Mum and I were lucky enough to be invited to the Motor Neurone Disease Association’s parliamentary reception, which was held on Tuesday in Westminster.
We haven’t really been involved with our local associations, although this is something I intend to change. We didn’t expect to be invited, but thanks to all the coverage Mum’s wedding achieved, we were issued with an invitation.
It was a daunting prospect for Mum. I can only think of one other person she has met with MND. Part of her coping mechanism is not pondering on the disease too much. She focuses on everyday life, and things that make her happy. She doesn’t ignore the disease, because you can’t, but she puts it to the back of her mind and puts her best foot (in her case, her right one) forward and carries on.
So it was always going to be difficult. How can it not be? As she wrote in her notepad – ‘I’m only here because of this disease’.
I think most of the people who attended must have heard her at some point. She cried so hard that when she was in the disabled loo, I could hear her at the other side of the ladies.
She cried when she came into the room. She cried when she met people, and talked to them. She cried during the speeches, and the photographs. It’s impossible not to be moved by that.
I am so proud of her though, because those three hours were so distressing, and yet she faced them with her typically stoic attitude. I asked her a few times if it was too much, if she would like to leave. She shook her head every time. This is why she was in London. She wants to make a difference. She wants to fight in every way that she can, and raising awareness, doing some good, that’s all part of her fight.
We only had the opportunity to speak to one MP. We were sat at the Yorkshire table (‘Home in the heart of London!’ Mum called it), and we went around discussing the financial hardships and administrative nightmares that come with a diagnosis of MND. Mum was using her notebook, as her speech apps were too quiet for such a noisy room, and I read out what she wrote. She wrote about how difficult it is asking for help when you cannot speak.
As I read out her words to the MP, she seemed to crumple. Loud sobs came from her chest, and she hid her face behind tissues to mop up the tears. And you know what? I think those tears were more powerful than any words. She cannot speak for herself, but she can cry, and when she cries you hear her. You hear Angela. You hear her pain, and you hear her fears, and you hear the desperation to find a cure.
MPs hear tragic stories all the time, and people ask for help every day. Talking to MPs is important, and each MNDA representative there did an amazing job. My mum’s honest and raw show of emotions, though, is so hard to ignore. Those wails, those tears – that’s what this disease does. That’s the reality. We are all strong, and we all put on brave faces as we fight – but that suffering is the reality, for everyone with MND, and for everyone who loves them. It cannot be ignored.
The reception has given me a lot to think about. It’s given me some perspective, and lots of content for this little blog of mine. I will write a more thorough round up of the reception, what happened and what I think and hope we achieved. But I wanted to write this first. I wanted to share how proud I am of my mum, for facing something so daunting and painful, and coming out the other side.