Comment

Comment by Chris Jeffer on February 19, 2012 at 10:23pm

Hi Silkhead.... Tanya and the other women are right - this is a very open and supportive group of people. The women I have met so far have been great and some see one another socially outside of the group as well. I joked to Afiya that we should all go to Hawaii or Mexico together. We laugh, we get serious, I cried at the last meeting and it all feels good when we meet and talk.

Unfortunately, I won't be able to make it to the March 18th meeting as that is the time that I study with a Chinese Doctor to get more acupuncture training. I look forward to seeing everyone and meeting some of the new people soon!

Comment by Jana on February 19, 2012 at 9:30pm

Thanks for posting what you did SilkHead. It was very brave, and I would suggest it is not just valuable for "our" group, but for those reading this public post and considering joining us. : )

Several of you have mentioned Louise Hay. My similar inspiration has been Brene Brown, most particularly in her TedTalk on the power of vulnerability, as it very much fits with my beliefs regarding strength, power, and vulnerability as part of one circle. http://www.ted.com/talks/brene_brown_on_vulnerability.html

Joining this group has resulted in feelings not dissimilar to those of SilkHead, for me. In that regard, I would offer the following, in where my thinking as gone since "meeting" all of you, in person or on-line. Again, I hope this is useful to anyone reading, and would suggest it supports the core statement Tanya has posted for this group.

Someone on AW has spoken of their "alopecia career." I like that phrase, in its power and consciousness. To characterize what has likely crossed through all of our thoughts . . . One's alopecia career is influenced by when alopecia first came into their lives - childhood, teens, adulthood. It is characterized by whether they choose to seek treatment - to try and grow hair again - or not. And one's alopecia career is influenced by how they generally live their lives, through their world view and where they are in this moment in time (as Deeann notes). There is a theory of aging that states we approach aging, the same way we approached living. I would suggest this is true for alopecia, but not unlike all elements of life, each experience has the possibility of reshaping our world view, if we let it.

When I think about this group, I think about dancing flamenco, which I have been doing for almost two years now. Flamenco is big. Powerful. It comes from the core, in how you both listen to, and express yourself. I have felt intimidated by both instructors and senior dancers, and have seen the same in my classmates. At some point I decided that rather than step back, I would step forward. I had a right to dance alongside everyone else, in how I was both better than some and worse than others. In writing about this right now, I would suggest that this choice was influenced by my alopecia career, in that I have the right to live my life - and to engage with the world - in the way that feels right JUST for me.

What I would say in support of SilkHead's comments, is that the social elements and challenges of alopecia sometimes seem to take a backseat to more clinical/medical discussions. Perhaps this relates to what I noted above, about the nature of our own unique alopecia careers.

It also seems important to note that support groups tend to be about homogeneity, hence the natural tendency toward one view or purpose. Likely we are not unique - as alopecians who gather - in our diversity. But it is likely quite important to remain conscious of our diversity, and to support each dynamic. Wig, scarf, hat, bare - each are equally valid careers. : )

Comment by Tanya on February 19, 2012 at 2:52pm

Hi SilkHead, perhaps our online convo is not an exact portrayal of our meetups, now that you pointed it out. In person and in a private setting (a members' home) we feel more comfortable talking about emotions. Trust me, we do talk about it and support each other at our meetups :)

This is your group too - every person guides the group in a direction that they wish to see the group lean towards. I'm happy to see that this group is very inspiring and very compassionate, and I think you'll find the same.

Many of us would love to meet you in person. Please come :)

Comment by Deeann on February 19, 2012 at 2:34pm

I understand your reservations about meeting up based on what you might read. From my experience, I have been super excited by the connection I've had with the gals I've met so far, and am encouraged by what I'm hearing in the posts. We are all very...different, but have one thing in common that bonds us - We're all bald. Whether we're at a place of acceptance is very personal, as you know. Some of us wear wigs, some nothing at all, and some scarfs. I believe all of us choose what's comfortable in our lives at this moment, and there is always room to change our minds if that is what we want. I don't feel it's an us vs. them situation, but one that casually gets together to offer support for where we are in our lives with alopecia and with our lives in general - whether it be our careers, romances, health choices...

I hope you will give the group a chance to get to know you on a person to person level, and that you can find time to meet up with everyone on the 18th. I have a feeling you won't be disappointed.

Comment by SilkHead on February 19, 2012 at 2:22pm

I have to be honest. When I first joined the group and AW I was excited to hear Vancouver had a support group. I guess I had expectations on finding people who have accepted themselves like me. To find emotional support. I find myself reading the posts, and everything going on with the group here. I am a bit put off and dissapointed that there is no chatter to do with emotional loss and alot to do with finding a cure.

This is absolutely not what I am looking for. I think perhaps this is my feelings, and not to do with the group because I haven't met you yet. I am also afraid because it seems like the same few people posting and making plans. I had a really hard time in high school, and cliques are not my thing.

I wonder in alopecia world if there has to be this us against them thing in terms of those who are bald and those who wear wigs.

This is me expressing my fears. It's what I do because I can no longer hold it in.

Comment by SilkHead on February 19, 2012 at 2:13pm

That weekend is fairly busy for me...I guess I'll make it if I can.

Comment by Tanya on February 19, 2012 at 2:17am

Carpool would be awesome! Thanks JLo!

Comment by cati on February 18, 2012 at 2:58pm

Hey, Jlo

Yes, it be cool if I can get a ride:)

I think we should bring something to nibble on to help our host.

Connie, shall we do a potluck?

Comment by JLo on February 18, 2012 at 2:09pm

Hello, Happy to see you all on he 18th!
Deeann, yes let's meet at my place! Cat and Tanya do you want to car pool? I can drive. Looking forward to it!
Are we bringing food for lunch?

Comment by Sandra Fournier on February 17, 2012 at 10:35am

Happy Friday everyone! I too have been to the NAAF conference. I went last year as an "attendee" and went to the "break-out" sessions. The biggest surprise for me, was how quickly everyone befriended me. Everyone I met was super friendly and welcoming. I was invited to a group dinner, not knowing anyone and felt like I was sitting amongst friends. If you have any questions I'm happy to answer them. I do think it is an event that anyone with Alopecia should experience at least once.

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