Stories From the Edge of Blindness

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


May 2012

Before the Darkness

Today I read a fellow  bloggers post (please see the link to her blog, narrowing world,  in my blog roll) about things she would like to see before she loses her sight completely.  It made me reflect on something that I have struggled with a lot lately.  I notice that as time passes I seem to sink deeper into isolation, avoiding all the challenges that come with leaving the house alone.  I feel as if I am actually becoming afraid of going out without my husband or a friend, and this saddens me.  I remember a version of myself that was vibrant and fearless and wouldn’t think twice about going out to the market or to get a coffee.  I can remember a time when I felt easy in my own footsteps and capable of facing the challenges that come with having RP, but those feelings have been replaced by a paralyzing uneasiness and a true distaste for the outside world.  Why would I want to go out when I can be safe and sound at home? Why would I want to halt the progress of my disappearance?  Perhaps I find a strange brand of comfort in knowing I can disappear from the world as the world fades into the web of my disease.

When I think about it logically, I get that the best way to combat this new-born fear is to face it and get the fuck out of the house; and wouldn’t it be great if it were that easy.  Some nights, as I am trying to fall asleep, I make big plans for myself trying to psych myself up for going out the next day.  I imagine taking the bus to some place I love and finding a lovely nook where I can sit and watch and write.  And then the morning bursts in and the sun shines far to brightly and I can’t find any reason to leave the sanctuary I have created.  All of my excuses sit conveniently at my fingertips, ready and waiting to be used every day.

Most readily available is the excuse that it is too hot and way to sunny to go out, and as with most of my excuses there is truth to this.  I loathe the heat and the sun presents real problems in the seeing department.  But, I have hats and sunglasses and I know there are ways to keep the sun at bay.  Another of my favorites is that I simply hate Los Angeles and most of its shallow inhabitants, so the choice to avoid the pools of nasty plastic people is of course the wise choice.  But, I used to be able to ignore the self-important plastics and I know that there are also some pretty terrific people in LA.  I also use depression as an excuse and sometimes I do feel so utterly depressed that getting out of bed is a challenge.  But, I know in my heart that I have the strength to rise above it; I have done it time and time again.

So, why did the blog post I read this morning make me reflect on my isolation?  Because it makes me think of all I am not seeing while I sit in my house, getting fat and avoiding interactions with people.  It makes me think of how much regret I will feel at having wasted the time my eyes have left with the world.  I know that deep within me there is the desire to be more than the dumpy housebound pajama clad woman I have allowed myself to become.  And I know there is so much I want to see before the darkness takes over.

So Far Beyond Writers Block

I haven’t written a word in ages.  Not a blog post or a letter or even a grocery list.  I try to read other blogs about writer’s block and books about writing tools, but I think what I  have isn’t writers block, but total writing avoidance.  I find myself actively avoiding this blog and the computer in general.  I don’t check the email address associated with this blog because I am afraid that if I do I will feel guilty for not writing.  But, when I come here and I write and I share my experiences and I put out a new blog post, I feel elated. I know that my one true passion is for writing and yet I avoid it as if it will somehow cause me harm.

I have thought about the possibility that what I am most strongly avoiding is writing about RP.  I find myself avoiding a lot of things because of the RP; some because of physical limitations or ramifications and some for purely emotional reasons.  But, I don’t have to write about RP.  I choose to write about RP because it is what I know and it is so entangled with every moment of my life, but I don’t write because I have RP.  I loved to write long before I knew I was going blind and even then I suffered from this total writing avoidance.

So, maybe I am just lazy and I don’t want to put in the work it takes to write something I can feel proud of.  But I will do the dishes and clean the house and work out and do the laundry and a host of other things before I ever get around to sitting down at the computer.  I will take the time to crochet 20 scarves to avoid writing.

Maybe it is fear.  But of what?  Pressure, failure, discovery? Perhaps I am afraid that I really don’t have anything to say or that if I try I will find my voice has disappeared.  I don’t know.

But I do know that I am here now, in this moment on this day, writing.  And it doesn’t have to be perfect or great or even good as long as the words are there.

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