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Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.

Month

June 2018

Perspective on Suffering

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?
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Wax ~ Susan Richardson

Eating Barbequed Iguana

I fell a few weeks ago, on the sidewalk, while gawking at another new group of hideous town houses that are being built in our neighborhood.  When I fell, I cried, not because it hurt, but because I felt humiliated, broken, slapped in the face yet again by RP.  My depression and self loathing voices took center stage and told me I was useless and really shouldn’t even be outside if I can’t manage to walk a block without falling down and scraping my knees.  I wanted to hide, from the RP and the day and the world.  I wanted to hide from myself, pretend I was graceful, dream I could float.  My sadness turned to anger and I stumbled home, terrified that every step may be the one to send me back into the unwelcome embrace of the pavement. Until very recently, this had been my usual response to falling.
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