The Person I Was, The Person I Am
I’ve been many versions of myself long before ALS ever entered my life.
I grew up in a complicated home in complete poverty. My childhood taught me early what it meant to survive. So when people ask me who I was before ALS, there isn’t a simple answer.
I was different things to different people. A kid trying to make sense of the world. A sibling who understood what it meant to go without. A young adult determined to get out of that cycle.
I moved away from home with no clear plan beyond “I’ll figure it out.” And I did. I built a life, became a nurse, and supported my family back home not because I had to, but because I knew what it felt like to struggle.
I was proud of that version of me. I was independent and capable. I worked hard, laughed easily, spent time with friends, went hiking. I had a life that felt full and earned.
And then, slowly, that version of me began to change.
There was no single moment where everything shifted. It was gradual, almost quiet. At first, I told myself I was still the same. I kept going, kept pushing. For some, that might look like denial. But for me, it was survival.
Until eventually, my body started making decisions for me.
That’s when I understood that I could no longer hold on to who I used to be in the same way.
What’s been hardest is the feeling of being reduced. From someone who was working, contributing…to someone who is seen as a responsibility, a statistic.
There are moments when it feels like parts of my identity have been stripped away and replaced with a label I never chose.
I felt that one day, sitting quietly in our car. A couple of neighbours walked past and said, “This is the house of the paralysed lady in a wheelchair.” They didn’t realise I could hear them but I wasn’t offended.
I used to be known for so many things. Now, to some people, I am simply that.
The lady in the wheelchair.
The grief isn’t always about the big things. It’s the small, invisible losses that hurt the most. Like sound of my own voice or getting out of bed and making a cuppa without thinking.
I miss spontaneity. I miss the ease of existing in my own body.
Even something as simple as going outside now requires preparation, energy, and coordination. And if the weather changes, plans change. My wheelchair isn’t just equipment, it’s part of how I move through the world. If it fails, so do I.
When I look in the mirror, I see the outline of who I used to be. A familiar face, but a different life. I ask myself quietly, "Who am I now?"
People who once knew me as strong now struggle to see me vulnerable. Some don’t know how to act around me anymore. Sometimes, they see the wheelchair before they see me.
In certain spaces, I feel it even more.
Being spoken about instead of spoken to. Sitting beside my husband while decisions are discussed around me, as if I am not there. That kind of invisibility is hard to explain unless you’ve felt it.
I was once part of a nursing group...people I worked with, mentored, and shared long shifts with. But over time, I felt myself quietly disappear from that space. It was as if I no longer existed in a world I once belonged to. That kind of exclusion carries a different kind of sting.
I don’t know if it comes from discomfort, uncertainty, or something deeper. But it made me realise how easily disability can shift how people see you, even among those you thought would understand. It opened my eyes to a kind of ableism I hadn’t seen before.
But despite all of that, I’ve come to realise something important. Not everything has been taken.
My mind is still sharp. My humour, my curiosity, my perspective, they have not disappeared.
In some ways, I’ve discovered parts of myself I didn’t know existed before.
I used to believe that productivity meant movement. That I had to be doing something to have a meaningful day. Now, I understand the power of stillness. There is so much to learn when you are forced to slow down.
You notice things you never paid attention to before like how irritating the sound of a fly can be when you can’t just get up and shoo it away. Or the small, almost funny realisations about the people you live with. Like how my husband seems to go to the supermarket almost every day just to buy snacks. Something I never noticed before, but definitely notice now.
There is strength in that kind of awareness. There is also strength in waking up every day and facing a life that looks nothing like the one you planned.
In my marriage, things have changed, but the values of who we are together remains. My husband has stepped into a role that requires strength I don’t think either of us understood before. He leads our home in ways I respect, while still trying to hold on to the partnership we’ve always had.
There are also days when I don’t know whether to feel grateful or heavy. Grateful for another day, or aware that another day also means someone else has to do the physical labour to care for me.
With that, a deeper understanding of the caregivers out there especially my husband. Caring is physical, emotional, and relentless at times. They get tired too. They carry more than what people see, and they deserve recognition, support, and care as well.
Over time, I’ve rebuilt my sense of identity. Not around what I can do physically, but around who I am at my core. I am now an advocate. A voice for others navigating the same diagnosis. Someone who shares what I’ve learned so that others don’t have to feel as lost as I once did.
I was part of creating a booklet for people newly diagnosed with MND/ALS in our region. It was a group effort, and I helped put it together using my eye gaze computer. It’s a small thing, but it matters because those early days after diagnosis can feel overwhelming, and clear, practical information can make a difference.
To anyone who feels like they’ve lost who they are because of illness, I want you to know this:
You are allowed to grieve. You are allowed to feel angry and heartbroken.
You are also still here and there are parts of you that remain stronger than you think.
For me, identity is no longer about roles or titles. It’s about what remains when everything else is stripped away. What remains is this:
I may have lost my leaves, like a tree in winter. But my roots are still here. Alive. Holding firm.
That is still me. And that is enough.
Your kindness means more than you know.
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