Living life with MS to the beat of my own drum

29 November 2023

Leoni drumming

Pipe band drummer, Leoni, felt heartbreak when she had to stop her passion due to her MS worsening. She outlines how love, family time and building connections help her deal with her lifestyle change.

You blink and the time’s gone.

I remember the weight of the drum on my shoulders and back, the strength my hands and arms had. I remember the brain strength I needed to memorise every tune, every beat.

We go through each day as if it’s just another day. But one day, that time might come. The day when the thing you’re passionate about, the thing you’ve spent years training for, the thing you wake up excited about, is something you’re no longer able to achieve.

The heartache feels like losing a loved one, but the one that you’ve lost is yourself.

The memories are still there. The tunes still vibrate through my body as I remember the first ever championship, just as I remember the last.

Etched in my memory is my journey from the first time I taught my first group of students to the last night where I said my goodbyes. 

Time just flies, but memories live on forever.

You grow up waiting for the day you move out, get your own place, grab your dream job and have fun with your friends.

Only, that reality didn’t quite work out for me. I had to move out of my mum’s house at a young age as it wasn’t accessible, my dream job was taken away due to my body and mind not being able to keep up. Days out with friends are no longer a possibility, because I don’t want them to see the new me.

I encourage you all to grab your dreams and every adventure you’ve been putting off. If you’re able to do it, go for it!

I had done a lot by the time my condition worsened, just over 3 years ago. But there was so much more I wanted to achieve and do. 

Don’t let anyone, including yourself, hold you back. Chase adventures. Chase achievements. Be bold. 

Don’t create the possibility of regret, create the space for dreams to grow.

Having such a strong love and connection with pipe band made life difficult when it was taken from me. Something softened that blow though … Meeting my partner, Zoe.

Having the chance to love someone as much as I love her, and our two beautiful dogs keeps me going.

We persevere each day and live each moment for each other. We can be proud and grateful for that.

I will forever crave that feeling of having my kilt on and playing the drums. But the fact I am so lucky to have so much love and support around me makes it far more manageable to deal with.

Although I’m yet to find a new passion, I take solace in being able to spend time with my partner, nieces, nephews, and dogs. Turns out, I’m pretty good at that too.

A life full of love and laughter with those closest to me is a true blessing and I’m so grateful to be this lucky.