COULD LIGHTNING POSSIBLY STRIKE TWICE???

The answer is yes. Lightning definiately did strike twice for me regarding my alopecia diagnosis. You see, I was diagnosed with two different types of alopecia. I have Cicatricial Centrifugal Alopecia and Alopecia Totalis. What???...yeah, that was my reaction too. When diagnosed, I asked, "Wait one minute, you can have more that one type?...at the same time?" I didn't even know that there was more than one type. Well, not only is there more than one type; there are a couple of different catagories and under each catagory there are several types of alopecia.

Well, as my sister always says, "You can never do anything on the DL (the down low)." She's right. My diagnosis falls under two different catagories with two different types. Here's the deal, I have both scarring and non scarring alopecia. The Cicatricial Centrifugal Alopecia is of the scarring type while the Alopecia Totalis is of the non-scarring type. Alopecia Cicatricial (scarring) alopecia refers to a group of rare disorders which destroy the hair follicle and replace it with scar tissue, thereby causing permanent hair loss. Complete scalp hair loss is alopecia totalis (non-scarring type). Lucky Me!

I had the wonderful opportunity to meet some beautiful ladies who have alopecia over the weekend. They were all stuggling with lots of the same feelings and experiences as me. I was so inspired by each and every one of them. So not only does lightning strike twice in the same place, it can strike more than once at the same time and all over the world. It was so comforting to know that someone else out there looks and feels just like me. Like I said, "Lucky Me!".

To read more about alopecia visit http://www.crownedregal.com/links.htm

LOVING AN ALOPECIAN WOMAN

Love her with every thread of your being. Love her with every emotion that is intertwined within every thread of your makeup. Love her from the heart. Love her from your mind, your body, your soul. Love her spiritually. For not doing these things encumber the armour she will need to protect her from the unwanted forces of the universe. Although she is strong and on most days she is perfectly capable of doing this herself, she has days where she falls short in doing this. Do not allow yourself to erase her image, for many people have tried to do this. She needs you to help preserve the beautiful things she possesses internally because the images in magazines, commercials and other forms of media can sometimes be successful at breaking down those very things causing a infestation of low self esteem, anger and other negative feelings that will gradually wash away all the good things about her.

See what others won't see. See how beautiful her face looks; everything from her beautiful eyes to the sleek clean lines of her soft and regal crown...OH, and did you notice her profile? So sovereign and self assuring. Have you seen her dance? How the lines from the shape of her head flows in tune with the lines from the shape of her body when she dances? Wouldn't you just love to dance with her?...But only if you can keep up.

Her mouth and nose so poignant...everything you love about her stands out, more magnified, more intense, more....and doesn't her skin look nice?

When you kiss her, kiss and hold her head too. She'll like that. Tell her from time to time that you appreciate her courage in being unique in her style and grace. Let her know that you don't mind being with her without her hair in the open for all to see. Hold her hand in public. Show everyone that although she looks different than most, there's got to be something about her that you just can't live without. Make her admirers envious of you and all the while guessing what secrets lie beneath her exterior; you know...that thing that keeps you grounded in your relationship with her. Instead of "Honey your hair looks nice tonight." tell her, "Honey your skin is so soft and glowing tonight.".

She can hold her own amidst the sea of beauties you encounter everyday. At times she rises above them. Don't you know why that is? It's because of beauty she exudes from within. She doesn't have a frame like all the pictures on the wall in an art gallery so she has to display her art that much more.

How lucky do you feel today? Love an alopecian woman....for she is prize buried beneath all the other bevel of beauties. Why didn't you notice her before?

AS LONG AT YOU'RE OK WITH IT...

I will continue to erase the image of myself for you, as long as you're OK with it. I will continue to not show you what I look like. I will continue to show up at family functions, board meetings, school plays and holiday parties and cover my baldness.

I will continue to wear things like colorful scarves, unusual hats and wigs of different hair colors in which you sometimes deem inappropriate under different circumstances. I will continue to not get on a crowded bus, train or airplane without covering my head...that is, if you're OK with it.

I will continue to not remove my hat in the middle of eating in some greasy spoon of a diner while my head pours of sweat from the heat in the kitchen...yeah, I'll do that too, that is, as long as you're OK with it.

I will continue to not do anything that will call attention to the fact that I have no hair.

I will continue to do all these things and act as if I enjoy doing so...all this for you...that is, if this is what makes you comfortable being around me.

I care so much about what you think, meanwhile erasing the very person that I am. I will continue to do this too just as long as I am not OK with it, and you are. Why?

DEAR SOMEONE,

I know what you are thinking. I know that when you walk into a room you think that everyone is staring at you. I know that when you took your shower today, you shut your eyes and thought about your hair floating down the drain. I know that when you were in the market the other day that you saw the lady in the next aisle staring at you. I know you are afraid of meeting someone that you could possibly have a relationship with. I know that you are afraid of revealing yourself to someone intimately. I know that you don't know that there is hope for you. I know that you wore your wig today, your hat yesterday and tomorrow you are thinking about going out without anything on your head. I know that when you wore your head wrap last week that you thought people could see your head even though it was completely covered. I know that you couldn't find anything in your closet you thought would look good on you, when you were getting ready to go out. I know that you are obsessed with your hair loss. I know it seems to consume your every thought. I know that you looked at the lady or man on the street and felt jealous or envious that they had hair and you didn't. I know that your family and friends are tired of hearing you talk about your hair or lack there of. I know you keep worrying about your fake hair falling off. I know you don't feel comfortable covering up your secret. I know your head feels too cold sometimes or too hot sometimes. I know that you still haven't come to grips with the fact that your hair does not define the person inside of you. I know that you wish people could stop looking at your head and look in your eyes, your mind and your heart instead. I know that you don't know how to reach out to others who look like you and feel the same feelings that you feel. I know that you feel that your family really doesn't understand your feelings about your hair. I know that you get angry when people tell you to just be thankful for what you have and to just "snap out of it" and "suck it up". I know that people keep telling you that you should be thankful that you are not suffering from something much worse. I know that you don't know enough about this disease or even know how to do the research to find out about it. I know that you wonder if people are taking you seriously at your place of work or school. I know that you feel hurt. I know that the flood gates of your tears are about to burst wide open when someone so much as makes eye contact with you. I know that you have been having private pity parties when no one is around. I know that you don't want people to feel sorry for you. I know that you think you are the only one in the world that is going through this. I know that you think that no one will ever date or marry someone who is lacking hair. I know that you just don't know that all these negative feelings you are having is perfectly normal for someone who has lost something that most people feel defines your beauty.

I know that you are wondering how I know all these things about you.

I know these things about you because I am you.

Your hair does not define all of the beauty you possess inside of you. If you don't truly believe that statement than how can you expect others to do the same?

ODE TO EL - Look Ma', No Hands!

HI MOMMY! JUST UP IN THE MIDDLE OF THE NIGHT MISSING YOU...Love, Nettie

BALD LOVE

I woke up in the middle of the night in a cold sweat because of a dream; or nightmare depending on how you view it. It was one of those metaphoric dreams. You know, like when you are dreaming about having something you wish you had and it takes the form of something else?...like wishing you had more money, only in the dream you're doing something ridiculous like drowning in a sea of purses.

Anyway, I was dreaming about having a conversation with someone who was sitting across from me. I didn't really know who the person was yet, I felt comfortable talking to this person. I couldn't make out facial features or anything. I was making some sort of gestures with my hands and realized that my long flowing hair got in the way of my movements and I felt myself getting really happy that I had my own natural hair. I continued my conversation with this mysterious person and then realized that the hair started getting in the way and began to annoy me. So I began ripping the hair off...not in a violent manner, just gently pulling out sections. I did this very nonchalantly and it was painless. I could see the hair falling to the floor and began to realize that I had made a mistake in pulling it out. Regretted having done this, I began to panic and felt my body thrashing underneath my blanket. I woke up to a cold and chilling sweat and laid there motionless and thinking, "What was that all about?". I realized that I had been dreaming in metaphors again and began to question what was taking the form of what in the dream.

Well, after not much deciphering, I realized the person I was having a conversation with was my husband, who incidentally is bald also. A recent conversation I had with my husband was about how animated I can be with my hands when I am talking to him. Also, knowing myself, I had to be really comfortable with this person for me to just nonchalantly rip my hair out in front of them. My feelings of regret were symbolic of missing my natural hair. What about the feelings of panic, thrashing under the blanket and sweating? Well, the jury is still out of the court room deliberating on that one...that could have been me having one of my "personal summer" episodes...that's menopause for you younger folks. (He,He)...

What does all this have to do with "BALD LOVE"?, you say?...it's like this, I never thought that in a million years that the guy I met back in 1977...,the one with the really huge afro,... and that girl he met, with the perfectly permed and feather cut, Farrah Facet hair...would grow bald together rather than gray together. With all the things we have been through during our long and winding union together, how special do I have it that, I have him to look across to, after going through a life altering experience such becoming an "alopecian". I lost my hair, he lost his hair, we both look so different than what we looked like in 1977, yet when we look at each other... we still see the same people. Guess that's the same thing people do when they grow old and wrinkly together.

NO THAT'S BALD LOVE!

FEELIN' GREAT IN 2008!

Each year, as the new year approaches, I begin to think of all the changes, experiences, highs and lows of the year that rapidly begins to unravel in a pace that is fast as the speed of sound. I'm usually anxious to leave behind all the things that have gone wrong along with the bad spirits they came in with! However, I am always amazed at how many blessings I had overlooked or even at times how those very blessings had disguised themselves as "bad things". I was not spared nor immune against the trials and tribulations of life in the year 2007. Becoming an "alopecian" in 2007 seemed at first to be almost like I was being cursed for something. I just didn't understand it.

I know now that it was such a wonderful blessing. From this life altering experience, emerged the start of 2008 which is already shaping up to be what I think will be an amazing year. I learned so much about myself and how people view me as a person. Not having hair does bring out the worse in people, however, most people who encountered me as bald woman were able to see past my exterior and made some wonderful assessments of my interior. They even at times reminded me of the positive things I had forgotten about myself. In addition, they were able to point out positive things about me that I never knew I had.

My beautiful husband, children and friends gave me so much support and love. Most importantly, they didn't love me any less than when I had hair. We live in a society that focuses on appearance and views hair as a symbol of health and beauty. Think about it from this perspective for a moment...in the eyes of some, I had lost my health and my beauty. When I really thought about that notion alone, it seemed so ridiculous to place that much value on hair. So my next thought was, "So how do I convince people to look at me and be convinced that I still had my health and beauty?". The answer here is two-fold. Number one, I needed to look inside for my beauty and let it flow freely and naturally; in hopes that it will emanate, permeate, or whatever, to my exterior like a really sweet and desirable smelling perfume in which people couldn't ignore. And number two, if people just didn't get it, so be it! There is no one that I need to prove what positivity and beauty exists inside my heart and mind. The people who love me and care about me like my family and friends already know this and could care less if I have hair or not. I have embraced my newfound baldness...err, eh, I mean my newfound beauty and realized that it's OK to want to remember what it was like to have hair. Either way, I am going to continue to love myself, because if I don't, how could I possibly expect others to do the same. My slogan for the new year?...FEELIN' GREAT IN 2008!
HAPPY NEW YEAR EVERYONE!!!!

MY OTHER PAST TIME

Really folks, I am not obsessed with looking at photos of myself. For those of you who don't know, I am continuing to work on my official website which has an underlying agenda...my healing process. It's the undercurrent that keeps my creative juices flowing and allows me to reach out to others who are experiencing issues with hair loss or any other life changing experiences. Hence, the photos of myself....I believe that through positive imaging and expressing my feelings through digitally enhancing my photos is what is helping me to heal and continue my journey to acceptance and self-empowerment. There's an old analogy we "IT" folks use, ("computer" folks for those who are "technologically challenged" ), "Garbage in...Garbage out"..., "Negative feelings in...Negative feelings out". This is what keeps me grounded...along with a much "Higher Power" of course.
SEE MORE IMAGES BY CROWNED REGAL BELOW

COMING CLEAN

I've been thinking about why I want to share my journey of "a day in the life of an alopecian" and realized that my journey isn't just about being an alopecian, however, it has definitely had a huge impact on my recent state of mind. It's what has sparked a huge fire within me that continues to grow into this enormous forest fire that has become much bigger than myself, who is me. I want to share my journey because I have this huge desire to help someone through my journey. And if this is my ultimate goal, I need to be honest about the stages of my journey which includes both good and bad experiences....so with that being said, I am rolling out the "red carpet", the "real deal", in hopes that my story will somehow reach someone who needs to know my story.

Let me start by re-introducing myself.

"My name is Modolly and I am living joyously as a bald woman. My alter-ego is" Crowned Regal the Alopecian." I am an intelligent, compassionate, expressive, creative and loving person. Throughout my life, I have kicked down a few mountains with ten more to go, no doubt, either way I will forge on. Recently, I underwent three very profound life altering experiences, all of which left me to explore many things inside of me that I knew had always been there and was always afraid to unveil. That fear has disappeared and those very things I had kept inside are now flowing freely and ready to share with anyone willing to listen. Those very things, good and bad have now become monumental blessings in which my arms are wide open and ready to receive in abundance! I underwent gastric bypass/open RNY surgery, I now have alopecia and have been diagnosed with major depressive disorder. I need to share my journey. I need to share my journey to let it be known that through adversities there can be an emergence of some very beautiful and wonderful things. And the most wonderful of blessings is that you can overcome those adversities and can successfully live the most extraordinary, yet wonderfully normal life. If you landed on my blog, whether it be intentional or by happenstance, I want to "Thank You".

One of my favorite quotes is: " Finish each day and be done with it. You have done what you could; some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; you shall begin it well and serenely and with too high a spirit to be encumbered with your old nonsense. "(a quote by Ralph Waldo Emerson). I found this quote hanging on a wall of an administrative assistant's office as I was being discharged from a hospital.

THE PHOTOSHOOT

I went out to do some last minute Christmas shopping. I spotted a ladies hats section with some of the most funky hats I had ever laid eyes on. Lately, I've aquired quite a collection of them. They make me feel stylish, unique and alive. As I inched closer to this gorgeous snow white leather white brimmed hat, I decided to try it on. Yet another time, I had frozen, thinking that I need to remove the hat on my head. Here I am yet another time feeling uneasy about exposing my bald head again! I thought, Damn! What is it going to take before I feel completely at ease and confident in my own "skin"...err, umm.. "scalp?". It was time to break out the heavy artillary again..."The PhotoShoot". I look at this video from time to time to remind myself of the confident and strong woman in the photos to help boost my self esteem. "Heavy Sigh"