Volunteering is a game changer

Whilst I was at Uni I decided I wanted to volunteer more with children. My day job had been working with children for around 6 years, and I felt like I wanted to ‘give back’ and volunteer instead of working all the time. The 1st January saw me running a quick Google search and firing off an application to volunteer at CCHF All About Kids, who provide amazing residential holidays to disadvantaged children in London.

Me volunteering at a CCHF residential camp

Ney mind it was over 5 hours away – I wanted in, and my first camp didn’t disappoint; it was a huge challenge with very little sleep, but I loved it. The kids were amazing, I made some great friends and before long I was volunteering regularly. A few years down the line I met Nick at a camp, and we embarked on a relationship that spent alternate weekends in Huddersfied and London.

Nick and I decided we wanted to go and do some more volunteering together, and we stumbled across Over the Wall, part of the Serious Fun network who provide life-changing camp experiences to children with serious illnesses and their families. We spent a week parading round in fancy dress, covered in face paint and singing at the top of our voices…and along the way we fell that little bit more in love.

Loving some blue glittery facepaint at Over the Wall

Soon enough I was living in London with Nick. I was working at the charity vInspired, supporting an incredible team of 25 18-25 year old volunteers who were campaigning on big issues in their communities. I also joined the Motor Neurone Disease South London Group, where I met the most amazing group of friends, and volunteered with them to improve the lives of people living with MND in South London.

At the London Marathon with the MND South London Group

I’ve been in London for nearly 2 years now, and My job is recruiting, training and managing incredible volunteers at the charity Whizz-Kidz, who work to transform the lives of young wheelchair users. 

Through volunteering I’ve achieved so much: I’ve raised thousands of pounds for both the MND Association and CCHF, along with friends I’ve met along the way; I’ve visited Buckingham Palace to celebrate CCHF’s 130th anniversary; I’ve met MP’s in Parliament and talked to them about the impact of Motor Neurone Disease; I’ve run half marathons and conquered the 3 Peaks Challenge; I’ve met friends for life who have made living in a brand new city infinitely better; I’ve met the love of my life.

At the top of Mount Snowdon with my Dad, who is the reason i volunteer with the MND Association

Nick and I probably would never have met if it hadn’t been for volunteering, and we’re now engaged and planning our wedding for next year. Volunteering has literally changed my life for the better, and I wouldn’t change my job, or my own volunteering, for the world.

  

Top left: at Parliament with Sadiq Khan, clockwise; in the garden at CCHF, young volunteers at Whizz-Kidz, me, Nick and my friend Anna at the Great North Run, me and Nick at an auction raising money for CCHF, my amazing colleagues at vInspired.
  

Why talking about dying matters

If you’ve ever made it to my blog page before, you’ll know that my dad died in 2013 after a diagnosis of Motor Neurone Disease in 2009.

I talk about dad all the time. I talk about motor neurone disease. I don’t shy away from the ‘d’ word – my dad died – despite the reaction it sometimes gets as people worry that they’ll say the wrong thing, or panic and not know what to say at all. It doesn’t bother me – we should all feel comfortable talking about death. It’s perhaps one of the only things that will affect, and happen to, every single one of us.

A few weeks ago, my Grandad Albert died in his sleep at the grand old age of almost-94. He wasn’t poorly. 

His was a very different kind of death to that of my dad’s, who was 49 when he died and following a long period of being very poorly. 

  
I’ve found that people react differently to me talking about Grandad dying to my dad dying – there’s almost a sigh of relief when they realise he was old, and died in his sleep. “What a great innings!” and “At least it was in his sleep” have been 2 things I have heard a lot these last few weeks, though it doesn’t necessarily make it any easier for a grieving family who have lost their dad/grandad. 

No matter what my reaction is to those lines, the fact that people feel comfortable enough to react is a breath of fresh air to April 2013.

The Dying Matters Coalition was set up to promote public awareness of dying, death and bereavement. Today, the 15th May, is the last day of the 7th annual Dying Matters Awareness Week. The Coalition’s mission is to help more people talk more openly about dying so that death and bereavement can be seen and accepted as a natural part of everybody’s life cycle.

  
Last night I was fortunate enough to volunteer at the Open MiNDs ball in London, hosted by Zoe Ball to raise money and awareness of Motor Neurone Disease. Zoe’s step dad died within a year of being diagnosed with MND, and it was so refreshing to see a well known celebrity talk about death – in a room full of people – openly, honestly and beautifully. Sarah Ezekial and David Setters, two people living with MND, also gave speeches and didn’t shy away from talking about the difficult subjects. 

  
Neither my dad nor my Grandad talked very much about their wishes for what would happen after they died. This means that our family had to make some big decisions, hoping and praying they were the right ones. It’s made me realise how important it is to talk about things such as what you’d like to happen at your funeral.

The reason I think it’s so important to talk about death is because when someone close to you dies, the last thing you want to do and to spend your energy on, is worrying about how other people will react when you tell them about your bereavement. The sooner we talk about dying and break the taboo of death, the better.

For more information on the Dying Matters Coalition please click here

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!

Missing Dad

It’s over 6 and a half years since my Mum and Dad told us that Dad had Motor Neurone Disease, and that he was going to die.

I remember sobbing to my Mum about an hour later, asking what would happen if Dad wasn’t there to walk me down the aisle. Mum said that Dad was all ready to send me, my brothers and sister out in to the word to get married and have babies straight away!

It wasn’t for another 4 years that I met Nick – almost exactly 6 months after Dad died.

Nick popped the question last month, and I think I’ve done pretty well to hold off my first ‘grief burst’ for just over three weeks. But tonight, as I was looking at potential wedding venues, it hit me – hard.

It’s so incredibly difficult to think that my future husband will never meet my Dad.

And it’s also really hard to plan a wedding that I spent the first 20 years of my life imagining my Dad being a major part of.

A quick Google search shows me I’m not on my own, and there are many creative ways of getting through the day. As my lovely friend said to me as I sobbed down the phone to her – “he’s always with you, and he will be especially on that day.”

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.