What Will Matter

"Have you ever wondered what marks our time here?"

Is our time marked by the suffering and hurt we endure and overcome? Is it marked by the moments that inspire us to be better and hope more? Is it marked by the moments that captivate us and take our breath away? Is it marked by the moments we have chosen to let go of bitterness and let joy and love take residence in our hearts instead? Is it marked by the moments we have chosen to love without expecting anything in return? Is it marked by our compassion for the world and our determination and effort to leave it a bit better than we found it? 

Does our story matter? Does what we are doing truly matter and does it make a difference? Does it encourage someone to face their fears? Does it make someone believe that their story matters and that it doesn't have to end in defeat? Does it make someone believe that they, themselves, matter and they are not alone? 

I think we all have a passion ingrained in us that makes us long to make a difference in some capacity with our time and energy. We all long to matter. We all want to leave the world a little more beautiful and to be able to reflect back on our lives and decisions and feel at peace. We hope to feel that we've done or are working towards doing something that is not fleeting with our short time on this earth. We hope that our actions and our legacy matters to someone, somewhere.

I often find myself grasping at the wind, in vain, wholeheartedly pursuing things that don't truly matter. But what I’ve come to learn this year is that people matter, more than anything else in this world. Their struggles, hopes, dreams, and triumphs matter. Listening to and caring for those around me is more important than any task that I have to finish or any ambition that I have. Our success in trivial things shouldn't define our worth. It's easy to get wrapped in the day to day tasks and to forget to pause and put others first. It's easy to not make the most of every vulnerable moment and to ask people how their day truly was and wait to hear their answer.

I think what will matter at the end of the day is the kindness we displayed to those around us and the steps we have taken to make someone around us feel a little less alone. What will matter is if we made a conscious effort to be aware of the others, even in the midst of the chaos in our own lives.

I often find myself wondering why there's so much hurt in the world and what the purpose of it all is. As I’ve wrestled with this question, I have found part of my answer in one quote that has always been close to my heart: “Without suffering there would be no compassion.” In my opinion without a taste of suffering there would not be love or the longing to make others feel valuable, important, and loved. There would be no willingness to care, to reassure, to be vulnerable, to listen, to sacrifice, or to love.

Without suffering we would not dream of a better world filled with kindness and compassion and work within our capacity to make that dream a reality. We would not be catalysts for positive change, for acceptance, or for love. We would not have the desire to lend a hand, or an ear to the lonely, hurting, and struggling. We would simply walk away from hurt as it would not tug at our heart strings. We would not employ our strengths to work joyfully to help worthy causes. We would not be driven to demonstrate love and kindness to the world in our own unique way.

There is so much pain and sorrow in this world and there are so many people that feel hurt and alone. We have the power to stop and to care and to be compassionate. We have the ability to sympathize with others and share in their suffering. We also have the power to scar and destroy others with our indifference and to make them feel insignificant when we choose not to listen. 

True compassion requires that we take a step outside of ourselves and care deeply about those around us. To me, being compassionate means being brave enough to enter someone's storm and listen to their story and meet them where they are at. It means not holding back our own struggles. It means baring our soul more than we feel comfortable and being vulnerable. We risk rejection and hurt in the hopes that what we have to say about our experiences on this earth will make a difference. Compassion instills in us a new found bravery and a different way of thinking and thus a novel way of interacting with the world. It allows us to share our hurt and our struggles in order to remind the world that words can cut, rejection can sting, actions can destroy, but ultimately love and forgiveness can help heal the wounds on our hearts.

All the beautiful souls I’ve met through different medical conferences, camps, and through blogging have touched my life in some capacity. They’ve made me feel understood and proud to be a part of a community that is incredibly compassionate and that understands the value in loving people the way that they are. They have believed in me, supported me, and reminded me that I am not alone in my struggles to continually put Ichthyosis back its place as merely the condition of my skin, and for that, I am eternally grateful. A few of these incredible people have given me permission to share parts of their story and I am doing so in hopes that you will be reminded that we all have the power to make a difference with our kindness and our willingness to share about our lives.

These friends believed that by baring their soul a little bit, they would make a difference. I am honored to share parts of their story: their struggles, their experiences, and their hopes. Their words have reminded me that the awareness and compassion I'm dreaming of and fighting for is for them and anyone who has ever felt inadequate because of a difference, whether it is visible or not.

I implore you to go out there in this world filled with so much sadness, pain, and loneliness and do something each and every day to make the world a little brighter for someone else. I challenge you to care. To listen. To be a light. To be kind. To be gentle. To give people a chance. To love wholeheartedly. To give your time. To listen to people's stories without judgment. To learn. To be brave. Most of all, I challenge you to allow compassion to dictate your actions. Do not suppress the desire to open your heart and to love fearlessly and care deeply for others because the thought of getting hurt terrifies you. 

Compassion is incredibly beautiful. It  connects us all and allows us to surrender our pride in the hopes that we can help to lift up those around us. It compels us to give more freely of our time and our love to those around us. It convicts us to stop building up walls around our hearts and to share something that truly matters and makes us vulnerable with the world around us. 

I truly believe that compassion changes everything. It ignites the soul and directs us to love, to care, and to see beauty in the world around us. Even in our darkest hour we can hope and believe that there is beauty that can come out of our pain because compassion is out there and it can and will help restore our brokenness.

Words from a few of my beautiful friends...

“It is my opinion that everyone is battling a personal demon; the only difference is that I have to wear my demon on my face...Growing up this made me self conscious and shy. I would apologize for my skin before it was mentioned because I felt constantly judged for it. I’ve been asked if I would choose to be born without this condition and the answer is always no. This condition humbles me, allows me to see the best in other people, and makes me strong. More than that this condition is a part of me. It has taken time, but I’m now able to put down my sword and grow to see my skin condition not as a demon, but as an angel.”

-Sydney Rosenthal

“Having Epidermolysis bullosa (EB) has caused me to have such an incredibly high maintenance daily lifestyle. One that I can never get a vacation from because it's simply all I must do to survive day to day..I wear my battle scars with pride. Many look at me in amazement that I can simply walk into a room so clearly worn and I still light it up with my confidence. I've lived through every single one of the wounds that caused the scars on my skin..Because we show how we suffer it's visible to all; maybe we are lucky because everyone can see it.. Others suffering mentally are often brushed aside and labeled as being dramatic. it is such an incredibly sad way our society disregards others without fully hearing them..My intentions are always to make a lasting impression. All positive I hope. For however long God allows me to be here. Knowing my fate makes me live everyday to the fullest.”

-Michelle

“I have this enormous heart full of compassion because I know what it's like to be on the outside looking in.  I have been in a room full of people and felt like I didn't fit in.  I know what it is like to be alone and feel like no one understands what I'm going through.  I have felt the pain of being bullied, stared at, made fun of, and excluded.   I've been frustrated that I was never the "pretty girl."  I've hated the media for portraying beauty the way it has and knowing I will never reach that standard.  Yet, all of this has made me the woman I am today.  It has given me a heart for other people who are going through a similar situation.  It has given me the ability to help them get through it.  And it has given me an inner strength and confidence that I never would have gained if I didn't face all that adversity.”

-Bailey Pretak 

“I've learned that I would rather have people ask me questions about my skin condition instead of just staring. It helps raise awareness. Family is the best support system and I wouldn't have done or accomplished half of what I've done without them.”

-Tamara Valdez 

"There is no cure so far for ichthyosis, so we have to learn and try things that work. Meeting people and sharing experiences helps me deal with all sorts of situations. Knowledge is power!"

-Diana Gilbert

"Now I think it's my job to spread awareness about Ichthyosis because a doctor cannot teach or treat what he or she has not learned about. The beauty of a person is shown by their grace, attitude, support of others, and love. We do not have to be ashamed of who we are. We are blessed by who we became through our struggles." 

-Gene Yates 

"The turning point for me was when I accepted my Ichthyosis. I don't remember what age it was, but I knew that this was my reality. Ichthyosis is for life and it's not going away. And so I stopped looking for a cure, focused living the best life I could with the treatments I can afford and access. I took pride in my appearance - dressing well, making sure my skin looked its best (without hiding it) and then I started to tell my story on my blog. Through doing so, I've met hundreds of others with ichthyosis. Many tell me through telling my story, I've given them hope for their/their child's future, and made them feel less alone. In 2015 I organized Australia's first Ichthyosis meet. For many of the 75 attendees (25 had the condition), it was the first time they'd met anyone else with Ichthyosis. Firm friendships were formed. It was wonderful to be able to being these people together. I wish I had this connection with others who live with Ichthyosis when I was a child."

Carly Findlay Morrow (carlyfindlay.blogspot.com)

“I am a survivor. I am more than my skin.”

 Stephanie Moore Turner 

Confessions

A lot of these thoughts have been on my heart for quite a while now. They are in no particular order. I am sorry if parts of this post come off as super blunt but I needed to try to be as honest as possible and not hold anything back. I am sharing this in hopes that by baring my soul a little bit, other people can understand my point of view or my story a bit more deeply.

1. This has especially been weighing on my heart a lot recently and it’s a bit difficult for me to explain. 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. (If you would like to read more about this, my blog post, The Crossroad, expands on this).
2. 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.
3. I am extremely observant and always have been. Often I try to pretend that I don’t notice when a stranger stares at me or moves away from me, especially when I am with friends or acquaintances.  
4. I am still astonished when people just bluntly ask me about what happened to my face/skin without even acknowledging me as a person first. I honestly don’t mind talking about my skin condition and letting people ask questions. Drunk people are the worst when it comes to asking really invasive questions. I hate walking past anywhere where people have been drinking for this reason.
5. 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.
6. It took me until probably the 5th grade to occasionally start wearing short sleeves and shorts. I am still not super comfortable wearing short sleeves when I know I’m going to be in a crowded space.
7. “1 like = get well soon” type posts make me so unbelievably angry. These are real people and they don’t deserve to be subjugated to such ignorance. I have seen these types of posts go viral with pictures of people with my specific skin disorder and other skin conditions. If you’d like to read more about this topic or why this is offensive you should check out this post: http://www.courtneywestlake.com/ignorance/ 
8. 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.
9. Pity from other people disgusts me. I have chosen to make my struggle my strength.
10. I still remember almost every rude comment or action that I've experienced. Words are powerful and they can impact people more than you know.
11. I honestly don’t want to be your inspiration and I don’t think I deserve to be. I don’t believe that I have done anything commendable yet and I’m simply just living my life, just like you are living your life.

Puzzle Pieces

  

     “Why do you look like that? What’s wrong with you? Were you burned in a fire? Do you have leprosy?” These interrogations from strangers went further than the surface of my skin and into my core. They echoed in my head every time I tried to open up and for a very long time I couldn’t muster up the courage to look past how people viewed me. I wanted to be like everyone else and I detested being different. I despised having Lamellar Ichthyosis, a genetic and chronic skin disease that affects one in a million people, and I wanted it gone and out of my life.

“What happened to you? Haven’t you ever taken a bath before?” a random woman demanded while I was at a grocery store a few summers ago, freezing me dead in my tracks.

I took a deep breath and let it slide out:

“I have a skin disease, Lamellar Ichthyosis, it’s where my skin doesn’t separate correctly at the surface..” I tried to explain, but she quickly cut me off.

“How disgusting. If I were you I would never step out in public,” she responded before grabbing her son and strolling away. This certainly wasn’t the first time that someone had been ignorant about my skin disease or had made a rude remark, but it felt like someone had taken a sharp-edged knife to my heart and carved horribly intricate patterns in to it.

“I’m so angry at God for making me like this. I’m so tired of having this and having to deal with the constant stares and rude remarks,” I whispered to my mom later that day after I had finished telling her about what had happened.
"You really have a choice—do you want to spend your time being bitter and wishing things were different or do you want to allow the hardships to shape you into someone who is more caring, kind, and aware of others?” she replied.

“Make me better? How could this possibly make me better?” I questioned, puzzled and annoyed at her response.

“Maria, if I could take this away from you I would in a heartbeat,” she stated. “But God gave you this for a reason. So that you can shine His light in the world and make a difference. So that when people see you they can see peace and love radiating through despite how rude they may be to you. Don’t let other people affect how you feel about yourself. If they can’t see what a great person you are then they’re not worth a second of your time,” she finished.

     After being convinced of my self-worth in that moment, every aspect of my behavior was valorous. I was like a free bird soaring towards a different future that was exonerated from anger and pain. Now I realize that forgiveness is the most powerful weapon I have. I now understand fully that anger holds you down; it cripples you and removes the joy out of your life. It is so easy to remain submerged in the pain and anger, even hatred, and to become attached to the victim role. One thing that used to be a great struggle for me was that I believed that I had a right to be angry when people hurt me, but now I know I must forgive and forget. It’s still a constant struggle, but I’m taking it one day at a time. Those words of wisdom are ones I have to remind myself of constantly. I have to remind myself to not focus on the hurtful comments and thoughtless actions. 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 Ichthyosis is something that can be caught. I have no way of changing how people behave or what they are thinking of, I can only be me, but that’s enough. During a recent conversation, I was told "I'm sorry" in reference to the struggles that I face. I quickly responded "I'm not." My experiences have enabled me to be more understanding and to be much kinder to every single person I encounter, despite how they may initially treat me.

     I realize that because I overcame a huge 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 being alive, enjoying every moment with those who help me see beauty in every day and inspire me to soar beyond the horizon of the past. 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. 
     My biggest fear in life is focusing too much of my time and energy on things that don’t matter. The more experiences I have, the better I understand that we all have something to teach each other and learn from each other. All of our stories matter and each of them is like a puzzle piece in that when it is shared with others, it becomes a part of a grand and beautiful picture that helps them become more understanding of different, yet authentic human experiences. 

      Our darkest moments might ignite something in us and encourage us to step out of our comfort zone. When I look around me, I see so many people that are ashamed of their imperfections like I was for so long. Sharing pieces of my story helps heal those wounds that were haphazardly created through disheartening remarks and actions by allowing me to come to terms with the most heartbreaking parts of my story. 

      I was listening to a TED Talk recently and this stuck out to me: “Vulnerability is the birthplace of love, belonging, joy, courage, empathy, and creativity. It is the source of hope, empathy, accountability, and authenticity. If we want greater clarity in our purpose or deeper and more meaningful spiritual lives, vulnerability is the path.” I am hoping that with this blog I will become more inspired to share more of my story and encourage other people to share theirs. Over the course of the next year I will be having conversations with those around me and asking them about their stories:  what inspires them, their most meaningful experience, or some challenge they’ve had to overcome, or whatever else is on their heart. I will then be sharing (whatever people give me permission to share, of course) on this blog. 

     Why?  My hope is that we can all learn from each other and be inspired to be more aware, more kind, and more willing to listen to others. I believe when we listen to others we get a more complete and beautiful picture of the world around us. We see that all the different pieces of people's stories are interconnected and that each piece is unique and irreplaceable. We are able to listen and challenge ourselves to care more and give more of our hearts to those around us. 
      For now, I will leave you with this: You matter. Your story and your experiences matter. Your ideas, your kindness, and your outlook on life are like no one else's. You have something unique and wonderful to offer the world and I hope you know that.

The Crossroad

   Every year after returning home from camp I find myself at the same crossroad.  I find myself yearning to explain to others how amazing the week had been and how much having a skin condition has shaped me and changed how I view the world. Year after year I also find myself wanting to hide these memories and heartfelt emotions close to my heart where no one can unmask them or know they're even there, struggling to find a voice. I find myself wanting to store away any thoughts of sharing my struggles with loving myself the way I was born and not letting past hurt define me. While words will never suffice, I think I should at least try to relay my thoughts. It's easy to assume other people will never understand. Those assumptions have allowed me to justify never being vulnerable and truly sharing my heart with people for years. This week has heightened my awareness to this quality about myself. It's so difficult to open up and to look the world in the eye and attempt to share pieces of your heart that you prefer to forget are there. Words fail to describe how incredible and important this week was. How extraordinary, loving, determined and inspiring these people are and how loved and understood I felt by them. They fail to show my appreciation for how much I've learned from being among them. This week has been everything that I hadn't realized I needed: a chance to be a mentor, but also to learn, a chance to encourage, but also to allow myself to be vulnerable and need to depend on other people's strength. Most importantly, it was a chance to let go of past hurt and to be reminded that life is beautiful and precious. It was a week full of wonder and magic, but also of frustration that reminded me that nothing in life is perfect.
     To start, camp is the place I feel most at home. It's a place where supposed flaws don't matter and where there is more love, compassion, and understanding than any other place on earth. I felt like the luckiest person on earth to be surrounded by so many kindhearted, considerate and generous people. I felt blessed to have found a family that understands how difficult it can be to believe that it's okay to be different while living in a world where even the smallest flaws are criticized. The words uttered by them and their actions showed glimmers into past moments of hurt that deeply resonated with me and reminded me that we all have to face the past at some point. It was extraordinary to be surrounded by people that showed me over and over again that there's hope for a future not intertwined with thoughts of not being good enough or beautiful enough to be loved wholeheartedly by those around me. I came to more strongly believe that differences don't make you unlovable or unworthy in the least. Moments here reminded me over and over again that I'm not alone in my struggles to love myself the way I am. Moments here reminded me that love, kindness, and laughter can matter more than anything else if you let them, they can bridge gaps and make you feel whole again. I revisited the conclusion that I came to long ago: that living with Ichthyosis has taught me more about compassion and caring for people more than anything else. This week has allowed me to use sadness that I've experienced to encourage others. This week illustrated over and over again to me that my darkest moments make me desire to erase people's hurt and show them how amazing and loved they are through my actions and words, and that good can come out of any circumstance. Finally, my week spent in Crosslake reminded me that I am not an innately flawed person because of my skin, and that there's a reason for every moment that I've struggled or felt defeated because of ignorant and spiteful comments about my skin.
      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. My heart is so filled with joy from having gotten a chance to be a role model to my campers and reassure them that their skin conditions don't define them. I had the opportunity to mentor an amazing, talented, strong, and kind group of girls that I will never forget. Reading their notes to me reminded me that you never really know the impact you have on people and that one person can make you believe in yourself again. I was reminded how important it is not to bottle everything up, that to soar you have to let go of dark moments and share your struggles. Our stories do matter. They've shaped us and sharing them can help ease another's doubts about their abilities and worth as a person.
      The time spent here laughing and coming to terms with our saddest and darkest moments together is time I got to know myself better and become more aware of the kind of person I am trying to become. I believe that because I've met people like you and had such profound experiences, I've been changed for good. I know that part of me will never be able to let go of this place as in my eyes it's the most magical of places and a fundamental part of who I am and who I want to always be. I believe that our paths crossed for a reason, even if it was only for a short period of time. We got a chance to encourage each other and see beauty in a new light. It became less about outer appearances and more about the people we wanted to become: open, kind, and forgiving. It became about loving each other and reminding each other that while we may feel alone in our struggles to be accepted by the world, we will always have this family to lean on. This week I've come to more fully understand that what I had believed for so long was my greatest curse in life turned out to be my greatest blessing. Living with Ichthyosis and being a part of this forever family has led me to a deeper appreciation for life and love and the strength that comes from struggle and pain. It has changed me completely and reminded me that every second on this earth can be used to be a light to others and encourage them with our words and actions. It has taught me that one person can make a difference and change how others view the world.