Wednesday, November 16, 2011

Tiny pinpoints of light

So things have been a whirlwind at Grits & Gravy HQ in the last couple of weeks. Phew, y'all!

First, my favorite day of the whole year was November 5. Dirty, flirty thirty! I'm thirty, and I can kick, stretch and Kick! No perceptible differences than 29, but as far as I can tell time is a crafty bitch. Like one day I looked in the mirror and I looked like an adult. I noticed my face fully meshed at about age 23, which is kinda late to exit the goofy not-fully cooked, doughy in the middle phase, but awkward beggars can't be choosers.

Then I caught a cold, right after my birthday: suckity suck. I just laid about for days with achey bones and labored breathing. My best guess is that I had five pounds of snot in my head. Gross. I am a lousy sick person; I just want to lay on bed and watch crappy teevee. No stoicism, just whining.

The real kicker of the last two weeks is (suspicions confirmed) I'm going blind. On Monday I went to see a retinal specialist after a recommendation from my opthamologist. I have retintitis pigmentosa(RP), the same condition that left my father legally blind. So, my rods and cones are dying: boo. RP is incurable, and there is no treatment, yet. Dr. Patel said there is encouraging research toward a treatment. Maybe five years.

I'm so lucky! I've told my closest friends, and they are the best. I've had volunteers to tweeze my eyebrows, match my clothes for me, apply makeup and drive me around. Honestly, not having to drive because I can't sounds pretty good to me; I hate driving. My Alicia in Boston is reading books on eye disease and vision loss; she's educating me about my eyes. Her hubs, T-Rex was researching treatments being pursued in Cuba and Japan. I've had more than one offer for retreat at a girlfriend's home. How did I get so lucky?

For now, I'm gonna try and not be a mope. Truthfully, my outlook after the diagnosis is much better than before with unsubstantiated suspicions. I don't want to waste what sighted time I have left feeling sorry for myself. So......

Let's make a list of all the things I need to SEE:

1. Grand Canyon: I've heard it's "fucking majestic," (sayeth Christina).

2. Paris

3. Real mountains, up close


  1. I will drive you anywhere AND I'll put on good music. That's how much I love you- I'll turn off NPR while we drive.

    Also, I second Christina. The Grand Canyon will blow your mind.

  2. By what definition of good music?

  3. I'm very, very good at going to Paris, Ashley. I can do that. And we'll take you to see some mountains in New Hampshire when you come North. I don't know if they qualify as real, but they're large-ish.

    I love you.

  4. I'm pretty sure she means something that comes in the form of an album but to everyone but her and her jam band lovin' husband it's just one loooong song. Let this Burlage girl drive you anywhere and we can listen to whatever you want! I'm used to it because my sister automatically changed the radio/cd to whatever she wanted IN MY OWN CAR until very recently.

  5. Microbrew tour of the Northeast coming up- except now I'm the designated driver! That shows my love and adoration more than the soundtrack in my car, clearly.

    Maybe I should have said I'll put on music you pick. Clearly not everyone here fully appreciates the intricacies and dynamics of a 20 minute jam. By the way, I am so hijacking your radio when you come home next week, little sis.

  6. How long of a road trip can you handle? I've done one that would meet #s 1 and 3 and that can be done in a little over two weeks. Ain't gonna's two weeks of driving, and I do love listening to the AM radio out in the Big Empty to find out what crazies are up to these days. (I'm willing to negotiate that last part).

    Grand Canyon-Sequoia-Yosemite-Tahoe-Eastern Sierras-Owens Valley-Zion

    When it comes vistas, there is no finer patch of Earth on this planet than the Sierras. Even writing these few little words about them gets me a little misty. I miss them so very much. It's been four years since I last saw them and I've sworn to myself that a fifth year will not pass without me looking up at Mount Whitney or in the overwhelmed yet happy daze that sets in when I see Half Dome and El Capitan in Yosemite.

  7. An idea to ponder: Group trip.

    Likely too difficult to do, but worth thinking about for a bit.

  8. We still have to see the "Bean" and about a million other sites in the Chi. Hopefully we can try again when the temp is not below zero degrees!

  9. If you ever want to see a field of Kansas sunflowers, I will take you there. It's real purdy.

  10. Hey, Ashley, sorry to hear about this. It's hard, but I think you will be just fine. I have a visual impairment, too, so if you want to talk it over I'm here. I can point you toward a lot of resources and support, too.