#4 Why I'm taking the risk to write & share my story

A legacy, a message & a spark

Aug 16, 2024

white book on green grass during daytime — Photo by engin akyurt on Unsplash

Today’s letter explores living your dreams, fulfilling your passions, sharing your message with the world, and creating legacies to honour those who are no longer with us.

I’d love to hear from you!

What’s one thing you have been (or would be) inspired to do in memory of someone you’ve lost?

Dear Dad,

Guess what? I’m writing a book! I know, I know, as long as I can remember I’ve always wanted to be a writer. Ever since I was a little girl concocting wild stories about made-up lands. My teachers would often remark about my overactive imagination, something you and Mum knew all too well! Do you remember that time you busted me in Year 8 writing what I thought was a saucy (in hindsight actually very PG) rom-com starring me and my group of school friends on a worldwide cruise with our favourite sports stars? Ah, good times.

This is a little different, though. This book is special. It’s close to my heart.

And not just because it’s about you, and me, and the struggles our family endured as you battled a terminal illness. But because of the invaluable lessons I learnt about life along the way – stuff we don’t talk about nearly enough in society and that I think everyone needs to hear. I want to share this with others. I want to shout it from the rooftops!

But I’m getting ahead of myself.

I mean, sure, it started as a way of honouring and remembering you. Please don’t groan, okay? I knew you wouldn’t be thrilled I’m writing about this… Because you don’t want to make a big deal of it. You never wanted MND/ALS and the last three years it overtook your life to define you. Because you are a firm believer in moving forward, not living in the past.

And I agree with you.

But you have to understand. The past is where you live now. It’s the ONLY place I can find you. And yet, I’m acutely aware that time has this nasty habit of attenuating our memories, dimming the colours and eroding the edges until the images are so washed out that we can barely make them out. Over time, bit by bit, we risk losing the small comfort that is provided by the memories we hold of our loved ones. Do you have any idea how heartbreaking that is?

Those we’ve loved and lost deserve to be remembered.

We all cultivate our own ways of doing this. For some, it might be cooking their favourite meal or travelling somewhere meaningful every year. It could be planting something special in the yard or creating a scrapbook of photos and mementos.

For me, it’s writing. By putting it in writing, you live on. Forever.

So that one day when my memories of you – my hero and the first man I ever loved – are slipping away, and when I can no longer recall the vivid details of this profoundly life-altering experience, I have something to look back on.

And one day when my kids are old enough to hear the whole story (not the watered-down child-friendly version I’ve had to tell them so far), they can read it for themselves. They can understand where they’ve come from, the struggles and loss their family endured before their time, the courage, unity and love that can be born from hardship. So they can see that there is strength of character, resilience, and an incredible capacity for hope in all of us that comes out when we need it most.

But don’t stress, okay? It’s not just about you.

a heart shaped rock with a message written on it — Photo by Nick Fewings on Unsplash

It’s about me too.

Up until ten years ago, you know I had a pretty sheltered life. A stereotypical type A perfectionist who needs to be in control – the apple doesn’t fall far from the tree, right? I had my life all planned out.

Your diagnosis shattered my perfect life plan, my sheltered existence, my idealistic world view that, no matter what happens, everything will be okay. In my professional life, I was used to diagnosing and treating others. I never expected to diagnose a terminal illness in someone I loved. And that despite all my years of studying and training, I was completely powerless to stop it. Based on average life expectancy, we were told you had two to three years left, five if you were lucky. MND/ALS is incurable and universally fatal. This knowledge broke us.

And yet. The one thing terminal illness gives you is this rare insight: the knowledge that the end is coming. If you choose to look at silver linings (something I learnt from you), this realisation – the devastating certainty that your time on this earth had an expiry date – gave us an opportunity to make the most of the limited time we had left with you.

So we did everything in our power to do just that.

We moved in together. You and Mum, Sonal, Aviv and I. Five adults under one roof was pretty chaotic, that's for sure! But it was a no-brainer because it meant we could all be there for you and care for you until the end. It drew us closer together as a family than ever before.

We went on holidays together, creating memories that will last a lifetime. While you could still walk, we went on a whirlwind 12-day bus tour across 8 countries in Europe – your first and only time over there. Later, when you could no longer fly, we took a cruise to New Caledonia. I remember your tiny cabin was absolutely chockers with all your equipment – the power wheelchair, electric hoist, commode chair, pressure care air mattress, BiPAP ventilation machine, cough assist and suction device, you name it. But we managed somehow and we had the best time.

Aviv and I moved up our timeline to start a family so you could see a grandchild. After suffering a miscarriage, I didn’t know if we’d make it. But by some miracle, we did, and when Az was born you said it was the best day of your life – I was only slightly offended that it apparently surpassed the birth of your own child, me! Just kidding… kind of. I will be forever grateful for those precious six months you and Az shared together.

We hosted a Bollywood-style musical extravaganza for your 60th birthday. Two hundred guests, family and friends, came that day to celebrate YOU, your legacy, the impact you’d had on their lives and our community without even knowing it. You died just three months later.

Dad, caring for and then losing you was by far the hardest thing I’ve ever gone through. This experience tested me in ways I could have never imagined.

But.

It gave me some of the most joyous and heartwarming experiences of my life.

And.

It was a wake-up call.

person holding light bulb — Photo by Diego PH on Unsplash

I realised how afraid we are in society to talk about the really hard stuff. We avoid tough conversations because they’re too uncomfortable or painful. How our reticence to be open about things like grief, disability and death leaves the people going through them feeling isolated and unsupported. How vital it is to lift the veil and shed light on these difficult but important topics we all face at some point in our lives.

It also hit me how much we take for granted in life. Being able to move and function independently, eat and drink freely, interact with others and communicate our basic needs. Spending time with loved ones. Making time for things that light us up inside. Noticing small moments of beauty and joy that are so easily overlooked in the hustle of our day-to-day lives.

We always think there will be time for all of this ‘later’. But I learnt the hard way that nothing in life is guaranteed. You never know what’s around the corner. The only thing we can control is how we choose to live each and every day. It taught me to stop living on autopilot, and start truly appreciating those I hold dear. I was inspired to live fully, love deeply, laugh often, and make the most of the time we are given.

So do you see, Dad?

It might have started as a tribute to you or an exercise in personal healing.

But it’s not just about you or I at all.

It’s much bigger than that.

It’s for anyone who has come in contact with and understands the cruelty of ALS/MND.

Anyone dealing with the enormity and devastation of terminal illness.

Anyone who knows the pain of losing a loved one.

Anyone coming to grips with a difficult diagnosis, disability or any other major life change.

Anyone facing a challenge they don’t know how to overcome.

Anyone who feels alone in their struggles, whatever they may be, big or small.

I’m writing for them too.

assorted-color hot air balloons during daytime — Photo by ian dooley on Unsplash

For all the people who I think could relate to any element of our story. For anyone who could learn a thing or two from what we went through. For those who might find solace, support, encouragement, hope, inspiration or strength from our experience.

So don’t I owe it to them to share our story? If I can reach just one person with the words I write, it’ll be worth it.

You always believed in me and encouraged me to pursue my dreams. Here’s your little girl finally following her lifelong dream of being a writer. And YOU were my inspiration. Your journey, your struggle, your courage in the face of all you lost, your hope in the face of certain death, your never-give-up attitude, and your unquenchable zest for life.

Miss you every day, Dad. Love you always. Until next time 💌

Ruhie

I’d love to hear from you! Click the comment button below and let me know:

What’s one thing you have been (or would be) inspired to do in memory of someone you’ve lost?

Grieve Fully, Live Fully

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