I suffer with Stargardt’s disease.
Stargardt macular dystrophy is an inherited eye condition that affects the macula. The macula is a tiny part of the retina, it is the light sensitive film at the back of the eye.
Stargardt macular dystrophy causes a reduction in the central, or detailed, vision. This is the vision used when looking directly at something or someone. Stargardt macular dystrophy doesn't usually affect the peripheral vision.
Last week, at my annual check up at the specialist clinic in Moorfields Eye hospital, I was told that I would be registered as partially sighted. I am still waiting to be told what this means exactly but I know that my left eye has degenerated so much that I find it hard to focus at all when using just my left eye. I am told to expect my right eye to go the same way.
Rather than being upset or anxious I am curious about what my unique way of seeing will allow me to actually see? What do I know because of the way I see? What is my body trying to tell me? What are my eyes actually showing me?
Because of my visual impairment I don’t watch the world go by, rather I see it go by. The detail of all the people, places and things disappear. I am instead much more aware of the beauty in front of me. The scratches, dents and imperfections come to life as I get closer to look closer.
I have to take the time to appreciate because the fleeting gaze just throws up shapes or colour blocks, sometimes with shading but rarely with much more detail.
Stargardt's forces me to see mindfully.
With a constantly softened focus I don’t register detail properly, I even sometimes need someone to describe a photograph to me before I can make it out. Once told I seem to remember the words and in turn seem to see the picture. But if truth be told the content often just escapes me. I live a life in context.
I have to bring my other senses to establish content or detail. Touch and smell. Or taste where appropriate.
It’s always been like this for me, from even before I was diagnosed. It has degenerated, but I wonder how much of that is awareness and how much of that is physical reality. And although I do wear glasses they do not correct my vision. I mainly wear them because they act as a structure for other people. It seems odd, almost incomprehensible, to most people that glasses cannot correct all visual impairments other than total blindness.
Stargardt’s has forced me to slow down.
When I finally listened to my body and saw what it had been trying to show me I knew that I had to re-pace the way I was living. I had to slow down and give myself the space I needed. To see and feel seen I had to stop trying to watch and just notice.
Perhaps my soft focus allows other channels to open up. Because I cannot always see in detail I have had to hone my intuition to sense what is in the space. I have always had a strong intuition but rather than being born that way maybe I have just exercised that muscle more than most because I haven't been able to rely on eyesight in a world where seeing has replaced sensing.
But what does this all mean?
Maybe nothing. Meaning is arbitrary. Made up even. And this is why meaning is so meaningful. The facts don’t change. The narratives of our lives remain as they always were. As they are, however we remember them.
It is how we respond to our personal narratives that changes.
We are ultimately responsible for our emotional reactions. When we are hurt it is because pain is triggered from within. We can control how we respond, often as simply as not taking things personally. Some challenges are tougher than others but the game is still the same.
I could’ve asked, why me? And when I was first going through the process of diagnosis I couldn’t move beyond the fear of what might be wrong. Blindness scared the shit out of me.
Now I see my disease as somewhere else to grow from. Rather than looking at what it closes off (I can no longer watch Almodovar films because I cannot read the subtitles fast enough) I look at what is available to me now. What new truth can I learn? What ancient and huge wisdom is my body revealing to me? How does Stargardt’s disease support my life learnings in a more visceral way.
My aim is to expand our worlds, and I know that expansion can be found in any space we choose to see it. Stargardt’s is an opportunity to be expansive.
OVER TO YOU
Feel free to share this post if you enjoyed it.
If anything in my blog has resonated with you I would love to hear about it. Tell your story or share your insights in the comments box below.
GET IN TOUCH
I coach people who struggle with anxiety, who yearn to live a fulfilling life but feel trapped or at a crossroads so that they can experience a calmer more purposeful life. If this sounds like you, get in touch.