One of the coolest experiences EVER!

[Rae1889]

So I totally have to put this out there now (cuz this site is my safe haven! and you know when something totally awesome happens you feel like you need to tell the world?)

So, me and Chad, met Chris515 and his girlfriend today! I can't tell you guys how awesome they are! *sorry chris if your reading this, that might sound a tad creepy, but oh well* That was such a great experience finally being able to TALK *verbally, not typing* It feels like a huge weight has been lifted off both mine and Chad's chest, knowing we arent alone, and having people in the same city, dealing with the same things. There is definitely a comfort there.

It was so cool being able to compare stories, what we do similar, and then just talk about the normal mundane things in life that I used to take for granted. and the things only they can understand, because its just something that Winnipeggers know.

So, if you don't know anyone with Epilepsy, (or you are a spouse/friend/parent/child of someone with epilepsy) get online, with your local seizure chapter and meet someone FACE TO FACE. It just gives whole new depth to acceptance and normalcy. *of course never meet someone alone, and always in a public place.*

granted I had that nervous knot in my stomach, hoping that he wasnt going to turn out to be some scary old man who's girl friend was really a sock puppet, but that turned out to be my paranoid thinking, cuz they both were incredibly awesome and understanding people. At first I was awkward, but thaat didnt last long at all. Even Chad spoke! *which is a rarity with new people*

Soooooo, THANKS GUYS!!!!!

[Meetz1064]

How very, very cool!!! Yeah for all of you!!

[BuckeyeFan]

That rocks!

I have had the opportunity to meet one of the members from CWE as well. Great experience.

[Rae1889]

That rocks!

I have had the opportunity to meet one of the members from CWE as well. Great experience.

WHo did you get to meet buckeye?

[joan]

Congrats! and what a nice way to spend the day*

I wish you many more good days**

joan*

[Rae1889]

I know, What a day to pick eh? the first day of epilepsy awareness month!

[BuckeyeFan]

I was able to meet TinasMom, her husband, and her granddaughter Nicole. We met at the National Epilepsy Walk in Washington DC last spring. She is a wonderful Lady and so devoted to the cause.

There are a few pictures floating around here on the site.

[Crystal11]

Before I found CWE, I was on Epilepsy.com and would go into the chat room. I met my best friend Rachel there and we all decided that we would meet up for Christmas. So we did. She stayed at our apartment or two weeks and then said she would like to look around Texas for a place to live. We decided as a group that we would move in together which we did and its been awesome experience. We deal with each others' seizures, help each other, and are starting up our lives as young adults. I have finished my B.A. and am looking for a job and Rachel currently works. My twin is still in need of one course before she graduates but it sure does help when you have bad seizure, or a bad day to speak to someone real and alive. Its even more awesome when those people you speak to, also have epilepsy and won't think of you strangly or negativly. It can be stressful at times-if one of us goes out, then we tend to worry until we know they are safe and back home- but I'm sure everyone worries some. We all don't have total seizure control so we look out for eachother a lot.

I never would have guessed to even meet someone from online in person- and definitley never live together as a group. Its really unique and one awesome story of how we all met.

Crystal

[Cint]

I've met quite a few people in person with epilepsy by doing volunteer work with my local Epilepsy Foundation chapter. So, during some of the events, I've also witnessed a few different types of seizures, too, unfortunately.

[Shelley]

I have had a chance to meet Speber and his band, and his terrific wife.
It feels great to know I am not alone, and not a freak.

[Nakamova]

I always imagine the CWE community as being the coolest. Nice to have that confirmed by encounters other than in cyberspace.

[Crystal11]

Shelly-
Speber's sister is one of my SSP (support service providers) for the deaf-blind program. She is great and has told me about Speber.
She is the one that told me to come here and I love it here. So many interesting people with great knowlege and experience.
Also great to meet new people and become friends. I believe CWE helps us all.

Take care
Crystal

[Rae1889]

I thnk tis gret taht people tyr to rech out to others in ther area in rel life, otheer than just on site.s it maekes it ffeel less elss less les abnormal

[Meetz1064]

it's time to go to bed......... ((((HUGS))))

[Dutch mom]

Hi Rae,

I'm so happy for you. Fantastic isn't it? I do live in a small country (you can travel Holland North-South in 3,5 hours by car ) so many parents of our Dutch forum support group do meet eachother live. In the last seven years I've met many other parents and their families. We do meet in hospitals, on special needs daycare centers, meet on days out with our familes, we do visit eachother and we do organize an annual family meeting day (the fifth is coming up next summer.) It's so great to talk live with e-mail friends, to feel the understanding, to meet eachothers spouces and kids. I've gained a few very good friends this way.

Have an impression on our Dutch website (I'll link to the photo albums, 'volgende'= 'next')

http://www.sos-mies.nl/fotoboekjuni.htm shows an impression of our picknick meeting 2009

http://www.sos-mies.nl/fotoboeknov.htm our family day 2008 (the guy on photo 1 is my dear husband)

http://www.sos-mies.nl/fotoboekbillieboem.htm cowboys and indians 2007
(meet my eldest son, the one with E, on photo 6, my little girl on photo 16 and my two boys and my mom on photo 21)

http://www.sos-mies.nl/fotoboekooit.htm princesses and knights in 2006 (my little princes is in the middle on photo 1)

[Shelley]

Shelley-
Speber's sister is one of my SSP (support service providers) for the deaf-blind program. She is great and has told me about Speber.
She is the one that told me to come here and I love it here. So many interesting people with great knowlege and experience.
Also great to meet new people and become friends. I believe CWE helps us all.

Take care
Crystal

Crystal
Speber and his band are playing tonight. Tell your SSP to take you so you can meet some neat people.

[Crazy Monkey]

I talk to a CWE member every day and I visit her whenever possible, we are now more like family then friends, we have both chatted to each others family members, she listens to me whinging or laughing after work and we compare seizure experiences, we have found similarities between us so we relate to each other well.

[Loudmouth]

I don't know of anyone on here who lives closer to me than you, Crazy Monkey lol. My brother goes to Uni in Norwich, but it's quite a journey from here!