Will I Still Be Alive on My 40th Birthday?

August 09, 2026

Will I Still Be Alive on My 40th Birthday?

After I was diagnosed with ALS at 34, one question quietly followed me everywhere: "Could I make it to my 40th birthday?"

Back then, the thought frightened me. ALS has no cure and the future is impossible to predict. Being a former nurse meant I understood enough to know what the diagnosis could mean. Perhaps, in some ways, I knew too much.

I hoped I would reach 40, but I am not going to lie and pretend I simply carried on without thinking about it. I counted the years. Sometimes, I even counted the months. It was like having a silent countdown running somewhere in the back of my mind, even during the good moments.

Today, 9 August, I am 40 years old. I made it.

(Photoshoot courtesy of MND NZ/2026)

The Life I Thought I Would Have

Before MND entered the picture, I assumed my life would continue along the usual path. I imagined I would keep working as a nurse. My husband and I would build our life together, make plans and worry about the ordinary things young couples worry about. I did not expect life to be perfect, but I thought I had time to work things out as I went along.

Then MND was first mentioned.

I still remember the strange numbness I felt, followed by a burst of emotions that I could not control. Everything suddenly felt uncertain. It was not only the fear of dying. It was the fear of what could happen before then and how much of myself I might lose along the way.

People often say, “You Only Live Once.” YOLO was everywhere in pop culture at the time, usually used as a reason to travel, take risks or do something impulsive. But after my diagnosis, the phrase felt different.

Yes, you only live once. But what are you supposed to do when you no longer know how long that one life will be? How do you live fully when you are frightened of what tomorrow might bring? I did not know the answer. I am still not sure that I do.

The Hardest Conversation

One of the most difficult conversations I had was with my then-fiancé. I told him he was free to leave. But he stayed.

I knew life with someone who had ALS could turn everything upside down. I understood that our future might involve caregiving and increasing responsibility. I did not want him to feel trapped by a promise he had made before either of us knew what was coming.

Today is not only my 40th birthday. It is also our 6th wedding anniversary.

He chose the long haul and the completely unpredictable ride of living with ALS. Although I am the one with the diagnosis, he lives with it too. He has carried me physically and emotionally through the years. So, in many ways, this birthday is also a celebration of him.

A ~~Complicated~~ Milestone

Over the years, families in the MND community have become friends. Some people progressed much faster, while others progressed more slowly. MND looks different in every person. I hold gratitude for still being here while also remembering those who are not.

I am thankful for our family and friends who continue to show up, for our neighbours who became good friends, and for the people I have met through the MND community. I am grateful for every act of kindness, including the small ones that people may not even remember but that made difficult days feel less lonely.

What 40 Means to Me Now

Before MND, turning 40 might have represented career progress, financial goals or another stage of adulthood. Now, it means something much simpler.

It means waking up and seeing my husband beside me. It means seeing my two doggos and watching the little things they do that make me smile. Everything else I am still able to enjoy is a bonus.

What matters more to me now is presence. I value people who genuinely want to be part of my life, even when my life is difficult or inconvenient. I value being heard, even though I no longer have my natural voice. I value being able to write this blog with my eyes and still share the thoughts that ALS has not taken away. Many things that once felt important no longer carry the same weight. I care less about following the timeline I thought my life was supposed to follow.

Five years ago, I was counting down the life I had left. But being here today is a reminder that I am still allowed to make plans and have goals. Perhaps that is what I want this day to represent. I made it to the age I was once frightened I would never see. Not in the body I imagined, not in the life I planned but I am still here.

C’est la vie.