#ShortenedStories

Today is MND Global Awareness Day. I remember 2013’s MND Awareness Day, just after Dad had died. Nobody knew very much about MND; the ice bucket challenge was yet to come, as was The Theory of Everything. We’ve come so far with raising awareness, but today will help us to raise the profile of MND even more.

This year’s Motor Neurone Disease (MND) Awareness campaign is called ‘Shortened Stories’. It highlights how many people’s life stories are cut short by MND; 50% of people die within 2 years of being diagnosed.

On the 1st June my fellow committee member from the MND South London group suggested that the group could use MND Awareness month to share the ‘Shortened Stories’ of our families and friends who had inspired us to volunteer for the Motor Neurone Disease.

I thought this was a fantastic idea, but it also filled me with dread, as it would mean I would have to write about my Dad’s story, which was cut short in April 2013. He was 49.

Let me set the scene for you: my Dad really was the life and soul of any party. He was known for it, among family, among his friends, among my friends. When I was 17 I secretly invited about 25 friends over for a party and, rather than kick them all out, he shrugged his shoulders, put some music on and got cooking a chilli for everyone; this is the man he was.

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He was a huge sportsman – watching and playing. We’d spend every other Saturday watching Huddersfield Town play; he coached the Scratch Team at the golf club to victory; he played football, golf and cricket, and taught me, my brothers and my sister to do the same – we’d often have a kick about or a game of cricket on the back lane.

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When I found out he was going to die, I was surprised not to hear the noise of my heart breaking.

He lost his voice within months; I used to have dreams where he would talk to me. I’d wake up in tears when I realised it was just a dream. He was dead within 4 years, and I know we were lucky to have him for that long.

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I could write about what his life would have been like for pages and pages, for he was always doing something with us, or with his friends: instead I’ll keep it very brief, and selfishly, only on the shortened story of Man and Eldest Daughter:

Since Dad died, I have graduated. I’ve transitioned in to the life of ‘proper work’. There was the first Christmas without him going downstairs first, and saying ‘he’s been!’ There have been two more Christmas’ since then. There have been family holidays without the chief planner. I moved to London.  I met the love of my life, and he asked me to marry him.

There will be a Huddersfield Town season ticket, without him sat next to me. There will be a ‘first home’ where he isn’t there to help do the DIY. There will be a wedding without a Father of the Bride speech. There will be his first grandchildren, who will never know him. There will be countless occasions where he will be missed so sorely that it often feels like my heart is breaking all over again.

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#ShortenedStories

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!

4 Days in Budapest…Day 4

I woke up on our final day in Budapest still feeling completely and utterly overwhelmed by the previous evening! Our first stop of the day was the Hungarian Parliament, which was the backdrop for the proposal, and therefore even more of a must see before we went home! We had a coffee and a pastry in its cafe before having a tour. Unfortunately there were private events happening which meant that we weren’t able to see the whole building, but we still had a great time looking around the bits that were not interrupted – it was a really grand and ornate building!



After our tour we walked up the river to St Margarets Islandc which is exactly what it sounds like – an island in the middle of the Danube, accessed via a bridge.

We hired a little buggy that we used to drive around the island – so much fun! A lot of the island was closed due to it being winter – apparently there is a brilliant musical fountain which we didn’t see, as well as a water park/thermal baths. We still had a great time flying around the island and seeing the various buildings and statues. We even managed to find our first geocache as an engaged couple!



By now we were in to our last few hours in Budapest, and so we hopped on the Number 2 tram, which we had heard was a really scenic route. It was a beautiful journey, but on reflection we should have done this on day 1 when everything was new, rather than at the end when we had already see everything.

We headed to New York Kávéház és Étterem, on Erzsébet krt, which was very beautiful and grand. I had a chilli hot chocolate which was incredible!

All too soon there wasn’t much left to do but pick up snacks to take back to the office, catch a taxi to the airport, share our happy news on Facebook and fly back to London after the most wonderful of holidays.


 

4 days in Budapest…Day 3, and a surprise engagement!

On Day 3 in Budapest we left the ‘Pest’ side of the river Danube, which is where we had spent most of our time so far (with the exception of Gellért Hill). We crossed the river via the Chain Bridge, and went up on the funicular which we had been told was fantastic – we were actually a little disappointed and regretted not walking up – the views were nice though!


Buda is definitely known more for it’s culture and history than its variety of bars and restaurants, but nevertheless we found ‘Ruszwurm’, one of the oldest pastry shops in Budapest, opened back in 1827! We enjoyed coffee and strudel, before spending the morning wandering around Buda Castle. The building and inside was beautiful, but we found that we already knew most of the information from our visit to the House of Terror yesterday, and so we didn’t love it as much as others have told us they did.



Our next stop was ‘Sziklakórház’ – Hospital in the Rock. The Hospital is built in to the caverns underneath Buda Castle, and was initially built in preparation for the Second World War. The Hospital, which was used most during the siege of Budapest in 1944-45, is now a museum with lots of wax-work figures which recreate what the hospital would have looked like when it was in use.

Our next stop was St Matthias Church, a really stunning church by the Fishermans Bastion. You can get a ticket and climb to the top, but we just had a look around inside, had a dusky picture taken at one end of the Fisherman’s Bastion before heading to a shop to grab a couple of beers each.




We walked along the Fisherman’s Bastion, and found a little secluded spot to enjoy the views of Budapest lit up at night, and to enjoy our beers. Halfway through the first beer, Nick took my hands, stood us both up and told me how lucky he had felt to spend the last two amazing years with me. Then he got down on one knee, and asked me to marry him! I was completely overwhelmed as I wasn’t at all expecting it, and I cried/laughed my way to a yes!




We walked back down the hill towards the Chain Bridge, and I rang my mum – Nick had asked her permission a month beforehand, but as I told her she still burst in to tears. She said she was in the car with the radio on, and as I called ‘Can’t help falling in love with you’ came on. That song was one of my mum and dad’s songs when they were going out, and it is also one of the songs that reminds me so much of Dad as we used to sing it at the top of our voices at football matches – it felt very special, and almost like a blessing from him.

As if he hadn’t already surprised me enough, Nick took me to Costes restaurant on Ráday utca, which was the first restaurant in Budapest to receive a Michelin Star. We had the most beautiful meal, and I will never forget the most amazing evening!





4 days in Budapest…Day 2

After a little lie in this morning we headed for breakfast on Andrássy ut, the Hungarian answer to Paris’ Champs-Élysées! After pancakes and bacon we were ready to face the world and wakes a little further up the road to ‘Terro Háza Múzeum’. The ‘House of Terror’ commemorates the victims of both the Communist and Nazi regimes in Hungary. The building was the Nazi Headquarters in 1940, and its basement was used as a prison.

Hundreds, if not thousands, of people were tortured in the building. As well as being a sobering reminder of the past, we found that the exhibitions inside served as the most detailed and fascinating history lesson, taking us on a journey through Hungary’s turbulent past – well worth a visit.

We left the House of Terror and walked all the way down Andrássy ut, which culminates in ‘Hósök Tere’, or Heroes’ Square in English. It’s a stunning square with art galleries at either side, and was built at the end of the 19th century to commemorate the 1000th anniversary of the foundation of the Hungarian State back in 895.


After an overpriced langos which left much to be desired after yesterday’s experience, Nick and I ventured in to the ‘Széchenyi Thermal Bahs’ which are widely referred to as the best of the thermal baths in Budapest. They were built back in 1913 and we were not disappointed. There are outdoor pools complete with water jet massagers, water rapids and chess boards surrounded by elderly Hungarian men, and around 15 indoor pools of varying sizes, temperatures and grandeur, not to mention the saunas and steam rooms! It’s well worth the extra money to get a cubicle rather than using the lockers.

We arrived early afternoon and explored the lovely warm outdoor pools first before heading inside. When we came back outside it had gone dark, and the baths were transformed. They looked absolutely stunning, with lights and the steam rising above the pools. I simply cannot recommend this place enough – and if I ever go again I’ll make sure to spend a little extra money on a massage too! On leaving we felt a beer was well overdue, and thankfully there was a small bar outside the baths that provided us with the goods, before catching the metro back in to the centre of town.



We spent the evening in a small restaurant close to the river, called ‘Százéves Etterem’. It was very old fashioned inside, with a four piece band playing music. The food seemed really traditional and tasted amazing – I had my first taste of Hungarian Goulash, followed by Paprika Chicken. The prices were a little higher than we were used to seeing, which made us wonder if we had stumbled in to a tourist trap. However the food was brilliant and there was a great atmosphere, so I’d definitely recommend it to anyone not on a strict budget!

4 days in Budapest..Day 1

Our second stop back in November was to Budapest, in Hungary. Our flights were incredibly cheap – about £30 return – and to complete the budget city break we opted for an Airbnb rather than a fancy hotel. At £27 per night – including booking fee and cleaning! – it was a complete steal, located really centrally, within a couple of minutes of the market square, St Stephen’s Basillica and Budapest’s famous Chain Bridge.

We had 4 days in Budapest after arriving late on Sunday night, and so our first stop was for coffee, and a good look at a map of the city and our guide books. Nick is a serial planner, so he was in his element! I was more interested in the fact that our coffee was in Café Gerbeaud, one of the most famous cafes in Budapest, and a beautiful building!



We decided that we would spend Day 1 getting our bearings, by walking down the river to the food market, before hiking up Gellért Hill to get a view of the whole city. We had ‘langos’ at the food market – the most delicious garlicky bread I have ever had the pleasure of eating, and for just 60p too! The shop is on the first floor of the market, and is a must visit. We washed it down with a beer in the market, with a lovely view of the Liberty Bridge, and the hill we were about to climb!


On our way up Gellért Hill we stopped off for a look at ‘Sziklatemplom’ – the cave church. This church was founded in 1926 although it looks and feels much older. The altar was initially at the cave entrance with the congregation sitting outside. It was used as a hospital in world war 2, before the entrance was completely sealed with a concrete  wall during the communist regime. It was a fascinating place to visit.

The walk up Gellért Hill wasn’t too horrendous, but we were huffing and puffing by the time we reached the top! We were rewarded with spectacular views of Budapest, as well as the knowledge that you can also get to the top via bus…!



Our evening plan was to visit St Stephen’s Basilica and go out for dinner. This plan was discarded once we realised there was a concert happening in the basilica, so we settled for a picture outside before going for a mulled wine in the Christmas Market stalls. We wandered across town to Ráday utca, which is well known as the main restaurant area in Budapest. En route we stumbled across ‘Monyó Café’ where Nick sang the praises of the real ale, before settling in ‘Púder Bárszínház’ on Ráday utca. The food was delicious,/!; the wine was extremely cheap! Our last stop of the day was ‘Szimpla Kert’, the most famous of Budapests ruin bars, on Kazincy Street. I think it’s safe to say this was one of the most bizarre places to enjoy a beer!



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.