Posted by: June in Toronto ®
02/16/2003, 19:24:35
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I can really sympathise with you and those lights, Claire. I had a problem a couple of years ago in our church - for the very first time there were flashing Christmas tree lights which caused me no end of pain. I sat at the back of the church but could not get away from them (dark glasses don'thelp in this kind of situation)! After Christmas was over I asked the Minister if I could go on the decorating committee the next year and explained to him about the problem with flashing lights (I'd given him beb pamphlets and explained as best I could a couple of year's previously). His reply was "well I should put a strobe light on the pulpit"! You could knocked me over with a feather:-) Anyway, as I've explained before, basically he is a nice guy but does run off at the mouth a bit and I've put so much `training' into him that I hate to give up on him (rather like a husband as another poster once put it!). We have candelight services at Christmas time (sometimes for the carol service) and I just can't attend them at all. We have to deal with the lights and the comments I'm afraid. Best wishesP.S. Please also see my reply to "New Member dsal" today on Lights June in Toronto
--modified by June in Toronto at Sun, Feb 16, 2003, 19:44:21
Modified by at Sun, Feb 16, 2003, 19:44:21
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Posted by: ClaireW ®
02/17/2003, 13:50:58
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Thanks for your reply June...do you manage to survive church every week?..this week I just came home and did a Bible study at home with my sons. They were happy to do that!
Today caught me looking at wide brimmed hats in a thrift shop.....
I'm not a hat person..and they are so expensive..but then there was a display in this thrift shop...I may succumb and get one!
Claire
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Posted by: ClaireW ®
02/19/2003, 13:28:24
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Church has agreed to switch half the lights off on Sunday mornings!
Hopefully, with sunglasses and a brimmed hat, I'll be able to manage now!
Claire
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Posted by: Rita Molnar ®
02/20/2003, 15:37:38
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A very sweet (and frugal) Pastor who was at our church several years ago, would always turn half the lights off during masses--it was his way of saving a few dollars for the Parish. I, of course, really appreciated that. But he had to stop doing it, though, when a number of the "biddies" got together and complained to him that they couldn't see to read their prayers and sing the hymns. Seems we can't win, huh? Rita in New Jersey...playing in the snow with dark glasses on.
--modified by Rita Molnar at Thu, Feb 20, 2003, 15:42:25
Modified by at Thu, Feb 20, 2003, 15:42:26
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Posted by: irene sieger ®
02/20/2003, 19:28:25
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CLAIRE
HI THIS IS IRENE JUST CURIOUS ABOUT WHEATHER BEB IS KIND OF RELATED TO THE PARKINSON DISEASE . I TEND TO FORGET THINGS AT TIMES BUT I THINK ITS BECAUSE I GET TIRED WITH THIS DISORDER AND WISH THERE WAS A CURE FOR US SOON. LET ME KNOW OR IF ANYBODY OUT THERE KNOWS IF IT IS. WOULD LIKE TO KNOW. CLAIRE I MYSELF SOMETIMES GO TO CHURCH AND THE LIGHTS BOTHER MY EYES SO MUCH. THAT AT TIMES I JUST CLOSE MY EYES AND WISH THAT THERE IS NOBODDY LOOKING AT ME THINKING SHE SLEEPING IN CHURCH. IT IS VERY UGLY FEELING WHEN THEY STARE AT YOU . I CAN'T LOOK AT ANYBODY DIRECTLY AT THERE FACE ANYMORE BECAUSE THATS WHEN MY EYES START TO ACT UP THE MOST. I DON'T HAVE A DROOPY EYE ANYMORE I HAVE GOOD DAYS AND BLESS THEM EVERYDAY THAT I HAVE A GREAT DAY. BUT I WISH THEY COULD FIND A CURE REAL SOON TO GIVE US A BREAK ON HOW UGLY THIS DISORDER IS FOR US WITH BEB. I FEEL I'M NOT READY TO TAKE A EARLY RETIREMENT BUT IF I HAVE TO I GUESS I WILL I FEEL THAT I HAD OTHER PLANS FOR THE FUTURE AND NOW THIS. I PRAY EVERYDAY THAT GOD WILL GRANT US A CURE. PLEASE LET ME KNOW ABOUT THIS QUESTION OF ANYBODY OUT THERE KNOWS LET ME KNOW.
GOD BLESS YOU
IRENE
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Posted by: Jackie Dewey ®
02/17/2003, 14:24:15
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I wasn't going to post today, just read, but this struck a cord with me. When my BEB is 'acting up' at church I just sit with my eyes closed. I can 'focus' on what is being said better when I am not struggling to see what is going on. I'm not sure how many actually understand but I just do what makes me comfortable. Yesterday, my husband nudged me and told me to wake up. I whispered to him that of all people he should know that I wasn't sleeping. Right now the flourescents in our sanctuary are a little filtered because there has been construction going on and the shades are coated with a fine dust. We also have a lot of windows so on bright sunny mornings it is difficult. I relate to inconsiderate remarks. I find that I tend to withdraw from people who consistently are making these type of remarks. My pastor has made a few inconsiderate remarks about my eyes being closed but the remarks that were the most offensive were about our son. Jerod has been struggling with schizo-affective disorder, the depressive type, for a few years. Last year at this time we were trying to get him admitted to a residential treatment center. He was there for 3 weeks. After being home for 6 weeks following his stay he was finally admitted to a day treatment program 60 miles from home. When I tried to talk to our pastor about Jerod's condition of being depressed when we first discovered the problem, his remark was that Jerod was a smart kid and that we shouldn't talk about the depression. He also made the statement that "we could send him to the funny farm' when I expressing anxiety about Jerod's being released from the residential treatment center. I've said all this just to relate to how people in general whether it be 'professionals' or any other types can really make some hurtful comments. I think I can accept casual remarks from people who have no idea rather than from 'professionals' including drs. In my BEB situation my regular md tries to be understanding and his nurse is very considerate. She always turns the lights off in the examine room. Then the dr. usually walks in and wants to know why the lights are off. When I remind him, its okay with him. Jackie
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Posted by: ClaireW ®
02/17/2003, 15:01:22
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I relate too Jackie, to the remarks about your son..my 16 year old has Fragile X syndrome...learning disability and autistic-like behaviour. He looks 100% a regular handsome lad, so it's so hard for people to recognise that he has real difficulties interacting, and just "getting on with life". I also find people don't know how to act around him..they don't realise they only need to be normal!...Chris is just a "guy" after all.
I remember once a doc offering to turn off the lights! it was so lovely to hear her ask "would you like me to switch the lights off!" I wanted to hug her!
Claire
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Posted by: June in Toronto ®
02/17/2003, 16:16:26
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Yes there are those inconsiderate boors in every walk of life, Claire and Jackie. We may be able to handle it for ourself but when it comes to our loved ones, our family, its awful, and fisti cuff time.I don't attend church every week, Claire - especially in the summr as our old, stone church doesn't have air conditioning and I suffer terribly. I also sit where the sunlight doesn't get to me and I close my eyes, especially during the sermon (behind dark glasses)! I know The Lord understands my predicaments and if human's don't - well too darn bad! I'm a Gemini and definitely a twin - sometimes I can `tell it like it is' (nicely of course) and sometimes I crumble or walk away. When it came to the "strobe light" remark from my minister I told him off. When it came to another 'mouthing off' by him I went home and, after much thought, wrote him a letter telling him off. He phoned me over 30 times a few day's later when I was out, saying how sorry he was and how great that I told him what the problem was. Apparently others had simply left the congregation and never returned. Its all in a life time ladies. Best foot forward. June in Toronto
--modified by June in Toronto at Mon, Feb 17, 2003, 16:20:07
Modified by at Mon, Feb 17, 2003, 16:20:07
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Posted by: Ann Doyle ®
02/17/2003, 17:00:21
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Mercury lights that are sometimes in churches are just as bad as flourescent lignts.. . I miss the fellowship by not going to church. I have joined a bible study class and that helps.
My choiches are limited since I need one fairly close to home and of course one that believes in the same things that I do.
When I am in church, I wear my dark ski sun glasses and close my eyes. The glasses are so dark that I don't think anyone can tell and yes, I sit in the back.
I can't believe some of the rude remarks made about your children.That must really hurt. I am so sorry you have to put up with that. That is just plain cruel. My mind is thinking of smart aleck things to say--Like--Well, with talk like that, no one will mistake you for being a Christian ( or Moslem or Buddist or whatever you are). Or --How strange, My son always has such nice things to say about you. I'm sorry but that just made me so angry I just wanted to get it out of my system. Ann Doyle
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Posted by: Delaine Inman ®
02/17/2003, 19:03:14
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Some times people need to hear the truth about what they say and how it feels. It can be done with love face to face or by a letter. I send letters many times (rewritten many times until I go from angry to a spirit of love and kindness). We are meant to be teachers sometimes and help others to grow by saying how their words or actions felt to us. I usually get a reply of appreciation and an apology for saying what I say. We all stick our foot in our mouths sometimes and sometimes don't realize it unless we are told. If it is done correctly we learn from it and grow.
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Posted by: Rita Molnar ®
02/18/2003, 23:35:29
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Hi Delaine...I can tell that you really like people. And...your words are full of wisdom. I think that MANY people who make cruel remarks really don't really intend them to be cruel. Sometimes people are making attempts at humor to lighten a subject...sometimes their mouths move faster than their brains, and later they regret what they said...some people just don't know any better. No matter what, I'm sure your approach gets the point across better than any retaliatory remark could ever. I like your thinking. I'm going to remember your words and try and to temper my own reactions to any such future remarks aimed my way. Thanks, Delaine. However, regarding anyone who purposely says nasty stuff meant to hurt ....may a million fleas nest in their armpits.....) Rita in New Jersey
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Posted by: Sally - in - Idaho ®
02/19/2003, 20:48:35
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Hi Jackie,My problem is that when I close my eyes to shut out the light and pain, I sometimes eventually end up asleep!! I am also very hard of hearing and do not have hearing aids, so without being able to see and do lip reading as I did before BEB, the situation worsens. Sally in North Idaho
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Posted by: Sally - in - Idaho ®
02/19/2003, 20:42:20
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Hi Claire,Boy! Can I ever empathize with you on church lights! Our small sanctu- ary was remodeled and the dark walls painted white, and the sloping ceiling painted white with sparkles in it, and the BRIGHTEST fluorescent lights I've ever seen (other than at the local tribal long house) are in ample supply across the ceiling. It is like blazing light in there. Misery. I manage to stay for the whole service when I do get brave and go, but it is quite painful and my eyes are closed or hidden all the time. I have worn dark glasses and visors pulled down, but the light seems to seep in through my skin. I tell the pastor to let me know if he ever forgets to pay the electricity bill and I'll come to church if it's dark in there! Sally in North Idaho
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Posted by: MaryNY ®
02/19/2003, 21:03:14
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Sally - I always fall asleep in church. My poor husband is always elbowing me! The thing is, I close my eyes to just rest them, or moisten them, and I doze off! Very embarrassing!
I really got a kick out of you saying something about the flourescent lights in the long house! We have a strong history of Native Americans where I live, learning about the longhouses, etc., and I never even thought that they might have those lights in them now! Not to be nosy (well, maybe) but where and why do you live on a reservation? Mary
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Posted by: Alan Phair ®
02/20/2003, 13:32:21
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I have the same problem but at least you don't snore...Rather embarrassing..Alan
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Posted by: Sally - in - Idaho ®
02/22/2003, 00:39:37
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Hi Mary,I live in Idaho, on the Coeur d'Alene Indian Reservation. It's about 30 miles southeast of Spokane, WA. Why do I live here? Good question! Actually, I was born here. No Indian blood, though. I am married to a Washington farmer. Guess I just stayed where God planted me, although I have lived a few other places for short times. Sally in Idaho
--modified by Sally - in - Idaho at Sat, Feb 22, 2003, 00:41:16
Modified by at Sat, Feb 22, 2003, 00:41:16
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Posted by: joyce whitt/NC ®
02/20/2003, 10:07:01
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We have two services on Sunday morning and I go to the 8:30 one and stay for Sunday School. The Sanctuary does not have overhead lights but we have lights on each side of the wall. I usually can tolerate them - but I make sure sure that I am not sitting under them because that would make my eyes close. On Wednesday night we have the sanctuary dark with just lights on the front platform and a few on the sides so usually I have no problem on Wednesday night. One Wednesday night all the lights were on so I had to wear my sunglasses because the lights were so bright. My granddaughter, bless her heart, went to the pastor and asked him if some of the lights could be turned off because they were hurting her Granny's eyes. As it were they had to have the lights on for that night because of some special presentation.Last night I went to church for the first time with my regular glasses on and someone made a comment that they were glad my eyes were better but the sunglasses did add an air of mystery. I took that as a compliment. Joyce in NC - even tho I had surgery in January and Botox injections Feb. 14, I am still struggling to hold eyes open.
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Posted by: Kathleen Bowers ®
02/20/2003, 18:18:30
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My dear Joyce, would you believe me! I am almost settled in at Rolling Green Retirement Village, just waiting for my computer to be connected to the telephone line. Can't wait! It's been awhile, and I do need to hear from my BEB friends to know how everyone is doing.I just noticed in the Library this pm a message from you making mention of your January surgery and BoTox in February. (Noww across the hall with my neighbor (a sweetheart that she is!). And excited that I am once again posting after such a long time. Please know that you are in my prayers often.....are we still totaling 900,000 around the world? I will be back as soon as I am all set up in my place across. It's beautiful here...good neighbors and every thing is going well. More soon, I hope. Kitty in SC
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Posted by: June in Toronto ®
02/21/2003, 07:17:34
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So pleased your move went well and you are almost settled into your new home. It does sound like a beautiful place and you have good neighbours. Enjoy the comfort and safety of your new place.June in Toronto
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Posted by: Sally - in - Idaho ®
02/22/2003, 00:46:05
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Welcome back, Kathleen. So glad to hear that the move went well and that you're contented in your new home. Tell us all about it later when "the dust settles."Sally in North Idaho
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Posted by: joyce whitt/NC ®
02/21/2003, 08:34:39
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Kathleen, so glad that you posted. I have same e-mail address so when you get hooked up to that phone line PLEASE e-mail me. I sent an e-mail one time and it came back - I have had trouble seeing so I figured I just hit the wrong key. I am so glad you are settled in your new home, you have such a sweet spirit, I know everyone there loves you too. Yes I had surgery and first Botox injections - same ole story, good days and bad days but God is still in control and teaching me some good lessons. Joyce in NC who is having trouble concentrating today. I am tired of Winter and ready for SPRING.
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