Navigating the Road No One Chooses

I often reflect on life before MND. Not in a negative way, I think about moments in Rugby, I think about places I’ve been, mistakes I have made, opportunities I have taken, people I have met, friends I have made and friends I have drifted apart from.

Of course there is an element of nostalgia involved, a longing to go back. Life before MND feels less complicated but that isn’t true, I just have something so extremely difficult now to compare it with.

Life before MND was complicated because life is just that. We all carry difficulties with us, and there isn’t a scale to suggest everyday life issues are less important than those suffering from life limiting illness or disability.

We only know what we know. I now see both sides of the coin, and I look back at things I believed were stressful or difficult and smile. If I could click my fingers and recover tomorrow, then I wouldn’t carry 80% of what I was carrying before MND.

I know that is easy to say now. What would I really tell myself if I could have a conversation with that person about what lay ahead?

Let’s get the negative out the way first, if I am not real about this then I know I would call bullshit on myself for painting the worst diagnosis with rainbows.

Brace yourself and get comfortable with loss.

There will be plenty of losses. Loss of movement, of speech, of independence. Some friends and family will disappear quietly until there isn’t anything to be said. Frustration will drive you mad at times, craving the independence to complete simple tasks.

Fear will stare you down, waiting for you to blink first. The strain of not backing down will test your mental health at times of vulnerability. Eventually though, you will look, smile and carry on.

The road ahead is a mess. You can’t quite see the end but the skies above don’t look welcoming. You can see other people travelling on roads that look a lot more appealing but you can’t get to them so don’t bother looking too much.

You have to navigate giant potholes, little cracks that will trip you up, a few brick walls that take time and energy to get over. You will have some quieter stretches where things aren’t so bad. You will learn to slow down and enjoy those days.

You will meet people who are walking the same road. Some will walk it with you before going ahead and some will watch you go into the distance. Help those people, accept their help and have a laugh along the way.

Let’s change our focus, because I haven’t talked about the positive things that come with this journey.

Life is very much still worth living. You will adapt, with help.

The people around you will become more important than ever. Some will drift away, unsure how to handle the changes going on, but the ones who stay? They will step up to support you in ways you couldn’t have imagined.

New people will come in to show their support and offer their help.

Time will become fragile. The concept of planning ahead will not exist. This isn’t a bad thing because you will learn to slow yourself down and focus on today. You will enjoy the hour of someone dropping in for a chat. Watching sport live. Going to the park with the kids. Having a cold pint at the pub.

You will wake up and appreciate the chaos of the kids getting ready for school or the kids laughing in the room next door. You will appreciate the days where the sun is out and the doors are wide open.  

Time is best measured by who you spend it with.

MND won’t take your purpose, it will change it. You will focus on your family, your friends and trying to help other families affected by MND with the help of lots of people. Clear and simple.

That’s enough to take in for now. Keep moving forward.