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 Neurons”. 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, Luca and Ruby, and I was showing her photos of Harry, 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 Sasha 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."
That 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.