BPD and Me

I’ve written a bit in the past about my struggles with BPD, but I wanted to write about it with a bit more depth as so many people don’t seem to know it’s a thing. Plus, I’m having a lot of trouble with it at the moment, so it should be cathartic. Please note, this will be a LONG post and will likely be full of triggering things like suicide and self harm.

BPD is the abbreviation of Borderline Personality Disorder. I was first diagnosed with the disorder back in 2011 after a referral to a psychiatrist by my GP. I was there to discuss my depression and anxiety, but as I displayed the symptoms for BPD, that became my formal diagnosis.

BPD is not something many people know about. It’s a condition that is usually seeded as a child or young adult from traumatic events and it affects the person in many different ways. Below is the bare bones list of symptoms that medical professionals use to diagnose (The ones in bold are the ones I suffer from):

  1. Impulsive and risky behaviour
  2. Awareness of destructive behaviour, including self injury
  3. Wide mood swings
  4. Short but intense episodes of anxiety or depression
  5. Inappropriate anger and antagonistic behaviour
  6. Difficulty controlling emotions or impulses
  7. Suicidal behaviour
  8. Feeling misunderstood, neglected, alone, empty or hopeless
  9. Fear of being alone or abandonment
  10. Feelings of self hate

[Yes. They’re all bold!]

Each of them can be something that anyone can suffer from in their life, but if you manifest and show at least five of these symptoms at once then there’s a high chance you’ll be diagnosed with BPD. In the US, one in ten mental health sufferers have BPD and if you were hospitalised, a quarter of the inpatients would have BPD.

So, let’s look at each of those things individually.

Impulsive and risky behaviour

This tends to appear as gambling, heavy drinking, drug taking, dangerous sexual practices or affairs or driving recklessly. I’ve had my own issues with gambling in the past and even have to avoid seaside fruit/slot machines nowadays. It’s easy to fall into an addictive cycle because BPD is mostly about avoidance of pressures in life. Like all addictive cycles these things start out as a pleasant distraction but become far worse. Those with BPD are much more likely to become addicted to substances or situations. What makes it worse, is that we can usually see the problems but give ourselves over to the behaviour because we are self destructive.

Awareness of destructive behaviour, including self injury

Which brings me to the second point. The horrid kink of BPD is that we like to be right, even when we have to self destruct in order to be correct. For example, a BPD sufferer may say “Oh, you don’t want to get close to me because I’ll hurt you emotionally” and then they will do what they can to prove their point. They can become nasty, violent or abusive in order to show they were right. They may say that “everything I do will fail” and proceed to sabotage the things they do to prove the point.

This is something I’ve done a lot over the years. When I used to write about videogames I was getting to a point where I was quite good at it. I started to find well paid work, which I then didn’t deliver so that I could show that I was a fuck up. I did the same when writing about books… I got to a point where I was seeing success and creating movements in the industry that were garnering attention and I then backed out of all responsibility in order to show that I wasn’t ever really good enough.

The problem, of course, is that you hurt the people around you. I hurt my friend Naomi by backing out of Diverse December and lumping it all on her. I shouldn’t have done it and I know I shouldn’t but I was being self destructive. I lost friends and contacts that took years to make.

Then comes the self harming or “self injury” as professionals prefer to call it. I’ve cut myself and burned myself many times for the past five years. Most of the time it’s in hard to see places so I could hide it from my loved ones. I’ve always done it in times of self hatred or when I’ve pushed myself to destruction. It becomes a way of feeling ‘alive’ and distracts me from emotional pain with physical pain.

Wide mood swings

I hate the mood swings. I can wake up one morning feeling completely fine and by 1pm I will be cutting myself in the bathroom. It happens in the blink of an eye. I could be walking around the shops feeling confident with my head held high and then I might read a comment online or from a friend that makes me doubt myself or rediscover some form of sadness and I will spiral into a pit of oblivion. It’s a very fragile balance at all times.

Short but intense episodes of anxiety or depression

I think this kind of speaks for itself, but it’s worth highlighting that these periods are incredibly intense. As I said above, I can go from happy to suicidal in a matter of minutes, especially when self confidence or self image comes into play.

Inappropriate anger and antagonistic behaviour

I fucking hate this one. I have the nicest friends in the world. They’re all brilliant in their own ways but that won’t stop be from being a massive cunt to them. And it all comes out of thin air. My best friends know to take it with a pinch of salt or to pull me up on it, but I feel bloody awful knowing that I’m hurting the people I love for little to no reason. I’ll often find myself looking for a fight or an argument, again, because it comes back to being self destructive and being ‘in the right’.

At times I’ve found myself actually looking for reasons to be nasty or antagonistic. When this happens I’ve got better at stopping myself… sadly that’s usually by cutting my arms because my brain has no other options. People with BPD often never learned how to cope with situations or lost the ability after trauma.

Difficulty controlling emotions or impulses

Fuck this one right in the ear. Wanna step out in front of a bus? Want to book a last minute holiday that you can’t afford? Want to spend money on those games you’ll never play? Want to cry yourself to sleep because your friend didn’t reply to a text? Do you want to burn your flesh because you weren’t included in a Twitter conversation? How about getting a tattoo that you never thought about before that minute? Or maybe try hating those around you who are just trying to help?

I’ve done all of those. Pathetic, really. But, it’s something that happens and can’t always be helped. It’s hard to actually say why we do these things. It’s a very intense moment that combines both clarity and a complete lack of awareness. I as the BPD sufferer will know that the people on Twitter didn’t mean to leave me out… but what if they did? Then they don’t like me? Well, that compounds the fact that I don’t like myself, which means I have to feel connected to life or punish myself = self injury.

Suicidal behaviour

This comes in a few flavours. Actual attempts (once for me), planning your suicide (a few times) and suicide ideation (every day). The first is pretty obvious. Sadly yes, I have tried to kill myself once. Nobody knows that. Well, you all do now. It was a long time ago and I was “talked down”.

Planning means what it says; that you know how you’ll do it and likely when you’ll do it. My plans changed over the years. At first my method was jumping from a bridge into motorway traffic. Then I flirted with the idea of taking an overdose or cutting my wrists. Recently I’m all about hanging myself from a particular tree. Something that needs to be mentioned comes next…

Suicidal ideation. The constant want to die. But, it’s not always a want to die. For me, it’s a want to step out of the world and remove the constant pain of life. I don’t want to die – I want to see my kids grow up and I want to see if Trump really does destroy civilisation. But, I do want to press pause on things. Sadly that often ends up at suicidal thoughts because it’s the complete removal of all problems.

Feeling misunderstood, neglected, alone, empty or hopeless

I’ve kind of touched on this in a few of the above points. Let’s just say that for many BPD sufferers life is all about being abandoned by those you love. Annoyingly BPD makes you feel like you stick out like a sore thumb and that nobody really knows how we feel. Most of the time that’s the mental health issue lying to us, but we still feel hopeless.

Fear of being alone or abandonment

I don’t usually talk about the outcomes of my therapy sessions, but let’s do it anyway. This was my trigger… twice. I was abandoned by my father before I was even born and then abandoned by my daughter when she died. The former is a worthless cunt, but it doesn’t stop fucking hurting. He didn’t want me. It happens to too many of us. He literally had no interest in me. The latter, couldn’t be helped, but it happened anyway. It’s not so much abandonment when it comes to Amelia, it’s the isolation that came with it; the fact that only I lived certain aspects of her death and saw every fraction of it happen.

Feelings of self hate

Pretty self explanatory, this one. We all do it, but some more than others. Someone who doesn’t have BPD will say “oh I hate myself sometimes” and they’ll feel bad but get on with things. A BPD sufferer may say the same thing, but they will follow it up with days of going over and over the issue, they’ll self injure and begin to act recklessly out of the hate for themselves.

*

My BPD is causing no end of issues at the moment. It’s fracturing relationships with people I care for – making me act like a lunatic (I’m so, so sorry if you’re reading this). It’s stopping me from diving into life and enjoying things – I’ve stopped spending as much time with my kids because “why would they want a loser as a dad?”.

All of the bad decisions I’ve made in life have stemmed from my personality disorder. All of the broken friendships, stupid actions and failed attempts have come from this want to self destruct. I try to pride myself on my writing, but no matter how much I think about it, I can’t quite put this all into words. I want to be able to bottle how I feel and give it to others so they can see what I’m doing to myself every day. I want to be able to depict just how each of these things makes me feel and how much they hurt, but I can’t.

I want other BPD sufferers to know they aren’t alone. I’m trying to learn to live with mine. I’m currently taking steps in many ways to do this; counselling, self help CBT, medication and mindfulness. It’s tough going, but I want to get there.

I want to take a moment here… I want to apologise to several people (who I won’t name) because I let them down. I offended them when I shouldn’t have. I didn’t deliver on promises. I wasn’t there for you when you needed me. I pushed you away when all you wanted to do was help. I’m sorry for going overboard or being over the top. I’m sorry for making things awkward.

But Am I Though?

Last night I sat back to watch a film on Amazon Prime. I browsed my watchlist for options and came upon something that looked quite funny. It’s a little known British film called Adult Life Skills. It’s really rather brilliant, especially in terms of acting as you generally forget that you’re watching actors and feel that you’re looking onto people. Anyway, I was laughing my way through it and then the film began to ease in a more dramatic side. The central character, thirty year old Anna, is bereaved from her twin brother Billy. The film focuses a lot on his absence and how it affects her.

I’m used to sad films and generally take them in my stride as I sniffle out the odd tear. But, then came a line of dialogue from Anna which took the wind from my sails. Anna is approached by a guy who quite fancies her and he’s trying to get her to go home (she’d hiding in a wooded area) when she turns to him and says “Am I still a twin even though my twin is dead?”

This line produced instant tears on my part. A very similar question has dogged me for years… Am I still a dad to Amelia even though she died?

The natural reaction is to say yes. The guy in the film said no to Anna. He said no because she lost the other half to her pairing. If I were to ask anyone this question, they’d say “of course, you’re still her dad”. However, to me at least, the word ‘dad’ means something very different to ‘father’. To me, a dad is someone who is always there; someone who helps and protects you. I think in this way because I never had a dad, I had a father. A father being someone who supplies his sperm and little else.

So, using my own terminology I can’t still be her dad because she isn’t here for me to care for. Of course, this is all semantics, really, but it’s still a valid question and one that has sat with me for a very long time. I remember asking people in the first year after Amelia died and people saying yes was kneejerk and comforting. Over the years I’ve found myself still asking, though. After all, Amelia was my firstborn – all my first acts as a dad were with her and as she is no longer here does that mean I’m a dad in past tense only?

You can Google the question and nothing helpful will come up because it’s not a question one feels they’ll ever ask. But, I’ve met many bereaved parents who say the same thing, they wonder what their connection is after the child has passed on. I suppose it depends on how you view a possible afterlife. If your view is that the child is still looking down on you, then perhaps you’re less likely to question that bond as you believe that they’re still with you in some way.

I don’t believe in anything like that. I believe in memories and moments that are stored in my mind, so is this why I find it so hard to figure out my current relationship with my daughter? Or is it because I’m naturally pessimistic? This latter idea would hold weight as, being a pessimist, I question everything more than I would if I lived a more optimistic life. So, the question still stands; Am I still her dad?

I suppose, no matter how much I ask, I don’t really want an answer. Either outcome will only solidify my sadness further and it’s a question that can’t be objectively answered, because it comes down to the personal beliefs of the individual.

Owning My Own Land

By my 25th birthday I owned a plot of land. It’s in a quiet area although it’s fairly built up as residents keep appearing. It’s set just off of a main road but the noise from the traffic doesn’t really carry. There’s a Tesco about 3 minutes away and a new McDonalds has recently opened near the bowling alley. The actual plot is surrounded by greenery and all types of stone… but mostly granite; some marble. To reach my plot, you need to walk past so many others; mine is tucked away near the back. It won’t be long and there won’t be any space left.

They don’t allow cars, but it’s a nice peaceful walk. The whole area is kept tidy by the local council, but there’s never really any rubbish about. Most people just leave flowers. There’s a certain ambience to the area, it’s all very hushed. It’s quite religious, but there’s a wonderful diversity of people. Of course, people of all ages are here. Elderly next to children, young men next to baby girls. A quick scan of the grounds and you can see plenty of Christian crosses and Stars of David.

There are photographs dotted around and usually always a balloon lending a birthday atmosphere. One of my direct neighbours has left their plot to lie derelict and broken. All that adorns their land is a small wooden cross with a dirty brass plaque. Old, plastic flowers stay in place and are faded by the sun and the rain.

Christmas is always a lovely time. Many plots are decorated with wreathes or tiny Christmas trees with red and gold baubles. Sadly the visits tend to drop off again after Boxing day and the council men usually throw out the festive decorations because the families don’t return for weeks.

It’s not much of a plot but it’s mine. The deed to it sits in a drawer inside a sealed envelope. Only one resident on the plot so far, thankfully. Room for two more, apparently.

Poem from 2014: Intra-Cranial

Intra-Cranial
How did you get this way     what brought you here
That is a long story     and a difficult one to tell     my daughter Died
God
it was hard     but     the end
Do you want to tell me     about the end
It must have been difficult

Yes     in a room     a picture     there may have been
the light     the seat     the tears
A picture
A scan     my mind     can’t recollect

What did she say
That it would be hard
that the second surgery     the craniectomy     went well     a section removed
A section of her skull     to stop the swell
they did another     scan in the morning

it was worse     her brain had
It’s okay     you don’t have to
But     I do
the grey and white cells     there was no definition
now

she said 80 percent
gone
she said Thiopentone was maximum     severe cerebral odema
I asked the chances     she said she wouldn’t

walk     talk     see     hear     feed
broken     I asked     do you think it best that we turn off support
What did she say
She said     she said it was a brave choice     her lungs     diabetes insipidus
she said she would make arrangements     and asked if she could     I said no

all I wanted was to go back
back to her bedside
and that was what she said

Poem from 2014: Fading

Fading.

Here’s a shard of warmth I’ll carry, that faded from you.

I’m holding my breath, in mimicry, uselessly urging, knowing finality,

but,

if I? Will you?

That teasing sign of life is absent,

strength sinks through me, yet there is enough for this,

for you.

On the backs of eyelids, this snapshot will forever remain.

You lay here, I sit, daring not to move, so much like three years past.

That was then. Different machines, another room,

in my arms, I bear your weight.

The silence is a mute scream, an inward scar rending throughout,

no more Banana Pancakes, only the rustle of clothes plays your exit.

You are our fixed point.

Everyone leaves,

everybody’s here.

Beyond, snow falls as feathers gather,

creating a

space,

a blank

void,

a clean canvas, this unwanted fresh start.

Time runs and slips, changing form,

once we begged and now we begin again,

please.

Not long left, messages are passed and broadcast like smoke signals,

the world needs to know! God damn you, fuck you any lords above!

Our tears flow over the sentence given,

she cries too, they aren’t robots, at all.

The only possible absolute is a question, a decision,

one that will linger and haunt, forever at my back,

until my time comes.

Alone then, as now.

There may have been a picture, she said eighty percent,

I wish the conversation had been different,

my sweet girl.

Poem from 2014: Five Pounds? Oh, Okay.

Five Pounds?! Oh, Okay.

Since He and I combined, I waited for this moment.
I prayed to see the sun, if only a glimpse, yearning to escape the darkness.
Passed from calloused palm to your eager hand. You hold me tightly with a clammy touch.
I will keep lookout; a playful, rotund sentry.
I’ve heard rumours our time may be short.
Our tightness, our connection is unravelling – unknown to you.
Perhaps I longed too hard for freedom, perhaps too willingly,
I can’t cling on, I will steal a last look at your joy. The joy I bring.

Your piercing cry is obliterated by altitude. Solidity rushes into space.
Eyes glance up, hands shading the glare. I sense sadness envelop those who witness.
Some of them point.
Others sip their coffees, distracted by chirps and pips. A flashing in their hands.
I will never know your name. I am now uncatchable; dwindling,
flapping uselessly in the wind,
I cannot change this fate.

Warmth fades, deflating me. He is inside, fighting for me,
trying to prevent the inevitable.
He is wrapped in glimmer, I am beaded with moisture, a sparkle, a dazzling dot,
just a speck in a cloud.
Vapour trails frame my end of days.
There goes my escaping breath,
He rises. He is noble.

Poem from 2014: Contentezza

Contentezza.
Under vaulted ceilings, history on display in brushstrokes;
Outside, crosses skim the heavens, light reflects around,
Insignificance is apparent.
Through labyrinthine streets, feet trip on cobbles, to find a bed of water,
couples rocked as if sleeping babes.
“There’s so much to see and feel!” There, the lions roared,
here we drink the blood of Christ.
“Hold your hands up. Look as if you’re propping it up”
Everything the eye spies is a delight.

A patter of voices trip each other, flowing, lilting,
such cadence,
struck dumb, in awe of lyrical beauty.
Earthy scents drift, cut with acidity and steeped in heritage,
a Nonna works her hands, slick with oil.
Khaki green globes spill from earthen bowls,
among a constellation of crumbs,
blonde ribbons coated in orange, red; littered with flecks of fragrance.
Laughter leaks from shuttered panes, the sound of breaking bread,
“prendere un po ‘di più”.

Antiquity in grains of dirt, exquisite delicacy from stone,
“in the marble until he set it free”.
Dusk approaches, evening a kaleidoscopic palette,
discarded at days end by Correggio,
picked up at dawn, Canaletto flourishes,
unleashing azure and sapphire skies.

Remembering part 4

It took a long time for Amelia’s funeral to take place. Due to the nature of her death, there was an inquest which delayed her cremation. I want to talk a bit about the actual car accident, the inquest and what followed for me. It was natural for me to harbour a lot of anger towards what happened to Amelia and it’s something I’ve held onto for a long time. I’m not sure what would have helped me more, but the inquest into the accident returned with no blame to be placed at any feet. It was simply an accident. It may have helped me over the years to be able to place blame on either driver, but that anger and blame has had nowhere to go.

Only two cars were involved in the accident. The other car was driven by a young woman with her friend as a passenger. I’ve never met either of them, though I’m sure if I’d attended the inquest I would have. That’s another thing I regret. I should have been at the inquest, but it all seemed too much for me at the time. Plus, if blame had been placed on either driver, I’m not sure how I would have reacted. I’m not sure what the other people have done with their lives. I like to imagine that they think about that day a lot and that two people lost their lives. I like to think that maybe they live with mental health problems as I do.

Quite often I’ll have conversations with the other driver in my head. I tell her that it wasn’t her fault and that the deaths couldn’t be prevented. No matter how much anger I feel, I can’t aim it at her. She was just another unfortunate piece of the accident that day. I want to be able to tell her that she shouldn’t feel guilty, if she even does. Of course, I hope she does, because otherwise that would make her a callous person and it would give me somewhere to aim my rage.

And rage is the best word for it. But it’s not something I want to let out. Any parent is going to be angry that their child died. It’s not the natural order of things; nobody should have to pick out their child’s coffin. However, the anger I feel is blind rage. It’s a seething pressure cooker that could explode at any moment. It’s the red mist that descends, it’s the punches and kicks I’ll never throw. And it’s another facet of bereavement that nobody tells you how to handle. Nobody sits there and guides you in dealing with that anger because it’s unique. Sure, bereavement counselling will go some way to help, but each person will feel a different kind of anger just as they would each cope with grief in different ways.

So I’ve buried a lot of anger for a long time. On top of that, I’ve buried a lot of guilt. The guilt manifests itself in many ways. At first I blamed myself for not being with my family when the accident happened… but then who would have stood by the beds? Who would have taken the advice on board? Then my guilt moved to the fact that I signed away my daughter’s life. Of course, I had all the information I needed and my own principles would never have seen her kept alive, but that doesn’t make the decision I made any easier. I was 24 when I made that decision; the same age that my friends were still out drinking and meeting new people.

My guilt now lingers around the idea that my grief has been with me for so long. It’s also placed upon me by external factors; especially when people say things like “but Amelia wouldn’t want to see this happening”. The guilt is a big part of living with bereavement and it’s something I’ve still not learned to handle.

My counsellor asked me recently how I think I would feel if that guilt and anger stopped existing. Of course, it’s a tough question to answer, but my initial reaction was surprising. I found that I believed that if those feelings disappeared it would mean that I was forgetting Amelia herself. I’ve spent ten years with these feelings and it’s become how I naturally think about her and her legacy. I know it’s not the way I want to feel, but it’s become natural. Take those emotions away and what do I have left? As I wrote in the last part I don’t have any happy memories, so I feel like I’d be left with a void. I know I need to learn how to remember her in happier times and that’s going to take a lot of work.

Remembering Part 3

I don’t generally like putting pictures of my kids on the internet, but I feel like those who are reading this should see Amelia…

The day after Amelia died I wanted to see her again. I wanted to spend some time with her body in the hope that it would make everything feel a little more real. Following the routine of the days preceding, I walked onto the intensive care unit to speak to the nurses I’d become so close to. During my time in GOSH I’d grown to love the nurses who took care of the kids. They were working with a passion that doesn’t end when the working day does. I always thought Amelia had a favourite nurse. Her name was Aimee. Whenever she was on shift Amelia’s pressure monitor would lower and the whole area had a sense of peace.

I entered PICU (Paediatric Intensive Care Unit) to find Aimee who seemed at a loss. When she saw me we hugged and cried. We had a connection that stayed for some time and it was clear to see that Amelia’s death had an impact on everybody (something I’ll come back to). She found a doctor to take me to see Amelia’s body.

Thankfully not many people will ever see the inside of Great Ormond Street Hospital and even fewer will see it as a bereaved parent. It’s quite the maze inside. I was led to a corridor that looked like all others by this doctor who then reached out and activated a hidden door in the wall. Inside was a room decorated like a child’s bedroom. There was a fireplace, a wooden bedframe, a bedside cabinet and chair. The walls were covered with colours and a rug on the floor added a comforting touch. Amelia was in the bed, the lights were dimmed and I was told I could spend as long as I needed with her.

To see her in that setting was both wonderful and terrifying. To know that my child laid there with no life in her body, but was seen in such a familiar setting added an eerie tone to my visit. However, it was a relief to see her without wires and tubes covering her body and the staff had placed her in pyjamas. She looked more human than she had for days and yet this was the furthest she’d been from just that.

I talked to her for a long time. I was proud of how much she’d fought against her injuries and I was proud that she made the journey into death on her own. It’s odd to write that sentence. Although we gathered around her bed as she died, only she could take that last step. Something irrational inside me saw her as a lonely figure travelling to a place where I couldn’t exist. I’d bought an A4 lined notebook and a pen in the shop to write her a letter. I’ve always expressed myself better in writing than in speech and I wanted to tell her everything I felt inside. I can’t remember one single word that I wrote that morning, but – weeks later – I placed the letter inside her coffin with the crazy hope that she’d know of the words I wrote.

I also wanted to write to two of her nurses. Those words I can remember. I told them I loved them for how they’d cared for my daughter. I told them I was proud of them and that I hoped their dreams would come true. Over the nights we’d talked about their goals in life. I wanted these people to achieve everything they could imagine for the acts they showed my family. Yes, it is their job, but with every movement they made you could see the care, the passion and the belief they personally held towards the kids they cared for. Never have I seen such strong and caring women who face adversity each and every day.

I left GOSH later that day to travel back home. Amelia’s body would be transported to the local hospital where I’d visit her every day until her transfer to the funeral home. Even in death I read to her each time I saw her. I found myself buying books that I could read to her and would later in life read to her sisters. I never made it through a story without crying. A favourite was The Gruffalo, which she’d enjoyed in life and my favourite was The Velveteen Rabbit, which I still read on the anniversary of her death each year.

I want to skip forward here. I could talk about sleeping in the hospital bed next to my partner for the following week; I could talk about her father’s funeral. But, I want to write about Amelia’s funeral and the planning it required.

The first time I walked into the funeral home to see the undertakers I knew what to expect as I’d been around the arrangements of my partner’s father’s funeral. I knew I’d have to talk about whether Amelia would be buried or cremated. I knew I’d have to choose a coffin with my partner and I knew we’d discuss how we saw the day take place.

We chose a “children’s coffin”. The outside depicted a woodland scene full of fairies and animals. It was green and brown and pink. I asked my partner’s cousins and my best friends to be her pallbearers. We chose a dress for her to be cremated in. It was her favourite; a white dress with coloured polka dots. We chose an array of stuffed animals that were her companions in life to be her companions in death. Into the coffin went Flopsy, Mopsy, Mr Otter and others. We asked that everyone who attended the funeral wore an item of pink or purple – Amelia’s favourite colours – and that rather than buying flowers they donate the money to GOSH instead.

Her preschool teachers asked if they could help with anything. We asked them if Amelia’s class could make handprint butterflies which would decorate the alter during the funeral. The preschool was later named after Amelia and they have a memorial garden there. We chose songs to be played during the service, I created an Order of Service to give me something to do and I wrote a eulogy. I couldn’t read the eulogy on the day because of the overwhelming emotions. I asked my uncle to read it because he is a stand up comedian and I knew he could handle the pressure… though he struggled to read it, too.

I wish I’d had the courage to read it. They were my words and they should have come from me. If I can find a copy of it I’ll post it on here.

Through all of my experience I later developed PTSD from everything I saw and lived through. One of the most affecting times was visiting Amelia for the last time in the funeral home. We’d been asked if we wanted to see her laid to rest in the coffin. My partner refused and I wish I had too. She laid in the coffin surrounded by her stuffed toys, dressed in her white with polka dots. Her face was caked in make up to disguise the deathly pallor and the injuries on her face. The hair that remained was side combed to cover her surgical scars/wounds and she no longer looked like Amelia. She looked fake, as if all of this was some elaborate joke.

I wanted a last connection with her so I reached out to stroke her cheek. She was cold to the touch. Of course she was, but it came as a shock. I snatched my hand back and noticed that her flesh had stayed imprinted with my touch. Where I’d pressed her cheek, the skin didn’t spring back. I still see that imprint when I think of her now.

One of the things nobody tells you when your child dies is how you will remember them. You hope that each memory will be of them talking or dancing or singing. Maybe for some bereaved parents this is the case. I know that’s how my partner remembers Amelia, but I can’t. It takes a lot of effort to remember Amelia alive and well. Those final days and weeks have overtaken everything else for me. If I think hard, I can remember one moment with her and no others. I can remember her standing by my bed, balanced on the edge as she remarked on the t-shirt I was wearing at the time. She thought I looked like a bumblebee. Other than that moment I can’t remember her any longer. All I see is that imprint, the tubes and wires, the cold feel of her skin, the ambulance arriving, the missing hair.

Her funeral was a bright sunny day. She’d died as snow fell outside and was cremated by the light of the sun. Hundreds of people attended; family, friends, neighbours, teachers, even people who’d only met her one or two times. Even those who only knew of her as a child in a bed in a hospital. Her death affected everyone in different ways. The person I often think of is my sister Chloe. There was less than two years between Amelia and Chloe, they were best friends. After Amelia died it took weeks for me to be able to spend time with my sister. When we finally did see each other again, Chloe put her hand in mine and told me she’d missed me. It was hard not to see Amelia in her and it still is. Chloe is now a teenager and every single time I see her I wonder what Amelia would have been like now.

It never gets easier…

Remembering part 2

Writing this part had to be done as bluntly as possible. Only plain facts and language can carry the weight of what happened.

It was February 3rd 2007. I was at work and it was a normal Saturday. Then I got a phone call on my mobile. It was from my partner but when I answered a man named Kevin spoke to me. He told me that there had been an accident and that I needed to get to the hospital to meet my family there. My initial reaction was to ask what happened. He simply repeated himself. I never got to thank him for staying as calm as he did. He would have been stood next what turned out to be a horrific car crash.

My partner had taken Amelia out for the day to ride her new bike (something I never got to see). Her mum and dad went with them. The day ended. As they pulled out of the car park they were hit on the driver’s side by another vehicle. The hit killed my partner’s dad outright. Amelia was sat in the seat behind him and she suffered severe brain damage from the impact.

Everyone was rushed to hospital where I was waiting, expecting nothing more than some whiplash and maybe some bruises. What I saw still haunts me today. An ambulance pulled up outside Accident and Emergency, where I was already waiting. As the paramedics exited they called out for paediatric care. Understandably my heart sank to my stomach. When they opened the rear doors they carried my daughter’s car seat with her lifeless body still strapped in. All I could see were her patent leather shoes bobbing about on the edge of the seat. And then she was gone in a whirlwind of doctors and nurses.

I’m not sure I’ve ever screamed as loudly as I did at that moment. It was a raw and guttural cry that shook my bones. As I looked up I could see the female paramedic break down in tears and be comforted by her partner. It was obviously very bad.

I’m not entirely sure why, maybe I was told and I just don’t remember, but they couldn’t air lift Amelia. I was told that she’d need to go into London for treatment as her injuries were beyond the staff at the hospital. The police set up a rolling road block and shut down the motorways in order for her to reach Great Ormond Street Hospital. She was there in under 30 minutes. I was still at the hospital waiting for my partner and her mum to arrive. Their injuries were relatively minor and I needed to be with Amelia. My mum and Step Dad arrived to take me to London.

Now we’re caught up. So, I’m standing at the foot of her bed in intensive care with doctors and nurses talking to me but all I could hear was a distant mumbling; as if I was submerged in water. I walked past them to my daughter and kissed her forehead, only then did everything around me become clear. I was put up on a sofa bed in the family room for the night. I don’t honestly know where my mum and dad went. I remember sleeping in my suit and waking up realising that all of this had actually happened.

I remember as I walked back onto the ward to see how Amelia was doing that I expected her to be fine. I was in a rather chirpy mood, the reality of the situation hadn’t sunk in. Only when I saw her in the light of day did I understand just how badly she was injured. She’d undergone several hours of surgery and a blood transfusion. The doctors removed half of her skull so that her brain could swell freely and begin to heal. If I’m honest my first thought was “so where’s the other bit of her skull, then?” As I’ve said, we react oddly in such situations. At first everyone was rather optimistic and we all fell into a routine of sitting by her bed watching the ICP.

I was alone in all decision making. My partner, who was pregnant, was still in hospital at home. She’d broken some bones and had severe bruising. The doctors were concerned about the baby, so she was forced to stay for longer than we expected. She spent most of those days high on morphine. Despite my mum and friends surrounding me, everything had to be decided by me. I had to put my signature to many forms that would ultimately decide the course of action to be taken. And after five days, I had to sign a form to give my consent to switch off Amelia’s life support. But I’m jumping ahead…

Lots of things happened. Many people visited and it was all as if they orbited around Amelia and me. We were the centre of this situation. I’m her dad, I’m meant to protect her from things. Nobody could drag me away from her bed, but I had to relent in the end. Rarely was I away from the ward for long. Only to eat and sleep. The latter obviously didn’t come easily. In fact neither did the former.

Over five days we watched the ICP monitor. We helped moisturise her skin and feed her. The feeding was done via a tube which connected to a syringe. Inside the syringe was a murky beige liquid. We’d have to stand by her bed holding it in the air while gravity did its job. But it was a connection to her and made us feel like we were caring and doing our bit. After all, we couldn’t do anything else. We’d play music and take turns reading stories in the hope that she could hear us. We’d talk to her and tell her jokes all while watching that bloody monitor for signs that we were getting through.

Whether we did or not, we’ll never know. Amelia died on February 8th. She developed pneumonia, the swelling on her brain wasn’t stopping and her lungs were filling with fluid. A second operation hadn’t helped and on the morning of the 8th she had a brain scan. I walked into the room alone and sat there while the specialists told me everything they needed to say. Her brain was 80% dead. She would never walk, talk, breath without a machine. She would never sing, skip or eat. And that was if she survived. There was a strong chance she would have a heart attack because of the strain on her body.

Two days prior we’d witnessed a 13 year old girl go into cardiac arrest on the ward. We watched as her family broke down and collapsed to the floor. We watched as the doctors restarted her heart and we watched as her parents crumbled. I couldn’t do that. I couldn’t let Amelia go through that and even if she didn’t, I couldn’t let her live out her years in a hospital bed. She was given low odds of surviving. I asked “Should we switch off her life support?” The consultant could only reply by crying and nodding her head. Amelia died later that afternoon surrounded by her family.

My partner and her mum were brought up in an ambulance to say their goodbyes. The worst part of that was that my partner was still dosed up on morphine… she believed that she was just visiting. She believed all along that Amelia would be fine. It never sunk in until she had to say goodbye. I’m still not sure how I managed to keep things together. Amelia died about 90 seconds after her life support was removed. She was three years, three months and twenty days old.

The family filtered out of the room and I got to hold my daughter one last time.

I wish I could describe how that felt. Her life had left her body and she was lifted into my arms. I can’t explain how that felt, no matter how hard I try. I sat there for an amount of time that went too quickly and didn’t stop talking to her. She felt empty. Her skin held the warmth that was familiar to me and despite that moment being entirely harrowing, I’ll always treasure it.

When I left the room myself and said goodbye to my partner and her mum, I knew that I’d never recover…