Labels

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I have eight labels around my neck,

Compartments that you put a piece of me into every time it breaks.

Sometimes you take the label out and look at it with that silent furrowed brow,

You take out your pen and scribble it out.

 

I have eight labels stamped on my being,

Explanations for being not quite right.

I read them so often I forget my own name,

When you doubt them I question my existence and identity.

 

 

I have eight labels stuck to my skin,

You can’t always see them but I feel they’re still there.

Each is an instruction to give me something to swallow,

A licence to brew 14 medicines in one body and see what happens.

 

Sometimes I wear my labels with pride,

Like badges on a lapel and membership to a club.

I want to tell people how heavy they are,

When you question them I feel lost and defensive.

 

There are 8 labels around my neck,

I’m still me.

 

 

 

Somedays

Somedays the world is an ugly place. I know this morning was not helped by the anxiety of returning to England and the early start. Maybe I wore the wrong eyes for viewing it? It was a catalogue of bad sights, smells and tastes.

It started with my bag (too heavy) and a very fast bus ride through Barcelona’s packed streets (the driver was a the love child of Jesus and Otto Mann). Add a dash of concrete pounding and avoiding last night’s dried vomit slicks (the pigeons were enjoying it). Finally to the bus,  despite there being 3 staff, they watched and tutted as both me and my sister (both disabled) couldn’t get my bags in. My hands, which shake all the time now, couldn’t grasp the thin paper ticket (don’t cry).

In the airport I waited by the mobility help kiosk (noted there are no chairs). I watched a man vomiting into a bin for 10 minutes before the cheery Xavi picked me up in a wheelchair (I always book ahead now for mobility and I always ask the name of the person assisting me). When you get assistance at airport you end up in all sorts of corridors and pens waiting, seeing behind the scenes. Once over the embarrassment ( I still get weirded out by crutches and wheelchairs) you get taken in buggies and strange contraptions to get you on the plane. You forget all the normal airport stuff but find yourself saying ‘thank you’ and ‘sorry’ a lot.

I watched amused as the people fight to get ahead in the plane queue. Almost slinking up the walls to get closer to the front. Then our gate changed and everyone made a mad dash across the concourse. The shoal was so choreographed any dancer in a ensemble would be envious. I trailed behind with the cabin crew, no rush, after all we’re all getting on exactly the same plane and our seats are already allocated. The dance continues as people who pay extra can get to the front of the same queue and other frantically sort through bags after bring too many or ones too large. The panic continues on the plane like a game of musical chairs. Last one seated is off,  I guess that’ll be me then (jokes).

Now travelling does something to my head, it makes me time travel to the past or future. I’m terrible at it. I fret and tremble recalling past pains. I nauseate over details of conversations not yet had. I caught myself in the moment of full anxiety (I’m good at catching thoughts by now). I realised what I was doing and I can only describe it as running down a dark alley with doors that open to the past and the future. You witness times of joy and pain and live events that haven’t happened yet (and probably never will). The alley narrows and it gets harder and harder to turn back. As you are squeezed between the ever narrowing walls you realise you’re stuck. It’s so tight and dark you can only see and believe what your brain is showing you. I held back the tears and swallowed the anger. I realised my brain was back in the place of no hope.

By the time I was in my plane seat I’d died a dozen times in my head. To write it down seems ridiculous. As I was drawn back into the real world again I became aware of a boy behind me. He was possibly 8 and making some curious noises. A sort of cry mixed with excitement then outbursts of ‘the plane is going to go. Suddenly the couple behind the family announced the wanted to be moved. This was loud enough for most of the plane to hear. Most people politely stayed looking at their phones but I’m not very good at that. I swivelled round to see a family with children of different ages. This boy clearly had learning difficulties and was anxious at flying. It came out of him in little bursts like he didn’t know whether this was a terrifying place or the most thrilling ride. He hadn’t done anything wrong, he just said out loud the feelings that we probably all were thinking. I watched as the boy’s mother turned in natural defence of her child. ‘Are you asking to move because of my son?’ she asked half vicious in defence and half shocked beyond belief. ‘Yes’ the couple announced to the plane, ‘we are moving because of your son.’ Every part of me wanted to jump in fierce and wild to stop the pain.

I bit my tongue and caught the mum’s eye, I offered her my row of seats in front away from the couple. The cabin crew swept in and expertly moved the couple away to the back of the plane. The mother burst in to tears. The cabin crew tried to placate them both by offering sweets and a ‘trip to the flight deck’. These frantic gestures were lost so they listened whilst the family explained that the couple had been discriminatory and said appalling things about their son. I felt for the mother in that moment, she had tried desperately to shield her child from the horrible hatred. She was in a state of pure panic. How could anyone do this just because the child made a sound or spoke in a way that is ‘abnormal’ (I personally found him a joy)? Later in the journey I turned and caught the mother’s eye. I wanted to say how appalled I was but just mouthed ‘are you ok?’. She whispered back a thank you and smiled. I didn’t want to save her, but just let her know she wasn’t alone and others were with her.

When you enter the world slightly outside of the normal realm you see how difficult and unforgiving the world can be. My sister has talked at length on her blog about grieving (it’s worth a read and is here ). Its not always about the death of a person but sometimes the death of something else, like your expectations or the life you thought you had. I know I have been experiencing extreme grief as part of my relationship breakdown. With this has come a whole lot more. I’ve experienced the death of my life as I know it. I am unable to work, looking at a future on benefits and no longer able to do all the things I once could. Auto Immune has irreparably robbed my life and I sometimes grieve for what I once had.

So forgive me if I get sad from time to time. I’m trying more than you know to keep my shit together. In amongst these moments I cling on to the small acts of kindness we are all capable of performing. Smile at a stranger or ask someones name, it costs nothing but a little bravery. None of us know what path the other is treading, what came before and is to come in the future. Maybe the couple who had asked to move had been anxious flyers or something else had happened that day. Their actions weren’t the best way of behaving, but we all make mistakes right?

I will continue to fight tis anxiety daemon, its not a linear journey and I’ll bounce around. I’ll also continue to to fight the prejudice and invisible illness in the best way I can, with compassion and kindness. I’m back to start all over again.

I saw this today, which says a lot of my ramblings far more succinctly.

Love, and kindness to you all with the most open of hearts.

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Bubble

When I started to write a post about mental health the other day I deviated. I was supposed to write about mental health in general and ended up just pouring my heart onto the page. So back to the original post…

I have many wonderful and talented friends who my life crosses with for fun, creatively and also with work. A few years ago a former student of mine introduced me to Katie, as we both had Lupus in common (I guess the disease is good for something). Immediately we got it, the whole chronic illness thing and everything that comes with it. To make it even better she’s a fellow creative soul.

We collaborated a few times in our quest for invisible illness advocacy and creative therapy. Over the past year Katie has been away studying for her screen writing  MA. We’ve missed having her around but the best thing is that she’s been growing her amazing talent. I know it’s not been easy with battling the daily illness thing and the lack of support she’s had. That just makes it more inspirational that she wrote and directed an amazing short film, Bubble.

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In Bubble we meet Erica and Paul, a couple struggling. ‘Erica’s desperate to burst Paul out of his depression, but on the first day he takes medication, she pushes too hard.’ The film is not really about the depression or how it manifests. It is about a couple and how their relationship copes with the the effects of depression.

Katie explains:

‘The representation of Depression in modern media is so often the sad person, who takes medication, and is sad. The human experience of a mental health problem, for both the sufferer and loved ones observing, is much more complex.

When spending long periods of time with a loved one experiencing Depression, I realised I had no idea how to help, or how to act around him when a black mood descended. I realised I was making things worse, but had no guidance on how else to be. It was then that I realised that there are no examples of stories or films that I knew of which exemplified what I should or could do for my loved one who was suffering so clearly but so internally.

Bubble endeavours to be one such example.’

I knew a little about what had inspired her and she told me a little more :

‘Two things really. Firstly I watched other short films and wanted to have a go to see what I could manage. And secondly I struggled to know how I could help friends  with their depression, so wanted to explore that.’

The film is a snapshot into understanding mental health from all angles. It cleverly puts emphasis on the couple rather than the illness. I think this comes from Katie’s innate understanding of invisible illnesses of all kind. After all we all live with, and experience the the illness someone has when we are close and care. We all learn to cope with it and don’t always get everything right. Invisible illness needs to be talked about, accepted and challenged.

Ohh and I almost forget to mention it, Bubble is up for an award. It’s part of the  Nottingham International Microfilm Festival Audience Award. You can watch and vote for it here:

Today

The streets itch with discontent,

The map was off centre all day.

Childish tears threaten to break through the adult face.

The stone walls sweat yesterday’s rain,

I pound the concrete with sticky heat between the layers of my clothes.

The lipstick curdles and I wipe it raw with paper.

 

Fingers bandaged from no fight,

I’m neither citizen or tourist just broken knees.

Guts cramping propel us from cafe to cafe.

Food sticks in my throat as I push it round the plate.

My hands tremble as they try to raise the cup,

Thick black coffee drives my blistered feet.

 

Something is not right in the world, I’m not quite here or there.

It’s ugly criminals saunter like they own the roads.

We ask ‘why are people so cruel?’

Then the man stops to pick up some other’s rubbish.

A women tends the silk and velvet with more love than she knows.

The smile of the woman on the bus is the most beautiful thing I’ve ever seen.

 

The flash from no camera, the sky opens and moans.

White then orange makes my heart pound.

‘Don’t walk on the floor with bare feet’ she says.

It makes me want to feel it’s force, to feel alive,

to take off my socks and dance with life on the cold tiles.

I bleed with the sky and prepare to begin all over again.

Sharp enough

A friend posted that they could see me ‘developing an edge sharp enough to cut through this’ and carve a new beginning.

There’s been a lot of soul searching going on inside this skull over the past few weeks. But it’s all felt like a dull bladed knife trying to cut through lead.

You feel that you know yourself so well and can see your path. In a heartbeat it changes. A few cruel words that bring your world crashing down. Everything is bought into question. The smallest of routine, even the way you make tea or breathe.

The problem is all the destruction is so silent. Everything has changed for you yet the world still silently remains. It carries on without you. I’ve been walking the streets with voices muffled and blinkers on, yet inside a war rages.

All the rituals you made no longer have purpose and you carry on performing them till they are redundant and ridiculous. I caught myself hanging your washing on the line and didn’t know why… energy wasted on you. Taking two mugs out instead of one for coffee. Every word spoken has to be corrected. ‘We, I mean I.’ ‘Us, I mean me.’

Midway through crisis I saw ‘Things To Come’.

The protagonist’s life was changed in the moment her husband announced it was over, that there was someone else. A few meagre words to change an existence and send a life into crisis. More and more went wrong yet the film seemed so calm. Her life was disintegrating around her like a mirror of my own existence. Love, death, job all at once. Her existence questioned.

We (not the relationship we but the friendship one) waited for the revenge, the meltdown, the affair to match the inner turmoil. But it never came. She got a cat, smoked a joint, cried alone. Were we cheated because of the lack of drama? I felt it at the time because I wanted the catharsis of watching someone else meltdown then make it again. Slowly I’ve realised that there is no instant fix but we quietly feel the pain in order to change.

Inside all this quiet death of a life is a sea of turmoil.  But that’s just it, it’s on the inside and the world keeps on silently turning around us. We have moments of anger in which spiteful words are thrown to try to provoke the world into anger with us. We have reckless moments to feel alive to match the pain in our chests but the world still remains waiting calmly for us. Standing in the field watching the season change and the ghosts of my self harm race by I finally stopped and listened. The world was changing once again, partly dying and going to sleep before being reborn. I would stand and see the ghosts of others before me and those yet to be.

During this time we have the chance to be anything we want to be. We are stripped bare and our inner selves exposed. I’ve cried and stamped my feet, tried to dull the pain, let the blackness from the hurt slip from my tongue. I’ve tried to move this process on without stopping to breathe.

All this has quietly been sharpening my edge. Discovering a self that’s always been here and can thrive. The problem with a sharpened blade is the danger of using it. I need to find and practice new routines. For the first time they are for me.

So I’ve decided to keep it simple. To slowly take little steps one by one. In crisis I did a personality test and found out what I already knew:

To play with the first I’m trying to capture beauty however big or small.

Today we walked on the hills above Barcelona. The view was immense but my favourite thing was this tiny window with its beautiful succulents. Almost overshadowed by the might of the city, someone had taken the time to make it so pretty. My images when I play this game will be captured with the #seekingbeauty

Never stop

 Today’s post is more of a diary entry. It’s a big test day to try to get back to some kind of normality and spend time on my own. It began with a sleep over at my dear friend Beth’s house where I was spoiled by having dinner cooked, playing with all the toys and coffee in bed! 

It was followed by a meeting at the council to get my benefits in place. Easy peasy, and followed up with a quick coffee and toast before returning home. I made a few candles for an order I have on. I was exhausted already so I napped and watched crap TV and tried the anxiety meds in the daytime. I usually take them at night to help me sleep so this was another test.

The next thing I knew I was woken up to Emma knocking on the door. She whisked me away to the next meeting with the community mental health team. A bit of a waste of time in terms of help and info but at least I know where it is! Plus I got to spend time with Emma in the car chatting (one of my favourite things).

So home again to a bath, dinner and more candles. I’ve started to read Marie Kondo’s The Life-Changing Magic of Tidying. Not sure what to think yet as its a lot about how fantastic the technique is but little about the actual doing, I love the idea of being ruthless though. Purge here I come. 


I’ve also been keeping a gratitude diary. The three things I’m grateful for today are:

  1. Friends as they have literally saved my life and continue to make me smile
  2. Duvets
  3. My cat ‘Little Bear’ who has been at my side all day