While the end destination is fixed, I have discovered that the journey towards blindness is haphazard and unpredictable. In my case, my sight is in the hands of the millions of tiny photoreceptor cells responsible for transmitting visual stimuli to the brain.
Stargardt's disease creates a hostile environment for photoreceptor cells which gradually degenerate and die. If enough of them die at any one time, then I'm left with another blank spot in my vision. And if the cells happen to be near the fovea, the sacred cow of sight, then the vision loss I experience is more pronounced and more disruptive.
I don't usually think too much about the physiology of it all but I suppose it explains why I can see something perfectly well one day and then find myself frantically cleaning my glasses in an attempt to see it the next.
Sometimes, the degradation is so subtle that I can blame it on tiredness (not unusual with a newborn baby) or hornones (ditto) or bad lighting. Other times, it's scarily obvious that something big just happened. Then it's time to begin adapting to the new status quo all over again.
On bad days, it can feel like a game of musical chairs - getting up and starting again in the knowledge that there'll be one fewer chair to sit down on next time the music stops.
On better days, I know that I'm becoming far more proficient at doing some quick mental triage to work out what's changed, how it will affect me, and how I need to deal with it. I've learnt that it's okay to persevere with some things until the bitter end, that others are easily fixed with some resourcefulness, help from family and friends, or a piece of adaptive kit. And then there are other times when it's just fine to gracefully admit defeat... I never liked doing my tax return anyway.
Sometimes, the degradation is so subtle that I can blame it on tiredness (not unusual with a newborn baby) or hornones (ditto) or bad lighting. Other times, it's scarily obvious that something big just happened. Then it's time to begin adapting to the new status quo all over again.
On bad days, it can feel like a game of musical chairs - getting up and starting again in the knowledge that there'll be one fewer chair to sit down on next time the music stops.
On better days, I know that I'm becoming far more proficient at doing some quick mental triage to work out what's changed, how it will affect me, and how I need to deal with it. I've learnt that it's okay to persevere with some things until the bitter end, that others are easily fixed with some resourcefulness, help from family and friends, or a piece of adaptive kit. And then there are other times when it's just fine to gracefully admit defeat... I never liked doing my tax return anyway.
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