Sharn McNeill's talk

St John Bosco Parish – Talk - 6th April, 2014

It’s quite interesting that I’m actually standing here in front of you tonight. Who would have ever thought that I’d be on the pulpit??!! ☺

It must be pretty obvious to you from the way I move and the way I speak that something’s wrong with me. On July 2nd last year, I was diagnosed with ALS…a very rare and aggressive form of Motor Neuron Disease. Some of you might recall Cathy Glossop, a teacher here at Bosco who died of MND some years ago…and the outlook isn’t much better for me either I must say. 

My deterioration so far has occurred in only the last 18 months. It was only in June 2012 that I did the Cairns half Ironman…so clearly, it’s very aggressive. Hopefully, through a collaboration of global medical experts and stem cell scientists, there may be some very innovative procedures that I can have that may at least slow things down and even eventually lead to a cure. But the chances are very slim at this stage. However, as I say on my website and Facebook page, I decided that “A slim chance is good odds, if you believe”.

So let’s talk about this “believe” piece.

I would never have described myself as overly religious, though I have always felt like a Christian person and have always tried to BE Christian in how I treat people and live my life.

I was raised as a Catholic, we came to mass EVERY Sunday (we sat over there!), I learned prayers, I went to school here, grew up in a strong and loving family with good Christian values and with the Bosco community and friends always significant in my life. 

I have always believed in God, but haven’t been so good at attending Mass regularly. More significantly, I haven’t really spoken about my faith so publicly, and I actually thought twice about sharing my deepest thoughts about my faith with you all tonight because for me it’s VERY personal and makes me very vulnerable and scared…but this illness seems to be intent on making “vulnerability” my best friend. I was also nervous to talk to you because in all honesty I wasn’t even sure what my thoughts and feelings were about my faith and spirituality and whether anything I’d share would make sense. However, the process of preparing my talk has actually been a really good education for me too…because it’s helped me better understand my own faith and beliefs. Still…as for whether my perspective will make any sense…here goes!

To understand my mind and my beliefs, you need to share a bit of my journey with me. ☺ When I was first diagnosed, my mind went to mush. For the first 4 hours I was a mess. My mind froze: Total shock. I mean, at 30 years old, only having potentially 2 years left of life! What about MY long term plan?

  • Living a long life with my husband?

  • Having my own family?

  • Building and running my own business;

  • Doing my Full Ironman (I’ve always been into my sport).

I was totally floored that it all could/would be taken away!

Somehow, miraculously almost, later that same day, I decided to make a choice: I decided that ALS is something I have; it’s not WHO I AM! I very consciously chose not to focus on the worst outcome, but instead to look at the best possible outcome – not just for me but for others too: for my husband Russ, my family, etc.

I chose for it not to consume me - in a negative sense anyway. I chose to accept it, to own it, and to take action on it – this way I’m back in control of my own life. I credit this strong and positive level of thinking to my own positive attitude and the exceptional support of very loving family and friends.

But to be honest, even with that support, I found that very quickly, in the solitude of my own time, even that incredible love and support just wasn’t enough…and I was looking for answers and needing to dig deeper than I’d ever had to dig before.

As a person who believes in God, it didn’t take long (maybe a few days, that’s all), before I found myself questioning you know who! ☺

Of course, early questions were like, “why me”? Why now? I quickly came to see that maybe it’s because I’m the right person for the job…not that I would ever have applied for it!! ☺ Most “growth opportunities” in life don’t exactly get presented as attractive opportunities that make sense straight away, do they? Look at Mary herself on discovering she was pregnant…via an “angel” no less!! I know my parents wouldn’t have accepted that explanation, hey Russ? ☺ And I’m sure she didn’t respond with “wow…thanks so much, what an opportunity. This will make me popular”.

Next question for me to God was, “am I going to die”? The answer I got was “we’re all going to die”! So I’m like, “Ok smarty pants, am I going to die…soon”?

The answer was …”not yet! There’s more for you to do here first”.

This didn’t really make sense to me. I needed to process what that meant…what the “more to do” was. I started to realise that this illness was giving me an opportunity to actually be who I really am and do what I really wanted to do with my life. I’d always wanted to be a voice of positivity - and hope - and optimism for others, but always felt like just a very small voice – just a nurse, just Sharn, just totally average and normal. Maybe now I had a chance to turn that volume right up! ☺

Within just days, I realised that I’ve been called to do something great with this. I had REALLY strong feelings about this. And I felt REALLY encouraged to take people on this journey with me. Not FOR me, but because I’ve been guided to do this. This part I find hard to explain but my feelings were SOOOO strong and so compelling… it didn’t even make sense to question them…something like a mission. To be truthful this really excites me…and therefore because of this bigger, exciting opportunity, it’s made it impossible for me to be angry about my illness. I wouldn’t have this opportunity without my illness, so questions to God like, “if you were a loving God, why did you let this happen” seem so pointless. Yes, my illness has its burden, but it also has a massive opportunity to make a difference…and already so many good things have come into my life – even in just the past 9 months.

Knowing what questions have gone through my mind as I confront my own mortality, it’s made me reflect on what questions might have also gone through Jesus’s mind on Good Friday as he confronted his own mortality. It seems to me that what helped him accept his fate was his focus on the bigger picture of what his “situation” was doing for the world – and his faith in someone/something bigger than himself and his situation. You have to - because frankly, because when you’re needing to dig really deep, searching amongst “earthly” meanings gives nothing of real help. So I’ve tried to use his example with how I’m tackling what life has dealt me!

How do I know this is what God wants for me? That this is better than the plan I had for my own life? The only way I can see – is to believe that someone/something much bigger than me and with much more understanding than me, has a purpose for me beyond what I can see for myself. How else can I make sense of this? At least this gives me a way to handle it all – with a calmness that allows me not just to cope but to even enjoy it and thrive in it. How do I believe that? I guess that’s “faith”? Faith, by definition, means you don’t understand…you just trust and believe anyway.

How do I know I’m not just making all this up? As I grew up I learned about God and faith through words – sermons, teachers, Bible passages…and that’s where, initially on my ALS journey, I looked back for guidance. But more lately, I’ve found that God speaks to me more through my feelings, and my feelings are VERY strong. I know myself well enough to know that I could never have created these feelings on my own and they’re so much stronger than my own that I can’t refute them. And they’re so positive and uplifting for me that I of course don’t want to! ☺

What are these feelings I’m referring to? I believe that any of my feelings that are based in LOVE come from Him – they are my spirituality: feelings of acceptance, gratitude, hope, positivity, joy. My faith comes from this same spirituality. 

Separately to my faith, I’ve also been blessed with abundant levels of tenacity, resilience and courage. Like many others, I’m also aware of certain “life principles” that can help us deal with tough times, like:

  •  “No pain, no gain”; or

  •  “Everything happens for a reason”; 

But when you face real hardship, and need to “dig REALLY deep”, you need more than that. You need something that goes beyond your intellect - to simply make sense of things – and certainly beyond your own inner strength, because the feelings of confusion, the despair, the emptiness, the fear, the hopelessness, all become overwhelming at a human level. You need a force bigger, profoundly bigger than the challenge itself! You almost desperately yearn something bigger to “fall back into the arms of”, that will combat all these negative feelings and perspectives and instead fill you with positive, life-giving energy and confidence.

This yearning that comes with really confronting experiences, effectively brings you to a T intersection. To the left is the human path: where we deal with things according to our own capacity, and invariably experience confusion, despair, emptiness, hopelessness, depression. 

To the right is a positive, much bigger picture: a whole new perspective, with tons of personal growth, acceptance, gratitude, hope, confidence, positivity, more love and of course, inner peace. Turning “right” takes faith. But it always works. For me, this is the promise of Easter. That Sundays ALWAYS follow Fridays!

Faith allows you not just to cope and survive, but to thrive and revel in it because you see and experience the same situation from a totally different and positive perspective. Without faith, not only do you go left, you didn’t even see it as a T intersection in the first place! 

I’m not saying that anyone without faith always goes left. But I am saying that on the really tough issues, the issues bigger than your own capacity, I don’t see how you can go right, and stay right, without faith.

My faith allows me to see a daily (and sometimes hourly!!) choice between left and right and gives me the confidence to go “right”. My spirituality gives me my faith and fills me with all those positive feelings and options in the first place. 

In conclusion, I said at the start, that I would never have described myself as an overly religious person. I don’t know my “religion” and all its meanings and the Bible passages and prayers and rituals as well as many of you do. But, I do consider myself extremely fortunate to have my faith and my spirituality. I definitely feel CHOSEN. I have no idea how I could possibly deal with this challenge so positively without it. More to the point, without it, I’m convinced I couldn’t deal with it at all. Thank you, most of all, to my mum & dad for instilling in me my faith and spirituality and of course to all of you here - the Bosco community - for nurturing me with it as I grew up. It’s literally saving my life.

Where to from here? It would mean the world to me if you would continue to share my journey with me. 2 things I ask of you:

  1. Make the choice EVERY DAY to draw on your own faith and spirituality especially when at the T intersections in your life. And choose to live with positivity, hope, acceptance and gratitude. Will you do that? Let’s do it for each other.

  1. Follow me on my shining4sharn FB page: And share your thoughts and experiences with me. Your involvement in my life and your support are like oxygen for me.

Thankyou for listening to me.

Sharn died on 20th July 2019 - a large part of Fr Mick's Homily at the funeral mass was taken from this talk.