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I felt easy in my own footsteps and capable of facing the challenges that come with having RP, but those feelings have been replaced by a paralyzing uneasiness and a true distaste for the outside world.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.
Stories From the Edge of Blindness 
May 9, 2012 at 3:48 pm
There are many forms of darkness. Perhaps you are in the dark time of the spirit.
I think many of us with progressive disabilities face the challenge how to stay fully engaged in our lives. Teaching and consulting take me out into the world. Ever growing fatigue encourages me to stay home. Fatigue, and the accompanying brain fog, make being social challenging, yet there are many rewards for swallowing my pride and blundering on. Even the choice of where, and whether, to go on vacation becomes problematic, and some much desired parts of my bucket-list go unchecked.
May you find your way out into the light of others.
May 10, 2012 at 10:32 am
Thank you, for your strength and wise words.
May 10, 2012 at 3:33 am
I have felt the same way. I think the fact that my disease has taken away my self-confidence and replaced it with fear is the worst part of losing my vision. I have become fearful where I was brave. I put a good face on it and I do go out, work, travel, but there is an underlying fear that permeates my way in the world that was not present when I could fully see. I guess it is normal, don’t you think? My doctor told me in 2006 that if there is anything I wanted to see in the world that I should “see it now.” Words of wisdom.
May 10, 2012 at 10:34 am
You have just described exactly how I feel and yes, I too think it is normal. Perhaps the fact that we can express and face these feelings makes us that much braver.
May 12, 2012 at 11:46 pm
Hi, my sister in law has the same illness and I am trying to find ways in which to make her lifestyle more easier. For example, she has an ipad, I am downloading games for her which are challenging in order to keep her spirit high, but I would like your help with the experiences in which you have in order for all of us to work together and make the things you love best easier to do without the help of others. Floweringink, one thing that my sister in law has been able to do is memorize how many steps it take for you to step outside the house and how many steps it takes to go to the supermarket. I would suggest that the first couple of days you go out with your husband and count how many steps it will take you to go to the closets supermarket walking, or to a bus stop or a place in which you find fun.
Furthermore, I would like some help from you all to send out more awareness of this illness to people around the world and especially in the middle east, so that we can start building a website where all the people with the same symptoms can talk to each other and can also push each other to try new ideas, after a while we can start talking to supermarkets, restaurants, etc. in order for them to start thinking of improving their service in order to help you all with your daily life, because we don’t want anyone feeling sorry for you or you waiting for anyone to help you doing your normal routine.
Please contact me on my email: iz4you.me@gmail.com, I would love it if we started to help each other fight this and not give in.
May 24, 2012 at 9:45 am
Dania –
I think the fact that you are so invested in learning about your sister in laws experience and in helping her, is amazing. She is lucky to have you. I know there are some yahoo groups about RP. Keep on being the amazing support that you are; your sister in law is a lucky woman.