“How long have I got before I lose my sight completely?”
The eye specialist looked at me for a moment.
“Get your affairs in order.”
That was not the answer I had expected.
I was looking for a timeline. A prediction. Five years? Ten years? Twenty?
Instead, I received a response that sounded more appropriate for someone facing a terminal illness than someone sitting in an ophthalmologist’s office.
At the time, I laughed awkwardly. What else was there to do?
But his words stayed with me.
“Get your affairs in order.”
Looking back, I realise he was not really talking about my eyesight. He was talking about the fact that the life I had imagined for myself was no longer guaranteed. The future I had taken for granted had suddenly become uncertain, and ahead of me lay a landscape shaped by change, adaptation, and loss.
For many years afterwards, I found myself reflecting on how similar this experience was to what many people face after receiving a life-limiting diagnosis.
I am not dying. Going blind is not the same as facing death.
Yet both journeys often begin with a profound disruption of the future.
A doctor tells you that the life you imagined may no longer unfold as planned. Assumptions about tomorrow become uncertain. You discover that the future is no longer something you can safely take for granted.
The diagnosis itself is often only the beginning.
What follows may be a gradual process of loss, not necessarily the loss of life, but the loss of certainty, identity, independence, and imagined futures.
When I was first diagnosed, I thought I was grieving the possible loss of vision.
In reality, I was grieving much more than that.
I was grieving the artist I might no longer be, the books I might never read, the landscapes I might not see, and the spontaneous independence of getting into a car and driving wherever I pleased.
I was grieving futures that had not yet happened.
Psychologists call this anticipatory grief: the grief we experience when we know a loss is coming but cannot know exactly when or how it will arrive.
Although the term is most often associated with terminal illness, it described my experience of vision loss remarkably well. Much of my grief was not for what had already gone, but for what I suspected might eventually disappear. I found myself mourning books I had not yet failed to read, paintings I had not yet become unable to paint, and journeys I might never take independently. The losses existed largely in the future, yet they cast a shadow over the present.
People living with a terminal diagnosis often describe something similar. They may grieve future birthdays, future conversations with loved ones, or simply the assumption that there will always be more time. In both cases, the loss is not a single event but an ongoing adjustment to an uncertain future.
As my vision deteriorated, there was no dramatic moment when everything changed. Instead, there was a gradual accumulation of small relinquishments. Some tasks became more difficult others required adaptation. Activities were quietly abandoned. Each loss was manageable in isolation, but together they reshaped my sense of who I was and how I moved through the world.
What vision loss taught me is that grief is not confined to bereavement. We grieve whenever something precious is taken from us, whether that is a person, a capacity, a role, or an imagined future. The object of grief may differ, but the emotional terrain is often surprisingly familiar.
Perhaps that is why the specialist’s words have remained with me for so many years.
“Get your affairs in order.”
At the time, I didn’t know quite what to make of them. The comment felt oddly out of place, more suited to someone facing a terminal diagnosis than someone asking about the likely progression of an eye condition. It was surprising, unsettling, and faintly surreal.
I carried the memory with me, not because I immediately understood its significance, but because it seemed such a strange response to the question I had asked.
Only much later did I begin to appreciate the deeper truth hidden within those words.
Not a prediction of catastrophe, but a reminder that change is inevitable and certainty is largely an illusion. Blindness did not take certainty away from me; it simply exposed how little of it any of us possess. The future had always been uncertain. I had merely managed not to notice.
In that sense, the challenge was never really about preparing to lose my sight. It was about learning to live fully in the midst of uncertainty, appreciating what remained without clinging too tightly to it, and recognising that the value of our lives lies not in their permanence but in their impermanence.
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