I approach the idea of suffering from 2 angles.  One is from the knowledge that there is always someone who is suffering more than me, suffering atrocities that I cannot even begin to imagine.  The other, is that as individuals, our own suffering is indeed the worst in the world. We walk in our own skins, live in our own minds. Ever since my RP diagnosis, 16 years ago, I have had people comment that they shouldn’t complain to me about their own suffering, given that mine must be so much worse.  I have also had people tell me that RP isn’t so bad, that it isn’t going to kill me and there are people who have it much worse than I do.  I believe we are all human, we all have value in our pain and in our joy and in our expression.  Our plights are our own, but hopefully by sharing our experiences with each other, we learn and find spaces of healing and understanding.  Or is this all bullshit?

I often wonder if I am selfish? I wonder, If I am not writing about my blindness, about my suffering or my loss, what do I have to write about? Who am I beyond the cloak of grief?  Do I look to closely at my own suffering and miss the larger picture in the process? Do I have value in simply being a regular person in the world?  Does my disease give me some special view of the world, change the condition of my heart, or am I naturally a deep thinking and feeling person?  Does it matter? What happens when I pull my eyes away from my own internal struggles and allow the horrors of the world to penetrate my heart? Can I withstand it?  Is it my human responsibility to withstand it?  I talk and write about the beauty of everyone being wired differently, but is that just an excuse to stay in my head? Is all of this questioning a waste of time?

I have spent so much of life questioning my own value, trying to understand suffering, searching for a sense of validity, but perhaps I have missed out on life in the process, by always looking inward for these things.  Perhaps I have missed opportunities to be good and do good in the world by shutting it out.  I like the comfort of my home.  I like the quiet and solitude.  I like standing behind the curtain. I believe that there is life, rich and fulfilling life, behind the curtain, but is this belief a lie? Do I drown out the noise because I am afraid, or does the noise exist because the people who live in the heart of it are afraid of the silence? Perhaps all of this is true.  Perhaps none of it is.

What I do know is that we all suffer.  I have suffered and I have seen others suffer in unimaginable ways, and in allowing myself to see and feel both these realities of suffering, I have come to see it in a fuller spectrum. Three things ring true in my own current story: I am going blind, it is the worst thing in the world, and there are others who are suffering more than I will ever suffer.  My pain is my own, but my heart, if I allow it, can lead me to look beyond that pain and see the world more honestly .  Or can it?