ISSUE [4]: AUGUST 2013
SKIN DEEP EXPOSURES EXPOSING BEAUTIFUL FROM THE INSIDE, OUT 2013 © NAOMI MAUTZ PHOTOGRAPHY
Exposing Beautiful FROM THE
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2013 FEATURE CONTRIBUTORS
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my strength, but have always encouraged me to fight against the limitations that HSP presents in my life. After being dragged to the gym a year ago by one such dear friend, I am now a much healthier person. I am so grateful for her belief in me and her refusal to watch me feel sorry for myself. Because she forced me to realize the strength she saw in me, I now strive to live that testimony for others. Yes, I have a disease and I am limited but I can and I will put up a fight against those limitations and live the life I have been given to the fullest. These three last three years have taught me to find strength in my darkest days. The times I think I can’t possibly survive one more day are the times when God shows me what I am really made of and that all things are possible through a God who strengthens me, on whose wings I can rise up and face tomorrow. I strive to live each day in such a way as to inspire others to stand strong against their limitations; to learn to love and take care of themselves and to adopt an attitude of gratefulness in their circumstances no matter what they are. Nothing is promised to us in this life. We don’t get to choose the circumstances we will face, but it is our choice what we do in the face of those circumstances.
To learn more about HSP or to support the search for a cure visit: www.sp-foundation.org
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Farewell SUMMER
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COLORADO SPRINGS, CO.
Heather Latham 1
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1. making music 2. hanging with my friends 4. taking random pictures 5. tanning
3. coloring with chalk 6. going swimming
“My Favorite Summer Pastimes”
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YOUR ART HERE
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Living With My Disability: DAPHNE HEGRENESS continued.
“Life is about making a conscious decision to live and to love and to never give up.” Daphne decided early on that she did not want to let being an amputee keep her from living her life to “I am continually being given the fullest. It took her a while to figure new oportunities to share my out what her new limitations were. But even as she discovered hurdles, faith and what God has done she quickly found ways to overcome in my life with others. I have them. She discribed how every day spoken at camps, youth groups she was faced with new obstacles to and public schools about being overcome. It was always the things an amputee. Having a disability others take for granted that felt like comes with many unique trials, the biggest challenge. Things like struggles and hardships. But I walking, running, biking, skiing and working. Every new accomplishment believe it is in those times we have was a victory no matter how small or the greatest oportunity to grow. I have seen first hand how God insignificant it may have seemed. uses our weaknesses to show us Since having her leg amputated, a whole new world has opened up to His strength. He often turns the Daphne. She has been given so many struggles in our lives into someamazing oportunities she never would thing beautiful to be used for His have had otherwise. glory.” “When I got cancer and then when I lost my leg I felt like God did not just give me a new chapter in life, he gave me a new book! A whole new world was opened up to me, difficult at times, but always incredible.” Never having been much of a runner, Daphne became passionate about learning to run on her new prosthetic. After struggling through several issues, including not having the right leg, Daphne met her husband, Jeff, a Physical Therapist, who has acquired an internship working with amputees. Jeff began working with Daphne, and after a year of training, he taught her to run again. Daphne soon learned that she loved to sprint. She began training at the Olympic Training Center in California and competed at the Paralympic trials last summer.
Daphne admits to still struggling with her disability on a daily basis, but in the midst of her struggles she tries to always remind herself that God has gotten her this far and he isn’t going to leave her now. A lot of doors have been opened to Daphne since she lost her leg and she has been able to meet many inspirational people who have taught her strength and endurance. She has witnessed so many others who have to face each day with unique burdens of sickness and an array of disabilities but they do it with a smile on their face, praising God for what they have been given despite the things that have been taken away. Seeing such amazing faith is a constant reminder that she serves a huge and faithful God.
“Life is about making a conscious decision to live and to love and to never give up.”
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katy
EXPOSED
ON THE COVER SDE: How would you describe yourself? KATY: Hmmm. That is hard. I’d normally say that I’m an average girl but that is boring and not quite the truth. I am someone who strives to be unique. Recently, I think a lot of that comes from living with HSP. Anytime I walk anywhere my strut gets attention. I often get stared at, which bothers me, but somewhere along the way I realized that I am different. There is no point in fighting it so I might as well celebrate it. Instead of being embarrassed about the things that make me different, I bring attention to them. This gets things out in the open and relieves the awkward discomfort that people tend to have around me. I try to make my disease and the struggles that come with it my biggest triumphs and I have found strength in the process. SDE: What inspires you? KATY: Music has always been a huge inspiration to me. Lyrics are just poetry put to a melody and I have a deep love of poetry. I listen to different types of music depending on my mood and circumstances. Sometimes when I am listening to the lyrics of a song, hearing someone express feelings that I can relate to in that moment in such a poetic way is somehow cathartic. SDE: Can you tell me a little bit about your experience with HSP? What has it been like for you? KATY: HSP is a family of neurological disorders that can manifest in a number of different ways. For me, the myelin sheath around the nerves in my legs is thinning and so there is a communication glitch between my brain and the nerves in my legs . So when my brain sends the signal to walk, for instance, sometimes the message is interpreted as spasms and violent twitches and other times my legs will just lock up completely. So the simple act of walking, in my case can become a sticky situation and when I am able to propel myself from point A to point B it is a very twitchy process.
“I have learned that I am a whole lot stronger than I ever gave myself credit for.” My experience with HSP has been a lot like the experience most people have to acquiring a disease that alters their lives. I definitely went through a period of denial, telling myself it would go away and then absolute anger that this was happening to me. I had my time of depression and feeling sorry for myself and that maybe lasted a little longer than I am proud to admit. That all changed though one night while I was out with friends. We were hanging out and I fell near the bar. Because of the way I walk people often assume that I am drunk.
When I fell, there was a guy who took the opportunity, with the guise of helping me up, to attempt to sexually assault me, thinking that I was inebriated. I was so angry, at the guy of course, but also at being in a situation of such vulnerability. I went home that night and fell on my knees. I couldn’t live like this anymore. I needed a purpose, something to fight for. I would not allow myself to be a victim anymore. I started pouring myself into researching HSP, getting involved in support groups and fundraising. I sought out others with HSP who
were strong and brave and I found that I could draw an enormous amount of strength from them. I wanted to be an encouragement and support for others as well. Eventually I became the Colorado ambassador for the HSP Foundation. I am involved in research projects and in facilitating HSP awareness. SDE: What do you wish more people understood about your disease? KATY: Honestly, I think the biggest frustration comes, not from people’s ignorance of HSP, but from a lack of common manners more often than not. As ridiculous as it sounds, I wish more people understood the affect that their reactions have. I know that people are going to be curious and that is okay. I don’t have a problem explaining my disease to other people; I have made it my life’s goal to educate people about HSP. My legs don’t work the way I would like them to and I might walk a little funny, but my ears and my eyes work just fine and I can see you staring at me and hear you talking about me and making jokes at my expense. Attracting attention because I am different is something I have really struggled with since acquiring this disease. Instead of allowing that to take a part of me away and make me a victim, insecure and
looking for ways to hide, I have learned to embrace it by looking for ways to intentionally draw attention to myself. Now when people are curious about me my purple hair or my tattoos are safe topics with which to start up a conversation with me. These things help me to give the message that I am strong and unapologetic about whom I am, I am not a victim. And I can always tell myself that people are staring at me because my hair is awesome! SDE: As women, we are so often misunderstood, especially by other women. What is something about you that seems to be taken the wrong way or misunderstood? KATY: I am a very guarded person but at the same time I am very loud and extroverted. I don’t have a problem talking to strangers but I also wall myself off from others so I can come across as shallow and self absorbed. I know it is a defense mechanism that I have developed. I require others to prove to me that they are someone I can trust before I let my guard down. You and I have talked in the past about how it is the normal chain of events to go through a certain process when getting to know someone. Naturally, we put our best foot forward upon meeting someone new. There are steps to go through in order to build different levels of trust in relationships. Usually we are given the opportunity to keep those things that we are most insecure about in our lives locked away to a degree only to be entrusted to those of our choosing. Having HSP, has in many ways, taken that process away from me. I am immediately on display. There is no option of going into a new situation with someone, testing the waters and then having the gradual leading up to revealing the things about myself that I am insecure about. It is kind of like the dream where you are in a room full of people and you are naked. Learning how to live in that nakedness and own it is a tough thing to do. SDE: Through everything, you have managed to accomplish so much and become such a light for others. What is the accomplishment you are the most proud of? KATY: After becoming the Colorado Ambassador for HSP, I decided it was time to get off my butt and fight this disease instead of sitting back and letting it have control of me. About a year ago I joined Curves and got involved in Yoga. I have since dropped 70 pounds. I am stronger, more confident and I no longer feel like a victim. CONTINUED ON PAGE 44 SKIN DEEP EXPOSURES MAGAZINE
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“I want to be someone that emanates strength and defiance in the face of the limitations.” CONTINUED FROM PAGE 43
SDE: I know it is hard to go through something like this so suddenly. Sometimes the hardest thing is just making sense of why. Often the answer to that never comes. What have you been able to take from this circumstance in your life? How have you grown from it and what perspective have you gained? KATY: More than anything, I think I have come to a point where I’m not sure I will ever know why. I hate not knowing why, but if I have to live with this disease, I want it to mean something. I want to be someone that emanates strength and defiance in the face of the limitations. Sometimes circumstances are put into our lives that don’t make any sense to us, but I strongly believe that God takes our crap circumstances and uses them to make something beautiful if we will let him. I know I have learned that I am a whole lot stronger than I ever gave myself credit for and I want to show others that they are too.
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“It is kind of like the dream where you are in a room full of people and you are naked.”
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