Ramblings of a Mad Piggie

Saturday, February 10, 2007

hI....mY nAME iS j aND i hAVE RP.

Retinitis pigmentosa, or RP, is a genetic eye condition. In the progression of symptoms for RP, night blindness generally precedes tunnel vision by years or even decades. Many people with RP do not become legally blind until their 40s or 50s and retain some sight all their life. Others go completely blind from RP, in some cases as early as childhood. Progression of RP is different in each case.

RP is a group of inherited disorders in which abnormalities of the photoreceptors (rods and cones) or the retinal pigment epithelium (RPE) of the retina lead to progressive visual loss. Affected individuals first experience defective dark adaptation or nyctalopia (night blindness), followed by constriction of the peripheral visual field and, eventually, loss of central vision late in the course of the disease.

That's what I have. My oldest sis, my mother, my Gpa and I all share it. It sucks. It's a ticking time bomb waiting to happen. The day (or night) that I will no longer be able to drive. Tonight was an eye opener.

My neice was chosen to be in the Honor Choir. Program started at 7:00. I needed to get there earlier cause I didn't want to drive at night to somewhere I've never been. I hate that most of all. If I had to choose the greatest fear of mine, it would be "driving to a new place." Let alone driving to a new place in the dark with the rain. That's a double catastraphe. My poor sis had to get me threre with her directions and needless to say I got upset. Not only could I not find the fucking place I had my mom and the girl with me. I kept yelling out...do you see any people? do you see any street signs ...do you see anything remotely looking like a high school?!! I finally found the place and turned left onto the road, though I couldn't tell you if I had turned into a freakin' parkiing lot or an actual road by then.
We arrived in an hour. The drive should've only taken 20 minutes.
I was exhausted. Mentally, physically, spiritually...you name it, I was there.
I knew tensions were high amongst our little group, cause when we sat down, no one spoke, which in our family was odd, cause we always talked. I felt bad that I had caused this. While looking up the RP definition, no where did I find that RP affected the nervous system or mood changing hormone. Fuck...it's all me then.
I'm glad we went though. Niece put on a good show. I see why they were the Honor Choir. While she was waiting to get off the stage, me and the girl kept waving really big and embarassing her. Her friend next to her said she had a weird family. There's that word again...weird.
After her performance was the high school group and I kind of phased out of that one, cause all I could think of was getting back into my stupid car and making the drive home (and par for the course, with an empty tank).
Bro in law drove in front of us and to tell you the truth, I couldn't tell if I was on the left or right side of the road. All I concentrated on was the tire tracks he made in the rain. I followed those all the way home.
After we dropped off Gma and the girl went home with sis, I drove home and sat in the driveway. My fucking head hurt. My collarbone hurt (don't ask me why), my arms were all tensed up. EXHAUSTED.
Tonight was the first time I could really really say that I was worried.
Sorry sis if I upset you.
I love you.



At 12:10 AM , Blogger Mel Chickk said...

I was only upset cause I thought you were mad at me, which I think you were. Sucks to be us, huh? I love you too.

At 2:58 PM , Blogger RWB said...

I had never heard of Retinitis pigmentosa before and I'm sorry to learn that you and your family are hampered by this condition...I wish you the best and be careful if you find yourself driving at night!

At 11:14 AM , Blogger Tai said...

My goodness, that's terrible.
I hope that as time goes by the medical establishment finds ways of treating it.


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