3 years on – gone, but absolutely not forgotten

3 years ago today, my Dad died. He died, as most people reading this will probably already know, from Motor Neurone Disease, a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord.

For my Dad, this meant losing his voice in 2010, his ability to eat and drink normally in 2011, his ability to move independently in 2012 and his life in 2013.

As hideous as this was to watch for me, my younger brothers and sister, my Mum and the rest of my family, there were things that made it a little more bearable. For example, the MND West Yorkshire branch provided my Dad with an iPhone when he first lost his voice, which he used to type what he wanted to say, and an app would speak on his behalf.

Another thing that made things a little easier was some of the care he received – he had a fantastic GP. Ultimately, what made most of it bearable was Dad’s attitude, especially in the first 3 years of his diagnosis from 2009, when he would continue playing 2 rounds of golf a day, and finishing off with a couple of pints through his PEG tube.


However, towards the end, when things were pretty rough, Dad couldn’t communicate with us using his phone or his iPad, and we waited to hopefully receive a piece of equipment called an Eye Gaze, which Dad could have used to communicate with us, rather than us asking a million questions and waiting for a thumbs up to say whether we were on the right lines or not.

We got the go ahead for an Eye Gaze eventually – in the week after Dad died. That meant my Dad died without being able to speak with us properly for months. We didn’t know his final wishes. We didn’t know how much pain he was in. He couldn’t tell us what he felt, or what he wanted, and this fact has haunted me ever since.

To mark the 3rd anniversary of his death, I would like to really focus on MND’s latest campaign, Champion the Charter. The campaign builds on the success of the Charter which was signed by over 33,000 individuals and was presented to Downing Street last summer. The campaign aims to get more councils adopting the charter, which aims to ensure that people with MND and their carers receive the right care, in the right place, at the right time, live the highest quality of life possible and achieve dignity in death.

The progress made in the last 3 years has been phenomenal, and it is highly likely that if my Dad was around today and needing an Eye Gaze, he may well have received one before his death – I cannot explain how incredible that would have been.

Please, please take 5 minutes to drop an email to your local councillor about the Charter. It’s so easy, as the MND Association have set out all you need here including email templates and other materials.

It would be a fantastic legacy for all those who have died from MND without the right care and equipment, to ensure that others don’t suffer this indignity in the future. Please get in touch if you have any questions and I can point you in the right direction.

Missing you every day, Dad, but particularly today. I’ll have a Crabbies for you later on!

After I posted my blog post yesterday about my dad, I felt so much more in control of life. I went from being a nervous wreck to feeling calm and stable – and I really think that was due to writing down the thoughts, and putting them on to a page that other people might come across.

I’m still deciding whether or not to share this with friends/family/twitter acquaintances, so if you are one of those people you’ll either have stumbled across this by a mistake, or I have made the decision to share!

Either way, perhaps this is a blog that will stay for a little while – perhaps even branch out in to things less dad-related! – but for now, I wanted to talk about grief bursts.

Yesterday I wasn’t in a great place. I could barely see the screen through a sheen of constant tears welling up in my eyes, which maybe explains why I couldn’t articulate my thoughts as well as I’d have liked.

And the reason was – I had a grief burst. Grief bursts are slippery little suckers that come out of nowhere. One minute I’ll be happily driving in my car, and suddenly I’ll find myself pulling over and sobbing, whilst Going Underground by The Jam plays on the radio – reminding me of my dad.

I’m never safe from them – and I doubt I ever will be. And I’m pretty sure I can’t be the only one who gets caught off-guard by them either. They’re not always a negative thing either.

Surely a grief burst must mean that you care, love and miss that person. It demonstrates your ability to connect with your emotions, to feel the grief. I’m not locking it away in some guarded corner of my mind, where perhaps it would have a big impact on my future wellbeing and happiness should it happen to escape.

No – as long as I am aware of the fact I might be hit by a grief burst; as long as I have people I can rely on to be there and to listen; as long as I am nice to myself, and understand that this is natural, then I think that these grief bursts aren’t such a bad thing.

This week will see the second anniversary of the date that my Dad died.

Two years. Twenty-four months. One hundred and four weeks. Seven hundred and thirty days. By all accounts, that’s a pretty long time. In two years, a lot can happen, and certainly a lot has happened for me. I graduated. I’m on my third job since April 16th, 2013. I’ve run a half marathon, met my partner, moved to London and I’m happy.

It’s strange, because after the influx of cards and flowers and best wishes and visits that April 16th 2013 brought, by the time a month had passed it was as though nothing had happened. Flowers were thrown away, cards neatly filed away in a box at the top of a cupboard, funeral catalogues disappeared and my dad became a topic left unspoken, except for, perhaps, within our kitchen over a cup of tea.

And this is something that surprised me – perhaps it shouldn’t have, but it did. My life was turned upside down, so how come everyone else seemed to move on?

I never realised how often people talk about their dads until mine wasn’t around any more. I wanted to talk about mine too – I had a zillion memories, even if they weren’t necessarily the same as somebody talking about how their dad was climbing Mount Kilimanjaro this week.

I’d want to tell them – ‘my dad climbed Mount Snowdon and was at the top when me and my friends were doing the Three Peaks!’ but that might have also included explaining that we were doing the challenge in order to raise money for the Motor Neurone Disease Association, because my dad had been diagnosed with the illness the year before. And that’s where whoever I was speaking to would search frantically for the right words to say, making me wish I hadn’t mentioned it. ‘Mount Kilimanjaro? Wow, that’s amazing!’ I’d say instead.

Talking about my dad almost became a taboo subject – more because I didn’t want to upset someone else than because I didn’t want to upset myself. It was often assumed that if I brought my dad up it was because I was upset, or wanted to have a deep and meaningful conversation. But what if it were only to mention the fact that he made a smashing chilli? A fond (and spicy!) memory for me was perceived as a cry for sympathy and attention by somebody else.

And it’s tough, because no-one really talks about grief. It’s not that friends don’t realise something’s up – it’s because we’re taught, from a young age, intentionally or otherwise, that it’s not okay to talk about death, because it’s upsetting. Does anyone stop to wonder how upsetting it can be to not talk about death?

I get angry with myself, often, when I feel upset about what happened. I berate myself – ‘it’s been a year! Move on, everyone else has!’ as though losing my dad to a hideous disease four years after diagnosis was only as traumatic as not being picked to sing in the choir at primary school.

And herein lies the reason I wanted to write something – anything – about my dad. I need to remind myself that it’s okay to grieve. Yes, even after two years have passed.

In fact, when I’m feeling rational I’d even go as far to say that maybe it’s even normal that I can go from feeling on top of the world one minute to being unable to breathe due to tears pouring down my face the next.

My hope is that as I start to write down some of these thoughts, seeing them on a computer screen will help me to start to understand them. Grief is something we will all experience – it’s inevitable. We will all lose someone we love, and we will all have to learn to carry on with life afterwards. So why can’t we talk about it?