Year of Loki Part II

After the tree fell on my house, repairs were quickly finished. I was very blessed to have a good insurance company that quickly resolved the matter and made sure an excellent job was done on the repairs. I am definitely blessed.

For the next little while, life was really calm. The next big adventure came in October, when three of my friends and I went to Walt Disney World. We had literally spent months planning the trip - emailing, messaging, and meeting about it more than we probably had any right to. Brandi and I in particular had to have spent hours pouring over food blogs... We may or may not have been more focused on food than anything else.

The first day of our trip, we drove down starting early in the morning. We got there a little later than we'd hoped, but the staff at WDW were good enough to help move our dinner reservation back. So, we were able to get dressed for the Not-So-Scary Halloween Party before going to dinner. Kit was dressed as her favorite character from the new My Little Pony, Brandi was a female 1950s Captain America, Amanda was Daenerys, and I went as Han Solo (I even made a Chewbacca backpack for the occasion).

I really enjoyed the Not-So-Scary party, mainly because it was really neat to see how it was decorated.

Over the subsequent days, we did our best to explore the different parks. We had a really excellent half-day in Animal Kingdom. While we were there, we ate at Tusker House buffet, which was absolutely delicious. And while we were there, I got to run into an infamous figure in our family...

Dad, when he was little, had a rather interesting run in with Goofy. When they met, Goofy took Dad's hat off and spat in it. So, the running joke has always been that Dad and Goofy have a strained relationship. After this picture of me was taken, I sent my dad a message that Goofy clearly loved me more. Dad was not impressed. While we were in Animal Kingdom, we also went on my favorite ride: Expedition Everest. Normally, I'm not hute on rollercoasters, but this one was an absolute blast.

Even Brandi had fun on Expedition Everest, which is saying something... she hated pretty much every other rollercoaster we went on. We also spent time in Hollywood Studios. My favorite part of that park was without a doubt the Star Wars section, because, well, Star Wars.

We also managed to take a picture on the main street with the Sorcerer's Hat in the background. As of this week, the Sorcerer's Hat is no longer in Hollywood Studios, so this picture is one of the last of its kind.

That night, we got up to quite a bit of mischief in Epcot. Since we were there during the Food and Wine festival, the place was absolutely packed with people trying to taste all of the offerings. I got a bit overwhelmed by the heat; even though it was October it was still in the high seventies. Dinner that night was really excellent, though, as we ate at Via Napoli. I, unthinkingly, happened to mention that we did have a vegetarian in our party. This little mistake actually lead to one of the funnier moments in our trip. While we were reading the menu, a well-dressed man in a suit suddenly swooped in at Amanda's elbow and asked if she was the vegetarian. He then proceeded to tell her all about the menu - what she could eat, what she couldn't. He repeatedly checked in on us throughout the night, including swooping in once the dessert menus came out. We started to refer to him as the Falcon because of his tendency to appear at the most unexpected moments. I seriously wish we had gotten a picture of him because he was just that amazingly fun. I even managed to forget my Chewbacca backpack at the restuarant, which was a serious problem since the park was closing in only fifteen minutes. Kit and I ran halfway around the World Showcase and managed to arrive at Via Napoli before they closed. There, standing behind the desk, was the Falcon, who beamed at us when we arrived. I told him I had forgotten my bag, and he immediately produced it - looking for all the world as if his night had been made by being able to help me out. He really was excellent, and we were able to make it back to the exit right as the fireworks finished. But, boy, we were beat.

Another night in Epcot, we had dinner at Askershus and like seven different princesses. It was certainly an experience... The food was really good, and our server was so much fun. We asked her all kinds of questions about the menu, which lead to her telling us about her mother's cooking back in Norway. I really like that in the World Showcase you can meet people from those countries; it made the experience feel more like an adventure. My one disappointment about Epcot was that I could not, for the life of me, catch Mulan. Talk about a hard princess to catch! Maybe next time I hit WDW, I will specifically chase her down the way I have vowed to see Grand Geyser in Yellowstone.

Our last full day was spent enjoying the Magic Kingdom. I'm pretty sure that there is no way I've seen even half of the Magic Kingdom, it's just that big. But, one of my other favorite experiences took place in this particular park. Now, I know that being as old as I am, I should probably not have gotten this excited about meeting a character, but...I may or may not have spent half an hour waiting to meet Gaston. And it was worth it. So much. Not only was he gorgeous (with green eyes), but he was also extremely funny. At one point, he even flexed and told me to imagine that we were married. The look that resulted...

Even though my feet felt like they were going to fall off at the end of every day and I overheated a lot more than I should've, I really enjoyed my time at Walt Disney World and would gladly go again. I think, though, one day I just need to take like two weeks in order to really be able to explore it to my heart's content.

... There is probably going to be a part three to this series, just so I can cover my family coming for Christmas. We'll see if I manage to write it before summer happens. xD

The Year of Loki: A Review (Part I)

So, my friends and I have been jokingly calling 2014 the Year of Loki. Why? Well, Loki can be very charming and helpful, but then usually turns around to stab you in the back. Similarly, 2014 has been a curious mix of highs and lows - extremes being a particular speciality. Since I've not been particularly good at keeping up with the blog this year, I thought I would take a couple of posts to fill in the gaps, as it were.

Brace yourselves. I'm going to cover a lot.

At the beginning of the year, I was working as a part time instructor for my university. It was chaotic - I never knew if I would have enough classes to make my rent - but I loved teaching. The opportunity to work with students in both literature and composition made every day better, even when the black dog of depression was nipping at my heels. Because I was so happy teaching, I decided that I would try applying for doctoral programs ... again. The year prior I had applied to mostly theatre dramaturgy programs and Renaissance literature programs; neither worked out. In many ways, I think Heavenly Father understood that I needed more time to really understand where He needed me, and the rejections (even though they hurt) taught me a lot. As I approached my second round of applications, I decided I was going to abandon Renaissance literature and dramaturgy, since it seemed clear that I was not going to be successful by heading in that direction. Instead, I decided to try composition and rhetoric. To explain it simply, composition and rhetoric is a field that examines two primary ideas: that we compose constantly and that we can learn from these compositions. I jokingly tell people that I'm getting a doctorate in teaching people how to write in college, and - while that is a part of it - college composition courses are only the tip of the proverbial iceberg. Originally, I applied to CompRhet programs because I knew I was a good teacher and figured that might help me get my foot through the door. After all, at the start of the year I won the Outstanding Teaching by a Masters Student Award on the department, college, and university levels. (Woop woop!)

The application process was not as smooth as I had hoped it would be. There were snafoos along the way that lead to an incomplete application to one school (rejection) and another school that loved me as an applicant but could not see how I would fit into their program (rejection). But, the Lord always has a plan in mind. For whatever reason, He wanted me to stay in the South, so I was accepted to a PhD program at the same institution where I had earned my masters. While not ideal - some universities won't hire you if you have two degrees from one school - I felt like it was the best place for me. After all, the head of the program was a woman I admired greatly and who was very interested in my work. But, very unfortunately, this wonderful professor passed away in the midst of the semester. The department was rocked: She had been a pillar in our community and was very outspoken on behalf of those who had less power than her. I personally began to be very worried because I was heading into a PhD program without a professor of interest; I had no idea who I would work with over the ensuing five years.

Towards the end of the summer, I began to contemplate where I would live in the fall. After the horrible experience of being discriminated against the previous fall and having to couch surf, I was really hesitant about finding an apartment. But, I had to live somewhere, I told myself. So, when my dad came out to visit, he helped me visit a few places that seemed to be safe, relatively inexpensive options. None of them really seemed right, though, and I don't think Dad or I were very impressed. (And I know, after three years in the same town you would think I could just settle on one place to live. But apparently not.) When Dad heard how much houses cost down here, he encouraged me to see if I could qualify to buy a house. Well, long story short: Yes, I could. Don't ask me how, since I am still not entirely sure how it happened. God truly is miraculous. Within a week I had a realtor (the amazing Ralph and Molly Lusian), a mortgage guru, and appointments to see houses. The next morning I was sitting in the office talking to Miss Dot and Miss Pat, telling them how I had decided to look for a house. They asked what sort of houses were available, and I pulled up a search list to show them the options. There, at the very top, was a brand new listing - just a few minutes off the press. It was an adorable ninety-nine year old home with a bright red door and a giant, fenced in backyard. I looked at it and said, "Oh, I want that one." (True confession: I honestly thought the house would be sold within the day.)

I mean, really, wouldn't you react the same way? Well, I emailed the listing to Molly and told her I really wanted to see the place. Later that day, she called to tell me that she was shocked I had caught that listing so quickly. I was apparently the first person to ask to see it, so they had gotten the keys. I would get to see it that Saturday right after my friend's bridal shower. All I could dream about were red doors.

When I actually got to see the house, I knew it had its problems. The floor slanted, nothing was square, and it was clear the current owner was doing things on the cheap. But there was something about the large windows and quirky columns that twined about my heart. I loved it even more in person than I had in pictures. But, I told myself I was not going to buy the first house I saw. So, the next week I saw other houses. ... And I hated them all. Finally, I turned to Ralph and Molly and told them, "I know this is crazy, but I want the first house." Boy, that launched a whole new adventure. The summer literally became the most stressful experience of my life as everything that could go wrong went wrong in the buying process. I mean, the moment we signed the papers, I told my mother I never wanted to buy another house again. The experience was horrific - all because of things entirely outside of my control. But, at the same time, I was elated to have a house of my own. Finally, I thought, I would be safe.

But, it was the year of Loki.

One Sunday morning, just a scant month into home ownership, I walked to the back door to let Evie out. Originally, that room had been my bedroom, but I had felt that I needed to change it. So the week prior, I had moved my room to the front bedroom. Good thing I did. When I opened the door, a charming present awaited me from the Year of Loki.

Loki'd.

Sometime during the night, a two ton tree branch had decided it really wanted to fall, so it collapsed on my house. The fact I could not see any damage from the inside of the house was absolutely miraculous; that back room should have been flattened. Word got out quickly, as it does in the LDS church, that I had suffered a horrible tragedy. By mid-afternoon, I had an army of men in my backyard armed with chainsaws and good attitudes. Within three hours they had not only cut the branch down, but also moved it out to the curb so it could be hauled away by the city and they tarped my roof against an incoming storm. I don't know if those amazing men realize it, but I wanted to cry on and hug each of them. They were quite literally angels that day for me. The Lord knew I could not handle a giant tree branch on my own, so He sent me a lot of help - and not just those who hauled away the tree. There were so many people who called to check on me, who offered their help or a listening ear, that I literally felt overwhelmed by love. I knew for a certainty that I had people who loved me and were willing to do anything they could for me. It's ironic, but I felt blessed to have a tree fall on my house.

-- Part two coming soon! --

The Terror on Campus

I thought, considering everything that has been happening here on campus, that it might be a good idea to do an explanatory blog post about the ins and outs of what has been happening. For those of you who are not on Facebook, this information is likely new to you. For those of you who are on Facebook, hopefully this clears up some details. I will do my best to be as clear (and concise) as possible.

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On Monday morning, I noticed I had an email from the university. We receive those sorts of things often - like ten times a day often - so I thought nothing of it. The email detailed that a search of one of the dorms had been conducted during the night because masked gunmen had been reported. Nothing was found, the email claimed, and all was well. This incident was immediately concerning, but not for the reasons you might think. My question was, "Why did the email telling us about the incident come twelve hours after it happened?" Normally emails of that nature (and texts messages and calls) are immediately sent out through the emergency system lest panic or confusion begin. Reading that message, I imagined my students in the dorm, terrified and uncertain of what was going on, and I was immediately worried. Little did any of us know, though, that it was only the tip of the iceburg.

It quickly came to light that the search of the dorms stemmed from a threatening post that had appeared on a Youtube video about the segregation issues in sororities. The threat said,

Ladies and gentleman. The day of retribution is getting nearer and nearer. Do not be found wanting. I have seen minorities suffer at the hands of those who think they are superior. This is my first message and I shall not say much. Take this the way you want; as a threat or whatever. All I know is that it will be a day when all that look at minorities with disgust shall remember. After this day, you shall appreciate every minority who walks on that campus. Friday the 20th of September was Miss Sorority Row. My mercy kept all of you alive because it was not yet the day of retribution. Do you want to know how it feels having a TAR-21 passing right through your flesh. I'll be watching all frat parties and monitoring all of your events. The day is near. Be vigilant.

The moment I saw this threat, I felt sick to my stomach. I've always been terrified of a shooting happening on campus; it is a situation we honestly have no training for. And this threat, with its veiled messages and terrorist language, made all of those fears boil to the surface. Overnight, the campus descended into hysteria. Students emailed teachers asking if they were safe to come to campus, parents pulled students from school, and teachers were befuddled. Eventually, the administration sent out an email saying that they were investigating the incident, but (again) no mention of the threat was given. Panic grew. By Monday night, another threat had come to light, and students across the campus were receiving threatening texts and emails. And still the administration did not give us enough information to handle the situation. It was as though the very real fears of the student body were being dismissed and marginalized. Rumors began to compound until the truth was utterly lost in the shuffle of false information.

As a teacher I felt like I was staring into the void, knowing that my students were expecting me to somehow address the situation. But I was also terrified. It was as if the world had been twisted in a fun house mirror and the feeling of safety I had always associated with campus had been ripped out of my chest. How could I do as the administration was asking and carry on as though nothing was happening? How could I pretend that I was not afraid and tell my students to put themselves in what they perceived as a dangerous situation? Monday night, at about midnight, I sent an email to my students letting them know I was keeping an eye on the situation and would make a decision about class in the morning. I then stayed up another two hours, watching for any sign that the perpetrator had been caught. After all, the FBI was involved in the investigation, and I was certain they would have whoever-it-was behind bars within twenty-four hours. When morning came, though, there was no breaking news about an arrest. In fact, the only news was an email again telling professors to keep calm and carry on. I found this answer insufficient. I knew my students needed something - anything - from me, some words of comfort or guidance. So, I sat down and wrote what may be the hardest email I've ever composed. I have decided to share it with you - all of you - because I feel that it is an important element of this conversation. After all, what does a teacher say when their campus has been threatened?

My email went out as follows:

As a teacher, this is the sort of email we hope to never write. But, I am going to do my best.

Right now, we are – as a University – under a terrorist threat. Whether or not that threat is credible, it still exists and is still a source of fear. I fully understand that. I am scared too. As instructors and professors, we are being encouraged to “stay the course” and continue on as though nothing is happening. Many of your professors are probably holding to these orders because they have come down through the official channels, which we are supposed to respect and support. But, I assure you they share your concerns about the current situation.

The difficulty in this climate of fear is that the University has been very quiet. Many have spoken about the Tweets and YikYak messages that have exploded over the past two days – messages that are likely hoaxes meant to increase the fear level on campus. The greatest concern to all of us are the two Youtube messages posted within the past few days. These messages speak of a coming retribution for UA and warn that we are being watched. These threats, whether they are “credible” or not, are real. That’s the thing about a threat: Once it has been uttered, it becomes real. And, I think that is where the greatest source of fear comes from: Someone, whether they mean it or not, has said they want to hurt people.

Something very important to understand is that the University of Alabama Police Department is not alone in investigating this threat. The local authorities and FBI are also involved. My dad specializes in computers and has worked in internet security before. When I told him the FBI was involved, he assured me that they had the second best minds for the job in the world – first and foremost being the Russian hackers. He said it was likely that they knew by yesterday afternoon precisely what computer the threat had come from and were keeping the matter quiet for a reason. I suspect that there is a group behind these threats and that the law enforcement offices are merely trying to capture them all before making a comment. Other universities in the South have experienced similar threats, and at least one arrest has been made at Southern Mississippi in connection with the threats made there. Campus security is taking the situation very seriously.

Today, I will be on campus for class. Security is everywhere, even in the township beyond the university. As I am writing this email, a cop car has passed my house three – no, four – times, and I live [outside of town]. I do not believe you have reason to be afraid today, but I also understand how illogical fear is. Sometimes the most difficult thing about fear is that it won’t simply “go away” when reason enters the picture; we have to fight through it. And right now, I am fighting through my fear, no matter how intense it is, because I believe everything is going to be alright.

If you are unable to come to class, I understand where you are coming from. Email me and let me know what is going on. ...

Also, please be aware that the University of Alabama offers trauma counseling. If your fear is overwhelming you, please take advantage of this service. The first visit to the counseling center is free. You can to go to the center at 1000 South Lawn Office Building (1101 Jackson Avenue) or call (205) 348-3863 during operating hours, or call the UA Police Department at (205) 348-5454 when the center is closed. I know from personal experience how helpful it can be to seek additional help when fear is so prevalent.
But please do not let this fear own you. We can make it through these difficult times together. Hopefully, I will see you in class today. I will put off our sentence draft assignment until Thursday, since I want as many of you as possible to take part in that very important lesson. Today, just come to class and we will work on a less critical skill.

Know that my thoughts and prayers are with each of you. Stay safe.

On Tuesday, some of my students did not come to class. Many of them emailed me, telling me that they did not feel safe coming to campus until an arrest had been made. I understood where they were coming from: I honestly did not want to go to campus either. But, I went. I went on Tuesday because I knew that I needed to be there for my students, to show them that fear should not determine what we do. And by showing up to campus, the University of Alabama collectively showed this "Author Pendragon" that we were not going to ruled by their threat. I was so proud of my students who came; they were so brave. Many of my colleagues have tried to belittle their fear, saying that it is ridiculous to be concerned about one little threat. But, looking into my students' faces that day, I knew that coming to class had become a Herculean effort for them: that coming to class was a way of stepping into perceived danger; that they were terrified; that they trusted me to keep them safe. How could anyone belittle that? I could not - and cannot - understand how other members of the faculty are treating the situation as a peevish, childish tantrum. I think, though, that a lot of my empathy comes from the fact that I know what it is like to put yourself between an attacker and their victim. I know that very personal and intense fear of staring death in the face and wondering if you are going to make it. My students felt that fear but were able to overcome that. I can only guess what was going through their minds at that moment. But I can tell you what was on my mind. That morning when I left for class, I seriously asked myself, "What would I do if a shooter entered my classroom? Would I be brave enough to try to stop them?" The answer that came to mind: "I sure hope so."

Class was a very tense affair. Any little noise made my students jump. We spent a good twenty minutes of class talking about the situation. My students wanted to know if teachers were being told things they were not, and I had to tell them that we knew only what they did. We then talked about whether there was any danger. I tried to be logical, pointing out that the campus and city were crawling with police officers. If anything were to happen, it would be over in a blink. I also addressed many of the rumors, pointing out the flaws in them and encouraging my students to not take them seriously. We even talked a little bit about what would happen if something did go wrong. That part of the conversation terrified me the most. After talking about it, though, I could see my students relax. They knew that I would give them any information I could as soon as possible, and I could tell that they trusted me to be real with them. I was grateful for that. We then watched a couple of funny Youtube videos, because humor can often be the greatest weapon in the face of such intense fear. And then we carried on, this time working as a team.

The situation on campus is still tense. Only one arrest has been made, and that was in connection with the emails and texts students received on Monday night. That young man is likely going to regret the choice to send those messages for a very long time, but at least the arrest did something to stem the tide of fear. However, no arrest has been made in the case of the original message. So, technically, we are still under terrorist threat. And I am still scared. The stress is frequently overwhelming, and my post traumatic stress disorder has been in high gear. Sudden noises make me jump, even though I know logically I have nothing to fear. I personally cannot wait to hear that arrests have been made and that the madness is over. I want my safe, happy campus and my jovial, relaxed class back. And I never want to have to live through anything like this again.

But even now, I am left with a number of unanswered questions. How did a Youtube post that specified neither time nor place lead to an investigation of a particular dorm? The administration is claiming that the Youtube comment lead to the search of the dorms, but how? It is possible that they thought the message came from the dorms, but why not address that instead of dancing around the subject? Honesty and transparency earlier on in the handling of this incident could have subverted much of the panic and misinformation that cropped up. How could the university declare that the threat was not "credible" yet still involve the FBI and, for that matter, how did they decide it was not "credible?" I would think that any threat to the safety of the student body should be considered credible, even if it does not seem likely. The language used in the official emails were dismissive of the credibility of the threat - even though the administration has since amended its language. If the situation had "truly been dangerous," I cannot help but wonder what the university would have done. Would we have received an email the day after everything was said and done? I certainly hope not. But, that doubt now exists.

I hope that these circumstances give rise to a conversation about the rhetoric of threats and how campuses should address them. This moment in our campus history serves as the opportunity to teach and to learn - two things I feel are not happening. When we could be talking about what to do if there really was a danger to the campus, we are instead insistently being told that we are overreacting. Rather than talking about the pedagogy of speaking to students in these situations, we are refusing to address the situation in the frank, precise language required. The dialog needs to take place in order for the campus to improve, but it is difficult to talk to someone who does not seem to be listening. I worry because I wonder just what it is going to take to get the administration in all its iterations to not just listen but really hear what the students are saying.

As a note, my particular department has used this situation as a starting point for disaster preparedness. We are going to be working on a system to determine the successfulness of non-traditional classroom assignments and how we might handle disaster situations. I think that is a fabulous start. Hopefully it leads to the conversations I called for above.

I Have a Brother

Recently, I have been meeting a lot of new people. It happens when you start a new job or move to a new place - both of which have happened in my life this month. People, I've noticed, really like to dig deeply into one another's lives as soon as possible. I like to think it is because they want to get to know the "real you," but sometimes... sometimes I think it might have to do with the basic human need to know everything. We're naturally curious, which is a good thing. Sometimes, though, I wish people were less curious about my life. I am generally very reserved; I don't like sharing every facet of my life with strangers I meet. When I do share Serious Things, it is usually with the people I care about most.

Today, though, I have been in something of a pensive mood. I blame, perhaps, the fact I am teaching about authenticity in my honors English classes. My students are probing what makes an authentic identity and how we can see the boundaries of falsehood in our own lives. And it got me thinking about how much of a liar I really am.

You see, when people ask me if I have any siblings I lie. I tell them I am an only child. Which, for fifteen years, was true. My parents were never able to have any other children, and I spent most of my formative years solo. In many ways, being an only child was good for me. My imagination filled in the gaps left by a lack of friends, and I was never short on ways to keep myself busy as a child. I did not have to share my parents with anyone else, and they were able to help me navigate the treacherous waters of being disabled without shortchanging any of my siblings. I was even able to develop fantastic relationships with both of my parents, because I was able to spend so much time one-on-one with both of them. My parents were, for most of my life, my only real friends.

When I was fifteen, my parents adopted a little boy named Philip. He was ten, and he genuinely looked like an angel with his big dark eyes and soft blond hair. I was so excited. All my life, I had prayed and prayed to have a little brother or sister. I knew that I would take good care of them - that I'd be the perfect older sister. I promised God that I would protect them from bad mistakes, be their friend, and never pick fights with them - if only He'd let me have just one sibling of my own. It was, for many years, what I wished for every birthday when I blew out my candles.

But Philip was not the sibling my tender heart had dreamed of.

On the rare occasion I own up to having a brother, I preface it with, "I have a sibling, legally speaking, but I don't really claim him." Before any sort of association can even begin, I try to cut ties with him. It makes me uncomfortable to even think of him as my sibling. He might share my last name, but does that really make him my brother? You can see how I split hairs on the subject. I often follow up my distanced introduction with an explanation of how messed up Phillip (as he now spells his name) really is: "He has a laundry list of issues so long I can't even name them all. You know, schizophrenic, bipolar, fetal alcohol syndrome, sociopath..." Most people respond with genuine concern, and some even go far enough to proclaim that they understand my hesitance to claim him. After all, who would want a monster for a brother?

Whenever I read the New Testament, I struggle with all of the references to brothers. Matthew 5:22 is particularly aggravating: "But I say unto you, That whosoever is angry with his brother without a cause shall be in danger of the judgment: and whosoever shall say to his brother, Raca, shall be in danger of the council: but whosoever shall say, Thou fool, shall be in danger of hell fire." It bothers me so much because ... I have spoken contemptuously of my brother, and I have very openly called him an idiot, fool, and a waste of space. In fact, one of my favorite rants (for a time) was that the entire world would be better off if my brother were dead. Sometimes I still go off on that rant.

Yep.

It has taken a lot of work to be able to even begin to come to terms with Phillip. My feelings about him didn't just appear, fully formed and unfounded, one night while I slept. He legitimately caused a lot of issues in our home. My best friends, my parents, suddenly weren't there for me when I needed them the most. I spent several years in an abusive relationship because I felt like my parents were too busy dealing with a psychotic son to need to be bothered with my "little" problems. Phillip also did everything he could do to destroy my parents' marriage: Every night he would try and turn them on each other. Our home literally became a battleground. I felt homeless. It got to the point where I lived each day thinking, "Today I'm probably going to die. And I don't know if anyone will notice." He tried to kill me on multiple occasions, we celebrated my sixteenth birthday him trying to beat my mother to death, and he still haunts my nightmares.

But.

I have come to realize that he is still my brother. His mistakes - his choices - will come back to haunt him some day. It may not be until he stands before the seat of God facing judgement at the end of time, but eventually Phillip will realize the damage he has done. But those mistakes do not make him any less my brother. The important thing I've learned is that ... I can love him as I love any son or daughter of God, but I do not have to let him into the inner sanctum of my heart. I let him in there once, and he ravaged the depths of my soul with the outpourings of his demons. But he is still my brother. I should not - cannot - hate him. If I do, I am no better than he is.

So, I have a brother. His name is Phillip. He's five years younger than me, and I love him (to a point). Right now he's trying to get a job and be a productive citizen, which is progress for him. He's got a lot of demons, and we've got a lot of bad blood between us. But, I hope some day he'll get his life figured out. I just don't talk about him because it hurts too much. He was supposed to be my ally, my friend, my little brother... but instead he was a nightmare made real. And I've never really bounced back from that disappointment. I hope, with all of my heart, that my children never experience what I have gone through. I hope that their siblings are everything I did not have, and I hope they cherish the relationships they have with one another.

If you have a sibling, be grateful for them. I know you may fight and have days where you just can't understand why they'd do something you think is so stupid, but ... they're still yours. When your parents die, whose shoulder are you going to cry on? When you have your first child, who comes to the blessing? When you feel alone or need help, who do you call - knowing they will answer? Ten cents says it's your siblings. I wish I had that.

Ichthyosis: Stupid They May Say

When I was younger, I did not really like to participate in sports. Running often left me overheated, football was a series of painful scrapes, and horseback riding rubbed the insides of my thighs raw. I had always dreamed of fencing - even with my physical limitations. There was something in the perceived elegance of sword fighting that I could not resist. And, let's be honest, being able to use a sword was just plain awesome. In junior high, I met a boy who was part of the local fencing club. He convinced me to drop past and see what a typical evening was like. I agreed to come past that Saturday, which just happened to be the day after the fifth Harry Potter book was released. So, I hauled myself, my best friend Kylie, and Harry Potter and the Order of the Phoenix to the fencing club that Saturday morning. I fell even more in love with the sport than ever.

Eventually, my parents agreed to let me give fencing a try. When I showed up for my first lesson, the coach - a brilliant woman named Julie - took one look at me and frowned. "Are you sure you want to do this?" she asked. I assured her that I would know if I was pushing myself too far and that I would be fine. I was lying through my teeth, of course, but I did not care. I had to give it a try. The first lesson was pretty basic: How to move like a fencer. Amy, one of the few women in the club, showed me the strange, squating stance used throughout the fencing world. I sank down into it, and she was confused. Rather than standing flat on my feet, I was perched up on the balls of me feet - more like a ballet dancer than a fencer. She ordered me to be flat-footed, but it turned out to be a hopeless struggle. My skin has always made it difficult for me to even walk flat-footed, so I will often just walk up on my toes. This phenomenon is relatively common among people with EHK, some even call it the velociraptor gait. My strange fencing stance earned a lot of comment from the other fencers, and I even earned the name "Jackrabbit" for the way I would bounce around on my toes. After the lesson, Julie fixed me with her eagle eye. "So, you want to come back?" she asked. Without hesitation, I told her I would be back the next week.

Fencing presented almost more challenges than I knew how to deal with. Heat became my number one enemy, since the thick kevlar armor all but roasted me alive. I quickly developed a system of soaking the back of my jacket's neck and carrying two bottles of gatoraid to each practice, which worked well enough. During the summer, I would even sneak an ice pack under my chest protector, just to keep me extra cool. If nothing else, I became very sneaky. Another challenge was the friction. When a fencer would hit me with the tip of their weapon, sometimes it would create enough friction that my skin would simply slough off. My skin does this instead of bruising, kind of as a deflective mechanism. More often than not, I wouldn't even notice how many hits had peeled off my skin until the end of the night when I took my jacket off. Sometimes, after a particularly brutal bout, my arms would be a series of cuts - sometimes even my legs and chest falling victim to the same treatment. Competitions proved even more exciting, though, since the fencers I came against were no aware of my skins peculiarities. During a team match, one fencer hit my arm with particular vigor (by accident). I shook it off and the match resumed. For some reason, the other fencer was incredibly distracted, and I easily won the match. When I went to unhook my weapon, though, I looked down at my arm. The entire sleeve was soaked with blood. My coach and teammates rushed over to me, asking if I was alright or needed a doctor. Carefully, I stripped off my jacket and looked at the five inch gash running up my arm. "It's fine," I said. "Just a scratch." Without looking back, I walked into the bathroom, washed off my arm and the jacket, and returned to the match. Every time I went up to fence that day, my opponents treated me like I was made of glass.

Ultimately, fencing was one of the best and worst decisions I made, growing up. When I finished my three year fencing career, I was in peak physical condition and could fit into size six clothing. I had loved the challenge of it, but ... after a time I had realized it was taking up too much of my life. Forty to sixty hours a week fencing was preventing me from working on my schoolwork like I needed to, especially since I was entering my final year of high school and wanted to get into college. And, realistically, it was taking a toll on my health. The fencing equipment would need frequent cleaning, otherwise I would catch a staph infection or some other illness. If someone came to the club sick, I was the first person to catch whatever they had.

Taking on sports when you have a disability really is a fantastic challenge. If you ever look at a sport and say "I wish I could do that" I would suggest trying it. You never know what might happen or whose mind you might change.

Ichthyosis: Oceanic Misadventures

Living with my skin disorder can be a bit exciting, particularly when I go on vacation. This past week, for instance, my dad and my friend Kylie went with me down to the Gulf of Mexico. I had never been, even though I've lived only four hours away from it for the past two years. The ocean has never been one of my favorite things (or any large body of water, for that matter), mainly because I have this talent for nearly drowning. For instance, when I was about ten I managed to get caught in an undertow when the water was only up to my knees. If someone were not standing right beside me at the time, I would've been sucked out to sea. Fun, right?

One of my biggest concerns when I travel, though, are the germs. After standing in the Gulf, for instance, one of the first things I wanted to do was wash off my legs. Not only was I unhappy about the sand getting into the crevices of my skin, but I was terrified that I was going to sick. I have caught illnesses from being in the water before, though it more often happens in places like pools or lakes. There were no water spigots on the beach, though, so I had to wait until I got home. The first thing I did when I got inside, though, was hop in the tub and wash off my legs. I think people don't realize how frightening water can be, but most of the worst illnesses I've caught have been waterborne. Scary stuff.

The Missing Link

When people give me funny looks in the grocery store or whisper behind my back, I don't think much of it. Not anymore, at least. Growing up with a rare skin condition makes life, well, different. I would imagine few of you have had people take one look at you and declare, "You have no right to live." Sadly, I have had people do that to me. Not the best experience in the world, but not the worst either. I look at my skin as an opportunity rather than a curse, which has made it a lot easier to live with.

For those of you who are unfamiliar with me (or my skin), let me give you the "debriefing." I have a genetic condition called ichythosis. Or, rather, I have a form of it called epidermolytic hyperkeratosis. To give you an idea of what my skin looks like, here is a little video I made during undergrad introducing my skin.



This month is very exciting for me, because it is Ichthyosis Awareness Month. What this means is that people all around the world are going to celebrate and share their stories about living with ichthyosis. Awesome, right? I am going to try to get on board as much as I can. Unfortunately, due to graduation and moving 1800 miles this month, I won't be able to participate in the fundraisers and such going on around the country. But, I wanted to do what I could to help. So, each day I am going to try to write a blog post sharing an experience, however short, related to my skin disorder. For instance, tomorrow I am going to tell you about what it's like to teach with ichthyosis. I am going to try to do this all through May. Fingers crossed!

My story for today is going to be very short: The only time I got a sunburn. All my life, I have marveled at people who have turned various shades of red when left out in the sun for too long. From the lobsters to the blushers, I was fascinated that their skin changed color - that they could burn. I had never, in all my life, experienced anything remotely like it. My skin disorder makes it so I can't burn: it's too thick. One week, though, I spent almost all my waking hours outside. As usual, I did not use sunscreen - never have, since my skin doesn't allow uv rays to go deep enough to be a problem. At the very end of the week, I looked in the mirror and noted (with pleasure) that the very tip of my nose was a bright pink. I had burned! (Almost.) It was my very first sunburn, and I was proud of it. All that next week I showed people my burn, even as it faded away. I've still yet to burn again, and part of me is somewhat grateful for that. After all, sunburns sure look painful!