Model in the spotlight - Gwendolyn
Posted on Tuesday 7 July 2026 Reading time: 2.5 minute
Ten years later, I look back on the moment I stood as a model for Scleroderma Framed—captured in a frame, simply me.
As if you are posing for a life that slowly changes, trying every single day to hold on to a moment that still feels a little like yourself.
But behind that single photograph, the disease has quietly continued its work, confronting me with the harsh reality of a body that keeps giving up more and more.
Almost no one sees that.
People see a smile, a moment, a presence.
But they don't see how, sometimes, you have to drag yourself through an entire day.
They don't see how every step is an internal negotiation.
How the price is only paid once the silence returns.
And yet, I am grateful.
For my family, for a love that endures. For warmth found in the smallest moments.
For the people who don't understand everything, yet choose to stay.
For those who truly see me.
Especially when so much changes, you discover what truly matters.
And then there is the sea—my favourite place, where I can sometimes escape.
A place beyond everything my body dictates.
No struggle. No limits. No obligations.
Only the wind, the water, the open space.
As if the waves, for a little while, carry away what has become too heavy.
A place where I no longer have to keep going, but where I am simply allowed to be.
Beneath the movement of the waves lies a quiet depth. A peace that does not fight.
Then I realise how long I have lived only among the waves.
Always switched on. Always moving forward. Always surviving.
Because I believed that standing still meant losing.
And yet—somewhere between carrying on, love, and the sea—I discover that I am still here.
Not as I used to be.
Now I am learning that survival is not always about moving forward. That strength is not always found in pushing on, but sometimes in acknowledging how heavy it is, and finally daring to rest.
Even so, it remains difficult because my mind still dreams of more, while my body forces me to choose less.
Perhaps that is the naked truth of this disease:
Not only what it takes away from you, but how it forces you to say goodbye to the pace at which you once knew yourself.
And perhaps there is also the raw truth:
That the decline of your body and the beauty of small moments of happiness can exist side by side—not as consolation, but as two sides of the same inevitable reality.
As if you are posing for a life that slowly changes, trying every single day to hold on to a moment that still feels a little like yourself.
But behind that single photograph, the disease has quietly continued its work, confronting me with the harsh reality of a body that keeps giving up more and more.
Almost no one sees that.
People see a smile, a moment, a presence.
But they don't see how, sometimes, you have to drag yourself through an entire day.
They don't see how every step is an internal negotiation.
How the price is only paid once the silence returns.
And yet, I am grateful.
For my family, for a love that endures. For warmth found in the smallest moments.
For the people who don't understand everything, yet choose to stay.
For those who truly see me.
Especially when so much changes, you discover what truly matters.
And then there is the sea—my favourite place, where I can sometimes escape.
A place beyond everything my body dictates.
No struggle. No limits. No obligations.
Only the wind, the water, the open space.
As if the waves, for a little while, carry away what has become too heavy.
A place where I no longer have to keep going, but where I am simply allowed to be.
Beneath the movement of the waves lies a quiet depth. A peace that does not fight.
Then I realise how long I have lived only among the waves.
Always switched on. Always moving forward. Always surviving.
Because I believed that standing still meant losing.
And yet—somewhere between carrying on, love, and the sea—I discover that I am still here.
Not as I used to be.
Now I am learning that survival is not always about moving forward. That strength is not always found in pushing on, but sometimes in acknowledging how heavy it is, and finally daring to rest.
Even so, it remains difficult because my mind still dreams of more, while my body forces me to choose less.
Perhaps that is the naked truth of this disease:
Not only what it takes away from you, but how it forces you to say goodbye to the pace at which you once knew yourself.
And perhaps there is also the raw truth:
That the decline of your body and the beauty of small moments of happiness can exist side by side—not as consolation, but as two sides of the same inevitable reality.
