Author Topic: Dialog in the Dark - wow!  (Read 4260 times)

cindyj

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Dialog in the Dark - wow!
« on: May 18, 2010, 02:04:00 pm »
Did the Dialog in the Dark "tour" here in Atlanta today.  What an experience!  It's a 45 minute tour/walk through complete, I mean complete, darkness.  You are given a cane and a tour guide (who is blind) and off you go.  I wish everyone could experience this.  We all felt so vulnerable and helpless.  The tour simulates going through a park, a grocery store, riding in a boat, crossing a busy street, looking for a doctor's office, buying a soda in a cafe, etc.  It was incredible - I really had a difficult time with it as we were supposed to use our sense of hearing to follow the guide.  Well, you know how well that went with no ability to determine the direction of his voice ???  You keep waiting for your eyes to adjust, but they never do.  He asked how we felt at the end and everyone's initial comment was - "exhausted"  - and it was absolutely exhausting.

I have a new appreciation for all that visually impaired people can do independently.  I hope to remember this experience every time I even think about the relatively minor inconvenience of being SSD. 

Atlanta is apparently the only place in the US that has this exhibit, but if you ever get the chance to go through it, I highly recommend it to all!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Jim Scott

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Re: Dialog in the Dark - wow!
« Reply #1 on: May 18, 2010, 02:21:36 pm »
Cindy ~

I may never get to visit this exhibit so thanks for describing the experience so effectively.  Simulating being blind for 45 minutes while attempting to navigate what most of do without much thought certainly gives one a better perspective on what 'handicapped' really means to some.  Can we say: "count your blessings"?   I think so.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

CHD63

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Re: Dialog in the Dark - wow!
« Reply #2 on: May 18, 2010, 04:02:44 pm »
Cindy .....

This sounds like a wonderful opportunity for fully functioning people to experience the world of the visually impaired.  It gave me an incredibly uneasy feeling to even think about doing it ...... since I have no functioning vestibular nerves, I am totally dependent upon my vision and sensory-neuro responses to stay upright when walking.  In that environment I would be reduced to only one system to stay upright ..... I would have very little way to determine if I was upright or not, cane or no cane.  I am very thankful for good vision!!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Soundy

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Re: Dialog in the Dark - wow!
« Reply #3 on: May 18, 2010, 08:21:57 pm »
I lean to the left in the dark and would find 45 minutes exhausting too ... but it would be interesting ... my eyesight is not good but I need my eyes to stay relatively upright ... who sponsors this ??? ... I am not far (4 hours or so) from Atlanta and kids are trying to talk husband into going to Six Flags ... may be something for me to do while he watched them get whirled around on rides ...
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Debbi

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Re: Dialog in the Dark - wow!
« Reply #4 on: May 19, 2010, 06:59:21 am »
Really an interesting and amazing experience Cindy.  Did you find that you had more problems with your balance in complete darkness?  Like Clarice, I use my sight to compensate for lack of balance, so I am having a hard time imagining what total darkness would be like.  Wow!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

4cm in Pacific Northwest

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Re: Dialog in the Dark - wow!
« Reply #5 on: May 19, 2010, 07:41:23 am »
I just e-mailed OMSI and asked if we could bring the exhibit
detailed here on a this website
http://www.dialogtickets.com/video.html
to Oregon...

Thanks for the heads up on that as it sounds like a very cool exhibit. I would not have known about it otherwise. I hope it does tour the USA at other museums etc...

How was your balance in the dark?

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

lori67

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Re: Dialog in the Dark - wow!
« Reply #6 on: May 19, 2010, 10:53:51 am »
Truly the blind leading the blind!

We did an experiment in college once where we were blindfolded and another person had to get us safely out of the building, around the city and back again.  That was very disconcerting and that was before I was deaf in one ear!  I can't imagine trying that now.   :o

I see blind people waiting for the public bus, walking through the mall, etc.  I think it's amazing.  I guess you really can do anything you put your mind to.

Definitely makes me thankful that I only have a small issue to deal with.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

cindyj

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Re: Dialog in the Dark - wow!
« Reply #7 on: May 19, 2010, 12:12:27 pm »
Yes, I definitely had a problem w/ the balance.  While I normally don't inform folks about my SSD, I did feel compelled to warn our guide that I would have no idea where he was when he said "I'm over here, follow my voice" and I let him know I might take a plunge due to the balance issues.  Was funny, there were only 3 of us on the tour - my husband's aunt, another girl named Cindy and me.  Our guide immediately nicknamed me "one-eared Cindy" and the other girl "two-eared Cindy"  - very clear :D  For the most part, I resorted to just standing still (really was petrified to move) and he would have to come to me and move me along, especially when we went up or down steps, getting into the "boat" going down ramps...while I failed miserably to walk around the spaces, once he placed me in the grocery store, I was quite good at identifying the items - was so proud to recognize the Ramen Noodles ;D

Our guide was born sighted but knew as a child that he would slowly go blind starting in his teens.   He said he went through 5 weeks of training just to learn how to use the cane and 10 months of training to learn how to cross the street.  He was fascinating and had such a positive attitude - was very inspiring...I know we do what we must, but I can not imagine learning how to navigate through life without sight.  Yes, I count my blessing that I just have a bit of difficulty hearing...the glass is always half full, right!

Soundy, let me know if you head over to GA, I'll meet you at Chik-fil-a or something!  The exhibit of Bodies is right next door to this one - it's very good as well.  Pretty amazing, actually.

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Doc

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Re: Dialog in the Dark - wow!
« Reply #8 on: May 19, 2010, 02:02:15 pm »
"Funny," I do some of my best falling down in the dark...making my way to and from the bathroom in the middle of the night. I'm like the rest of you being SSD and all. I've had 20+ years of practice but its still next to impossible to determine where voices are coming from. I've learned a few good work arounds for the problem, like making sure I always sit with my good ear toward a room full of people or at a crowded dinner table. In the Dark, now that's a totally different story; I would have definite issues in that environment...already do.  I'm going to make a point of taking the Tour myself the next time I'm downtown; I live in Atlanta too.

Thanks for sharing Cindy!

Take Care!
  ;)
Doc
« Last Edit: May 21, 2010, 07:42:32 am by Doc B »
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

cindyj

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Re: Dialog in the Dark - wow!
« Reply #9 on: May 21, 2010, 06:43:46 am »
Yes, Doc, you should try to get down there.  It's been extended til Summer of 2011.  Perhaps we could plan to have our next Support Group meeting there ;) 

I've been trying to simulate at home how dark it was in there...I can't seem to get in a dark enough place, even with eyes closed and covered...so strange...

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

CHD63

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Re: Dialog in the Dark - wow!
« Reply #10 on: May 21, 2010, 07:35:04 am »
I've heard it said that you do not know what dark is until you have been in a coal mine with no lights on!  Not planning on going into one any time soon!   :o ::)

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Doc

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Re: Dialog in the Dark - wow!
« Reply #11 on: May 21, 2010, 07:41:55 am »
Yes, Doc, you should try to get down there.  It's been extended til Summer of 2011.  Perhaps we could plan to have our next Support Group meeting there ;) 

I've been trying to simulate at home how dark it was in there...I can't seem to get in a dark enough place, even with eyes closed and covered...so strange...

Cindy

That's a great idea Cindy...I'll help with the arrangments if you'd like! Let me know.

Take Care!
  ;)
Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

Soundy

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Re: Dialog in the Dark - wow!
« Reply #12 on: May 24, 2010, 07:29:59 pm »
I've heard it said that you do not know what dark is until you have been in a coal mine with no lights on!  Not planning on going into one any time soon!   :o ::)

Clarice

or a cave with no light ...guide turned off all light at back of caves and it was darker than dark

went through Cathedral Caverns with 3rd graders about a year out from surgery and it was interesting ...not the caves that I have been through several time but the experience of the first time post surgery ... going in in dim light was a challenge ... the guide kept checking on me and a friend that stayed by me at all times asking if we were OK and we were giving kinda of smarty pants answers ... I was not going to be treated different due to the trouble I was having and didn't tell him what was up... by the time we hiked in and were coming out I was exhausted and lagging behind ... but they had told us as long as we stayed on trail we couldn't get lost so I was not worried ...just hold rail and go... the guide came back and asked if I was OK and I told him about surgery and that I was extremely  tired as in I could lay down for a nap and not mind the damp floor ' tired  , the echo was playing heck with my balance (echo location is for bats not people) and the dark tossed my balance even more ...he offered to have a golf cart or jeep come get me but I toughed it out with him at my side shining extra light in front of me talking about brain surgery , deafness and the dark ...


I stumble around the house in the dark and work like a bump and go toy car with little problem... outside in the dark on uneven ground is scary but getting more do-able....
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery