Alopecia World
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2011 NAAF conference, changed my life
Nerves and excitement consumed me the days leading up to finally boarding a plane from Detroit to L.A. I knew I was going to finally meet people who have Alopecia, I had no idea how amazing this was going to be... I arrived there a day and a half prior to the conference starting so I could do some sight seeing.. yes.. I am a typical tourist.. My husband and I had a blast touring the walk of fame.. sunset.. the pier.. the observatory... totally different world from Detroit. The day came to check in to the Hyatt. I was full of emotion as I was not prepared for what was going to happen, I have never really been around anyone like me, other than miss Kassie who went to my benefit. Within the first 10 minutes I was there, a little girl named Maria, ran up to me.. hugged me.. and called me family. I lost it, completely lost it, her mom asked if I was ok.. I told her I will be. I went outside to compose myself. It hit me then what this really is about. The kids. I was blown away by her strength. In awe. The first hour or two of me walking around the hotel, seeing all my lovely baldies, all I did was cry. This was crazy. It was 10 in the morning and I was soo stricken with emotion I already wanted a beer, I denied myself that and decided to mingle. It started getting easier as I noticed we were pretty much running this hotel.
That first day set the tone for the whole convention, I was among family. We didn't really have any commitments that day so, as I spotted a bald or balding head, I introduced myself. I couldn't believe how many of us there were. My whole life I thought I was alone, to see so many people like me in one place, overwhelming.. but awesome. I did end up getting a few drinks to ease my emotional nerves, I wasn't the only one. I ended up hanging out with the most amazing people I have ever met, strong, beautiful, funny.. and you know what? We barely even talked about our Alopecia. We got to know eachother. Alopecia may be what we have, but it's not who we are. We are however, family. We had an instant bond, one that cannot be broken, one that I will cherish forever.
The next morning we had an opening session. I had no idea how emotional this was going to be, I had a chance to hear other people's stories and see how strong they are, all I did was cry. To be in a banquet room surrounded by Alopecians, for the first time in my life... surreal. I had no idea how hard this was going to hit me, but I needed this. Everyone there was full of nothing but love and acceptance. I almost felt like I was the only one crying, everyone else was smiling, and this just shows their strength. Maybe that's why I teared up, happy for how strong we all are, or sad that I didn't have the same kind of support system they all had. I had my family and friends, but never knew anyone like me. After composing myself yet again, we all spread out around the hotel and I ended up at the pool. Which brings me back to the kids..
As I lay out in the sun with spf 50 on my head, I notice a group of little bald headed kids coming to swim. I again am in awe of their strength and freedom to be a kid and enjoy yourself. I had to take pictures, they were so freakin cute I wanted to eat em all, and they were happy. Again this is what this is about, yes it's good for me to be around my own kind, but to see the kids so happy when all I wanted to do was run into traffic was something words cannot describe. I was proud. I am so happy they have the National Alopecia Areata Foundation for support, as I didn't even find out about the organization until like a year ago.. and I am beyond grateful that I've found it, for it has opened the door for me to connect with everyone and share our stories of struggle and strength.
To say that I have met the most amazing people in the world is an understatement. I attended a "women and alopecia" support group, the best thing I could have done. I was in a room surrounded by the most beautiful, intelligent, strongest women there are.. I had a chance to hear everyone's story, name, age, how long they've had Alopecia.. what type of Alopecia.. whether they are comfortable or not wearing a wig or going bald out. In that session I tried to help a few who were still ashamed and not ready to accept the disease, my heart ached for I have reached the point of not caring what anyone else thought and I wanted them to be there with me.. it broke my heart to hear their pain. I was in that positiion before. There was nothing but love in that room, ages ranged from 20 to 83. Needless to say there was a big group picture and hugs at the end of the session.
The last night, us beautiful baldies were given an awesome dance party! Yes the beer in the hotel was rediculous so I bought some from the store and kept myself refilled by taking trips to my room, as did many of us.. but I was in a ballroom with at least 1000 Alopecians having the time of our lives... again.. ranging in ages from 4 to 83. I loved seeing all the little kids just shakin it having sooo much fun!! I found myself with Miss Delaware (Kayla Martell) and a beautiful little girl at the photo booth.. this girl just blew me away. She was just so strong and proud, I started crying... SHE tried to console ME!! What?? I am 34 and this girl who is all of about 8 was telling ME it's ok.... THIS IS WHAT THIS IS ABOUT!!! My heart is full and I have made so many new friends, (family) This truly was a healing process for me.. I cry but it's happy tears.. as Miss Delaware said to me... I had the time of my life.. and it changed my life.. and I will be back next year in D.C. I LOVE YOU ALL!!!!
That first day set the tone for the whole convention, I was among family. We didn't really have any commitments that day so, as I spotted a bald or balding head, I introduced myself. I couldn't believe how many of us there were. My whole life I thought I was alone, to see so many people like me in one place, overwhelming.. but awesome. I did end up getting a few drinks to ease my emotional nerves, I wasn't the only one. I ended up hanging out with the most amazing people I have ever met, strong, beautiful, funny.. and you know what? We barely even talked about our Alopecia. We got to know eachother. Alopecia may be what we have, but it's not who we are. We are however, family. We had an instant bond, one that cannot be broken, one that I will cherish forever.
The next morning we had an opening session. I had no idea how emotional this was going to be, I had a chance to hear other people's stories and see how strong they are, all I did was cry. To be in a banquet room surrounded by Alopecians, for the first time in my life... surreal. I had no idea how hard this was going to hit me, but I needed this. Everyone there was full of nothing but love and acceptance. I almost felt like I was the only one crying, everyone else was smiling, and this just shows their strength. Maybe that's why I teared up, happy for how strong we all are, or sad that I didn't have the same kind of support system they all had. I had my family and friends, but never knew anyone like me. After composing myself yet again, we all spread out around the hotel and I ended up at the pool. Which brings me back to the kids..
As I lay out in the sun with spf 50 on my head, I notice a group of little bald headed kids coming to swim. I again am in awe of their strength and freedom to be a kid and enjoy yourself. I had to take pictures, they were so freakin cute I wanted to eat em all, and they were happy. Again this is what this is about, yes it's good for me to be around my own kind, but to see the kids so happy when all I wanted to do was run into traffic was something words cannot describe. I was proud. I am so happy they have the National Alopecia Areata Foundation for support, as I didn't even find out about the organization until like a year ago.. and I am beyond grateful that I've found it, for it has opened the door for me to connect with everyone and share our stories of struggle and strength.
To say that I have met the most amazing people in the world is an understatement. I attended a "women and alopecia" support group, the best thing I could have done. I was in a room surrounded by the most beautiful, intelligent, strongest women there are.. I had a chance to hear everyone's story, name, age, how long they've had Alopecia.. what type of Alopecia.. whether they are comfortable or not wearing a wig or going bald out. In that session I tried to help a few who were still ashamed and not ready to accept the disease, my heart ached for I have reached the point of not caring what anyone else thought and I wanted them to be there with me.. it broke my heart to hear their pain. I was in that positiion before. There was nothing but love in that room, ages ranged from 20 to 83. Needless to say there was a big group picture and hugs at the end of the session.
The last night, us beautiful baldies were given an awesome dance party! Yes the beer in the hotel was rediculous so I bought some from the store and kept myself refilled by taking trips to my room, as did many of us.. but I was in a ballroom with at least 1000 Alopecians having the time of our lives... again.. ranging in ages from 4 to 83. I loved seeing all the little kids just shakin it having sooo much fun!! I found myself with Miss Delaware (Kayla Martell) and a beautiful little girl at the photo booth.. this girl just blew me away. She was just so strong and proud, I started crying... SHE tried to console ME!! What?? I am 34 and this girl who is all of about 8 was telling ME it's ok.... THIS IS WHAT THIS IS ABOUT!!! My heart is full and I have made so many new friends, (family) This truly was a healing process for me.. I cry but it's happy tears.. as Miss Delaware said to me... I had the time of my life.. and it changed my life.. and I will be back next year in D.C. I LOVE YOU ALL!!!!
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Comment by Natalie on July 1, 2011 at 1:26pm
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That is so great to hear about your experience! I have not been to a conference yet, but would love to attend one in the future. I remember my first time meeting other people with alopecia was at the Charlie's Angels meet and greet in January 2010, and it was amazing to meet other people who were just like me!! We certainly are not alone :) Thanks for sharing your story!
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Comment by Heather L on July 1, 2011 at 1:42pm
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Wow! I can feel your emotion -and reading your story made me cry too!! :) I am so very happy that you had such an amazing experience & am grateful you shared with those of us that were unable to attend!!!
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Comment by Tallgirl on July 1, 2011 at 2:19pm
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I felt that special bond when I attended my first SF support group meeting (tail-gate party and Giant's game) and met others like me, then had it more in force at the 2000 (2001?) NAAF Conference in Oakland. The innocence of the kids and the bonding of the teens to other teens were so special. Yes...so different from my (also) native Detroit! I would have loved to meet you this year, Christine: too bad I lost my job and income in March and had to bow out of the conference. Be sure to copy your story to a file and present it before next year's conference.
Back before I had a computer, I used to write to people in the newsletter NAAF puts out. One little girl from Oklahoma was 5, and sent ME a tape recording of her little southern voice telling me to be happy. Her crayon-drawn Native American with "I love you" on it was held next to my heart during a very negative Thanksgiving meal with my in-laws. That's what got me through that holiday...that encouragement from that little alopecian. I lost contact over the years, but looked her up online once and saw that she is happily married. Peace to you, Kari, whever you are!
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Comment by Bald and Fabulous AKA Terri on July 1, 2011 at 8:30pm
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Everytime I read this I get choked up. You are so frigging amazing and I will count the days til next years conference and we will meet.
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Comment by Joshua on July 2, 2011 at 12:02pm
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Hi Christine,
It is such a pleasure to be able to read your experience from the NAAF Conference, it reminded me when I attended the conference in 2007. The feeling is absolutely overwhelming, it was even more when I have kept in touch within an online support community and have known many for years before I was able to meet them for the first time in 2007! the feeling was truly amazing that I finally can give real hugs to people I've know for like 3-4 years before! In addition to that, I made more friends through the conference! Unfortunately it is too far and too expensive for me to attend the conference every year because I will have to travel half of the earth to be there, nevertheless I plan to attend the conference in the coming years again :) Thank you for sharing your stories! God bless!!!
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Comment by Diana Carter on July 2, 2011 at 12:35pm
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Chris, you are amazing! I had so much fun! I can't tell you how many times I have wished I could be back at the conference with everyone! Not to mention that great weather there in LA!!! It has really helped me alot to hear from others who have 'been there, done that' before me. I can't say how I will feel, or react to each stage of this, but to know I am not alone, and to know there are so many out there that I can call upon when I struggle with this...it is an amazing blessing! Also, I can hopefully be there for any one newly going through this as well. I have been overwhelmed with all the new friends I have on FB, and on AW now, just as a result of the conference. It blessed my heart to see all of the kids letting go, and having a blast at the dance party. Though I will never fully know what trials and tribulations they go through on a daily basis with their peers, I couldn't help but wonder. I am glad they have others (now adults) that can say to them, "Hey, I've been there...and I know how you feel!" - that is an amazing gift you have. One that did not come easily, but one that could only be attained through your own personal experiences... how amazing is that to be able to give that gift to a child/young teen that may be at their wits end?!!! Love ya Chris!
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Different part of the USA each year.
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Comment by Pamela Rosse on July 2, 2011 at 8:43pm
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Christine
Well said my Alopecian Sister, great job. For it is so true this conference was indeed life changing. I was & am so pleased & honored to have met so many extraordinary women who are strong, beautiful, confident & amazing. To look around & see so many bald heads of different ages, genders, colors & sizes was :)
I observed healing, compassion & love for one another, just the RX the doctor ordered.
I am still trying to compile to write it out. I feel so blessed to have gone & have met so many wonderful people.
I still cry as I think about & all the magic & love created there.
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Comment by JeffreySF on July 2, 2011 at 11:29pm
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Hi Chris,
I'm so glad to have met you at the Conference. I just wish it lasted longer so we had more time to bond.
There's always next year!
Hugz!
Jeffrey
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Comment by maude on July 3, 2011 at 6:05pm
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it is an amazing exsperience, meet amazing people x
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