To be diagnosed with MND, you must have really, really bad luck. That’s all we really know so far. Nobody can tell us what causes it. It might be genetic, it may be environmental. Research is ongoing.
So all we know is, if you’re one of the 5000 people in the UK with MND, you are unlucky.
Hopelessness seems almost synonymous with MND. By talking to people, engaging and loving, I can see some glimmer of hope.
Here’s the weird thing, though… in a really strange way, I feel lucky. Here me out:
I hate everything about MND. It is cruel and unfair. It impacts every aspect of a person’s life, changes their world and robs them and their loved ones of their future. It is despicable, and we have to do everything we can to stop it.
I know that when we do finally, eventually, stop MND, it will come too late for my beloved mother. That’s really hard.
But I do feel thankful, in a weird way. I’m sure many of you will read my blogs and think this journey is all despair, but that’s probably because the words flow easier when I’m emotional. It isn’t all devastation.
I am grateful for the twenty two years I have already had with my mother. I think about children who have to go through this with their parents, and my heart breaks. It is hard enough for me to deal with as an adult. Those children who find the strength to carry on, to live life to the fullest, and keep their parents always in their hearts – they are little heroes, all of them.
I have been so lucky to have had twenty two (and hopefully more!) years with my mum. They haven’t always been easy. As a family, we have been through some horrendous things, which I won’t go into detail here. It seems so unfair that after everything she has been through, this has to happen – just as her life was starting to be put back on track. Just when she had something to look forward to, it is snatched. It’s cruel. But we went through all those things together. They made me who I am today, a young woman who loves her mother dearly. And we will get through this too.
It’s also made me appreciate what I have. It’s almost a cliché that life-changing news has this effect on someone, but it’s true. I took Mum for granted. Before the diagnosis, I hadn’t seen her for four months, and I regret that. Now I know that we don’t have long left, every second is sacred, and I am blessed to have her as part of my life. I can’t wait to see her on Friday.
I also appreciate the other people in my life so much more. MND is so terrible that is has made me re-evaluate my life and my relationships. I have made the effort to see people more often. I met a childhood friend who I haven’t seen for six years – we’ve both been living in London for ten months, but there was always ‘next week’ to get in touch. Well, what if ‘next week’ never comes? Life can be brief, why hide away?
As for the inevitable end, it is much too soon for our liking, and I hate knowing it is on the horizon. I love her so much. I never expected to live my life without her, and I don’t know how I will. But I can take some solitude in knowing that it is painless. Although she will deteriorate, I won’t watch her writhe in agony, and in her eyes I will always see my mum. She’ll still be there, inside her head, and I won’t let her feel lonely. I won’t let her feel trapped.
Most people with MND will die in their sleep. They won’t know it’s going to happen in that moment. I hope that for my mum. It will break my heart and tear my soul when she does go, and I don’t know how I am going to cope or what I will do. But as a death for my mother, I know there are worse ways to go. That is a small comfort in the worst of circumstances.