Losing Independence and Redefining What It Means
I used to think I was fiercely independent.
At 22, I moved to New Zealand in 2010 with only 90 dollars in my pocket. I didn’t know how long that money would last or how long it would take me to find a job (it took two months). My tuition and rent were paid for a short time, but everythng else like food and daily life I figured out on my own.
I remember being so proud of that version of me. I didn’t ask for help. I made it work.
That, to me, was independence.
Before MND, I was the kind of person who didn’t mind being alone. I would hike up the Port Hills, sit by the ocean at Taylor’s Mistake with fish and chips, and just exist quietly with nature. Of course, I had friends and shared many moments with them, but I also enjoyed my own company. I didn’t realise then how much of that freedom lived in the small, unnoticed things.
The first signs were subtle but textbook. My hand didn’t quite do what I told it to do. I struggled with fine motor tasks like using a key, buttoning my top, flicking a light switch. At work, it became harder to snap a vial of medication or draw up a syringe.
I loved being a nurse. It was more than just a job. It was my world. It gave me purpose, community, and a sense of who I was. So when my hands started to fail me, it wasn’t just physical. It felt like something deeper was slipping away.
Then came the moment I didn’t expect to hit me the hardest........losing my voice.
I still feel it now, even five years later. Losing my voice felt like losing a part of my identity, my personality, my ability to express something as simple and important as “thank you.” There are moments when I just want to say those words freely, without effort, without technology, without delay. And that grief doesn’t really go away.
There were also smaller moments that somehow felt just as big.
I remember trying to put on lipstick before work. I used to do makeup for others like weddings, special occasions and suddenly I couldn’t even apply my own. My hand dexterity was effing me up! I got so frustrated, so emotional, that I had to ask my husband for help.
And there he was, a big, bald, bearded man learning how to do my hair and makeup overnight lol so I wouldn’t go to work feeling defeated. He jokes now that it’s just one of the many services he offers.
We laugh about it, but in that moment, it was a quiet breaking point.
Because it wasn’t just about lipstick. It was about realising that what used to be effortless became a struggle and the small things I never thought about were slowly being taken away.
Something as simple as heating food in the microwave. I managed to open it, but when it finished, I couldn’t open it again. I waited, pretending, hoping someone would come by so I wouldn’t have to ask for help.
And then there was the day I fell at work.
No one was around. I couldn’t call out. I had to slowly drag myself up.
That was the moment I knew. My life had changed for good.
Leaving nursing was one of the hardest decisions I’ve had to make. Not just because of the job itself, but because of everything it represented. The independence, the purpose, the identity.
I had always been the breadwinner. The one who solved problems. The one people could rely on. Now, I am the one relying on others.
And that shift is not just physical...it’s emotional.
I struggle with asking for help. Even now. It’s ingrained in me to not inconvenience others, to keep going for as long as I can. But there are moments when you have no choice like needing someone to scratch an itch that you cannot reach. Something so small can become overwhelming if ignored.
There are times I feel like a burden, vulnerable and my sense of dignity feels like it disappear. But I am also deeply aware of the kindness around me. People who show up without being asked. Friends who bring food, sit, talk, and simply exist with you.
Over time, I’ve realised something important.
Independence, as I once knew it, no longer exists in the same way.
It has become something else. It is now, interdependence.
I still have control over my life but it looks different now. It’s in the decisions I make, the routines I create, the way I communicate my needs.
When I stayed in respite care, I created a template of my daily routine for the morning, evening, everything in between. It was laminated and placed on the wall so caregivers could follow it without me having to explain everything each time. It gave me back something I thought I had lost. Control. Dignity. Ease.
(Free to download. Link here > https://buymeacoffee.com/terminallywell/extras )
Using my eye gaze computer has also given me a different kind of independence. I may not have a voice in the traditional sense, but I still have something to say. I can still communicate, participate, and be part of conversations and decisions.
I am still a wife. I am still a person with thoughts, opinions, and a place in this world.
MND may have taken certain abilities, but it has not taken me.
And there are still small wins.
Making it to the toilet without an accident. Seeing my husband (and my doggos) well and okay. Being part of the MND community and sharing what works, what helps, what matters. These things might seem small to others, but they are everything.
This blog, in itself, is also a form of independence. A way to speak not just for myself, but for others who may not have the means to do so.
Time matters in this illness. Access matters. Support matters.
No one should have to wait for essential care like cough-assist machines or wheelchairs because of system delays. These are not luxuries, they are part of living with dignity.
If there’s one thing I’ve learned, it’s this:
Losing independence does not mean losing yourself. You are still you!
Needing help does not make you less of a person. It makes you human.
There is strength in asking. There is dignity in receiving care. There is still life to be lived, even when it looks different from what you imagined.
And if you are in that space right now, feeling like everything is being taken away, please know this: You are not alone.
There are still ways to live fully, to love deeply, and to exist with meaning.
Even here. Even now.
💜
Your kindness means more than you know.
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