If you’ve been touched by ALS/MND then the death of Stephen Hawking probably hurts like hell

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I remember where I was the day that Princess Dianna died. We were in the middle of a 3 hour car trip on the way back from our weekend away. We listened to the radio all the way home and even though I was still young, I definitely got the sense that it was a big deal.

I remember where I was when I heard that there was a massacre happening in Port Arthur. I was sitting in the car listening to the footy with my dad. I remember that Brisbane was playing, I can’t remember who, but I remember the coverage being interrupted by a news report about the devastation unfolding in Port Arthur.

When my colleague told me almost nonchalantly on Wednesday that Professor Stephen Hawking had passed away, a small part of my heart broke. Stephen Hawking was undoubtedly the brightest mind in physics, if not the greatest mind of our time. I don’t need to list his achievements because I’m sure that if you weren’t already up to speed, you’ve read all about them in the last few days.

As outstanding as all of his groundbreaking work and discoveries were, they’re not the reason I felt heartbroken and not the reason I’ll “remember where I was” in years to come.

Stephen Hawking was a bright beacon of hope for anyone who’s been touched by ALS or as it’s referred to here by the group of diseases, Motor Neurone Disease.

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Hawking was just 21 years old when he, like most ALS suffers, was given two years to live. Nearly 55 years later he passed away. Hawking’s defiance of his seemingly sealed fate sees him as an outlier in the world of those battling this insidious disease. For those who have watched their loved ones fade away to nothing, or to those suffering themselves, he gave us hope.

It’s not a hope not that we can overcome as we know there is no cure — yet. This is a hope that our loved ones too can defy the odds. That they can live in relative comfort for years to come and experience many more of life’s precious moments.

It wasn’t just that he lived but also how he lived that made Hawking so remarkable. Time and time again, he demonstrated not only his extraordinary mind but also his strength, tenacity, constant curiosity and a great sense of humour — who from my generation can forget the Simpsons cameo amongst others.

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My incredible aunt succumbed to MND in 2011. Hers was a much swifter decline but again, it was her character that shone through right to the very end. Her strength, resilience, compassion and empathy for others never wavered. I never heard her complain, not once, about the cruel twist life threw her way.

Today, I chose to remember my aunt by all of those wonderful gifts and not by the disease that took her. I choose to be grateful for the time I had and not dwell on the time that could have been. Still, the death of Hawking does remind me of the need to shout out and remind people that this disease needs our attention.

I’m incredibly thankful to Pete Frates, whose ice bucket challenge brought ALS and MND into the vocabulary of people across the world and saw more money donated to the cause in a couple of months than the charities had seen in years.

In Australia, and particularly in Melbourne, Neil Daniher has become the name and face of MND with his FightMND charity. Both men suffering beyond my comprehension, have shown their incredible character by expanding their influence exponentially in order to help make a difference to future suffers. Both have been a face of hope in a seemingly hopeless situation in the same way as Hawking.

Photo: www.fightmnd.org.au

Stephen Hawking once said that he hoped to be remembered for his groundbreaking work with blackhole and relativity and not for his stints on shows like the Simpsons. There is no doubt that he will have his wish but I for one would also like to remember him as someone who gave much-needed hope to those facing the adversity of the monster that is MND.

If you loved this article then the greatest honour you could give me would be to donate to your local ALS or MND charity. Some of the local Australian options include FightMND and MND Australia. Both charities are working to not only find a cure for MND but also to help create a better standard of living for those living with MND.

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About the Author

Rebecca Sharp is a lover of learning, driver of talent, passionate about people, and an advocate for lifelong learning. You can connect with her on LinkedIn.