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- This topic has 42 replies, 13 voices, and was last updated 13 years ago by MarinaFournier.
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November 1, 2011 at 6:37 am #12895'mariamoody1985' wrote on '22:
1. I'm sometimes too nice for my own good and let people walk all over me
My sister was like that, before her stroke–but eventually she'd have had enough and exploded. Since her stroke, she doesn't get in that situation.
Quote:2. I eventually came out the closet 2 years ago, to which none of my friends or family seemed surprised, maybe it's pretty obvious. since doing it though, I've never been happier.Great to hear! I gather no-one in your family or friends had any problem with that?
Quote:3. I always wanted to be invisibe when I was younger and seem to have got my wish because now that I am registered disabled with unstable MS, nobody seems to listen to me (except my awesome friends!)For the conference in mid-February six weeks after I'd had surgery to remove a bone spur on my right heel, I was lent a friend's scooter, which she hasn't had to use since about 2002. She warned me I'd be invisible. I thought she was exaggerating, but she was right–I go past friends who never looked my way, I'd pass a long line of folks going the other way, none of them looking at me. It was very odd. Of course, other wheeled folks and I saw each other. When it came to visiting the vendors' room, no way was I going to brave that mess of a crowded room in the scooter, so I used my cane, and was grateful beyond grateful to sit down again. I did see a lot of folk wearing “air cast” boots like the one on my right foot, and we'd exchange stories about why we had them–organ recital!
Quote:5. I love my new girlfriend and am quite thankful to my ex for leaving me because I would never have found out what it feels like to be in love properly and not just be the easy option for someone!!I remember you were pretty broken up about that. I'm glad there's a happy ending!
November 1, 2011 at 10:06 am #12896'MarinaFournier' wrote on '01:Great to hear! I gather no-one in your family or friends had any problem with that?
All of my friends and family have been great since I came out! None of them liked my ex though. Get embarrassed now when they tell me the amount of personal stuff she would tell them when I wasn't in the room! She was, in hindsight, a very weird messed up girl but at the time I thought I was happy! Just goes to show love is blind! Although I don't actually think I ever really loved her but was too soft to stand up for myself and tell her to leave! I'm getting there with the standing up for myself thing though. Everyone that's met my new girlfriend, Lillias, love her! My best mates have all told me they like her and she's fab so that's a better start than the last time round! Lol. Definite happy ending!!! Now to get on with my happily ever after! 😀
Oh and the invisibility thing is very weird! I have never been disrespectful to anyone in my life, whether they sitting in a wheelchair or walking, and it annoys me now that other people are really rude to disabled people!! Just because our bodies might not be as mobile or able as other people's doesn't mean we deserve to be ignored! I volunteer at a Boccia team and the people there all have disabilities of varying degrees from autism to cerebal palsy (not sure if that how you spell it). One guy can't talk but he is amazing! He drives, lives with his partner and has been to 3 paralympics in his life! He uses a sheet with words and phrases written on it to communicate and he's got wicked sense of humour! A real inspiration but most people will never know because they are too ignorant to even take the time to try and talk to him, they see his illness before him!
November 1, 2011 at 11:01 am #12897'MarinaFournier' wrote on '01:Our entire ATS Belly dance troupe loves purple.
When the rather attractive Pharmacist at the local druggist/chemist knew my name, I began to worry. Alas, his red head went somewhere else rather soon after.
They are in purple?? Damn, that's just epic!!
As for pharmacy, all the staff know me there…”Hello Mr May, prescription??” makes me look like a hypochondriac!
'mariamoody1985' wrote on '01:All of my friends and family have been great since I came out! None of them liked my ex though. Get embarrassed now when they tell me the amount of personal stuff she would tell them when I wasn't in the room! She was, in hindsight, a very weird messed up girl but at the time I thought I was happy! Just goes to show love is blind! Although I don't actually think I ever really loved her but was too soft to stand up for myself and tell her to leave! I'm getting there with the standing up for myself thing though. Everyone that's met my new girlfriend, Lillias, love her! My best mates have all told me they like her and she's fab so that's a better start than the last time round! Lol. Definite happy ending!!! Now to get on with my happily ever after! 😀
Oh and the invisibility thing is very weird! I have never been disrespectful to anyone in my life, whether they sitting in a wheelchair or walking, and it annoys me now that other people are really rude to disabled people!! Just because our bodies might not be as mobile or able as other people's doesn't mean we deserve to be ignored! I volunteer at a Boccia team and the people there all have disabilities of varying degrees from autism to cerebal palsy (not sure if that how you spell it). One guy can't talk but he is amazing! He drives, lives with his partner and has been to 3 paralympics in his life! He uses a sheet with words and phrases written on it to communicate and he's got wicked sense of humour! A real inspiration but most people will never know because they are too ignorant to even take the time to try and talk to him, they see his illness before him!
It is a real shame that people see the disability, and it can be even worse if the disability is hidden…not just things like epilepsy (which people sometimes think you are makin up or playing on get sympathy…which I know some people would do that, but it's not my style) or problems with back shoulder knees. I look like a perfectly fit individual, but on a bus I cannot stand for long periods of time….yet everyone looks at me as if I'm a piece of crud because I won't give up my seat when there is someone elderly…I will if it comes to the crunch…but at a proce for me, usually suffering with my back and my knees for a few days. The worst part is most of the people who treat me that way are fine themselves, so why don't they give up thier seat??
Sorry, I'll get off my soapbox now…
November 5, 2011 at 3:35 am #12898'mariamoody1985' wrote on '01:All of my friends and family have been great since I came out! None of them liked my ex though. Get embarrassed now when they tell me the amount of personal stuff she would tell them when I wasn't in the room!
A lot of times, we're afraid of vehement denial or anger from the person (e.g., my sister) to whom we're giving this kind of bad news–or we're hoping something will change (an old friend who was seeing a known philanderer).
Quote:Although I don't actually think I ever really loved her but was too soft to stand up for myself and tell her to leave!I accepted my first proposal because
-I had such a low self-image I didn't think, at 18, that anyone else would ever ask me. Goddess dropped me a question, and then She used songs about jealous lovers until I got the message and called it off.
-I felt guilty for not loving him, and felt I was obliged to say yes because he claimed to love me. My sister told me later how many other women he'd been seen with, and that he tried to hit her up, too.
As it turns out, I began seeing too much of my sperm donor in him (so did the sperm donor), and too much of my mother in me, and I knew how that turned out. He was easily made jealous (even when he orchestrated someone else getting an arm around me, from behind, while he was in front), and told me I was not to associate with any guy at college because “all men are studs, all of the time, including me”. That last should have warned me, if nothing else did. I began to chafe under his attempts to control me, the song was running in my head all the time, there was the reminder of my parents' debacle of a marriage with my sperm donor's continual abuse, and the Goddess's question in my brain…and I called things off. That night he made the rounds of friends and family, plastered, spoke of suicide, and made at least one showy attempt at it.
Oddly enough, I had no problems sticking to my guns, as I could see him pulling that nonsense anytime I did something he didn't like. I've never regretted it. Oh, yes, and I told him there was a corollary to his statement about men: that all women are whores, all the time, and that includes me. For some reason, that didn't sit well with him–can't imagine why!
Quote:I'm getting there with the standing up for myself thing though. Everyone that's met my new girlfriend, Lillias, love her! My best mates have all told me they like her and she's fab so that's a better start than the last time round! Lol. Definite happy ending!!! Now to get on with my happily ever after! 😀Please do!
Quote:Oh and the invisibility thing is very weird! I have never been disrespectful to anyone in my life, whether they sitting in a wheelchair or walking, and it annoys me now that other people are really rude to disabled people!! Just because our bodies might not be as mobile or able as other people's doesn't mean we deserve to be ignored!Exactly!
Quote:I volunteer at a Boccia teamwhat's a Boccia team? Might be a UK term with which I'm unacquainted: must correct that lapse in my UK vocabulary.
Quote:A real inspiration but most people will never know because they are too ignorant to even take the time to try and talk to him, they see his illness before him!Ain't that the truth!
November 5, 2011 at 4:11 am #12899'yamerias' wrote on '01:They are in purple?? Damn, that's just epic!!
There's a song called Start Wearing Purple that struck a chord with us, and for at least 6 months we ended our routines with it. You can find it on YouTube–but beware, the video is atrocious, and the singer has a heavy Balkan-states accent.
If you visit either http://inannaraqs.com/performances.htm or http://inannaraqs.com/Gallery.htm you can see us in purple, in elemental colors, and in older garb. I'm the most rounded and oldest (in the photos where Rowan could still dance with us, before her musculo-skeletal problems caused her too much pain for dancing–she's 16 days older than I am) one, mostly in purple or teal, but the earliest gigs had me in borrowed attire in colors which I shouldn't wear (yellow not saturated enough, and other wimpy colors near my face in badly wrapped turbans), and I got stuck with the yellow elemental skirt, for which there was no matching choli, as the others wore. The near-copper colors were not coppery enough, and I hope we never have to wear them again, unless I can have a saffron-yellow choli made.
In the video of the BellyDance MommyStars (a riff on the BellyDanceSuperStars shows), I am off, off, off. I had a Costume Malfunction, and was too distracted, dammit. I got better! The young man is my son, the young girl is Stacy's daughter. Sophia, Petra's daughter, two years younger than Monica, was too shy to join the routine.
Petra's the Lead Instigator, and she and Stacy/Chiya often do duets, and dance apart from the rest of the troupe at Burner/Playa/Burning Man-linked events. Sometimes I feel left out. Since we have two additional members of our troupe, we need to get them in photos in the bios page.
November 5, 2011 at 4:55 am #12900'yamerias' wrote on '01:They are in purple?? Damn, that's just epic!!
I'm going to try to attach a professional photo of me wearing purple and nothing but–I'd have it as my profile shot, but too many pixels/MBs, I guess, and you couldn't see anything useful in a 1″ x 1″ of it, anyways. I have no idea how large it will display here.
[attachment=30:Anitrainpurpledancing.jpg]
November 5, 2011 at 5:02 am #12901'yamerias' wrote on '01:They are in purple?? Damn, that's just epic!!
I'm going to try to attach a professional photo of me wearing purple and nothing but–I'd have it as my profile shot, but too many pixels/MBs, I guess, and you couldn't see anything useful in a 1″ x 1″ of it, anyways. I have no idea how large it will display here.
[attachment=30:Anitrainpurpledancing.jpg]
and the answer is: too damn small to be of use. The text reads “I dance to feel the music playing through me–Anitra”. The project was “I dance…”, by Gladys White (thenakedartisan.com), which you might visit, and my dance name is Anitra. 10 points for anyone who can identify the reference without going to Google or Wikipedia.
November 5, 2011 at 11:15 am #12902'yamerias' wrote on '01:It is a real shame that people see the disability, and it can be even worse if the disability is hidden…not just things like epilepsy (which people sometimes think you are makin up or playing on get sympathy…which I know some people would do that, but it's not my style) or problems with back shoulder knees. I look like a perfectly fit individual, but on a bus I cannot stand for long periods of time….yet everyone looks at me as if I'm a piece of crud because I won't give up my seat when there is someone elderly…I will if it comes to the crunch…but at a proce for me, usually suffering with my back and my knees for a few days. The worst part is most of the people who treat me that way are fine themselves, so why don't they give up thier seat??
Sorry, I'll get off my soapbox now…
I totally agree with you! Just because it's an invisible disability doesn't mean it's not there!! People on buses really annoy me! I've got a car through the Motability charity in the UK and I am so grateful for it because I no longer need to rely on buses and have to put up with people's looks when I sit in a elderly or disabled seat!! Stay on your soapbox 🙂 xxx
November 5, 2011 at 11:24 am #12903'MarinaFournier' wrote on '05:I accepted my first proposal because
-I had such a low self-image I didn't think, at 18, that anyone else would ever ask me. Goddess dropped me a question, and then She used songs about jealous lovers until I got the message and called it off.
-I felt guilty for not loving him, and felt I was obliged to say yes because he claimed to love me. My sister told me later how many other women he'd been seen with, and that he tried to hit her up, too.
what's a Boccia team? Might be a UK term with which I'm unacquainted: must correct that lapse in my UK vocabulary.
That's pretty much why I said yes to my ex. She has MS too so it kind of made life a bit easier because she understood what I was going through, well I thought she did but she had NO idea! No matter how sore I was, she was worse. If my legs felt dodgy, hers were worse. If I was feeling down, her depression was worse. I really couldn't win! Looking back, I see it was a very destructive relationship but at the time I thought I was happy but everyone around me knew I wasn't but never said anything because I was good at hiding it! Looking at photos from the time I was with her, I can now see that I was miserable, my eyes were always dark and sunken but now I actually have smiling eyes again!! YAY!!
Boccia is a paralympic sport for disabled people. Kind of like bowls but sitting down. I had never heard of it before I went to volunteer centre and found out about the team in Dundee! I do their newsletter, I used to referee but it got too much and was in too much pain to bend down and measure etc. Here's a link that might explain it better
November 6, 2011 at 7:34 am #12904'mariamoody1985' wrote on '05:No matter how sore I was, she was worse. If my legs felt dodgy, hers were worse. If I was feeling down, her depression was worse. I really couldn't win!
I had a college roommate like that–I call it onedownsmanship. I don't like to play that game at all–I smile and nod and keep my thoughts to myself, until I can get away.
November 6, 2011 at 9:42 am #12905'MarinaFournier' wrote on '05:There's a song called Start Wearing Purple that struck a chord with us, and for at least 6 months we ended our routines with it. You can find it on YouTube–but beware, the video is atrocious, and the singer has a heavy Balkan-states accent.
If you visit either http://inannaraqs.com/performances.htm or http://inannaraqs.com/Gallery.htm you can see us in purple, in elemental colors, and in older garb. I'm the most rounded and oldest (in the photos where Rowan could still dance with us, before her musculo-skeletal problems caused her too much pain for dancing–she's 16 days older than I am) one, mostly in purple or teal, but the earliest gigs had me in borrowed attire in colors which I shouldn't wear (yellow not saturated enough, and other wimpy colors near my face in badly wrapped turbans), and I got stuck with the yellow elemental skirt, for which there was no matching choli, as the others wore. The near-copper colors were not coppery enough, and I hope we never have to wear them again, unless I can have a saffron-yellow choli made.
In the video of the BellyDance MommyStars (a riff on the BellyDanceSuperStars shows), I am off, off, off. I had a Costume Malfunction, and was too distracted, dammit. I got better! The young man is my son, the young girl is Stacy's daughter. Sophia, Petra's daughter, two years younger than Monica, was too shy to join the routine.
Petra's the Lead Instigator, and she and Stacy/Chiya often do duets, and dance apart from the rest of the troupe at Burner/Playa/Burning Man-linked events. Sometimes I feel left out. Since we have two additional members of our troupe, we need to get them in photos in the bios page.
I know the song “Start Wearing Purple”, Medusa forwarded this song to me recently (that reminds me, I'll have to ask her if she will come back here!)
I had a look at the site, and you ladies look great!!
'MarinaFournier' wrote on '05:I'm going to try to attach a professional photo of me wearing purple and nothing but–I'd have it as my profile shot, but too many pixels/MBs, I guess, and you couldn't see anything useful in a 1″ x 1″ of it, anyways. I have no idea how large it will display here.
[attachment=30:Anitrainpurpledancing.jpg]
Has anyone told you how pretty you look? That is a lovely picture 🙂
'mariamoody1985' wrote on '05:I totally agree with you! Just because it's an invisible disability doesn't mean it's not there!! People on buses really annoy me! I've got a car through the Motability charity in the UK and I am so grateful for it because I no longer need to rely on buses and have to put up with people's looks when I sit in a elderly or disabled seat!! Stay on your soapbox 🙂 xxx
I'm actually not able to drive at all due to epilepsy and blood pressure issues, otherwise I'd get a car as soon as humanly possible….what makes it worse with the buses in my area and the services have been massively reduced, making it difficult for a lot of elderly and disabled to get to places.
November 7, 2011 at 12:47 am #12906Ok, here are 5 things about me:
1. I like a lot of 'guy'stuff, so other women think I'm weird.
2. I've started to make a list of how many books I read. For 2011, I'm up to 59 and counting.
3. In my early twenties I had a relationship with a guy who owned a night club called 'Soap'. We partied hard and I loved it. Sometimes I really miss those days.
4. I often dream I'm a vampire and I wouldn't mind being one in real life.
5. I'm embracing my geekiness and I'm trying to learn Klingon. Qapla'!
November 7, 2011 at 6:49 am #12907'yamerias' wrote on '06:I know the song “Start Wearing Purple”, Medusa forwarded this song to me recently (that reminds me, I'll have to ask her if she will come back here!)
I had a look at the site, and you ladies look great!!
Thanks! We do our best. We're going to try filming our last routine for the Haunted Hafla, always in October of course, but the weekend was earlier this year. We start out very sweet (Wailing Jennys' One Voice), very tribal on the second, to a tune whose name I can never remember, and our third was naughty–to Time Warp. Most of the moves were standard Tribal moves, with a few differences thrown in. We had a blast, and so did the audience.
Quote:Has anyone told you how pretty you look? That is a lovely picture 🙂Aw, shucks. If I could disguise the weight showing on my face, I'd be happier, and I want to reduce that middle area (quelle suprise!). What I may never have said is that I was belly dancing in my college years, mid-70s, in a vaguely cabaret style without the sparkly bits. I mostly did something between Modern and Jazz dancing, with my own choreography, at that time. 30 years later, I start taking a BD class in the American Tribal/Improvisational Tribal style, with music and steps unlike most of what I'd done before. Petra likes drum solos, and goes for more percussive music, while I like lyrical music and more flow-y routines.
I like the way I look in the picture of the four of us, in the hated elemental color I'm stuck with–first good photo of me in decades. There are a couple of photos from this year's Haflas that I might purchase downloads for. I was really happy with the photos Grace White has taken of me, and the troupe as well. Wish I could afford a private session with her, but $ interferes.
Quote:I'm actually not able to drive at all due to epilepsy and blood pressure issues, otherwise I'd get a car as soon as humanly possible….what makes it worse with the buses in my area and the services have been massively reduced, making it difficult for a lot of elderly and disabled to get to places.I understand the epilepsy ban on driving, but hypertension? We had a sitter in Santa Cruz who started out life with Cystic Fibrosis, then asthma, something else I forget (migraines?), then a rare & hard to dx form of epilepsy, early nerve deafness, and one thing more. She did not have an easy time, but she did her best to live as normal a life as she could.
I didn't have a car or license until I was 29, because of the cost of car, upkeep, insurance, and gas. Two of those things I could have managed before, but not all four. I lived at the far eastern edge of LA County, where service was already sparse, but got worse and worse. Getting to the Park&Ride bus was a laugh. The first job, I went down a long straight route, until my stop, which was three blocks (with a bend, so you couldn't tell if the bus was there already or not) away from the P&R bus taking me to downtown LA. The next time, a few years later, I was at the end of the local busline, and could never tell if the first bus (the one I needed) had come & gone already, meaning 30-60 minutes wait for the next. It would drop me off at the middle of three stops, and I was never sure I'd get a seat on the first bus coming past us. We were all white-collar professional types, but there was one guy who reeked of alcohol, smoke, and his jacket wasn't cleaned often enough. Mostly, for that job, I had a carpool driver, who was quite stout (I was much more slender then), great sense of humor, and was a chemical engineer. Had great fun carpooling with him.
When I did take the bus, after I had the car, and had to work overtime, past the time the P&Rs ran, I drove to a mall about 10 miles away, where the more milk-run buses started and ended. If there were women who were going my way, I gave them rides all the way home, rather than let them wait in the bad area of town, for a local bus. I prefer to carpool, and am still happy to pick up folks (not hitchhikers) and take them where they need to go. I think I've paid off the need-a-ride karma, but now it's a matter of practicality & thrift.
However, if I'd had a job in Pasadena, it would have been the pits to get there. If I had a job in Orange County–say Fullerton or Yorba Linda, I would have had to take a bus into the LA Hub, get one going to the Orange County Hub, and then one out to Fullerton, at which point it would be lunchtime or later! Move? With what money? I wasn't making that much.
I was in a discussion about using public transit to save money and stress, where I talked about the fun of trying to get from Santa Cruz to Cupertino by mass transit, explaining just how many bus transfers that would take in the 90+ minutes in commute, vs. 35 by car. Using public transit requires that you AND your employer be along the same train/bus lines.
When we moved to SCruz, my last car had died the standard older VW death by oil leaks all over the place, and we didn't at that point, have the money to get another car for me. On days when Kurt didn't drive the carpool, I had the car, and could go “over the hill” to Silly Valley. The Santa Cruz bus system is pretty good, and the drivers are very nice, as is often the scenery between downtown SCruz and where I needed to go.
One stupid thing a lot of districts do is to try to get people out of their cars, but forget that cutting back public transit service at the same time isn't furthering their goals…
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