It has been over two years since the first time I ever went outside bald. I decided to do it as a personal challenge. I needed to accept myself openly and begin to be truly comfortable in my own skin. It is easy to talk the talk but sooner or later, you have to walk the walk. I was nervous, excited and uncomfortable. I wanted to run back in the house but I managed to keep it together and push past those emotions. This moment of liberation was my way to boldly reclaim the self esteem that I had allowed Alopecia to steal from me. It was time to shift my alopecia experience from fear to fearlessness.

Today, two years later, I still have to take a few deep breaths and get my emotions in order before I go outside bald. I don’t do it every day so when I do, I have to do a mental self check and get centered so that I can handle whatever may come my way.

“Ultimately, if I believe that I am beautiful and walk in confidence, then I will exude beauty and persuade others to see the beauty in themselves.” ~ Sandra Dubose-Gibson

This music video is from the documentary film “Project Liberation- My Alopecia Experience. It documents the first time I ever went outside bald on my way to do a bald photo shoot.

Secondly, get over your thoughts of what “THEY” are thinking.

Last month, I went to perform at an outdoor African Arts Festival in a small country town in North Carolina. My daughters, a.k.a. “my entourage”, came with me. I showed up in all of my bald-ilicious glory ready to sing my song and share my story. As my daughters and I walked from the car to the event, we saw many people along the street that stared blatantly at me as we walked by. It was awkward and in all the times I have gone outside au natural, I have never been stared at like this before. They obviously had never encountered too many bald women in their part of town.

I recognized then the power that lies in looking different. To think, if I could walk down the street and have people tune into me with curious eyes, my response to them could make the difference in changing someones perception of what beauty is and create greater sensitivity for others who look different as well. I smiled graciously at them thinking that it was the perfect teachable moment for my children about the importance of self confidence. The stares did not bother me but my children were uncomfortable and growing angry that so many people were staring at their mommy that way. I comforted them by telling them what those people were thinking and saying to each other…….

“Is she some kind of celebrity?”    Maybe…..

“Is she a model?”   Could be…….

The truth is that I have no idea what “THEY” were thinking. No one will ever know how that moment resonated with each of them and I cannot worry about that.  There is no way to maintain a sense of peace or sanity if we obsess about the unknown. At some point we have to divorce ourselves from the fear of being judged by others. We can’t afford to put too much value on the opinions of complete strangers! Now, while it is human nature to want to be accepted and liked, we cannot ask anyone to do for us, what we cannot or will not do for ourselves. Bottom line, what matters most is always what we think of ourselves.

Lastly, choose to be happy in spite of your challenges and you will inspire others to do the same

Any questions the onlookers had, had been answered the moment I took the microphone and educated them about my condition. They realized then, how I embraced my difference so that I can make a difference. I then proceeded to sing a Mary J. Blige crowd favorite, “All I really want is to be happy.”

In that moment as we were rocking out together, they knew and understood that there was no real difference between me and them at all. Singing in unison we recognized that no matter what our external differences are, inside we are all the same and all each of us ever REALLY want, is to be happy!

The Alopecia Community of the Triangle was created to bring the alopecia (hair loss) community together in and around the Raleigh, North Carolina area.  A.C.T offers support, a safe environment to share and a place to be empowered. You will be given the tools you need to build your self confidence and the opportunity to build relationships with others who can personally relate to your experience.  We offer free empowerment workshops and small group sessions for each age group to meet the needs of each participant.

Whether you are struggling with Alopecia or in a place of acceptance and regained confidence, there is a purpose for you here. Together we can help each other turn what was negative into a positive. We seek out opportunities to be “change agents” in our community by participating in activities that help others while promoting Alopecia Awareness.

Mission Statement

A.C.T. is a unified body of diverse individuals impacted by Alopecia personally or through someone we love. We have joined together to provide emotional support, a  safe place for sharing and improve self confidence. Anyone living with Alopecia Areata, hair loss due to chemotherapy, illness or otherwise is welcome to join regardless of race, gender or age. We will foster authentic self esteem by participating in community activities that help others while promoting Alopecia awareness in our community.

A.C.T. Groups

General meetings will often be separated into subgroups by age range, to ensure the conversation content focuses on the needs and concerns of that specific group. This is an example of categories for potential subgroups:

1. Women 21+ up- Adult women only
2. Men 21+ up- Adult men only
3. Teen/Young Adults- Teens connect with other teens and talk about issues like dating, individuality and the challenges of being different.
4. Elementary/Middle School Age- Young children can choose to sit in a group session and talk or spend time bonding together in a supervised play date in the gym.
5. Parents of children with Alopecia- Parents can share resources, offer support and parenting advice on how to manage their emotions while meeting the needs of their child.
6. Family/loved ones- Spouses and family members have an opportunity to share their experience and learn ways to support the ones they love with Alopecia.

Meeting Agenda for Thursday, September 10, 2009

7:15-7:30 PM Arrival, sign in and refreshments

7:30- 8:30 pm General Meeting

• Introductions
• Ice Breaker
• Kids can be dismissed to go to the gym/game room (optional)
• Sharing- open session

8:30- 8:45 pm closing words of inspiration from Sandra Dubose-Gibson, President of A.C.T.

• Announcements  & Good byes
• Next meeting October 15, 2009 7:15-8:45 PM
  

Apex Community Center

53 Hunter Street

Apex, N.C. 27502-2312

The Alopecia Community of the Triangle, discovering true beauty from the inside-out!

Alopecia Awareness Month is held in September and is the month dedicated to spreading awareness of the autoimmune disease Alopecia Areata. This disease affects over 5 million people in the United States alone. Many organizations and individuals like myself  utilize this time to join together and support those that are challenged by this disease to impact and empower the Alopecia community and foster greater public sensitivity through education.

Why is Alopecia Awareness Month important?

When faced with any ailment that cause changes to your self image, I believe that the the most effective medicine is to take the focus off of yourself. Instead of having pity parties about the problem, channel that energy in the direction of a solution. If you do not fight for yourself and the causes that impact you, then who will?  Alopecia Awareness Month is the perfect time to jump start your own healing by taking an active stand and getting involved in something greater than yourself. The effort you put forth today, can make a world of a difference in the lives of many.

What can you do to support Alopecia Awareness Month?

Whether you have Alopecia, or just know someone who does, you are a perfect candidate to get in the fight. Here are some ideas of things you can do:

• If you can, donate hair to locks of love that provides hair pieces to financially disadvantaged children in the US and Canada .
• You can start, support or even join a support group in your area for people living with Alopecia.

There is always work to do but the laborers are few. This month, consider taking an action that will be a blessing to you and everyone around you.

In the spirit of Alopecia Awareness Month, I have decided to organize a group for Alopecians in my neck of the woods. If you reside in or around the Raleigh, North Carolina area and you are looking for a safe and empowering place to share with people who care, I cordially invite you to join us at the Alopecia Community of the Triangle.

Join the fun as we celebrate self empowerment at the very 1^st meeting for the……………

“Alopecia Community of the Triangle”

A.C.T. is a unified body of diverse individuals. We have joined together to offer support, provide a safe place for growth, healing and to bolster self esteem for ALL people living with Alopecia Areata, hair loss due to chemotherapy, illness or otherwise. Our goal is to transform a negative experience into a positive one by using it to impact our communities, and empower ourselves as well as others while promoting Alopecia Awareness.

RSVP Today to Sandra@MyAlopeciaExperience.com or call 919-610-5420

To attend the Kick off Celebration!

When: Thursday, September 10, 2009

Time: 7:15 PM- 8:45 PM

Where: Apex Community Center

53 Hunter Street

Apex, NC 27502-2312

Light refreshments will be served.

• Adult supervised childcare will be made available for school age children if needed.

A one day guest pass MUST be purchased for $5 at the front desk of the community center to allow your child to play in the gymnasium. Free access to the game room is also available on site.

• Please RSVP to confirm your attendance ASAP. Include the number of people you are bringing and communicate your childcare needs to allow for planning in advance.
• Call Apex Community Center at 919-249-3402 if you need driving directions.

We look forward to embarking on this new and exciting journey with YOU!

Feel free to post your RSVP here if you plan to attend the kick off celebration.

True beauty shining through!

We all know that hair loss can negatively impact your self esteem no matter who you are. Man, woman, boy, girl, black, white, rich or poor, hair matters. I contend that you never truly realize how important your hair is to you until you start to lose some. The pain of the loss is a universal feeling and it connects those who are dealing with it, which is why the NAAF Conference is so powerful and important.

“We have the power to heal each other’s pain.” – SDG

During the conference, I had the pleasure of connecting with many wonderful people from all walks of life but then something happened that I could not have expected. I looked up to find a group of African American women who were bald like me. As a first time attendee at a NAAF Conference, this was a new experience for me. I found comfort in seeing my reflection in the faces of these women.  We stood there admiring each other’s beauty and in that moment there was a spirit of peace that came over each of us. It was an indescribable feeling that brought us all to tears as we stood holding hands and hugging one another. I believe that we were releasing a deep rooted pain that we did not even realize was there. The feeling was unspoken yet understood. We stood together in the spirit of love and we celebrated our collective triumph over stereotypes and low self-esteem. Looking at one another, we understood more than ever that we were lacking nothing. Our beauty was intact and our vision was clear.

Black hair is……

As an African American woman, I believe that our relationship with hair is especially unique. Given our history from slavery until today, black women have had great challenges in finding our rightful place in what society advertises as the standard of beauty. At first we were told that our skin was too dark. We had to learn to embrace and appreciate the many shades of brown we encompass. This was a challenge in society and even within our own families. We were told that our bodies were too curvaceous and we had to learn to appreciate our hips, our lips and curves. Over the years, those attributes have become not only acceptable in mainstream media but the object of their desire. While most of the world has now awakened and recognized our natural beauty, the issue of black hair still seems to be on the table. “Good hair” or “bad hair”, black hair has been a symbol of strength, pride and yet ridicule. Our hair has a history and a legacy all it’s own that we hold dear. From afros to dread locks to NO locks, we now stand in this new bald identity. Our pride is not based just on the color of our skin, but given our challenges, it comes from our God given strength within.

The truth is:

“In the big scheme of things, it really does not matter if you are black, white or other; for EVERY color is beautiful when you are looking through the eyes of love at another.”

Say it loud, I'm bald and I'm proud!

Write in and share your moment of truth. I love and look forward to hearing from you!

President & CEO of NAAF

“I came with an open heart prepared to give and in that position, I was able to receive a heart full of love.”

To say the least, the conference was a huge success for me personally and professionally. Since this was my very first time attending a NAAF conference, I did not know what to expect. Nothing could have prepared me for the blessings that waited for me in the fabulous city of Houston, Texas.  The conference began on a Thursday and from the moment I entered the beautiful Hyatt Regency hotel, I saw some fellow Alopecians checking in and walking about getting ready for the festivities. I could feel the buzz in the air and I was so proud to be down with the crowd and participating in this wonderful display of freedom and self-acceptance.

There were many great moments that occurred throughout the weekend. Each one deserving of it’s own time and attention so I will do a series of blogs about the conference as I extract all of the wonderful lessons that I took from the experience. For today, I can report back that the weekend was as liberating for me as it was for others. I delivered my speech in  bald solidarity as I said I would. I sang my song, “I’m Beautiful”  from the bottom of my heart and it was received in the love that it was delivered. The overwhelming response was more than my 5 foot frame could contain. The requests for autographs and pictures was flattering and yet very humbling. I kept my face together and my emotions in tact for as long as I could. As soon as the night was through, I retired to my hotel room with my husband and I cried in his arms like a baby. It was one of the best days of our entire life. I did not know what to do with all of the love. There was no place else to put it, my arms were full. All I could do was cry. Tears of joy, tears of gratitude and cleansing tears to wash away my own residual pain.

My Alopecian Family

Coming together with others that share this common experience created an automatic bond. Coping with Alopecia Areata has given us a language all our own but we don’t have to say a word. We know the road to self-acceptance and can recognize a fellow traveler when we meet them. We have felt every crack in the pavement of self esteem and have learned to pick ourselves up every time we slipped and fell. To triumph to the other side of the experience is cause for celebration and at the Saturday night dance party we did exactly that. I was on the Conga line as promised and I made my way around the dance floor shaking my groove thing with every one I could!

The icing on my cake!

The biggest accomplishment for me was that I not only delivered my speech without my wig, but I traveled back home to North Carolina without it as well! This was a first for me and a step I did not come planning to take.  I was so inspired by everyone else, especially the children, that my own confidence grew as a result of this powerful weekend. Being surrounded by other Alopecians is one thing because we all look the same. We understand each other and there is no judgement. Venturing out into the world where most people do not know about Alopecia is a another level. I woke up Sunday morning ready to take on a new challenge and stand just a little bit taller, not literally unfortunately. Surprisingly, I was so comfortable in my own skin that I kept forgetting that I did not have on my wig until the wind would blow. I used to imagine that everyone would stare at me if I went outside bald and that I would feel so naked and vulnerable. In actuality, no one really paid me any attention. It was a big deal in my mind but apparently not for anyone else. Yeah Me! It was like the big monster that is really a shadow of a mouse in the corner. It’s an illusion and it is all in the way you look at things. When I did notice someone looking at me, I chose to assume that they were thinking the same positive things about me, that I was thinking about myself. I looked people right in the eye with confidence and certainty. Their thoughts have no power over me and I refuse to walk around being consumed with fear of other people’s judgement. I own my own thoughts and feelings and I choose to feel good about me. If the beauiful, fearless children at the NAAF conference can do it, then so can I. It’s the God in me and it is absolutley the God in them.

Many thanks……..

I have to thank Vicki Kalabokes and the entire NAAF Staff for inviting me to come and share my testimony and participate in what turned out to be a life changing event for me and many others. Many thanks to all of the attendees who showed me such love and support. Trusting me with your tears and your testimonies was more than I could ask for. Thank you to everyone who purchased my film and music. Please enjoy it and share that joy with others. I have to publicly thank my husband who stood by me as always and wiped my tears as he has done for 14 beautiful years. You have all been a part of one of the sweetest memories I have ever created and have confirmed for me that I am on the right path. What greater gift could I ask for?

I would love to hear your feedback on this years conference or previous years. What was your greatest NAAF conference moment?

“You gain strength, courage and confidence from every experience in which you really stop to look fear in the face.

You must do the thing you THINK you cannot do!”

On June 27, 2009, I will be the guest speaker at the 24th Annual National Alopecia Areata Foundation International Conference in Houston, Texas.

As I count down the days to this very exciting moment in my life, I reminisce on the  beginning stages of my journey with Alopecia Areata. It is hard to believe that it has already been 10 years that I have dealt with it and even spent the last 5 years as a completely hairless human with Alopecia Universalis.

How it all began….

Happy Birthday to me!

During my 25th birthday party, my first small, round, bald patch made it’s debut right behind my ear. It garnered a lot of attention at the party stealing my spotlight and creating cause for concern. Since I always wore my hair in a short precision cut, hiding it with hair was not an option. Before I knew it, I was wearing a wig and I have been ever since.

I made an appointment to see my doctor and was diagnosed with the autoimmune disease, Alopecia Areata. From that moment on, my life was changed and my journey had begun. I began to frantically search the internet for answers and found the National Alopecia Areata Foundation website. It had a wealth of information and resources. While it was very helpful, the reality that there was no cure was also very scary.

I remember seeing pictures on their website of past conferences. There were bald people all hugged up together and dancing and having fun? I thought, “who are these people and why are they smiling? None of this seems fun to me!”  I vowed with my bald patches at the time, that I would have no parts of such things.  I did not want to end up in that picture. I did not want to celebrate a series of unfortunate events. It would NEVER be me.

What I have learned thus far….

It wasn’t the happy people in the picture that made me uncomfortable, it was the fact that I could never see myself getting to a place of acceptance of my situation and still having joy. And what kind of courage must they posses that would allow them to bare it all and let the world see them just as they are? ”Who does these things?”, I thought.

Well, my Momma told me to never say never and as usual, she is so right. Who knew that there could be an upside to what started off as a devastating and painful experience?

“In the process of losing my hair, I have found my true identity. I had no idea that less could really be more.”

Sexy is as sexy does....

I went outside bald for the first time briefly when I filmed my documentary “Project Liberation- My Alopecia Experience.” I was on my way to do the bald photo shoot and quite honestly there wasn’t a lot of people outside that actually saw me. I was relieved and just proud that I got through the moment without running for cover. That was the test and I passed it. I’ve learned to take baby steps and the more that I do, the more I know I can do.

To date I choose to wear a wig because frankly I am more comfortable with it on. The skin on my scalp is blotchy so I have to wear make up all over my head to create an even tone. A salt on a wound if you ask me but the bottom line is, being bald is high maintenance for me. I find it to be so mush easier to put on a fabulous wig and keep it moving! I have made hair an accessory that I change at will depending on how I feel. But on June 27, 2009, I will stand before my Alopecian family and bare it all in bald solidarity. I am going to do the thing I thought I could not do. Boldly, Baldly, Proudly at the National Alopecia Areata Conference. Not only will I be one of “those people” dancing and smiling with my joy in tact, but I will be the ring leader leading the Conga line and posing happily for every picture. So, if your gonna be down in Texas, look me up and wish me luck.

Yee- Haw!