I read a post this morning from Sightless Musings, that hit me at my core. Please read it.

I was going to write about writing today, about feeling completely inarticulate, but after reading the above mentioned post, I changed course a bit. I am still feeling like a complete bumbler in regard to my writing, but I press on and tell this story (if you can call it that) anyway. 

On Sunday, I spent time on a computer that isn’t mine, and therefore not set to my personal and necessary degrees of brightness, font size, etc.  I usually take the time to change the settings on another person’s computer while I am using it, but I was feeling lazy on Sunday and knew I would be on the computer for only 30 minutes or so.  I was also keen to complete the project I was working on and not really thinking about my eyes.  This was my first mistake.

I most often wear a large brimmed hat when I go out, but I do have a couple of medium brim hats that I occasionally pull out of the hat box, usually on cloudier days.  I would never be so remiss as to go out hatless, but I was determined to wear my purple medium brim hat on Sunday, and so convinced myself that the medium brim, in conjunction with my enormous sunglasses, would be more than sufficient to block my eyes from the sun.  This was my second mistake.

I woke up yesterday, opened my eyes and felt as if someone had impaled them with barbed wire.  Foolishly, I hoped the pain would subside and attempted to go about my usual morning routine.  When I opened my laptop, the glare from the screen was so painful, my eyes teared up and began to ache, like they were being battered from the inside.  I ignored it, or tried to, and read a few things, with my eyes squinted tightly against the light, but after a few minutes, knew I couldn’t continue.  I felt like I had been sucker punched by RP, but in reality I was facing the consequences of my own actions.

It wasn’t the first time that I ended up with eyes so sore I couldn’t use them for an entire day.  I know that even 10 minutes on a brightly lit computer, or just a few blasts from the sun beneath the brim of my hat and through the tops of my sunglasses, can leave me in immense pain.  So why do I take the risks?  Why do I put my eyes in jeopardy when the solutions are so simple and so readily at my disposal?  Is it because I don’t want to be blind, to have RP?  Or am I just lazy?  Do I forget that I have RP, that I don’t see like other people, that just the smallest bit of light can steal an entire day from me? Am I hoping that just once, I can do simple things like other people?

It might sound crazy, but it is easy to forget that I am blind.  I am really good at blending in.  If you saw me on the street, you wouldn’t have any idea that I have a severe visual impairment.  I am also making constant efforts to down play my blindness so others won’t feel uncomfortable or sorry for me.  So, it isn’t really fair that I get pissed off when those close to me seem to forget my struggles, but it makes me angry, this self-inflicted suffering in silence.  It is a constant teetering, a constant state of self-doubt.

On days like yesterday, I dive into dialogues with myself about how unfair it is that I have been chained to this disease.  I put all of my feelings on display to give them attention and room to breathe.  I want to tell people how much harder it is for me to do…..everything.  So many freedoms have been stripped from me, so many choices I could have had, have dissolved into the hands of RP.  I have been robbed of grace and fallen to the ground more times than I can count.  It is exhausting trying to maneuver through life with eyes that don’t work right.

I suppose that some days, however childish it may seem, I fight RP by breaking the rules.  I allow myself to forget that I am defective, broken, that my life is at the mercy of consequences delivered by the unforgiving hand of a mutation.  I rebel against the reality of my blindness, allow myself to believe, for just a moment, that I am not so different after all.