my bare legs

Writing about my old pair of socks made me remember a conversation I had with my mother over the phone a while ago... She didn't want to go with the family to a water park, because she didn't like the way people looked at her legs. She has suffered from varicose veins ever since I remember. I remember her being self-conscious about it and often times she was an object of ridicule for my dad. He would say to me, "go ask mom if we can play with her marbles"... Every time I think about it, my heart aches. I'm not sure if I ever smiled or played along with dad... I do remember, however feeling confused. After all, I too had spots all over my legs which caused me to be the object of ridicule for other kids.

Listening to mom sharing her insecurities with me made me realize that, no matter how old I am, I still feel uncomfortable, uneasy, and anxious when I expose my bare legs to the world. It scares me -- I don't want to  grow old with that feeling. I am afraid of never being able to fully enjoy simple things with my kids, such as going to a splash pad. So, over the last couple of years I have found that looking at my scarred skin from photographs and making illustrations from them has helped me feel a bit more at ease with my photodermatitis. It is as if I finally accept the fact that is not going anywhere and I learn to live with it. I am letting go a little at a time. Hopefully one day (soon) I will not feel uneasy when I hear the words "water park".

Today, as I worked on refreshing the portfolio website I also revisited an illustration from my book. It was just a few years ago that I still felt uncomfortable when looking at it. Today, I can't stop looking and thinking about the many other ways I could have improved that photo shoot... The ideas are starting to pile, so while the weather is still nice - sunny, 33 degrees, and the snow keeps melting, I'm grabbing the scarf, gloves, and sunscreen, because I'm going for a walk.

an old pair of socks

One of the most shocking memories of feeling weird and different because of the photodermatitis was when I was in third grade. My mom was picking me up from school one afternoon and I remember leaving the school holding her hand. As we walked down a crowded street, I remember feeling my old and worn-out knee socks, with little elastic grip, starting to slide down my legs. A woman approached my mom with concern and fear. She asked what was wrong with me. She questioned if I had gotten sick – chicken pox or something similar and why I was in school if that was the case. I don’t remember what exactly my mom answered, but I imagine she answered the usual: “No, it isn’t chicken pox and it isn’t contagious”. What I do remember is how I felt. I think about that day a lot and from time to time I wish I could erase it from my mind.

For the longest time I hated knee socks. You see, I grew up in a household with four siblings and my mom and dad. They could not afford new clothes for me often and I couldn't just come and ask for a new pair of socks, so whenever I did my laundry, which I did by hand, I tried very hard to not mistreat my socks. Knee socks became a big part of my life. Every night, mom would make me wash my arms and face, and sometimes my legs too. She would rub whatever ‘miracle’ cream she had recently acquired on my skin and then put a long pair of socks on my arms. She believed that the socks would keep me from scratching and breaking my skin at night while I was asleep. Every morning she was disappointed when those socks were found at the end of the bed. I would feel ashamed knowing I couldn’t kept those socks on my arms, but I was most ashamed of the bloody stains that my broken skin had left behind.

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What an irony, I love knee socks now! 

I want to have a pair of knee socks for each day of the year. Each pair with a unique color and pattern, so I can laugh at the fact that Fall & Winter won't have enough days for me to wear them all. We can't choose how things affect us, but we can definitely embrace them and make the best of them possible. If we can accept everything about ourselves -- our skin, our bodies and we learn to embrace it, soon we'll be laughing about the situations we once found devastating. 

:: Snow  |  27ºF  Feels like 13ºF  |  skin is calm, but dry

a little infographic

:: Partly Cloudy  |  High of 36ºF  |  skin is calm, but extremely irritated

Back in 2012 I put together an infographic about photodermatitis. I have freshen it up to share with you today. You can print it or share it and help me spread the word. Let's bring awareness together!

my body is the canvas. the photodermatitis is my paint.

Once I understood that I could not change my condition, the idea of making something beautiful out of it came to mind -- the book was a start, but I think I still have much more to create.

I love flowers. I never realized how much I loved them and nature in general until I moved to the U.S.
Often times I think about my photodermatitis as a delicate beautiful flower... A simple reminder of how amazingly unpredictable nature can be.

I've been away for a while... Just enough to refocus on my illustrations and to experiment with photography. While I still call this a work-in-progress, I am happy to share that I have found a style that I enjoy very much. There's more to come, so stay tuned and drop me a line if you wish.

"Lucky"

:: Breezy Night 70ºF  |  High of 81ºF  |  skin extremely calm

I am not the only one with photodermatitis in my family. My older brother was born with it and his skin would often break out much worse. 
My brother visited me a few weeks ago and after years of not seeing each other I held his arm and checked his skin closely. He had told me that the break-outs were not as intense now and that his skin somehow had "thickened", so I had to see it up close. For my surprise, his skin didn't have any irritation despite the 80+ degree weather and it looked darker, somewhat thicker as he put it.

Perhaps the first incident that "connected" me to my brother in a more higher level happened when we were very young, coming back home from visiting our family farm.

My dad drove an antique car and it was packed with our family – my mom, dad, brothers, sisters, and grandma. The car felt really hot and dusty. It was a long drive through rural Mexico. We came upon a riot in the middle of the highway, adjacent to a railway where a number of farmers had stopped traffic – and had also stopped the train. There was a lot of chaos – many cars were waiting in line and many people were out of their cars. Some were quite angry, yelling and screaming, and some were even praying. We spent the whole night there. Waiting.
By the morning my dad’s impatience had grown. When he turned around and saw my brother scratching and growing increasingly red, as usual, he got even more upset. He got out of the car and approached the farmers at the end of the line and told them that something was ‘wrong’ with his son. He stated that an insect bit his son and he was having a severe allergic reaction and needed immediate medical attention. I remember my dad coming back to the car and demanded that my mom cover my skin, as some of the farmers were coming to check on my brother’s ‘inexplicable’ skin condition.
After the farmers stared at my brother for awhile and discussed whether or not they should let us through, we were able to leave. They asked cars to move around so we could pass through.
I can’t really describe what I felt that day. I remember feeling both sad for myself and somehow taken advantage of by my dad as well.

So many years have passed since that day. I’ve since realized that my dad did whatever his instinct told him to do to get our family out of that unfortunate situation. While it wasn’t morally right for him to lie to those people, I can understand his desperation at that time. I only wish he would have talked to my brother and I after that incident. I wish he would have told us that he accepted us for who we were and that he wasn’t taking advantage of our condition.

I sometimes felt ‘lucky’ – relieved that I had not been born with the condition, only having it develop as I grew up and thankful that my break-outs were not as severe as my brother’s. I now know that I wasn't 'lucky'... I've been always fortunate to have this special bond with my brother.

Your blood is too sweet.

I was nearly ten years old when I first heard the word photodermatitis. The word was scary, foreign, and it alienated me from the rest of the world. I felt bombarded by ‘perfect’ images of the female figure on TV, by peoples’ staring and even by my family’s judgement.

Before the diagnosis my mother heard many speculations about the cause of my disorder - those reasons varied from the hypothesis that she didn't received enough sun while she was pregnant with me or that my blood was very sweet and attracted mosquitoes to bite me.

It is funny to think about it, as it almost sounds cute, but when I was a little girl I felt uneasy when I had to share this explanation with others.

I still encounter people who ask about my skin. People can be really thoughtful when asking, but at times they can be rude. I have learned to answer honestly. Giving others the facts about the condition not only prevents me from feeling awkward, but it can also open an opportunity to share my knowledge with others and even learn about other skin disorders.