Back to Listing
How friendship and illness began a powerful global movement
08 October 2014
It was a beautiful Sunday morning in February 2012. I was in hospital for a few hours having my routine monthly treatment for MS when a woman sat down in front of me for her treatment. She had a funny walk so I thought she might have MS like me.She smiled at me and I asked her in a cheeky way: “ Do you have what I have?” She replied, “I have Motor Neurones”. What do you have? Thirty seconds later I was sitting next to her as she showed me photos on her phone of her two beautiful children and I was showing her photos of my son.
A special friendship was formed instantly and my life was enriched forever. Over the next hour we worked out that I have known Emma’s sister for 20 years and that we have a whole community of people in common. Emma lives around the corner from me, we have kids of similar ages, are in our late 30’s and we have similar personalities.There was a deeper connection however: where we met and how we met.
Having a chronic illness is not easy. For me, it’s the psychological impact of dealing with what could happen to me, the unknown. For Em it’s the unimaginable knowing and coming to acceptance that her body is slowing dying, her muscles are collapsing and there is nothing that can stop it.
When I met Em her legs were wobbly (we agreed that that was no big deal, so are mine) and her speech was deteriorating but she could still walk and she could still talk so things were ok. Over the last 16 months walking has become a lot harder and her ability to speak has gone. I remember coming home from hospital the day I met Emma to Matt and my mother in law, in disbelief and beside myself. I was in emotional agony having just met the most spectacular person who I knew would die. I felt angry, I felt robbed. Who was I to feel this way, I had just met her? I’m not her mother who gave birth to her, her husband who committed his life to her, her sister who adores her, her children who will miss their only mother. I was just a person, a random – what right do I have to be this upset?
My wise mother-in-law said something to me at the time that really helped. She said: “Mel, there is a time to ‘do’ and there is a time to ‘be’. Emma needs you to just ‘be’ right now, be with her and be her friend – accept her. You don’t need to ‘do’ anything.” This initially made me feel powerless and useless, but over the next 6-9 months I realised that just being with Emma and staying in contact with her and not being afraid of my reactions when I’m with her is enough. I tell her I love her all the time and as she becomes less afraid and more accepting of what is going to happen I have learn to embrace the journey with her and live through it as with unconditional love.
It took me months to learn to deal with what is happening to Em but I have and am both in a position to and reached the time in Emma’s life to act, to do something to help her and her family. That is why I am crowdfunding to make a short film for Emma and for her children called How I Met Your Mother and to raise money for a trust for her children so she will have birthday and Christmas presents from their mother for the next 20 years.
Emma’s communication is still fabulous, through her laughter, her facial expressions, her magnificent smile and her beautiful hugs. She fits more into her day than most able bodied mothers I know, swims every week, is out and about with her kids all the time and gives her carers’ a run for their money every day. That’s the very special thing about Em, she makes it ok that she has MND. It’s bad bloody luck but it’s life and it’s ok. She gets angry, she gets sad and she gets scared but she has many joys in her days with her children, many moments of pure happiness, beauty and peace. You can see it in her eyes and you can feel it through her hugs.
What Emma has given me and the people she loves is beyond words. My mum said it well this week: “What an incredible gift Emma is to you. What a deep and powerful privilege to know her. Mel, you will never be given a gift like this again and you will never forget her. She will make you live your life with more passion and joy than ever before. You are a very fortunate woman.” Mum is right, I feel immensely privileged and honoured to be Emma’s friend and to help her build a lasting memory of love and devotion for her beautiful children. I have never known anyone like her and I love her with all my heart.
Emma has Motor Neurone Disease. A disease that means the muscles in her body are slowing shutting down.
30 of Emma’s friends participated in a private film for Emma’s children called ” How I Met Your Mother”. The aim is for this film to act as a long-standing tribute to the extraordinary person Emma is and the immense love she will always have for her children, Luca and Ruby. Any funds not used on the film will be pwere put into a trust for Emma’s children so that they will receive birthday and Christmas presents from Emma for the next 10 years. (Campaign ended in October 2013)
My friendship with Emma has also inspired the creation of a global advocacy and awareness storytelling platform for invisible illness called My Invisible Life. You can find out more here
Motor Neurone Disease (MND) is the name given to a group of similar illnesses. These illnesses all cause damage to the nerves called motor neurones. These are the nerves that carry the messages which control our muscles. A common early sign of MND is increasing muscle weakness. This can show up in many different ways such as not being able to do something you could easily do before. Depending on which muscles are affected this early weakness could perhaps cause you trouble walking or lifting your arms. In about one case in four, it can start in the muscles we use to speak, chew and swallow; this can cause slurred speech and eating difficulties for some people.
The most common form of MND results in both upper and lower motor neurone involvement. This form of the disease is characterised by weakness and wasting in the limbs. Someone may notice they are tripping when walking or dropping things. Average life expectancy is from two to five years from onset of symptoms. Visit the MND Australia website by clicking here.