NOAH Conference 2014.

This past winter I made the decision to attend the NOAH conference for the first time. I did so with intention, being fully committed no matter what. Once I make a decision very little stops me. Lodgings booked I then waited for registration to open. Of course once I could I did in fact register. For years I had stalked the NOAH website and later the Facebook page. Even though I wasn’t yet a member I felt compelled to keep an eye on what NOAH was up to, organizational speaking of course. I was accustomed to being the only me. I had a couple of friends with albinism I had cultivated in my adulthood so I did not feel alone.

Fast forward to July. As the conference quickly approached the more my excitement grew. “Im really doing this” I would tell myself. butterflies danced in my stomach, each fluttering of the wings propelling me forward. The night before I departed I could barely sleep. My family cheered me on as they were equally excited. I boarded my short flight to San Diego trying not to think to hard. Epic fail of course. My mind was full of questions. Would there be anyone there who looked like me? Would I be welcomed? Would the panel I was co moderating go well? What if I hated the conference? “Enough” I told myself. I had to believe all would work out well.

Upon arriving at the host hotel I saw small groups of people chatting, making plans for outings and just catching up with one another. My first thought was there were albino people everywhere. Oh My God!! I’m really here. i observed more closely seeing children with albinism. I was so distracted I had to be called by the concierge to check in. I was already overwhelmed emotionally. My eyes stung with happy tears, tension left my body and I reminded myself to breathe. I had come home.

I believe the biggest thing I came to see initially was the individuality within the group whole. We all have albinism and we all are uniquely ourselves. We look similar and yet our features, our characteristics are our own. When I was young I used to think that if I were in a crowd of several hundred people who looked like me I could blend in. I could be invisible. By Thursday evening I found myself in a ballroom with hundreds of people with albinism. Children, oh my there were so many children. And, no I would always be me. I am never going to be invisible.

As I walked through the ballroom seeking a seat I took in the various shades of albinism. There were those who like me had very fair skin and white hair. There were those who were sun kissed, Meaning they had that golden skin tone. There were those who were more ruddy in complexion. And they were all me. I marveled at families who seemed so very comfortable already. I regarded children after the opening session who ran through the room playing tag. While I only knew one other person there with albinism, my best friend, I would soon make dozens more.

As the evening came to a close I knew I was not yet ready to sleep. So like many others I joined the growing congregation of folks out near the pool. The night was still warm and the darkness was a welcome to my overextended eyes. We PWA’s can be a reticent crowd. We are always in observer mode initially, assessing new situations and environments, getting the lay of the land so to speak. This is also the case for me. Approaching the pool crowd, we were immediately welcomed. “Come on over. Here, have a seat. And enjoy the beverages on the table.” All statements that caused me to breathe easier. Like all first timers I was being enfolded into the community.

Friday morning the workshops and panels began. I soaked up everything. I learned more about albinism from the research viewpoint and my head was full with all the knowledge. Between workshops I continued to meet people. I know its a cliche, however I was like a child in a candy shop. Do I go to a workshop or do I enjoy the conversation I am having with this parent who has a child with albinism? For the remainder of the weekend I would do both. If a session called to me I went. If I found myself having a conversation with someone I stayed where I was. While the sessions were interesting abd valuable, it was the personal interactions that held most precious for me . I met parents, teens and other people with albinism like myself. Conversations with my peers, mostly the ones that took place diring the evenings while socializing, were wonderful. The exchange of information around technology, scopes and other visual equipment and skincare opened my eyes to what I had been missing.

I was awestruck. This is the only way I can explain how I felt. During an outing Friday I found myself pulled by someone as our large group was divided in half. “You’re with us.” A simple statement that meant I was embraced and accepted., nearly made me cry. We were mixed ethnically and age wise. Yet we were predominantly African American. We were ourselves and we were one another. Our shared commonality of albinism was just that. We laughed. We were unruly and we had so much fun. We were professionals and students. We were oblivious to how others in restaurants or on the street perceived us. Honestly, we didn’t care because we were comfortable in our own skin.

The things that worried me before the conference were a non issue. The panel I co moderated went quite well. I arrived alone and departed with new friends. I enjoyed myself immensely, I knew I would return for the next conference.

After the noah conference I returned to my daily life. I was changed. I had experienced an amazing weekend. met tons of new people, created new friendships. For the first time I felt as though I had a community. I had a pack. A family. One morning I sat at my favorite before work cafe reflecting on the conference. My mind was still awash with so many emotions and thoughts I found it difficult to write When I was slammed to my core.

I have fought for inclusion all my life. I cajoled my mother as a young child to be allowed to play outdoors with my brother and sister. A battle was fought on my behalf for me to attend regular school. Once in school, teachers advocated for me to have all the materials I needed to fully participate in my classes. I battled to have similar freedoms as my siblings. Tenaciously I pushed my intellect knowing it was my exit from my home circumstances to a different life. When I was a young woman I demanded inclusion into the women of color, the lesbian of color community. My presence made some uncomfortable because they could not would not look beyond color. When my body told me no I declared I would still become a mother. And I did. I am a scrapper. I am willful. I know that when there is something I want I manage to somehow make it happen. So I was completely unprepared when 20 minutes before I was due at work I had an emotional meltdown. All the spiritedness, negotiation skills and bravery in the world could not buffer me from myself that morning. As I cried, huge sobs wracking my body I realized I had been alone. So very alone. Furthermore I had grown so accustomed to being the only me in my world that I hadn’t even known I was alone until I wasn’t. Here was yet another aspect of my identity now awakened requiring its place amidst the other layers of myself.

Albinism for me is an extension of who I am. In the same fashion being African American/Black and being a lesbian are also vital parts of me. Just as being a mother of a now college student and being half of the twenty four year partnership also define me in my community. I live my life in an all encompassed way. And yet albinism has once again risen the forefront. Well, thats not exactly true. Albinism, and my albinism in particular has been very present for me in the last year as I have been working on my memoir. Attending the NOAH conference brought me to attention.



Paris Travel Journal: The Eiffel Tower

Monday May 26, 2014

Yesterday I set out to visit the Eiffel Tower. My treat to myself was lunch at the Tower restaurant. I booked the reservation weeks ago, even before i booked the flight. I navigated the metro with ease arriving at the Trocadéro station. When I came up to street level there were so many people! Right, it’s Sunday and Mothers Day. After I purchased a bottle of water for fortification I walked 2 feet and caught my first glimpse of the Lady herself. No matter how many times I lay eyes upon the Tour Eiffel I catch my breath. I felt cheeks grow full as I smiled. Wow. I crossed the plaza along with many others. I looked out from above taking in the vastness before me

As I made my way down countless steps leading from the Trocadéro ever so carefully as to avoid falling I continued to take in everything around me. I could hear many languages being spoken, French, Italian, English, Spanish, Japanese and more I couldn’t identify. The day was sunny and was sunny and warm and there were families. People were happy.
The thing about tourist attractions like this is that there are always people hawking inexpensive souvenirs. Getting around these individuals was not always easy. After a couple of “non merci” I proceeded to ignore these guys. Ignoring them worked well for me. Eventually I walked by the Trocadero gardens getting ever closer to my destination. I recalled my last visit here which was four years ago with my teen daughter. That time it was Easter and for some reason there weren’t as many people. That or I forgot, which is completely possible. My daughter Jewel and I had a blast? We people watched, took in the tower from afar, each agreeing the lines were too much for us. Ok so there were lines. I knew I’d likely forgotten.

Finally I was on the grounds of the Eiffel Tower. There were lines everywhere and construction between the tower legs. With the assistance of some lovely tourists I made my way to the information booth, obtained my ticket for the lift (elevator) and headed to yet another line. This line moved quickly. We were then herded into the Lift which reminded me of Space Mountain at Disneyland. We quickly arrived at the first level whereupon I exited the lift anxious to take in the surroundings. The coolest thing was the transparent flooring. Yes I stood on it. After I made my way around the outdoors area I headed into the restaurant. I was seated at a table overlooking the Seine and facing the Trocadéro.

Lunch was picnic chic which for me consisted of salad, salmon with potatoes. And creme caramel flan
for dessert. Honestly, the food was ok nothing special. .
After experiencing some amazing food this was a bit of a letdown. However the best part of the experience was watching the face of a woman while she was being proposed to. It was very romantic.



Preparation is the Key

I am just over two weeks away from departing for Paris. The time is flying by. So I decided it would be valuable to get my seat assignment for the different flights I am on. Somehow I neglected to do so when booking the flights. My first call was to Air Canada. Initially I was put off by the wait I time, (your wait time is 24 minutes to 39 minutes) Really? Well, ok. Much to my surprise 12 minutes into being on hold I heard the lovely voice of a Canadian gentleman. Winning! Not only did he provide me with seat assignments he also made certain I would receive support with the transfer to the second leg of my journey. Did I say how much I already love Air Canada. Next I telephoned United. The customer service gal provided me with a seat assignment. While she wasn’t as overtly helpful I did get my needs met.

I am a planner. Those who know me well both value and detest this quality. Being a planner means I research, make lists, and have in this case, my trip mapped out from start to finish. This helps me immensely. And so, I continue to plan.

Reflections on Paris

The summer of 1987 I had the great fortune to turn twenty five in the City of Light. Being in Paris was the trip of a lifetime. I was in France for six weeks. I explored the city daily, frequently taking off from the tiny apartment I was staying in directly after breakfast. I visited the Louvre weekly. I fell in love with the stained glass windows of the Notre Dame Cathedral. I happened upon the Luxembourg Gardens. I walked everywhere.

I was a very shy young woman. Traveling alone taught me many valuable lessons I continue to utilize today. For example: when faced with adapting to a culture not one’s own equipped with only high school french, one just dives in. When met with a new transportation system, rather than be overwhelmed I embraced the metro. For using the metro was ultimately easy.

An avid journal keeper, I wrote more than 300 pages during that trip. In just over three weeks I will once again depart for Paris. I am retracing the path of my twenty five year old self. I will be chronicling the journey here and via Facebook.

Paris here we come


I am a woman who navigates the world from a unique perspective. You see, I am African American. I am also Albino. As a result my life has been interesting to say the least. And so I have created this blog. I invite you to walk alongside me to share my world. Our first journey has already begun.