New to the community: Hi. I just joined... - My MSAA Community

My MSAA Community

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jezebellydancer profile image
18 Replies

Hi.

I just joined the community today. I was diagnosed in the early 2000's after having optic neuritis twice. My neurologist thinks I had MS since at least 1995 when I had my son since I had classic post-partum MS symptoms that my OBGYN ignored. (I thought I had a stroke.)

I've been a dancer my entire life and MS and arthritis have made it impossible :( I used to be a professional bellydancer.

Currently I'm a FT admin asst and a PT editor and proofreader. I'm a nerd and play Dungeons and Dragons. I also host a game group every Sunday afternoon. It helps keep my mind sharp.

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jezebellydancer profile image
jezebellydancer
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18 Replies
CatsandCars profile image
CatsandCars

Hello and welcome. I think you'll find that this is a fun, supportive group. I'm glad you're here! 😊

mrsmike9 profile image
mrsmike9

Welcome! We are a diverse group, sharing all kinds of things in our lives. Glad you're here, but sorry you "fit" our group!

Elizt3 profile image
Elizt3

Welcome - glad you found this group! I've gotten a lot out of being part of it

lbenmaor profile image
lbenmaor

Welcome! 😀

Leslie

bxrmom profile image
bxrmom

Welcome to the group jezebellydancer , sorry for the reason. This is a great group to ask questions, brag, vent, and celebrate. Look forward to getting to know you!

jezebellydancer profile image
jezebellydancer

Thanks for the warm welcome everyone! And nerds or ex-dancers out there, be sure and say hi :)

NorasMom profile image
NorasMom in reply tojezebellydancer

Well, I can claim a cousin who took belly-dancing lessons and a son who plays D&D!

jezebellydancer profile image
jezebellydancer in reply toNorasMom

My son is a 2nd generation nerd. :) He also break dances. I tried to get him into bellydancing because male bellydancers can make great money since they are rare. I switched to tango for awhile because the close hold helped my balance issues, but now my arthritis is bad enough that I can't really dance anymore.

Tazmanian profile image
Tazmanian

Welcome to the group

Greentime profile image
Greentime

Welcome!

oudie profile image
oudie

Dear Jezebellydancer,

Thank you for joining this forum. It took me a couple days, but I finally dug out a poem I'd written about my own MS and bellydance journey, that you may or may not relate to:

Choose To Dance

They choose

And they will always Dance

Though sometimes barefoot on splintered floors

Or in stilettos behind nightclub doors

Yet still

They choose to Dance.

I watch

As a class trains hard

In a fifth-floor studio on Times Square

Glistening bodies and sweat-soaked hair

I look back on

The days before....

I yearn

And I will always Dance

Doumbek's thrum and mizmar chase

O music, draw me to another place

A place

Where I still would Dance

The veil

Soars above the moon

Muscles snake and lock, keep time

Coins shiver and cymbals chime

Really miss

The joy to make it mine

To live and breathe the Dance

I yearn

And I will almost Dance

Legs asleep, they abbreviate

Turn to stone and the passion fades

Oh, how to bring back

A whim to Dance?

Standing alone at the mirror

Awaiting a spark

Fleeting moment comes on

Flash and it's gone

****

Let music fill the room again

Urging like some wise old friend:

"Slow down and barely slide your feet

Resist the need to mark each beat

Retrain, reclaim, regain a flow

Let others speed while you go slow"

Well, it's not a path that I would choose

Refrain from steps I long to use ---

Whatever stirs can be a dance

Expressive face to hair to hands

So I choose ---

And I will always Dance

jezebellydancer profile image
jezebellydancer in reply tooudie

Tis is beautiful. Thank you so much for sharing!

GreatDanekids profile image
GreatDanekids in reply tooudie

Beautiful, descriptive, emotional and powerful imagery! Thank you 💕

oudie profile image
oudie in reply toGreatDanekids

Many thanks for your kind words, GreatDanekids.

oudie profile image
oudie

thank you, jezebellydancer! My MS timeline is pretty similar to yours, though my first unrecognized symptom was in the early 80s. As of 2020 I've had fusion surgeries on neck and left big toe joint, before learning from Dr. David Middaugh that arthritis can be often be reversed... I had stopped dancing for about 20 years, but recently started teaching a minimalist style of bellydance in my local library. Involving all kinds of workarounds to defeat my odd bag of disabilities, arthritic and MS oriented. I use my mideast drumming to alternate between dancing myself and giving students feedback. So far, it's been lots of fun.

I noticed that a couple of male bellydance teachers didn't even dance at all while they were teaching. They sat and directed their classes, at times enlisting an advanced student to demonstrate. They both employed their spacial design skills to develop choreographies without ever trying them out. I'm trying to get better at that. :)

jezebellydancer profile image
jezebellydancer in reply tooudie

I've recently gotten in touch with a bellydance buddy who is still teaching. The plan is for me to teach my "vintage" routines to her students and using her as my "body" when I need to rest. I am so happy to be able to pass on my old routines. I learned Greek/Turkish style back in the 80s, then learned a bit of the Egyptian style at Master's classes. I can stand in place and move my body, but traveling steps don't work. Plus I can't stand for long periods of time due to fatigue and arthritis. But I do what I can when I can.

carolek572 profile image
carolek572CommunityAmbassador

Welcome to the forum, jezebellydancer ! I look forward to hearing more from you! In the meantime, you can go to mymsaa.org to find more resources that are available for people with ‘ms’. Keep Smiling! :-D

oudie profile image
oudie

oh, I'm so happy to hear you've found a way to teach, too! Bellydance buddies are the best! I don't know about other parts of the U.S., but here in the NYC area, I've seen bdance's popularity fading. Less classes, workshops, teachers, performances nowadays. Live dance bands a rarity. All the more reason to pass the tradition on! Believe it or not, on Spring Break week, I got my first teenage student. She was so inquisitive about everything, and even wanted to try playing my drum.

If you dance Greek/Turkish styles, then you must be very good at Karsilama! (Did you ever see Eva Tzurnick perform?) I've studied Egyptian cabaret and folkloric, Armenian, Persian, Rom styles. One of my teachers specialized in Greek style, but I didn't focus on that. When my MS first stopped me from dancing, I studied Arabic music (oud, ney, drum, accordion). In 2010 when MS half-paralyzed my right arm, I had to stop music and learned Arabic language. Now it is fun to weave some of these strands together in one class.

Much like you, I can do stationary movements, but need to avoid travel steps. Avoid standing and too much walking. Resting 2-3 days ahead of class to be fresh enough to last the hour. I have no idea of how long the era of teaching this class will be in my life, but by now am used to living with uncertainty. Enjoying it while it's here. Hope you get to teach a long time!

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