Coming Undone: the slow descent into blindness

Every person I have discussed it with tells me that they would prefer to lose their vision all at once rather than gradually over the course of years. It's more merciful, they say. There could be no denial. The grieving period could be over and done with, instead of repeated every year after that annual *coughtorturecough* eye exam.


And with that I will introduce myself: My name is Cheri "torture me" Frazier, and I have progressive cone dystrophy. I'm also a mother of three, living on government assistance in small town, USA.
There are so many cans of worms there, but we will only open one at a time.
For me, this descent began when I was 25. It was time to renew my drivers license. After three tests, new glasses, and a visit to a retina specialist, I was an anomaly. No doctor that I went to over the course of the next four years had a diagnosis for me.


Most believed it was psychosomatic - or otherwise, self-created.


I spent a long, difficult time wondering if that wasn't true, and feeling a rainbow of emotions:
Fear, of course, because how could it happen at all? What would we do, how could we live,I cant get a job like this.
Guilt, because if there was no diagnosis, I simply HAD to be causing it myself.
Shame. What kind of a mother would invent such a thing, and hinder her own ability to care for her children. Wouldn't that be just as bad (maybe worse) as abandonment?
Confusion. Stress. Anger.
Yes I was angry. It turns out, I have a lot of anger in need of expression. I was angry that this was happening to me.
I was resentful of people who didn't have it, who didn't seem to understand that the problem is real.
Scornful of those people who told me "I can't imagine how hard it must be, you're so amazing!"
Because what is amazing about being sick? For it is a sickness. My disease happens to be congenital, unavoidable, I carry this gene in me all silent and yet ominous.
my friend told me that going blind is like losing a member of the family; you have to go through a process and finally you need closure.
My process is not even over, but it began with denial that lasted four years. I can say it carried on longer than that, but for me the transition into each step of the process leaves remnants behind. All of the splinters cannot be removed at once. Sometimes a bit of denial pops up, and if I'm not careful it will fester.
This is what makes the slow loss of faculties such torture - and I sometimes wish o could just get it all over with so that I can stop wanting to cling to some salvation that will never arrive.
It will never arrive - because being blind is not damnation. It's really not as bad as a death sentence, as long as one is self-aware and makes an effort to learn the new ways necessary to make life just as fulfilling as any other life can be
So I'm taking this walk down into a dark place. I will carry a candle and i won't be alone.


I had a plethora of dreams, ideas and ideals that I had intended to use this blog for. It will have to change, just as I have had to change. I'm going to spill emotions here, bit I hope to be informative. I hope to separate pity from compassion with what I have to say here.

Do Not Stand At My Grave And Weep

by Mary Elizabeth Frye

 
 

 

Do not stand at my grave and weep
 I am not there. I do not sleep.
 I am a thousand winds that blow.
 I am the diamond glints on snow.
 I am the sunlight on ripened grain.
 I am the gentle autumn rain.
 When you awaken in the morning's hush
 I am the swift uplifting rush
 Of quiet birds in circled flight.
 I am the soft stars that shine at night.
 Do not stand at my grave and cry;
 I am not there. I did not die