Thursday, October 19, 2006

Thursday Thirteen #3

Thirteen Things about Living With RP aka Retinitis Pigmentosa aka Tunnel Vision

1. I've always got a garden of bruises in various stages of bloom. No inch of my skin is safe anymore--from eyes to thighs and nose to toes and lips to hips and breasts to all the rest.

2. It doesn't mix well with being absent minded.

3. It doesn't mix well with being clumsy.

4. It doesn't mix well with an anxiety disorder.

5. Any light source equivalent to less than 100 WATT unshaded bulbs might as well be candle-light.

6. Wearing 3 pair of eye-glasses while carrying a white cane invites funny looks. Which doesn't mix well with social anxiety. But on the other hand, wearing dark sunglasses gives me a free pass to stare and observe people without seeming to and that is a plus for a writer.

7. Reading font sizes of less than 12pt on or off the computer screen requires magnification. As does the fine needlework which comes in a strong third under reading and writing in my favorite pastimes list. I suffer constant eyestrain because I insist on doing these things I love way beyond the first signs of distress.

8. Walking in unfamiliar territory feels life-threatening. Running? Which used to be forth on said list? Forgedhaboudit.

9. There are an amazing number of drivers and pedestrians who do not seem to know what a white cane means.

10. Every task takes more time and forethought.

11. Teamwork is difficult and takes a willingness on the part of all members to be proactive about compensating measures. My mother and I had to forego working together in the kitchen over a decade ago as I could not seem to learn to look before I took a step and she could not seem to learn to stop talking with her hands while holding a knife.

12. Dogs and cats have a quicker learning curve than people when it comes to learning to watch out for me. Iron ducks are another story.

13. Non-verbal communication cues are nearly impossible to keep track of since I cannot see the whole face of a speaker anymore, let alone any body language below the chin. My attempts to scan for it seem to make people nervous--I assume because my lack of eye contact gives a non-verbal cue that I'm not listening. Mostly I have to watch lips since I have 50% hearing loss as well.

Links to other Thursday Thirteens!

1. Katia 2. Caylynn 3. Addie 4. Norma 5. Colleen Gleason 6. Chaotic Mom 7. K T Cat 8. Jane_of_art 9. crygibb 10. Kathy (leave your link in comments, I'll add you here!)

For those of you wanting to know more about RP, I linked the term Retinitis Pigmentosa in the title of the list to the Wikipedia article about it. There you can find more links and also a pictorial representation of a view with normal vision juxtaposed with the same view as seen by someone with advanced RP. I debated whether to answer the questions about it left in comments directly in comments or write a separate post. The latter wins because then I can controll font size and spell check. :) So watch for a more typical rambling style post about it in the near future. Now that I know there is genuine interest, it won't feel so much like whining to talk about it.

Get the Thursday Thirteen code here!

The purpose of the meme is to get to know everyone who participates a little bit better every Thursday. Visiting fellow Thirteeners is encouraged! If you participate, leave the link to your Thirteen in other's comments. It's easy, and fun! Be sure to update your Thirteen with links that are left for you, as well! I will link to everyone who participates and leaves a link to their 13 things. Trackbacks, pings, comment links accepted!

12 tell me a story:

Anonymous,  10/19/2006 2:51 AM  

I love how lighthearted you can be about your condition! :) And yes, dark glasses are definitely good for writers. *grin* I routinely stare at people without them. *lol*

And gaii! People not knowing what a white cane is for - or not caring?! Gah. Stupid people... stupid...

Have a great week! :) (My TT is up as well!)

Caylynn 10/19/2006 3:04 AM  

It's so sad that people don't know what a white cane is for, or choose to ignore it. *shakes head* I have a friend with very limited vision who is legally blind, and it's very sad how she is treated sometimes.

Sorry to hear you can't run anymore. That's one of my passions.

Thanks for sharing.

Anonymous,  10/19/2006 3:11 AM  

I am so grateful that you shared this today - I have learnt so much from the list. Thank you! Happy TT. Come on over to my space and share my TT

Norma 10/19/2006 5:41 AM  

You've taught us a lot today--not just about RP, either!

My TT is up--I'll check the rest of your blog and see what you say about books--I have a category in my links for that.

Colleen Gleason 10/19/2006 5:42 AM  

Wow. Thanks for a very informative post. It's great that your disorder(?) doesn't prevent you from reading or writing. Congrats.

Your blog looks neat. I'll be back!

My TT's up--thanks for coming by. Thirteen Books on my To Be Read Pile...which one should I tackle first?

Chaotic Mom 10/19/2006 5:47 AM  

This might be a stupid question, but I prefer people asking me questions about my boys rather than just STARING at their implants. Is it hard for you to read the computer monitor? Do you use larger type(got it, larger than 12pt), brighter screen, etc?

I've posted 13 Scenes from My Chaotic Life, today. Enjoy! ;)

K T Cat 10/19/2006 8:15 AM  

Joy, I really admire you for doing the fine needlework at all. I love the fact that you won't let your eyesight problems keep you from doing the things you want to do. That's very brave.

My TT is up.

Anonymous,  10/19/2006 8:52 AM  

Norma told me to pop over- muy husband has RP. I am sending your post to friends so they get a better idea of what RP is/means.

Carey 10/19/2006 9:07 AM  

Thanks for sharing your list. Mine is up too.

Anonymous,  10/19/2006 11:26 AM  

Let me be the first to ask, since I've only been here twice...what exactly is the condition you have?
The hearing part I can relate to, although it sounds little beside your list.
Keep plugging girl and stand tall.

Jamie 10/19/2006 5:40 PM  

It was always fun watching you and mom working in the kitchen together, I find it a lot easier to watch out for the other guy than to crash and burn. I'm surprised either of you never got serious hurt. I'm proud of you for being so open about RP.

Anonymous,  10/20/2006 6:11 AM  

Thanks for the heads up on the retinitis pigmentosa. I'm sorry I missed the link in the heading.
I love learning so I read about it today. Interestingly and synchronistically it brought to mind a book that may be of interest (maybe not but I have recently reopened it for something pertaining to my own condition and was reminded of it when visiting your blog site again today - so I am going to mention it).

In Jacob Liberman's "Light - Medicine of the Future", he has much to say about the visual field. He talks extensively about Syntonics (a holistic approach).

Let me know if you'd like a loan of this book. I'm sure we could arrange that if you are interested. My email is:

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