This past weekend, I attended the NAAF Conference in Washington, DC. It was my first conference as an ‘adult.’ I have been to about 10 other conferences since 1994, but I was always in the kids’ camp. I loved every minute of that camp: I met a ton of people and was able to hang out with all of the friends I have made over the years. This year was different, though. I was able to go to meetings and talk about how having alopecia affects me. That was a rude awakening in itself. It was so nice to be reminded that “I’m not the only one.” Everyone has their own struggles that they are dealing with. It was amazing to listen to everyone’s stories and share some of my own. Many people had great advice to share, and I appreciated everyone’s input.

Although that was all fabulous, I heard the most impactful statement as I was getting ready to get in my car and go home. I was standing in front of the hotel with my luggage, waiting for the valet to bring my car around. I was caught up in trying to make sure I repacked everything and worrying about all of the traffic I was probably going to be sitting in for the next few hours. (If anyone is unfamiliar, the traffic on I-95 on a Sunday can be brutal!!!) Then an adorable little bald girl, probably about 4 or 5 years old, walked past me with her parents. I didn’t pay too much attention to them since I was so preoccupied. Right as they walked past me, I heard her say, “I’m gonna miss this place.” My heart sank. All of a sudden, I found myself standing in front of this hotel with my hands full crying uncontrollably. I still am not sure why. A part of me was thinking that she must have had an awesome weekend at the camp and didn’t want to go home, like many children who were at a camp with their friends. On the other hand, I was so upset. Although I’m sure she was not feeling like this, I thought that it is so sad that she is leaving a place where everyone else looked like her to go back home, where she is probably the only girl without hair. It broke my heart into a million pieces.

I can honestly say that I felt the exact same way. I’m going to miss that place, too! It’s amazing there! I can walk around without a wig (which I normally do anyway) and not have people stare at me because I am different. They know that I have alopecia and that’s it. I don’t have to deal with people assuming that I’m sick, and I don’t have to explain my situation to everyone I meet.
I guess the point of this story is that it’s so amazing how I tried to talk to people my own age all weekend to get some empathy, when all I had to do was listen to her five simple words. “I’m gonna miss this place.” It’s amazing how kids can sometimes say exactly what you’re feeling.

Views: 1376

Comment by Alliegator on July 24, 2012 at 10:50am

This brought tears to my eyes! Great stories. It breaks my heart when things like that happen. I wanted to go to the conference when it was in Cali, but I was getting laid off from my job so I couldn't afford it. I'm going to make all the effort to go in 2013!

Comment by Kim Karacz Caudill on July 24, 2012 at 11:01am

Yes, next year is St. Louis, Missouri and in 2014 it will be in San Antonio, TX!

Comment by Tony on July 24, 2012 at 12:16pm

Great post. Very inspiring. Thank you for sharing it with us.

Comment by Kimberly on July 24, 2012 at 1:10pm

touching post! I've been to 2 conferences and let me tell you even though I had alopecia for many years prior to going, it really helped me more than I could ever tell anyone. It helped me gain strength to be more open, it was so inspiring to see so many dealing/coping with the same thing as me...it is so worth going.

Comment by Mark S. Hansen on July 24, 2012 at 1:23pm

I live in Milwaukee WI. I have been out for work for about 3 yrs So I cannot afford to fly anywhere else. I am 56. There has never been a conference in Milwaukee WI., that I know of. Why? Don't know. When there is, I will gladly attend. I have had Alopecia Totalis for over 40 yrs. Mark Hansen

Comment by Patricia Greenlee on July 24, 2012 at 7:04pm

Loved this post,Iunderstand exactly how that little girl felt, ive worn a weave or a wig everysince i began to loose my hair so no one but those closest to me, actually know I am bald. Although I am a 66 yr old women I to would love to get married again, but fear haveing to tell the person about my condition. I will say a prayer for that percious little one, that shs up strong and secure in herself, knowing that God loves her with all his heart, no matter what others try to tell her.

Comment by Kelci on July 25, 2012 at 2:04pm

FABOZZI!!!! I love you! I'm so happy I got to see you and spend time with you this weekend. This post pretty much sums up the conference perfectly. It's always weird to go back to being the only bald kid in the room and the conference is so comforting in that. Sometimes those 4 days get me through the year. After missing it for a couple of years I forgot how much the weekend lifts your spirit. Thanks for sharing! LOVE YOU!

Comment by Alliegator on July 25, 2012 at 5:34pm

Are you serious Kim!! That is the best news for us Texans. 2014 SA NAAF Conference... Marking it on my calendar. San Antonio is a wonderful town. That will be a lot of fun. I will have to be at that one for sure.

Comment by Ashley on July 27, 2012 at 6:17am
Aww that made me happy and sad at the same time! I cried because I thought that little girl could be my little girl someday since she could inherit this gene :( I want to go to a conference now. This post is what convinced me to join this site. Are there ever any conferences in Las Vegas?
Comment by Cheryl, Co-founder on July 27, 2012 at 2:05pm

Alex, I met you at a conference when you were probably about her age! And now look at you, I can only hope and pray that she experiences the same self-acceptance that many of you that I met/worked with at the NAAF kids camp. It is funny that she says, she is going to "miss this place", because we all realize it is not a place, but the people. I remember my first conference over 20 years ago (I have been to 20 of them myself). It was the most amazing feeling. You get in the elevator, go to the pool, go to the mall or a restaurant around the hotel and all you saw was others with alopecia. A few days without having to worry about your alopeia spots, wig tape, a wig that looks "wiggy", or are others staring at me because I am not wearing my wig... especially when "me" becomes "us". I did so many of my "first" in the comfort of a NAAF conference. From the first time removing my hairpiece at a dance, to going out with out one to eventually leaving it in the room or at home for the weekend. A lot of great memories and great friends. I missed the conference this year, but I look forward to seeing you all at a conference again soon. Hope to see you in St. Louis!

Comment

You need to be a member of Alopecia World to add comments!

Join Alopecia World

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service