Maria’s Story

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Faces of the Foundation:
2016

Condition:
Lamellar Ichthyosis

Resources:
Mayo Clinic

National Institute of Arthritis and Musculoskeletal and Skin Diseases

WebMD

 

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Meet Maria G.

Kahlil Gibran, a philosopher, once wrote, “Your joy is your sorrow unmasked.” This quote touches close to my heart. Only one person is born with Lamellar Ichthyosis, the genetic and chronic skin disease that I have, out of about half a million people. Sufferers have plate-like scales of cracked skin which often appear brown in color and they are unable to sweat. As a young child, I was always perplexed when people would stop and stare at me and make unkind remarks. As I got older, in order to avoid people’s stares and them asking me if I was burned in a fire, I started to cover up as much as I could. I hoped that nobody would remind me that I had an obvious visual distinction. I remember well the sense of shame I felt because I was different and, from there, I began to truly believe that the something wrong with me was more than skin deep.

When I look around me, I see so many people that try to hide their imperfections like I did for so long. Having Ichthyosis has grown in me a deep sense of compassion for others and an ability to see true beauty in each person that I encounter. I wholeheartedly believe that everyone has a story to tell the world, and I want to be the one listening to it. Each person I encounter has something novel about the world to show me; some truth I would have never acquired had I not met them. I am able to see value in people because I look beyond the surface details of a person and see who they truly are.

I have met some of the most extraordinary and strong individuals that I know through different skin camps and conferences I have attended. They have impacted me and have shown me the importance of having a strong support system in my life. I have chosen to channel my pain into good by serving as a camp counselor at camps for children with chronic and serious skin diseases. The wisdom and empathy that I have gained from struggle has helped me to be able to relate to people on a more personal level. My experiences have further opened my eyes to the need for people to advocate on behalf of those who are too afraid to stand up for themselves. I am certain I would not be as compassionate and aware of others and their feelings had I not known what it is like to feel isolated and alone in my own personal trials.

I realize that because I overcame a massive hurdle by changing my outlook on life and accepting myself, other hardships often pale in comparison. I am able to focus on all of the positive aspects of my life and enjoy every moment because I do not allow myself to wallow in self-pity. I know that everyone has something that makes them unique and while my difference may be more apparent than other people’s, it is not something of which I should be ashamed. It has shaped me into a strong, driven, and kind individual.

I share this disease with about one in a half million people, but there is only one me. Each of us can leave behind a unique mark on the world. I have come to grasp that I am not an innately flawed person because of my skin. What I believed for so long was my greatest curse in life turned out to be my greatest blessing. It is a fountain from which I can draw joy from and bless others by showing them that they should never conceal who they are. Someone out there cares and wants to see you without your mask on.

Things to know about me:
  • I have lived in three different countries on three different continents. I was born in Egypt, moved to Germany, then to America with my family.
  • I love the outdoors and would love to one day live right by the water.
  • I just got a golden retriever. His name is Tucker and he is the most precious thing ever.
  • I have been on Honor Roll all throughout middle school and high school.
  • I made the Dean’s List all four semesters so far at Ohio State.
  • I am a Key Club Member of the Month.
  • After I finish my undergraduate degree, I hope to attend law school. I am not sure which concentration of law yet.
  • I have been a counselor at a dermatology camp for the past two years. I have learned so much through that. Camp is a place for healing from past hurt and future hurt brought on by stranger’s constant stares and unkind remarks as the kind words heard here echo louder than those filled with judgment for months to come. Time spent here always rejuvenates me and reminds me how much I love encouraging others and making them feel special.
  • I absolutely love going to camp and despite being an introvert and usually needing time away from people to regain my energy, I thrive around people there and I never want to go to sleep when I am there.
  • I am Passionate about: Serving Others.
  • I choose to forgive people even when they are not truly sorry and to be able to focus on the good in any situation.
What I Want You to Know about Growing Up with Ichthyosis:

I felt Ashamed.

That is the word that encapsulates how having Ichthyosis made me feel for the longest time. One of my earliest childhood memories that is forever imprinted in my mind is seeing two girls use their foil sandwich wrappers to cover their eyes because they thought my skin condition was disgusting. I remember wanting to disappear and feeling incredibly sad and hurt. It felt as though someone had taken a sharp-edged knife to my heart and carved horribly intricate patterns into it. Six year old me didn’t understand why anyone would act in such a hurtful manner and, in all honesty, twenty year old me is still a little fazed by stares, rude remarks, and thoughtless actions. Some of the hurtful comments have stuck with me and have prevented me from truly opening up to even the people I love most in this world.

For so long, I felt so much shame in looking different. I distinctly remember spending so many hours scrubbing at my skin and trying new creams and prescription medications in order to try to look “normal” for my senior prom. I remember feeling insecure and looking down a lot that night. While it was I’m sure, a very memorable night, all I clearly remember was wishing that my skin was normal and that I didn’t stand out despite the countless friends that told me that I looked stunning. As crazy as it sounds, I thought if I looked a certain way, I would somehow be more likable. I found and still find myself constantly apologizing to people for things that are out of my control. I felt so much shame and embarrassment in having dry hands despite constantly putting on lotion whenever someone reached out their hand to shake mine or hold it or give me a high five. I would profusely apologize and brush off any trail of skin I left when my skin pealed and when my lotion smeared on people. I also constantly apologized for inconveniencing those around me when I started to get overheated because I am unable to sweat.

My mind often drifts back to that hurtful experience and other similar ones and I find myself making assumptions about how those around me perceive me. I find myself hyper aware during interactions with strangers. When someone stares for too long, I always assume they are going to make a rude remark or ask an invasive question that I really don’t want to have to address. Somewhat recently I took a bus to a restaurant with my roommates and a stranger kept looking over at me. I felt super uncomfortable and I hoped he wasn’t going to ask me about my skin because I just wanted to enjoy my evening without any ignorant comments or assumptions. Due to numerous bad experiences, I was so sure he was going to ask me about my skin, but instead he complimented me on my eyes as he got off the bus. I was surprised that someone was just being a decent human being by not making an ignorant remark or pointing out the obvious and deep down I know that it shouldn’t be this way. I also find myself wondering if people are ashamed to be seen with me.

Because those wounds haven’t completely healed and I struggle with comparing myself to others, I think part of me will always wonder, what if? While it is just a mutation in one gene and it is mostly just dry skin, it marks me to the world as less, as incompetent, as someone worth pitying. Life with a visible condition can be so hard. No matter how much acceptance and love there is around you, you still wonder, what if? If I had normal skin would I be happier? Would my life be more full? More meaningful? Easier? Would the people in my life love me more?

But then I remember that it is because of a mutation in gene TGM1 that I know firsthand the importance of compassion, kindness, and fully accepting people and their differences. I know how important it is to listen to people’s stories and struggles and I am always willing and eager to lend an ear or a shoulder to cry on when I see that someone around me is hurting. Because of this condition, I have met some of the most wonderful and thoughtful people that have taught me how beautiful and precious life is. I have learned that we should revel in every moment we have because we are not guaranteed another breath. I am slowly learning to not let past hurt paralyze me and keep me from opening my heart.

I am baring my soul more than I feel comfortable because my wish is that anyone reading this will try to embrace their differences and to remember comparison is such a thief of joy. It has the potential to rob us and make us feel insecure in our relationships. Comparison has the potential to blind us from seeing beauty and wonder in the people and world around us because we become too focused on what we do not have. I do not have perfect skin and I have to remind myself that I am not the problem when a stranger gets up in a hurry to move away from me or when someone wipes their hand off on their pants after shaking mine, as if a genetic condition is something that can be caught.

What you want people to know about Ichthyosis:

I find myself feeling incredibly wounded and uncomfortable when strangers pray for me to be “healed” of my skin condition. I have never requested for anyone to pray for me to “be normal” and in all honesty it reeks of ignorance and assumptions when people do this. Despite believing in miracles, I have come to terms with not needing or desperately wanting one for myself. I believe that we are all “Fearfully and Wonderfully Made” (Psalm 139:14, one of my favorite Bible verses) by an amazing creator. Of course there are incredibly difficult days, but I firmly believe that God did not make a mistake in making me or anyone else. While I don’t think that people necessarily have bad intentions when they pray for my skin to get better, it makes me feel beyond hurt. It makes me feel like I’m not good enough and it makes me feel like I’m not accepted the way I am. I have seen God work so much through having this. I wouldn’t be nearly as compassionate or kind had I not known what it is like to have this condition. God has changed my heart and transformed me and that is enough for me. I believe that without suffering, hurt, and disappointment we wouldn’t have the capacity for true compassion.

I find myself cringing internally when someone reaches out their hand to shake my hand or high five me or when an activity calls for hand holding. I am well aware that my hands are dry so I’m never one to initiate touch in general. In all honesty, my first impression of people, if we shake hands, is based on if they try to discreetly wipe their hands off on their pants after touching mine.

I hate feeling like I have to constantly prove people wrong. As someone who looks different, there are often times lower expectations of me. I have had people talk super slowly to me and assume I’m unintelligent. Last semester, a teacher’s assistant that I had never even spoken to before had the audacity to ask me if I was sure the graded exam that I picked up after my name was called was mine and not someone else’s because I had gotten a perfect score.

No, you likely do not have a magical cream that will work wonders on my skin. No, I do not have a sunburn. No, my skin condition is not contagious.

Telling me you do not/did not notice my skin is likely a lie and it isn’t actually a compliment and it doesn’t make you look like a good person in my eyes. We all notice differences; it is how we react to them that truly counts.

How you should be treated and want to be treated – educating people not to be afraid to ask, the good and the bad ways people have treated you:

I do not mind when people ask questions. I just don’t think it’s acceptable to go up to someone and say something like “Oh. What happened to your face?” Anyone with any visible condition has probably been asked about their condition more times than you can imagine. Nobody has a right to interrupt any else’s life and ask them invasive questions. If someone is not comfortable talking to you about their condition that is their prerogative. Respect their decision. They are not intending to offend you by not wanting to talk about it. While awareness is important, people have a right to their privacy so just try to remember that. Ask yourself – Is it worth it to know what they have when you are clearly making them uncomfortable?

I’ll leave you with these thoughts:

One of the cruelest and most hurtful things you can do to someone is to negate their value before you even give them a chance to show their presence. Who are you not giving a chance? When we stop trying to look at ourselves for flaws and begin to believe that we are truly so beautifully, fearfully, and wonderfully made, we can begin to see beauty and wonder in every difference and learn to appreciate life more fully.

Here’s a link to Maria’s blog:
ourjoyisoursorrowunmasked.blogspot.com/

Maria’s Photos

Maria’s Blog

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