Football, work, campaigns and remembering

Growing up much of my time with my Dad was spent watching Huddersfield Town play football. Through the highs (not that there were many!) and the all too often lows, I watched Town with my Dad, and then subsequently also my brothers and sister, for as long as I can remember, spending every other Saturday down at the town ground, and around the country too.

I now find it really hard to watch them, not that it’s ever been easy, and this really hit home last weekend as they played rivals Leeds United. I watched the game in a small Lincolnshire pub with Nick, but felt so alone. I’ve not followed Town as much since Dad died, as watching brings back such strong, happy memories. I ended up sat in the pub crying in to my pint, and not only due to Huddersfield being on the bad end of a 3-0 score line. 

Watching Huddersfield was the one thing I did consistently with my Dad for around 20 years, and it was so full of little rituals that it’s still difficult, 2 and a half years later, to accept that those days are over.  

The other strange realisation I have had this last month is how little I know about how Dad was at work. I know that he was known as Nobby, that he was pretty popular amongst staff, and that he could be relied upon to suggest Nandos for a team lunch and to be the first, and last, at the bar.

But as I was sat in a meeting recently, with a man around my Dad’s age, I realised that I will never know what my Dad was like at work, in meetings and as a manager. I realise that’s a really bizarre thing to feel sad about; does anyone really know, or care, what their parents are like at the office?! 

I guess that maybe it’s one of those things that you didn’t realise you wanted to know, until the time for finding it out has passed. Living in London now and knowing how much time Dad spent here on business makes me wish so much that we could meet up for a pint and a Nandos after work.  

 

Of course, the reason he isn’t is the main reason for this blog: Motor Neurone Disease. And so here’s the part where I update you on what’s been going on with the South London group. 

At the end of October we had a fab comedy night organised by the delectable Daisy Cosker, taking the total she has raised for the Association in 2015 to over £10k – well done Daisy! 

  

On the night we had lots of campaign leaflets around, particularly one urging people to email their MP about benefit changes that could negatively impact on people with MND – people who already have big challenges, and don’t need their benefits to make their lives even harder. 

On the 1st December there will be a meeting taking place in Parliament about #MND and the campaigns team are asking as many people as possible to send their MP an email inviting them to the meeting in order to raise awareness of MND.

You can email your MP in less than 2 minutes by going to this link – http://bit.ly/1MKkzFx. Thank you!

Next month we will be taking people with MND in South London for a visit to Parliament, which I’ll look forward to sharing with you in December.

Finally, I’d like to give a special mention to the Rivers family. Eric Rivers recently died following his battle with MND. He gave a speech at the MND parliamentary reception, which really reminded me of my Dad, and left me feeling incredibly inspired. Thank you Eric for being such a big inspiration to the MND community, and to his lovely wife Davina and his daughters – you’ve been in my thoughts and prayers. 

  

A busy month

I promised myself that I would try to blog every month – and since I have just finished the Royal Parks half marathon, that means it must be about a month since I last blogged about the Great North Run!

It’s been a pretty good month for involvement with the MND Association. I attended a focus group around creating volunteer opportunities for younger people at the Association. There were some really interesting conversations, and I’m looking forward to seeing how these develop over the coming months. The average age of a volunteer at the MNDA is 53 (if my memory serves correctly!) – so this is a really exciting piece of work to be involved in. Plus I got to hang out with some lovely volunteers!  

A few days after running an auction for a different charity – CCHF All About Kids – I was back in the MND fold for an annual quiz in Tooting, organised by the lovely FACE. Sadiq Khan MP opened the show and presented the MND South London group with a cheque for £1000 and lots of money was raised throughout the evening. Despite coming second to last, we had a fab time!   

Next up was a group meeting, where the South London group reflected on a really amazing year so far, and discussed exciting upcoming events. We (well, mainly Daisy!) are organising a Comedy Night at Tattershall Castle on the 29th October (tickets over on Eventbrite!) which should be a great night. We also had a visit from Ben Sharpe who is a corporate fundraiser at the Association – cue an interesting chat about the potential for getting corporate volunteers involved in our work. 

Then, on Sunday, it was the Royal Parks half marathon – the culmination lots of fundraising and not a lot of training from Nick and I. The support on the day was outstanding, we saw lots of MND runners on the route, both achieved PB’s (with zero arguments, hurrah!) and most importantly raised well over our target, with almost £1200 in the pot for the MNDA.  
This has been a pretty long blog, and on the surface sounds like a really positive month with lots of volunteering for the MND Association. Yet I can’t let this blog finish without a mention of my lovely Dad.

Honestly, it hasn’t all been plain sailing. The 4th October would have been my Dad’s 52nd birthday, and I was reminded of the reason for my involvement in all of the above activities. It wasn’t an anniversary, and I did feel a bit cross with myself for getting upset at first, but it was a really hard couple of days. 

It made me think of all the things I’ll never have the chance to do again; buy my dad a birthday Nandos and a pint or 6, get stressed about what to buy for a present, or laugh/join in with his drunken dancing at a birthday party. And for those of you who have lost someone you’ll know that this can be a slippery slope – within seconds I was thinking about my own life celebrations – birthdays, weddings, babies…

But I reasoned with myself, and reminded myself that this is natural. I resisted the urge to tell myself to ‘snap out of it’, and I curled up in bed and didn’t get out for almost 24 hours. 

So, Happy Birthday Dad. And here’s to lots more volunteering continuing the journey towards a world free from MND.

  

Taking back control through fundraising

When Dad was diagnosed with MND, I was 20 years old. I was about to leave home for University and, knowing that I wasn’t going to be around to help my family out, I felt utterly out of control, and scared.

When you lose control, you try anything to seize back a little bit of control. For me, that came in the form of thinking up fundraising challenges. It felt like fundraising was the only way that I could make a difference to the shitty deck of cards that we had been dealt with, and it wasn’t long before I grabbed a group of my friends and tackled the Three Peaks Challenge.

 It was so hard, but we met my Dad and my family at the top of Snowdon (when we were so close to finishing!) and that will always be one of my absolute favourite memories.

When Dad died, I was 24 years old, and as I turned 25 a friend bought me a place in the Sheffield half marathon. Every training run made me think of my Dad, and forced me to keep running even when it was tough. Almost exactly 12 months after his death I ran the Sheffield half marathon, with my Dad’s brother, and it was just as emotional as I expected it to be.

Having not run since that half marathon, I must have been experiencing a lack of memory as I entered Nick and I in to not only the Great North Run, but the Royal Parks half marathon too!

Last weekend Nick and I completed the Great North Run, and despite having done fundraising challenges before, this one felt different. I think it might have been because I have more involvement with the MNDA now – I felt a real pressure to fundraise successfully and do the run in as good a time as possible.

  
Newcastle’s half marathon was hard work – Nick and I fell out and made up several times during the 13.1 miles! – and even the thought of my Dad didn’t motivate me at times. I think there’s an unwritten rule that suggests love and heartbreak can give you the inner strength to do anything, but I certainly didn’t feel that way around the 10 mile mark on Sunday!

We spotted lots of people running for MND, but it wasn’t until the last mile that I spotted any cheerers – I then saw 2 men with a banner around the 12 mile mark – if by any chance you happen to be reading this, you have no idea how much seeing you guys spurred me on!

Just as we approached the finish line we spotted a lady running for MND, and the 3 of us crossed the finish line hand in hand. We made it to the MND tent in the charity village, and we felt like superheroes – thank you so much for all of your support.

 Each event I attend to do with the MND Association makes me feel prouder and prouder to be a volunteer, both as a fundraiser and with the South London group. In less than 4 weeks Nick will do our second half marathon – The Royal Parks – and no doubt the MND family will see me through those 13.1 miles too. 

Getting things done

Around 3 months ago now I started the process of becoming a Campaigns Contact with the Motor Neurone Disease Association, a charity very close to my heart as they supported me and my family when my Dad was diagnosed with MND over six years ago.
I was accepted as a Campaigns Contact, and went to my first event – the incredible celebration at Parliament after handing in the MND Charter at Downing Street, with a brilliant 33,600 signatures. It was a hugely inspirational event, and I had a wonderful time chatting with local politicians, representatives from MNDA branches and groups all over the country, and hearing some really touching speeches.

  
I came away feeling so fired up and ready to make a difference, but just a few days later I started a new job, and for a month residential camps with over 60 teenagers took over.

Then, on the 25th July, I went to a training and networking weekend in Birmingham with other Campaign Contacts from around the country. Again, I had the most fantastic time hearing about the many successes of the other Campaigns Contacts, and felt ever so slightly intimidated by all their achievements. Again, I left feeling ready to take on the world…but then I started my second job in as many months, and volunteering took a back seat.

  
It’s so easy to feel enthused and motivated in the company of inspirational people like those in what I’m starting to refer to as ‘the MND family’. I come away from meetings feeling like I can do anything, yet that fire seems to dim a little when I sit down on my own and try to make a plan of action.

Last night I met up with some members of MND South London, the group that I volunteer with, and we spent over an hour planning a presentation for the AGM in Birmingham next month. Unfortunately I’ll be halfway up to Newcastle in preparation for the Great North Run on Sunday, but by being part of the preparations I really reflected on how much this small group of people do for the Association around their busy schedules.

Yet again I’m feeling incredibly motivated, and this time I don’t want to let that feeling disappear. Yes, it’s great to be part of such an inspiring and supportive community, but I can’t rely on speaking to these people daily to keep me motivated.

I need to remember why I started this journey – to make a difference to those affected by MND. To continue to raise awareness of a horrid illness. To make the best out of the very worst situation. I am going to do my very best over the coming weeks and months to be a Campaigns Contact to be proud of – I want to do whatever I can to make a difference, and this time I won’t let my ‘lack of time’ get the better of me.

It is only right that I end this blog with a huge shout out to ‘the MND Family’, as without them I wouldn’t even believe in my ability to make a difference, let alone have the confidence to actually do something about it.

 

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?