Earlier this week, I met up with the lovely Emma Beasley. We took time out from the craziness of pre Christmas week and caught up for a wine and a long chat. From someone looking across at us, you would think it was two friends, who had known each other for years, laughing, smiling and chatting. Little did they know that I had only met this wonderful human being just six months ago.
I attended a get together with the MND and Me team back in July. A casual event, but one I wasn’t sure whether I would have anything to contribute to. A group of people all travelling to New York to run the New York Marathon, but I could barely run 5kms.
Not long after I arrived, this bubbly person whose smile was absolutely infectious, came up to me and said “Hi my name is Emma”. And from that moment, we were lost in conversation.
This mother of two and wife to Matt, knows all too well the real life struggles faced by people living with Motor Neurone Disease (MND). Her father was diagnosed with the disease in July 2014 after experiencing problems with his foot for about 12 months.
Her father is not someone to complain about anything, but when he told her his entire body was becoming weaker and weaker, she knew that it was MND. Having previously worked as a speech pathologist, she was acutely aware of the symptoms. Six weeks later he was diagnosed with MND.
Emma explains, “The cruellest part of the disease for Dad is that he has always been a worker with extremely good physical strength. So to lose something that is so much a part of his character is extremely confronting, particularly when you know there is no cure. Each night Dad goes to bed the strongest he will ever be. He will wake up in the morning and feel normal, until he has to move and is then reminded that the beast of MND is still there.”
Emma mentions that her father has always been a very optimistic person and when he was diagnosed he said he was thankful that it was him and none of the girls or grand children. His resilience, strength and courage is something that really inspires Emma. Although there has been an adjustment phase and a time of grief, he has managed to really push ahead and even become heavily involved in the research, which has been a great coping mechanism for the whole family.
With Emma’s father having a slower progressing form of MND he is still reasonably mobile. But they are starting to see changes to his breathing and vocal quality, and it is evident that even picking up utensils is getting harder and harder for him.
Like most people who have a loved one with this disease, Emma struggles with the fact that there will come a time where she wont be able to pick up the phone and chat to her father. “ His breathing is starting to become affected and he is getting some facial weakness which will ultimately take his speech away. I will miss his warm gentle voice. Whilst we know his fate, we try not to think too much into the future, as it is emotionally very painful to go there. Although we are passionate about raising awareness and finding a cure, we are realistic and know that it’s a long road ahead. I just keep thinking we’re so lucky that we have time to plan and spend time together”.
So when Emma got a call from her cousin asking if she wanted to run the New York Marathon and that she had less than 24 hours until the closing deadline, she didn’t really have a lot of time to think about it.
In the end she figured it was a really good opportunity to raise awareness and funds and she also knew some of the people in the MND group and was quite excited about doing this with them.
So she signed up for it having not run a marathon before, or being a distance runner. Her new years resolution was to run the Gold Coast Half Marathon, so she figured if she could do that mid year, it would be a good stepping stone to the New York Marathon in November.
As far as her training went, she giggles and admits that she definitely tried to “wing it”. She didn’t follow a strict program and also had to juggle work, kids and family commitments also. She was very grateful for having a few serious runners in the group because she was able to draw advice from these people, which really helped.
The night before the marathon was spent desperately trying to get a sugar fix and putting together the photo she had of her dad, family and grandkids which was signed by everyone that had sponsored or supported her. This was a very important piece of inspiration on the day of the marathon.
Emma was issued with a start time of 11am, however the group she had been training with had a start time of 10:40am. It was then she started to panic and become anxious at the thought of having to run the marathon on her own.
The team came up with a strategy to “sneak” her through the 10.40 slot time, which worked. Having people to run the marathon with made her feel so much better. The thought of running it on her own was simply terrifying and caused her a lot of anxiety.
When I asked Emma if there was anything specific that she remembers from the marathon or anything that stood out, she said “The music. I loved the music and so many times I would shout “oh my god I love this song”. I also remember people calling my name, which was an amazing feeling. Oh and the random motivational posters. The one I distinctively remember was ‘Run like you have stolen something’. The New Yorkers were just so amazing and so supportive”.
But as you would expect, it wasn’t all amazing wow moments and fun music. There were definitely times where things got tough. But during these times, Emma just kept reminding herself that if her dad can still manage to put one foot in front of the other, then so could she. This really pushed her through right to the end.
She finished after an incredible 4 hours and 40 minutes and was determined to watch her husband cross the finish line. “When I crossed the line I was exhausted, but certainly felt a huge sense of achievement. Watching my husband also cross the line was a great way to finish the marathon.
“Having such an amazing group in New York all running the marathon for the same cause was a great way to experience it. I have been so inspired by every single person that was part of that group. It was like a little family. I definitely felt very spoilt having these people to train with.”
I think to some degree, Emma has no idea how truly inspirational she has been to many other people. She is very quick to compliment others on their achievements and bravery but she too deserves a pat on the back. Her commitment to the cause and the marathon while juggling work, kids, a never ending stream of sickness around the house during the winter months and of course her commitment to her father. I am pleased to have met her and had the chance to help share her story.
We spoke about the lack of funding from the Government for MND research. In 2015, MND research received $2.3 million of the $420 million invested in medical research, which equates to roughly 0.5%. However, in 2016 it will receive $2.5 million of the $760 million invested, roughly 0.3%.
So it’s no wonder that events like the New York Marathon where $250,000 was raised, play such a vital role in raising much needed funds for this charity.
So if you or your business would be interested in helping out a great cause and getting involved in future events, please get in contact with the MND and Me Foundation.
*Author: Hayley Poslen