’s your lot. For now anyway.