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!

You Are My Sunshine

When I was a little girl, I remember going to my great grandmother's house. I would play among the rows and rows of irises - pretending I was a princess or a fairy or even the hero of my own story. Sometimes I would crawl through the hole in the fence and play under the pine trees in the neighbor's yard, and Dick Christofferson would frequently humor my proclamation that his trees were the perfect fort. Most of all, though, I remember my grandfather and my great grandfather.

My great grandfather, Merlin "Jay" Hunt was one of the most interesting men you could ever hope to meet. He traveled the world (taking his eight children and wife with him) and went on the most amazing adventures. I frequently tell my friends that Great Grandpa Hunt had to be the inspiration for Secondhand Lions, because Hub's story is so much like his. As a young man, Grandpa Hunt was known as "The Arab" while in Egypt. He had become so tanned while in the desert that he appeared to be more native than American. One day, dressed in the older style of uniform, he went into a city. The native soldiers saluted him, and one of the men my great grandfather was with jokingly said, "They think you're one of them." After that, the nickname of The Arab stuck. My great grandfather also helped design airplanes - some of which I have had the chance to see in person. He loved to tell stories about them and about flying. But those are not what I remember most about him. I remember going to visit him in Bountiful, spending the entire afternoon listening to him tell stories and listening to him play. Three of his most prized possessions were his guitars, which included one of the original thirteen electric guitars. Two songs were a given any time we came to see him: "The Big Rock Candy Mountains" and "You Are My Sunshine." In many ways, I think he liked "The Big Rock Candy Mountains" because it was both funny and a little wicked - much like him. He would sometimes pretend to forget the lyrics, just to make me sing along with him, and he'd always smile so big when I would join in.



"You Are My Sunshine," though, is ... really special to me. One Thanksgiving - the last time he came down to my grandmother's house for a holiday - Great Grandpa Hunt got all of the great grandkids, the grandkids, and his kids together. We sat in a big circle and sang "You Are My Sunshine" together. At that moment, I knew we would always be a family... that some day we would be able to sit like that again. After that, I went home and learned all of the other verses, just so I could sing it with Grandpa Hunt the next time I saw him. His condition got worse after that Thanksgiving, but I was able to see him again. We sat down together, and he played as long as he could for my dad and me - we'd gone to see Grandpa Hunt together. And Grandpa Hunt asked me to sing for him. So, I sang him all the verses of "You Are My Sunshine" while he played for me. He told me he was so proud of me, that he was so proud of my singing; I can't even think about that conversation without bawling. His hands quickly became tired, though, and he could not play all of his usual songs. But, we sat and talked for hours - mainly about his adventures and also about fantasy books. He even lent me Robin McKinley's The Blue Sword, because he and I shared similar tastes in books. I never got the chance to return the book to him, because he passed away before I got the chance. I lost him just after my first semester in college, and I was devastated. My great grandfather is my friend, and I can't wait to be able to sing with him again some day.

When my Grandpa Bruce became sick, I did not know how to handle the news. I'd lost people before in my life, but I had never faced watching them die. He tried to stay upbeat - frequently pretending to be less tired than he really was - and he hated to see me sad. Often, he and I would sit and just .. talk. I loved the sound of his voice - right down to his frequent interjection of "and that" between words (a subconscious tick). Just before I started college, he and my grandmother recorded messages for me on the digital recorder my mom bought me for lectures.... Messages I still have saved, because I can listen to it when I miss him. He was so proud of me for going on to college; Grandpa would always tell me that I was just so, so smart. He always believed that I was going to do amazing things and would always brag to anyone who'd listen about me. But ... more than my brain, Grandpa really loved my singing voice. Any chance he got, he would talk me into singing for him. He loved asking me to sing his favorite hymns, like "Because I Haven Been Given Much" and "God Be With You Til We Meet Again," and always asked me to record a cd for him. During my first semester of college, I finally had access to the right technology and recorded four songs for him, including one I had written for him and my father, which I called "Nephi's Psalm." Grandma told me he loved to play it (even though it wasn't nearly the quality I wanted it to be). I was glad I got it to him in time - I would have always regretted it, if I hadn't.

As his condition got worse, it was so hard to watch him fade away. There would be times where you would be talking to him and he would just forget who you were or he'd suddenly fall asleep. The last time I spoke to him before he was placed in the home, we were talking and he suddenly forgot himself. We were alone together - everyone else was out of the room - so I sang those two songs for him. I didn't know what else to do. As I was singing, our eyes met and it was my grandpa looking back at me. I started to cry, and I couldn't stop. He held out a hand to me, which shook, and I clung to it with all I had. I knew he was dying and there was nothing I could do about it. I was going to lose one of my best friends. But I knew without a doubt that he loved me with all of his heart. When he passed away that March, I was asked to sing at the funeral. Grandpa wanted me to sing his song for him, and I never could have refused that request. Singing that day, I could feel his love surround me, and I was filled with the deepest longing to go home. I was not sad that my grandfather was dead... I just missed him with all of my heart. I still miss him. He was not able to see me graduate from college, my kids (if I ever have any) won't meet him, and he'll never get to interrogate my future spouse. But, I know he and Grandpa Hunt are with me. And I know I will see them both again, so long as I make the right choices. When I sing, though, I feel that much closer to them. I know they're both listening.

So today, five years after the loss of both Grandpa Hunt and Grandpa Bone, I want to leave you with something special. This video includes the message my grandfather recorded for me and the version of his song I'd recorded for him before his death. Please forgive the poor quality - someday I hope to restore them both to something better.



I just want to add my testimony to my grandpa's: I know God lives, I know the church is true, and I know we all have the ability to be with our families for time and all eternity, if we live worthily. I want to live each day in such a way that I will be with my family again, so we can sit in a great big circle and sing together. It's a work in progress, but hope keeps me going. There are no words to express my gratitude for the Gospel of Jesus Christ - without it I would be lost. In the name of Jesus Christ, amen.

Do Unto Others

I have never been the sort of person to shy away from difficult topics. In fact, I am often one of the first people to jump into the discussion and offer my thoughts. Many times, I do this in order to make my position clear, to avoid being misunderstood. Life, in so many ways, is a series of mixed signals that eventually work out into sense; I prefer to get to the sense sooner rather than later. Today, though, I have been hesitant to express my feelings on the latest debate to tear its way across the country. I have friends on both sides of the conflict - people I respect and love. At the same time, though, I realize I have a duty to speak up. If I remain silent, I feel as though my stance could be misunderstood.

I am a devout member of the Church of Jesus Christ of Latterday Saints, which you might better know as the Mormon church. The leadership of my church released the following statement concerning the Human Right's Campaign's petition and same sex marriage:



I sustain and support my church leaders. I sustain and support the teachings of the church. I do not support same sex marriage nor do I support extramarital sex. The Lord has dictated that marriage is between a man and a woman, and I agree with that. These beliefs, however, do not mean that I devalue my friends who chose the homosexual lifestyle. Many of my homosexual friends are wonderful people who lead good lives. I believe, though, that their choices place them in opposition with the dictates of our Heavenly Father. I feel the same way about my friends who drink, do drugs, or participate in heterosexual extramarital sex. Sin is sin. Hopefully my friends and family will be able to respect my opinion and understand that it comes from a place of deep reflection, consideration, and compassion. My beliefs do not mean that I love you any less - quite the other way around, actually.

Baby Mine

My mother and I have had something of a tempestuous relationship - it happens when you have two strong Irish-Italian women in one household. As I have gotten older, though, I have come to treasure her more and more; she means the world to me. She is my friend and confidant, cheerleader and hero; mother and guide.

When I was born, the doctors had no idea what was wrong with me. I was rushed into the ICU, and I was placed in an incubator. My parents were unable to hold me; in fact, all they could really touch was the little space between my eyebrows. The nights my mother stayed in the hospital - recovering - were difficult for her, because all of the other new mothers were holding their babies. She could not even be in the room with me. My mother told me how difficult that was and how much she cried. I was their miracle baby, but the doctors were not certain I would even survive.

Because of that experience, my mother has a very large soft spot for the song "Baby Mine" from Dumbo. In fact, watching Dumbo is the first memory I have of my mom crying - it makes her bawl like a baby. As I've grown up, I have come to realize that "Baby Mine" was how my mom felt about me during our hospital stay. For the eleven days I was in the hospital, my mom could not hold me - just touch a little bit of me and pray I would survive. Dumbo's mom goes through something very similar, and it resonates with the pain and sadness my mother felt.

I love my mother very much, and I am so glad to be her baby. Even with the rough patches we have gone through, she is always the first person to comfort me and the first person to cheer me on (usually by shoving Dad out of the way to do so). I am so blessed to have my Mommy mine.

Birthday Bash

So, I normally hate celebrating my birthday. Well, that's not quite true. I used to love celebrating my birthday; I would look forward to it as soon as Christmas was over. After Phillip came into our family, though, I came to fear my birthday. It seemed like every November 10th something would go horribly wrong - I couldn't even have a birthday party without a disaster happening. Eventually, I got to the point where I refused to let anyone acknowledge my birthday, and I would have nightmares about all the things I thought would go wrong.

Over the past three years, I have been trying to work past those fears by trying to celebrate my birthday. It's been ... rough. Last night, though, major progress was made. Several of my friends and I went to see Wreck-It Ralph, which is about the geekiest movie I have seen in a long time. We hooted, hollered, and laughed throughout the entire movie, and not once did I feel afraid. It was like being a kid again: I was excited, happy, and animated. After, three of my friends made me a birthday dinner (cake included). I ... have never been so surprised in all my life. (I'd never tell Nathanael, Kimmie, and Katie, but their offer to make me dinner made me cry.) Then, we played Cranium and just had a really marvelous night.

By the time I got home, I was too tired to have nightmares. And, really, it was one of the best nights I have had in a very long time. I am so blessed to have the friends I do, and I think (just maybe) birthdays can only go up from here. This year is going to be awesome.

Thank you Lian, Laura, Katie, Kimmie, Nathanael, Bethany, Katie, Caitlan, Nicole, Lauren, Jessica, Brandee, and all my other wonderful grad school friends. You have made one of the hardest times in my life an amazing adventure. To my other friends and my wonderful family, thank you for loving me and sticking with me. You mean the world to me.

Seattle Adventures

This past weekend, I was able to attend the Pacific Ancient and Modern Language Association Conference in Seattle. I was presenting a piece of my thesis on the Literary Monster as Message panel, which was pretty exciting. As per request, here follows my brief recital of my adventures.

When I left home, it was three in the morning. My flight left before six, and I had to leave myself enough time to make the hour drive. I made it easily through security, and in no time I was settled on the plane. I hate flying--it always makes me feel sick--but I was so tired I did not care. To say I slept like a rock would have been putting it lightly. It was well into the afternoon by the time I made it to my destination (I had a three hour layover in Houston) and found myself making my way towards the light rail. I ended up in the company of an older woman, who had come to Seattle to see her son; I helped her navigate the rail system, and my own worries about traveling in a strange city were placed on the back burner.

Getting off the train, I found myself in a ... difficult position. I had been unable to use my wheeled luggage, because its handle had broken, and so found myself carrying both my laptop bag and my carpet bag a mile through the city's heart. Every step seemed to be moments away from danger, since so many eyed my possessions as though evaluating their worth and ability to be stolen. By the time I arrived at Hotel Five, I felt dead on my feet. Check in went quickly, and soon I was collapsed in my room. But, as such things always go, I had to find food. I eventually made my way to a nice little Mexican restaurant, where I ate a spicy beef burrito. (For those of you who know me, this instance is particularly stunning, since I am known for loathing spicy food.) When I made it back to my hotel room, though, I was surprised to discover that someone had hacked my Paypal and used $120 of my money to buy Starbucks Pumpkin Spice Lattes. I was upset almost beyond consolation. (I am still waiting to hear back on whether or not I will get my money back.)

When I finally fell asleep, I spent the night tossing and turning as nerves ate at me. In the morning, riding the bus proved to be an adventure. Drunken stumblers, vomit, and even someone smoking weed added a distinct element of local color to the ride. By the time I arrived at the conference itself, I was expecting who knows what--perhaps more trouble. After the first panel, I was able to meet one of the other members of my panel, and we decided to get lunch together. We talked about monsters, phd programs, and the eccentricities of Southern life. It was fun. I felt better about my presentation, if only because I would not be in a room of total strangers.

My actual presentation was, in many ways, laughable. Since it was the first panel on the last day, no one came. Well, that's not true. The moderator, the head of the panel, another presenter's husband, and one other scholar attended. I felt ... let down. I had expected this conference to be as magical as my visit to the Ohio Valley Shakespeare Conference, but it wasn't. It was proving to be an entirely different experience. When it came to lunch, Katie and I decided to go to lunch together. While I had been waiting for her, though, I noticed another girl. She was talking to someone about Middle English, but was soon abandoned. I decided to invite her to lunch, and she was so relieved. We ended up hitting it off, and she is also applying to one of the programs I am looking at.

By the end of the conference, I had gained new and exciting friends. More importantly, though, I had discovered an idea. I am going to try to function as an editor a book--a collection of essays on a particular subject. We'll see how it goes or if I'm just plain crazy. A pending publication, though, would be an amazing standout on a phd application.