Still Wanting More
When I was diagnosed with Motor Neurone Disease (MND) at 34, I had a thriving career as an ICU nurse. I had worked hard to get where I was, had professional goals and imagined a future that looked very different from the life I have now.
I am 40. I can no longer move or speak independently, and much of my everyday life depends on my husband helping me. But one thing hasn't changed: my mind is still full of ideas, ambitions and things I want to experience. The challenge is figuring out how to do that when my body can no longer do most of the things I want it to.
Finding a Different Way
Since my diagnosis, my husband and I have been learning how to live with MND and the realities of disability. There have been many adjustments, and some have been harder to accept than others. It sometimes causes frustration but we always find ways around things.
I also started following online a few relatively young people diagnosed with MND who have been living with the condition for more than a decade. I see some continuing with their hobbies and raising their families. Some are still involved in things I would never have imagined possible after an MND diagnosis.
From Ideas to Something Real
Creating my own products and selling them at markets was something I had wanted to do for a very long time. It wasn't a new idea. Over the years, before MND became part of our lives, I learnt how to blend fragrances and make different products, including home fragrances and perfumes. It was something I enjoyed doing as a hobby, but life got busy, and I never really had the time to take it any further.
The idea was still there, somewhere in the back of my mind. Then my husband encouraged me to be creative again, to pick up something I had always enjoyed and see where it might lead. That encouragement made a difference. What had been sitting on the sidelines as a hobby slowly became something we could actually work towards together.
Our first market was the Ōtautahi Made Spring Market at Te Pae Christchurch Convention Centre on 27 September 2026. It was a big market, although Barto hadn't quite realised what he had signed up for until we got there!
We were positioned towards the back of the convention centre. Not many people were passing our stall, and to be honest, we were already feeling a little anxious. Behind us was a lovely couple selling their photography. At some point, a man started hovering around our stall, sniffing the candle testers. Eventually, he decided he wanted to buy a candle.
And just like that, we made our first sale.
When he walked away, Barto and I shared a quick kiss and giggled like two children. We were genuinely excited. Someone had actually bought something we had created! What we didn't realise was that the couple behind us had been watching the whole thing. At the end of the day, they told us they had witnessed our reaction and thought it was magical. They had seen how genuinely happy we were about that first sale.
It was only a $25 candle, but it meant so much more than the money.
Feeling Like Myself Again
Something clicked in my head when we started doing markets. I suddenly felt like a person with new goals again. It was almost as if a different dimension of my brain had opened up. I remember thinking that I could do this forever, that perhaps this was what I was meant to do. It reminded me of how I felt when I qualified as a nurse and started working. That sense of having something to work towards and something to be excited about.
For a long time, I had wondered whether experiences like that were behind me after my MND diagnosis. I had lost so much of my ability to do things independently that starting something new seemed almost unimaginable. But here I am, doing something I genuinely enjoyed.
Being at a market also gives me the opportunity to meet people, have conversations and be part of something outside our usual routine. It isn't always about making sales.
For example, members of our MND support group wanted to support our little venture. But getting someone with MND to a market, with all the equipment, transfers and coordination involved, takes a village. So when someone suggested bringing our products to one of our support group meetings, I thought, why not?
It wasn't about trying to sell products to people who were already part of our community. I wanted them to see what we had been working on, experience the fragrances and share in something we had created. I wanted us to feel that we were still participating, creating and contributing to the community. And that is already rewarding in itself.
My Husband Is the Hands
Of course, none of this happens without Barto.
I may be the one coming up with the ideas, developing the products and making decisions, but he is the one who physically helps bring them to life. I often think of it as him being my hands and me being the brains behind what we create.
I feel incredibly fortunate to have him beside me, helping me pursue these ideas. But I am also aware that this takes time and energy from him, and sometimes means putting some of his own goals on pause. I don't want to romanticise that arrangement. We have our frustrations, and there are times when I wish I could simply get up and do things myself instead of having to explain, direct or ask for help.
I also know that our situation is not everyone's situation.
I admire people living with MND who continue to pursue their interests and maintain their family lives. I sometimes find myself wondering about the support behind the scenes. Who helps them make all of that possible? What about those who don't have anyone?
My own village is very small, and my husband carries a huge part of it.
I was reminded of just how much I depend on him when he had a collapsed lung while we were travelling overseas in 2025. I was terrified for him. As a former nurse, I wanted to help, and do something useful. Instead, I felt helpless. It also hit me how heavily I rely on him. The person who usually helps me through my everyday challenges was suddenly the one who needed help himself. It made me think about what happens when the person you depend on is no longer able to be there.
 |
| (Cairns Base Hospital, Australia/November 2025) |
I honestly don't have an easy answer for someone with MND who has ambitions but no partner, family or practical support to help make them happen. I wouldn't want to tell them to simply find their village, as though that were an easy thing to do.
Not everyone has that support. Not everyone has someone who can be their hands, help with the logistics or turn an idea into something tangible. I don't think a lack of achievement means a lack of ambition or determination. Sometimes the barriers are simply too great.
I wish everyone had access to the practical help and opportunities they needed to continue doing the things that matter to them. Because wanting to participate in life should not depend entirely on how fortunate you are with the people around you.
Still Wanting More
I have learned to understand and appreciate my circumstances, and to accept that there are things I can no longer do. But acceptance doesn't mean I never get frustrated or that I have stopped wanting more. I still have ideas and I still get excited about creating something new. I still want to experience things and see what else I can do.
I know there will be limitations. There will be plans that don't work out, difficult days and things that may eventually become too physically demanding. I can't control how MND will progress, and I don't know how long I'll be able to keep doing the things I enjoy now.
But I will keep trying. The only time I will stop trying is when I am dead. That doesn't mean every day has to be productive or that I have to keep pushing myself. Sometimes getting through the day is enough.
I suppose that's what I want to share with other people living with MND, particularly those diagnosed young.
We don't all have the same abilities, circumstances or support systems. There is no single formula for living well with this illness. But I hope we are given the opportunity to remain involved in the things that matter to us, in whatever way is possible.
I am not trying to prove that I can do everything despite having MND. I know I can't. I just don't want my diagnosis to be the only thing that defines what remains of my life.
I am still curious. For now, that is enough to keep me going.
 |
| (Second market: $35. Third market: $0. 😂 But we still went home happy, giggling about it. We got out, met people, made connections and had a good time together. Not every market is about sales, and that's okay!) |
—
Your kindness means more than you know.
What a great article Ally. Beautifully written and really encouraging. 🥰 Gail and Paul x
ReplyDeleteKeep on doing you . Inspiring
ReplyDelete