Comment

Comment by Jana on May 1, 2012 at 12:11pm

http://globalalopeciamission.org/who-do-i-see-in-my-mirror/

Good morning everyone. I did not share the above at the time it was posted, because it was just about my own journey in that moment. But I would like to share it now, in the context of talking about what support - and community - and acceptance - and hair loss - and alopecia - all mean to me.

I will also post this link in the discussion on what we want from a support group. I would encourage an exploration of the other blogs GAM has facilitated, as there is some really great - and diverse - thought within.

Cheers all!

Comment by Jana on May 1, 2012 at 2:11am

The interview I did with Georgia Straight health reporter Gail Johnson has been held over one week. It will be in a special health supplement, out next Thursday. I talked a bit about me, a lot about alopecia, and even more about the energy that is being injected into the alopecia community via the on-line world. Or at least that is what I have Gail. Now let's see what she does with it! To educate and empower . . .

Comment by Deeann on April 30, 2012 at 11:49pm

Unfortunately, I didn't get mega pictures. My friends had their iphones and we are currently trying to compile a list. I'll get some out there soonish.

Comment by Jana on April 30, 2012 at 11:20pm

The gala Deeann! Photos? : )

Thanks so much for your words. They are very helpful for us all, particularly given your experience with NAAF. I think this is the same thing we need to consider re: CANAAF affiliaton, ie. the presence of a derm. Some may want this, others not.

I guess I like to think of what brings us together as being a diagnosis, and then we all differ from there. A challenge and a blessing!

:)

Comment by Deeann on April 30, 2012 at 11:12pm

I have a few thoughts to add, along with experience I've had with formal alopecia groups. I have attended NAAF conferences for the past 5 years, and for me - I get the most from meeting new people, hearing their stories, and offering help if they want/need it. I sit in sessions hearing the same thing over and over, but there are people in the group whose needs are met by just talking, getting together afterward for a small conversation with a few people they connect with, or with a larger group for dinner. Every group setting (not just alopecia) I've ever been in consists of people from all walks of life, with different needs, and different things that appeal to them about the group. We can't be the perfect fit for everybody, but I think asking what new people want from the group is extremely helpful to help guide conversation. Since I am on this side of the border, there are certain impromptu things I cannot participate in, but am more than happy to help with your efforts on many different levels.

My experience with NAAF alopecia groups is that they are very "clinical" and cold, and there's nothing personal about them. I've tried 2-3 here in Seattle, and have heard very similar things from friends who attend conference and live in different states. Having the derm at meetings may look like we think everybody wants/needs a cure, and in actuality- don't. That may turn people away by itself. Again, it's hard to satisfy everyone, but I'm thinking a support group is found after a number of avenues have already been explored.

I do think it's important to find out why a couple people left the group early a few months ago to see if they left because of discomfort or it wasn't what they thought...and figure out what they were looking for.

Okay - no wine involved in this post, but working on very little sleep after getting home 3:30am NY time last night, and getting up a few hours later for work.

Comment by Jana on April 30, 2012 at 10:49pm

I just posted a new discussion above, so that members can share their perspectives regarding their needs and interests. It would be great to hear from as many of us as feel comfortable sharing! Cheers all!

Comment by Jana on April 30, 2012 at 1:27am

Thanks Tanya . . .

As you are the person who started this group, I will offer you the following with the greatest of respect for what you have done, at the same time I share it with everyone else . . .

An informal social gathering with food is not a support group. People reach for support when they are vulnerable, and it requires a keen awareness of and respect for their needs. We each bring a personal perspective to the table, in terms of alopecia. But NONE of us are counsellors (well maybe some of us are, I don't know ; ). Do any of us have some other form of experience in a support context, beyond perhaps membership?

This is not about formality, it is about the right structure to allow every alopecian who approaches us the opportunity to make the choices that are right for them. It is about information. It is about options. It is about choice.

We need to get information to the people of this community - alopecians in the Lower Mainland. That is about support, awareness, and research - the core pillars of the larger community. There are fluid ways of doing as such ... We need to explore this, to truly be of benefit.

As always, I could go on and on here. But I will go back to my core point, and yes it is a strong one . . . To call ourselves a support group, we need to do more than break bread together. That is a circle of friends, and I have plenty of those . . .

Comment by Tanya on April 30, 2012 at 1:14am

Everyone, your thoughts and your needs decide what direction this group move towards. So yes, let's talk! :)

We won't lose the great support component we currently have, so please don't worry about the vibe becoming too formal.

As for the other component - raising awareness - it's something I looked to expand to as our group gets larger so that we have a handful of people who are in the awareness-raising mindset, to kick this into gear.

Alas, btflbaldgrrl proved that we don't need a group of people to raise alopecia awareness. She got the Georgia Straight interested in her personal story, and there will be an article of an interview with her coming out next Thursday!! :)

Everybody - the last thing I want is for you to stop participating because you don't like something about the group. This hasn't happened yet, but I just want to double make sure that you don't hesitate to voice out! We / I might not get it right the first time, but with everyone participating and talking, this group will get better and better ;)

xoxo
Tanya

Comment by Jana on April 29, 2012 at 10:18pm

I have posted several thoughts on this open discussion over the months since I joined . . . I am brimming with ideas . . . recently inspired by my London friend and his alopecia yoga class . . Waiting for word from the librarian at my daughter's school about how to promote purchase and use of Olivia's Rusk's book and the NAAF school video . .

But my core thoughts always float to structure, and not just because I am a bureaucrat . . . I believe there is a base structure we require in order to fully hear the needs of those who follow us already, and those that may contact us in the future.

In all honesty, I have gotten involved in the international alopecia community because I want more than comradery . . .

I could talk a lot about this, and want to hear the views of others. I am happy to engage in this discussion, and would offer my home and the next meeting for those that are interested in this dialogue, both those that have joined us before and those that are new. We all have something to offer . . . We all want something . . . Those are always my two thoughts, whether about this group or beyond . . . What do I want? Do I have something to offer?

One critical point of consideration in any discussion is our tentative affiliation with CANAAF, and the potential that if we continue down this road, we will likely require a derm present at our meetings. I wonder if in this day and age, if we could be a gateway within community . . . There is so much out there, and we can point to it all without reinventing the wheel . . . There are many options, if we have a basic sense of our collective existence . . . .

Let's TALK! : ) Enjoy that wine Connie.

Comment by Connie B on April 29, 2012 at 10:04pm

Hi All...

Just thinking about Jana's comments below and some of the posts of recent months. Since I joined this group fairly recently, I really don't have a good perspective on what we (as a group) are trying to achieve, if anything. Are we just about potluck dinners and casual conversation, or do we see a role for ourselves in building awareness about Alopecia? Do we have an interest in doing any outreach to local youth who suffer from this disease? Is there something else other than to build friendship with others that share the same disease? I haven't got a clue.

I think each one of us are in a different place along our AA journey - some are new (what I call living in the "valley of despair") and others might be well into the acceptance phase....or at lest they think they are. Some of us might have had this for many years and are still p$#@@#$ off about the lack of progress in finding a cure.

I guess what I'm mulling about in my mind is if the needs of individual members of our Vancouver Support Group have been explored....to the point that we all know why we choose to engage in this group and how each of us can make a meaningful contribution that our members value. I would really be disappointed if we lost people along the way, simply because we didn't take the time to understand what they really need.

Is anyone interested in having that conversation at an upcoming meeting? Just a few thoughts on a cloudy and lazy Sunday afternoon....but i do have a glass of wine in my hand :)

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