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Posts tagged ‘child with ichthyosis’

The Magic of Mermaids by Shelly Menzia

 

Ahhhh. Dreams…the mystical journey of slumber through a world that lives deep within.  Have you ever wondered if dreams, perhaps, not only guide us under the moonlight, but can be equally effective in guiding us in the light of day?  FIRST member Shelly Menzia believes just that. In fact, one of her most vivid  and influential dreams occurred nearly 40 years ago, when she was just eleven years old; a dream that would whisper the very secret she had looked for most of her life. We are delighted to  bring you Shelly’s story of acceptance, transformation…and yes…mermaids.

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Do you have dreams that are so real they haunt you for the rest of your life?

There is one in particular that I remember when I was about eleven years old. I was out camping with my family near the Copper River in Alaska in an old beat up camper, on an even older powder blue pickup truck. In my dream a “merman” came to the camper to take me from my family. He was not like the beautiful mermaids or mermen from the movies or books.  Although human-like in form, he had webbed feet and hands and huge “Spock-like” ears.  He was tall with various shades of dark, seaweed green skin.  Prince Charming…he was not.  He told me I had to go with him and marry him under the sea. I was terribly upset that my family did not try to stop him. It was like they had been expecting it. My family shrugged their shoulders, looked at me sadly and waved good-bye as he pulled me away. I waved back crying and begging for him to let me stay with them. He quietly but firmly pulled me along. 

 photo 3When we entered the water, I was amazed that the water felt so warm and comfortable and that I could breathe.  I had this amazing sense of freedom as we swam gracefully through the dark sea.  In the distance from up above I could see the sun shining and sparkling down towards me and I was no longer afraid of the merman.  After that I woke up but the dream has stayed with me for forty years. 

 It wasn’t until many years later I was able to analyze that dream with a friend and understood that it actually had some meaning to it. You see I was born with a rare congenital birth defect called ichthyosis (fish skin). It made growing up in our “soft skin is beautiful” society more difficult yet at the same time it shaped me into who I am.  My skin is very dry with little elasticity, it has a “scaly” like appearance. The only place and time I am truly comfortable is when I am in the water.  I spend hours in the tub and shower and put lotions on constantly so that I can feel as comfortable out of the water as I do in the water.

 I have faced some discrimination with ichthyosis, not being allowed into a public pool; when I was a kid, having people being afraid to touch me for fear it was contagious, and having my blood be refused when I tried to donate it at a blood drive at college.  These were just a few of the things that happened along the way.  I think the worst and most devastating incident however, was having my supervising teacher during my student teaching assignment ask that I not work with her anymore. She felt my skin was too “distracting” for the students to learn. I was devastated and I came very close to giving up my career in special education. I wanted to lock myself away in a room away from other people because of her prejudice and inability to understand.  Afterwards, I went home and had a good cry, (and consequently had the rest of my family crying) and went to take a long bath. (So long in fact my mother came to check on me…I think she had thought I had drowned myself or something.) I got through it though, and was placed with another woman who was a wonderful teacher and she was also very understanding.  She knew what it was like to have a skin problem because she had skin cancer.  She, along with my friends and family helped me get back on my feet emotionally and helped build up my confidence again. I ended up being much stronger for it and much less likely to place my beliefs about myself on the basis of one other person’s opinion.  Especially someone I hardly knew.

 photo (12)Even though I was stronger however, my skin was still an issue with me.  Oh, sure I could “handle” it OK and in 27 years of teaching I have never had a problem related to it.  Still, my perception of myself was fairly low as far as physical attractiveness goes.  I didn’t see myself as the person first, who happened to have ichthyosis. I was the girl with fish skin and somewhere inside of her – was me.

 Then something strange happened.  As I was talking about my skin condition to a new friend, I was joking, “Yeah, I’m part fish and part human…… Hey, I guess that makes me a mermaid!”

 In uttering that one goofy sentence, I went straight from monster girl with fish skin to a beautiful mermaid swimming and frolicking under the sea.  My perception of myself was changed radically and instantaneously from that moment on.  You have heard of “black pride,” “deaf pride,” and “gay pride,” with me it has become “mermaid pride.”  The many long baths I had to take, once tedious and boring, became trips to the sea in my imagination or I was like Daryl Hannah in the movie Splash.  Just going in to wet my “fins.” It was a magical transformation.

The Legend of Mermaids

After that I started doing some research and became fascinated with the legends of mermaids.  I learned that mermaid myths exist in almost every culture and they were thought by some to be healers or to have psychic powers.  There have been very credible people who have sworn that they have seen mermaids, sometimes right before a storm as if they were being warned of impending danger.  Many paintings show mermaids singing on top of rocks in the surf or playing with fellow sea creatures.  Most of them are beautiful romantic images.

Then I started developing my own theory about where the legends of mermaids may have come from.  What if just maybe, the legends of mermaids really did start with people who had ichthyosis?  I had to have inherited it from ancestors up to ten generations back and it had to come from both sides of the family, (recessive genes); Irish from my dad’s side and English/Dutch from my mother’s, both cultures which have mermaid myths.  Years ago people probably didn’t have lotions and baths to make them more comfortable so I imagine that everyone who had the chance would spend a lot of time in the water such as lakes, rivers, or oceans trying to stay comfortable.  Perhaps folks saw ichthyosis people in the water and along with seeing their fish like skin, the legends of mermaids were “spawned.” (Ichthyosis although rare is found in most cultures just like the legends of mermaids.)

 As I thought about it, I remembered going to an ichthyosis conference where for the first time I met other people with ichthyosis.  I was amazed as I got to know people, of the common similarities we had besides our skin. We talked about some psychic experiences most of us have had and I found out that almost every single person was musically inclined.  Many were involved in choirs.

So, of course, now I picture all OUR ancestors being the ones singing on those rocks and warning past sailors of danger.  Since then I have acquired quite the mermaid collection.  Of course, people who don’t know me have a hard time figuring out why I have all these mermaids- many which are bare chested all over the house.  (I have thought about making them little bras so the more sensitive people won’t be offended.)  My friends have been wonderful and always keep their eyes open for special mermaid “treasures” when they are traveling.  My most recent addition came from Italy.

I have had some fun with my mermaid revelation. Once in the Galapagos Islands I was on a Zodiac boat with some of the male guides from the ship.  They asked me about my skin but I didn’t think they would understand my English and I knew I wouldn’t be able to explain it in Spanish so I simply smiled at them and said very matter-of-factly, “Yo soy la sirena” (I’m a mermaid) and then I promptly dove into the water.  When I looked back at them they had their mouths hanging open as they looked back and forth between me and each other.  They couldn’t decide if I was crazy, joking, or maybe somehow telling the truth.  They looked at me strangely throughout the rest of the trip.  It was all I could do to keep from cracking up laughing every time they gave me one of those “looks.”  By the end of the trip I had been invited by the guides to sing and play with their onboard music group they had formed.  We had a blast.  It was a fun and magical trip.

It was several years ago now that I sat discussing the strange dreams I’ve had with my friend Lydia. When I told her about my merman dream she pointed out quite easily what it probably meant.  The merman WAS the ichthyosis and I WAS married to it.  I didn’t like it, my family didn’t like it, but there was nothing any of us could do about it.  It suddenly seemed so simple.

Now that I have been swimming through the “sea of life” for some time, I realize it’s OK to have ichthyosis and to be who I am. It’s not any scarier or worse than I choose to make it.  Whenever I want to, I can swim up to that sun shining and sparkling down towards me from the surface to be who ever I want to be or do what ever I want to do, because that is where the magic lives. The only thing that can ever stop me from going anywhere or doing anything is my perception of myself and all I can say about that right now is……Mermaid Power!!! 

What’s your story?  We’d love to hear it.

 


My Life as an Ichthyosis Mom

Over the years FIRST has collected and shared hundreds of “life stories,” as storytelling offers a meaningful way for members to open up and communicate their most significant, emotional, and inspirational moments.  And, equally as important, stories can heal our hearts and open our minds.  Today we’d like to share a mother’s story that began with a life-changing choice in 1986…

My Life as an “Ichthyosis Mom”  by Tracie Pretak

Things definitely did not start out easy. I was a freshman in college with huge plans and dreams for my future…but it was all crushed in a hurry when I made a life-changing choice and I was faced with an unplanned teen pregnancy. I became a single mom on June 15, 1986. I will never forget that day.

I remember going to the doctor on Friday for a check-up. It was still 3 weeks until my due date, and he said he expected me to go full-term. It was weird…but I had this strong sense that the baby was going to come early. On Saturday, our family attended my cousin’s wedding and then a graduation party. My brother Mark kept trying to get me to dance. I finally gave in when the Blues Brothers were playing, but at the end of the song, he dipped me and lost his balance. We fell to the ground and his knee hit my lower back. I was up all night with muscles spasms…and when the labor started, every labor pain was accompanied by more muscle spasms.

On Sunday morn, we headed to the hospital. I had this really strong belief that something was going to be wrong with the baby. I couldn’t explain it…I just knew. I also decided not to breast feed. I didn’t know why…just that I shouldn’t. And I knew that even though something was going to go wrong, somehow, the baby would be okay. I truly believe that this was God preparing me for what was to come.

Bailey Pretak

Bailey Pretak

The delivery went quickly, but I knew the moment I looked at my mom’s face that something was wrong…VERY wrong. Little Bailey Rae was born encased in a collodion membrane. The best way to describe it is to say she looked like a little “sausage”. There was fluid between the membrane and her skin. I didn’t even get to hold her! They brought her over in an incubator so I could reach in and touch her. Then, within 20 minutes of her birth, she was life-flighted to the nearest NICU. My doctor looked in his medical books and came in to tell me he believed she had ichthyosis. A dermatologist at the NICU called me the next day and confirmed it was lamellar ichthyosis.

I wasn’t released from the hospital until Tuesday, so she was 2 days old when I finally got to hold her! She stayed in the NICU for two weeks, until most of the membrane had peeled off.An unplanned teen pregnancy radically changes your life. Being a single parent is incredibly difficult, and having a baby born with ichthyosis is truly overwhelming. As fate would have it, I had all three! I honestly don’t know how I would have done it without the love and support of my family. My parents offered to watch her so I could finish college. Kip and Katrina helped, too.I wish I could say it was also easy, but there were parents who called the school principal and asked to have their kids moved to a different class; people who wouldn’t touch things she had touched; kids who teased her and called her “Scaly Bailey”. Those things just broke my heart.

Bailey Pretak

Bailey Pretak

As the years went on, I became more and more angry at people’s reactions and Bailey became more shy. She would hide behind me because she knew she was different. It wasn’t until I watched Bailey’s reaction the first time she saw a black person that I realized it was just a natural reaction for people to stare at something they’ve never seen before (however, this still doesn’t explain their rudeness). So we decided that every time someone stared, we would smile and wave. It has helped so much. You see…my negative reaction to the stares and rudeness was only making her more insecure. It was a turning point for both of us.

However, God has blessed her with so many amazing people to help her along the way. She was loved and accepted by her pre-school teacher, Mrs. Shauna (Shauna Miller). She met a wonderful friend in that pre-school, Julie Boults, who is still her friend today. She had the best Elementary School Principal in Mr. Bob Grumley and she was loved, accepted and challenged by her dance teacher, April Cush. Her confidence grew as she gained more and more experience performing on stage, thanks to both April and Beth Lenaway. She got a “daddy” who loved her like his own and adopted her and had a “sister by heart” in Cailtyn Pretak, who practically lived here at times. She had a pen pal, Laura Ashton, who was the first person she ever met with ichthyosis and who truly understood what she was going through. She was blessed with the best friend ever when she met her college roommate Natalie Cisternas Hann. And our church has been amazing! She credits them with being the first group of people to make her feel accepted. Her Sunday School teacher, Toot Mecca, changed her life for eternity.And there are two moments of her journey I will never forget. One, when she was crowned homecoming queen, (voted on by her classmates!), a moment we never dreamed was possible for a girl with ichthyosis. The other was during her senior year of college, when she sat in the spotlight and played piano on stage in front of an audience full of people. I couldn’t stop crying as I realized how far she had come!Bailey has grown from a shy, insecure little girl into a strong, beautiful woman who now teaches little “princesses” the meaning of true beauty.

Yes…it has been extremely difficult at times, but I can honestly say that what began as my greatest challenge in life has turned out to be my biggest blessing ever. God has given me the sweetest, most compassionate and most inspirational person I have ever known as my very own daughter. Wow! Today I am feeling SO blessed to be an “Ichthyosis Mom.” :)

Please share your story with us!