Diseases, drugs and now...a cure

I actually have some good news to share on the Andrew being sick front!
Some of you already know about my brother, Andrew, and his diseases, but I'll give a brief overview for those of you who don't.

Typical teenage boy, so NOT enthused.

Andrew was born with Chronic Granulomatous Disease (CGD), the same illness that my older brother, James, who died in 1988 had. CGD tends to run in families although it is VERY rare. It's estimated that only 1 in a million people have it. Andrew's taken medicine for CGD his whole life and been hospitalized many times over the years. He knows what it's like to be a human pin cushion very well--I couldn't even guess how many times he's had blood taken.

At the end of 2008, we found out he also has Celiac Disease, which means he can't eat anything with gluten in it (i.e. anything containing wheat). Thankfully, living in a major metropolitan area, we can find good gluten free food pretty easily. Pizza Luce, one of my family's favorite restaurants, even has an excellent GF menu. They justifiably advertise as Minnesota's Best Pizza. So, Andrew adjusted to his new diet, gained a lot of weight and grew like a weed.

Then over a year ago, he started complaining about his gut hurting. It just got worse and worse, he could barely eat and lost a lot of weight. There were a bunch of open sores in his mouth. The doctors found out his intestines were very inflamed and diseased. Pretty much from his mouth all the way through to his anus, he had inflammation and ulcers. One doctor said that Andrew should have been rolling around on the floor screaming, that's how bad it was. He was diagnosed with Inflammatory Bowel Disease (IBD), and his main doctor referred him to the National Institute of Health (NIH) in Bethesda, Maryland.

CGD is rare, but Andrew's doctor is the world's authority on it and sees many patients with it at Children's Hospital here in Minneapolis. Andrew isn't her only patient having stomach and gut issues either. NIH is interested in studying these patients, because they're presenting similar symptoms. People with CGD used to not live very long, but now with medical advances life expectancy is much longer than it once was. The researchers are curious if these gut issues are a symptom of CGD or caused by the life long use of the drugs taken to keep healthy.

So, Andrew and my Mom have flown out there several times now since this summer, and he's been getting different drugs to help with the inflammation in his gut. The awesome thing is everything is paid for, it's cutting edge research, so my parents don't have to try to figure out how they're going to afford all the expensive drugs Andrew's taking. He's slowly gained a tiny bit of weight, although his guts are still messed up.

The most exciting bit of news is that a cure for CGD has been discovered! We'd heard years ago of bone marrow transplants being a possible cure, but at the time it was way too risky and dangerous, with a very low success rate. It was not something to be considered except as a last resort.

They have now successfully done bone marrow transplants for many CGD patients with great success! Another young man with CGD from Minnesota actually just had a transplant this past summer at NIH and is now cured. My parents have decided to move forward in the transplant process after much investigation and prayer. We've known about this since the summer, but were waiting to see if a matched donor could be found before we started sharing about it. The best donor is a sibling, because they're more likely to be an exact match.

My sisters and I had our blood drawn, but that didn't get done right. So then we did cheek swabs...which weren't the right size for the testing machine. We did the swabs again with the correct sized ones this time. We just heard back yesterday: I'm a PERFECT match for Andrew!! And apparently Leah and Hannah are exact matches to each other, so they know who to ask if either of them ever need a kidney.

We're hoping to do the bone marrow transplant next summer out at NIH. Thankfully, they will not need to hack into my hip to harvest the bone marrow. I'll write more about what I'll have to go through as I get more information. Even if they had to break my leg, I'd do it anyways. Andrew will be cured of CGD! Even five years ago, we couldn't have fathomed that there would be a cure.

For those of who have been praying over the years for Andrew to be cured, thank you. God has answered your prayers for a cure. I like to say, sometimes the Lord heals in miraculous, spontaneous ways, and other times He works through the knowledge and expertise of gifted doctors. It's amazing either way.

Rock you like a migraine

Migraines suck, I'm just going say that right off the bat. I tend to get at least one, sometimes two, killer ones in a month. If I try to push through it and keep going about my day, it just gets worse. Like a sneeze, I can feel it coming. It builds slowly, like a river gradually flooding its banks until it starts sweeping houses away. Tylenol or whatever doesn't usually help too much. I find a cold washcloth on my face is more effective for dulling the pain. I just have to ride out the pain until it's over.

I got a doozy of a migraine yesterday at work. It usually takes me two days to really recover and feel normal again. The stabbing pain goes away, but a dull, low-grade headache lingers for a day or two. I don't know about other people, but when I get a migraine, I can't do anything else but lay down and wait for it to pass. Light and sound don't bother me too much actually, I just get sick to my stomach and feel like I'm going to puke. I also get really feverish and feel like a menopausal woman--too hot, too cold, too hot again. My face throbs like I have backed up sinuses even though I don't. Pain sparks behind my eyes, feeling like I got kicked inside my brain. If I'm already feeling sick and try to keep going about my day, hoping it will get better, I'll just get slammed with a tsunami of migraine--like what happened yesterday.

I had a sore throat, which started feeling a little bit better as the day went on, but I started feeling the swell of an oncoming wave of head pain. The store was too busy for me to leave, so I just dealt with it. When I was done for the day, I didn't feel too bad actually, but once I got home, I couldn't do anything but lay down. I couldn't eat or drink anything, just the thought of anything in my mouth made my stomach churn. My appetite still isn't back yet today. And my throat is worse too--I got some tea and a bagel down and that's been it so far. My head goes wonky and the rest of my body follows.

It just takes the wind out of me. I can't force myself to do anything, because the headache will come sweeping back if I try to do too much. I've learned the hard way that if I already have a slight headache, I can't try to shove more things into my day. I finish off whatever it is I'm doing and scale back the rest of my plans for the time being.

Going to the movie theater or watching TV in a dark room are guaranteed headache makers for me. So is drinking too much coffee, which thankfully I don't even like that much anyways. The weirdest cause for a rip roaring migraine I discovered while getting physical therapy several years ago: The physical therapist was testing my flexibility and had me on my back with my head hanging off the edge of a table. She tilted my head down and to the right, and I almost immediately got dizzy and sick feeling. Apparently that was odd in her experience, also because it didn't happen when my head was to the left. I'm just a source of medical mysteries, I guess.

I can't imagine getting migraines constantly--thankfully, this usually happens to me only once a month. But it knocks me out of commission for a couple days so it still sucks. Hopefully by tomorrow I'll be back to full strength and ready to shelve books at work.

Year in review part 3: Me

So far I've shared about family and friends (and church). Now it's onto a more personal focus, what's been going on with me this year (I wanted to keep the whole alliteration thing going with the titles, because I'm weird like that, but I couldn't think of a good word that starts with F for this post).

I started out the year with an art show. Four of my paintings were on display at Coffman Union at the University of Minnesota. My art was chosen for all the promotional stuff, which was pretty awesome. It's really neat to see a big ol' poster with your work splashed across it. The art shows continued, February being the best month, when I had art in FOUR shows at the same time! I had work displayed in an upscale salon, a tattoo shop, restaurant, and an actual gallery. Beloved Studios (the tattoo place) left my paintings up from February until August! I didn't have too many other shows this year, but I did get to road trip a little for one. In October, I drove up to the Iron Range in northern MN with all my Doily Ninjas to be part of a street art show. My grandparents live just two minutes from the gallery, so it was fun for my Grandma to get to see my art in person. My grandparents also had more to brag about when pictures of some of the Doily Ninjas got published in the Mesabi Daily News. Thanks, Grandma, for the newspaper clippings--I will totally hang on to those!

Any press is good!

I got a really good response from people, probably because I gave away a few of the Ninjas. The Doily Ninjas are my most successful series so far; it's been really fun to see where they end up--my Ninjas are more well traveled than I am! Someone brought a Ninja to Japan; Hannah's taking one with her to New Zealand, and another friend is packing one when she and her family go to Cameroon next month. Just remember to take pictures for me, guys! 

The Doily Ninjas have been extra fun for me, because I always planned to give them all away. I got the wood shapes for free, and I just like to share art with others. Sure, I like to sell work as well (money is good), but part of my artistic philosophy is that I give some stuff away too. God gifted me with a passion and skill for art making, I like to give back by not clinging so tightly to everything I make. Beauty is meant to be shared. 

Speaking of art, I just applied for graduate school this month. If I get accepted, I'll be attending the U of MN next fall for a Master's in painting. I feel like God's telling me it's time to start a new chapter in my life and focus more on what I really want to be doing. Now that my application is out of the way, I'll be gearing up to apply for more art shows after Christmas. 

The biggest thing this year was getting my tattoo. It's been something I'd been thinking about for a long time and finally had the money to do it right. I'm so happy with it, and it just feels right to have it there now. It's a visual aid for a great story about Who God is and what He's done in my life. In the coming year, I look forward to sharing that testimony more. God has really been impressing on my heart that I need to not give into fear, but be bold and courageous, standing up and proclaiming that I am who I am today because of His great love. Without Jesus, I would be lost, broken, alone, bereft, in darkness and hopeless. I never want it to become this trite, faky smile story. It's not like, "Everything was horrible, then Jesus showed up and now it's all perfect!" *cheesy grin* Life has its ups and downs, and God is there with me through it all. 

Another cool thing this year: my sisters and I went on a great American road trip across the country. We went from MN to Omaha, Nebraska (where our aunt and uncle live), then straight through to Tucson, Arizona. It was just the three of us and my red Elantra, zipping through mountains and desert, there and back again in a little less than two weeks. It was alternately draining and relaxing. Our friends in Tucson spoiled us and played tour guide--I definitely want to visit again! I love road trips, and there's just so much to see in the Southwest. Note to self next time: don't try to drive straight through the night, pay the money for a hotel. It was really hard to come back to the humidity of the Midwest after the glorious dry heat of AZ. If I didn't like MN so much, I would move there right now.

I'm going on three and a half years at Half Price now. It's been a decent job with some nice benefits--they take pretty good care of their employees. I'm grateful to have great health insurance, that's for sure! I appreciate having such a flexible job when it comes to getting days off. Because of that flexibility, I've been able to do as many art shows as I have and volunteer as well. There's not too many jobs you can just take every Tuesday off to go volunteer somewhere. I really like that I can do that. I also love the fact that I'm surrounded by books every day and get paid to read. I've learned so much from all the awesome books I've come across at Half Price. I always said when I was growing up that I wanted to work at a bookstore someday. 

But lately, the store's been feeling smaller, claustrophobic at times. There's an itch, I guess you would call it, a quiet longing for something more. A little voice whispering in the back of my mind as I go about my day: "Don't settle. Don't stagnate, Elisabeth. You will not be happy or content to stay here another three years." It's scary though, because I don't know what's coming next. It's safer to just settle into neutral and not strive too hard....but it's not the best way. I want the less traveled road, the journey through uncharted territory. I can feel it's time for something new--God's been poking me most of the year to get ready. He knows that I like being comfortable and am not a huge fan of big life change. 

And if I'm coming across as all uber-spiritual and faith-filled, because I mention God a lot, don't believe it. I floss more than I read my Bible. If I want to read something, the Bible is definitely not the first thing that comes to mind. Over the last 12 months, I definitely have gotten closer to Jesus and feel like I understand Him just a bit more...but faith is a never ending journey. I suck at it a lot more than I'm successful. That's one thing I've realized this year: I may have grown up in the church and a Christian household, which means I know a lot about the Bible....but it's much harder for that knowledge to be transformed into application in my life. I don't want to be a Christ follower simply in word. It's easy to talk, that's cheap and easy. The hard part comes when it's time to put one foot in front of the other and actually live out what I say I believe. I think if I focus on following Jesus first and foremost, the rest will get figured out along the way. 

Year in review part 2: Friends

In my last post, I focused on my family and God's grace in our lives over the past year. I'd like to turn now to my friends.
God's been teaching me a lot about what true friendship looks like recently. I need to reach out to others and form new relationships without neglecting the good friends I've already got. I tend to drift away from people after a few years for whatever reason; over this last year, some old acquaintances have come back into my life and our relationships have been renewed.

There's something very comforting about having someone who has known you for a while. You have those shared experiences and old jokes that you still find funny. An old friend doesn't need to dig for conversation topics, things just flow and an hour or two passes before you realize it. They know about your past awkward phases and bad haircuts, and love you just the same. I'm so appreciative of my long time friends. You know who you are, and I'm so glad you're in my life! My heart is fuller, my spirit richer because of your friendship. You put up with my faults and encourage me to be a better person. I love being able to share my weirdness and nerdy self with you. I might not see you for awhile, but we can pick up where we left off and have a grand time when we hang out together.We can talk about silly, shallow, light-hearted things, but we can also be real, deep and open with who we are. I love that. And I love you! I look forward to this coming year and getting to know you even better.

On the flip side, I've had to let some people slip out of my life, because I realized they're just not worth keeping in touch with. The problem with our Facebook culture is that relationships that would have naturally grown distant otherwise maintain this artificial intimacy. You see each other's status updates and Like their cute kitty pictures....but you haven't seen or spoken to them in person for over a year (or more). It's not like you hate them, they're actually pretty cool....but you don't have any kind of real interaction or relationship beyond the Internet.

Facebook is great for keeping in touch with long distance friends--I love that we can stay up to date and keep up with what's going in each other's lives. It supplements other communication. But for those casual acquaintances you wouldn't have kept in touch with, it can become kind of weird. We were friends once or saw a lot of each other at a particular point, some shared experience in our lives. But now? I haven't seen you since high school or whenever. It makes me feel mean to unfriend someone, but I realize I don't need to keep in touch with everybody. I can let them go and not be a bad person.

And some friendships I valued more than the other person and had different expectations for. I know that they don't place the same value on our relationship that I do and that will never change. I just have to accept that and stop trying to convince myself otherwise. It hurts a little bit to realize that and deal with it but it's the healthy and wise thing to do. I don't want to try to believe a lie. Letting go and moving on is the wise thing to do. I need to invest in relationships that are mutual not one-sided.

So, it's been the year of renewal and letting go, but also making new friends, relationships in their embryo phase. As I wrote recently, I finally found a church to call my own. Antioch Community Church has been a breath of fresh air into my life. For many reasons--which I don't need to go into here--I stopped going to church while in college and never got back into it once I graduated. I'd been sporadically attending the church I grew up in, but I'm a different person now and it's not the right fit anymore. I'm thankful for that church family--I grew up there and learned so much. Some of those people are more like family than those I'm actually related to! It's really like having a third side of my family. So this is not a diss to you, old church. I love many of you and will definitely continue to keep in touch. But it's predominantly a church of families and older singles, and I want relationships with my peers too. Also, it's in the suburbs and I feel called to the city seeing as how I've grown up here in Minneapolis.

So, Antioch. I checked it out a few times over the summer and committed to attending it within the last few months. I have never felt so welcomed as a stranger in a new place. I've gotten more plugged in as I've been able to re-arrange my work schedule. I'm hoping to go through their membership class coming up in January. There is something so REAL going on there, and I want to be part of that. I'm really excited to see what this next year will bring as I get to know more people. I feel like I can really share who I am--not just the "How are you?" "Good." "And you?" "Great." exchanges typical of churchy culture. I have gotten a phenomenal response of encouragement and desire for friendship back from sharing just a snippet of my testimony in church. I feel like I can be myself--crazy bright clothes, flowers in my hair and all the rest. I feel no need to hide any aspect of myself or partition off parts that might be unpalatable (part of that comes from getting older and more confident in myself too). For the first time in a long time, I'm excited to get up and go to church on Sundays. I look forward to it! I'm excited to go to community group and get to know people better. So, new church, looking forward to the next 12 months with you.

Continue on to Part 3: Me

Year in review part 1: Family

The holiday season is upon us, and one of its many traditions: the Christmas letter. Usually it's subtle (or boldly overt) showing off: Timmy's soccer team won the championship! Bobby graduated valedictorian! Susy won a gold medal! Whatever. Not that sharing your family's accomplishments is a bad thing, but all the awesome gets lumped into one page or card sent at the end of the year. I prefer to hear about the good things as they happen, to share in the joy. And when crap happens, I want to be there for my friends to help in their time of trouble.

So, this is my Christmas letter/blog, but I'm not here to just toot my own horn and show off how awesome I am. I want to review this past year, the good and the bad, to show how good God has been. On Christmas Eve for many years, I've had a conversation with God that I journal. I reflect on the past 12 months, and thank Him for his goodness and grace in my life. I think about the hard stuff I endured and the joys I got to experience. The friends gained...and lost. I notice when a stage of my life has ended, and thank God for it and look forward to the next chapter. I mull over what the theme of my coming year will be.

At the end of last December, I felt that 2011 would be the year of relationships: forging new ones, renewing and fortifying my existing friendships, drawing closer to family, seeking to know Jesus more personally. And that was the theme for this year in many ways.

I feel closer to my family, celebrating our inside jokes and shared silliness. We revel in being weird and laughing, because we know that life can really suck sometimes. My parents continue to love God, each other and our family, living that out in every circumstance. They celebrated their 30th wedding anniversary this year! I like to sit in the kitchen and talk about whatever with my Mom. I enjoy taking my Dad out to eat, because he's good company too. I'm so blessed to have such loving parents who are so involved in my life and care not just for my physical needs but also spiritual.

Hannah and I continue to share a room, dealing with limited closet space and different definitions of what "tidy" means. ;) Though it's fun to be able to raid each other's clothes when we have "nothing to wear." Hannah is a junior at the University of Minnesota, and will be studying abroad in New Zealand next semester. She's been praying and trusting God to provide all the money she stills needs as she's been filling out scholarship after scholarship.

Leah is going on over four years at Starbucks as a barista. Within the last couple months, she landed a job at First Avenue in downtown Minneapolis. If you don't know, First Ave is one of the premier clubs in the whole country! It's the perfect place to continue pursuing her calling in the music industry. She's also the manager for a band called Cosmonaut. I think God's going to be taking her some interesting places over the next year, that's for sure!

It's been rough year for Andrew to say the least. He's lived with Chronic Granulomatous Disease (CGD) his whole life, which is tough enough. But he was also diagnosed with Celiac Disease in 2008, and over the last year and a half has been battling Inflammatory Bowel Disease. His insides are all kinds of messed up. Much prayer for his recovery would be very appreciated. But no pity please. I don't want to define him simply by his diseases though. He is Mr. Technology: he's a hardcore gamer and wants to work for Game Informer magazine someday. I took him on a tour of my alma mater, Northwestern College, earlier this year...which was super weird for me. I used to change his poopy diapers....and now he's almost ready for college! Craziness. There is hope on the horizon for his CGD as well: a bone marrow transplant can cure it, and we're currently in the process of seeing if one of us siblings is a match. Please pray that one of us is, because that would be AWESOME! You have no idea what that would mean for Andrew, to be cured from this thing he's had to deal with since he was a baby.

My older brother, Nate, just got back from his third deployment to Iraq earlier this week. He's also been to Afghanistan twice. I'm happy he got home safe and sound. We're all excited to spend Christmas with him and hang out. He's going to be stationed in Hawaii for a while, so I might have to go out there for a visit.

For the first time in years, my whole family got to visit with my grandparents earlier this year. It was super fun to have us all there and celebrate my grandma and grandpa 60 years of marriage. I really like hanging out with my extended family.

At the end of May, my sisters and I embarked on a two week cross country road trip. I'm pretty sure that'll be the only time just the three of us travel together like that, and we had a lot of fun. Hannah and I both were sick for most of it, but we didn't let that slow us down. We drove to Omaha, Nebraska to visit our aunt and uncle, then down to Arizona to stay with our dear friends the Barnes family. We had much fun and merriment at their house. It was hard to come home after being so pampered. It was definitely a good time. Along the way, I left Doily Ninjas in every state. Leah was kind enough to document where I left them, and my Facebook is full of their pictures. And of course, we had to have a couple photo shoots too. This is my favorite from the trip. That's Hannah and I jumping in front of an awesome sunset in the middle of nowhere in Colorado.

So my family definitely experienced ups and downs this year, but God has been good and gracious to us. It's exciting to think where He's going to lead us in the next 12 months. I'm thankful for each of them and our deep love for each other. We actually like being around each other (most of the time).

Next up, Part 2: Friends 

Angry eyebrows and old people

I noticed recently that my face tends to naturally slip into a scowl.

Not like Mr. Sparkly Vampire--he's just pouting

I've been catching myself lately with a furrowed brow and my lips turned down. I don't know why either--I don't really have a lot of stress in my life. I think it's just because I tend to focus deeply on the task at hand or be in the process of deeply pondering something. 

But the reason it bothers me is that as you age, your face sets into whatever expression you make the most. Your wrinkles mirror your life-long demeanor, not just the face you present to the public.

Who's got a big stick up her butt?

Who's been laughing at himself for years?

I'm aiming to be a happy, joyful old person, and I want my face to reflect that. Old ladies come into the book store where I work all the time, and they just look like they've been sucking on lemons their whole lives. They also have waaaay to much makeup on and seem to be trying to pretend that they're still in their 20's. I'm sorry, but a woman in her 60's shouldn't dress the same as a 22 year old. It just looks silly and desperate. 

Guess what? I embrace the fact that I'm going to get old someday. I've already decided I'm not going to color my hair when it goes gray. What's that Bible verse? "Gray hair is a crown of glory." Yeah, I like that. 

Anyways, I don't want to look like those sour old ladies. I want my wrinkles to reflect my life of walking with Jesus. And that life might not always be easy or fun, but as a Christian, I can be content no matter what my situation. I don't want eyebrow furrows and frowning lips--I want laugh lines...lots of them. I want my face to show that even in the tough times, I still chose to look for the silver lining instead of focusing on all the dark clouds. (And that is how I currently view my life.)

 I seek to age like my parents, who have lived through many trying, dark times in their lives...yet it's common to hear them bantering and laughing with each other. They could be angry, bitter, cynical, and have every right to be. But what kind of life is that? They've shown me that a life of complaining and bitterness and grudge-bearing leads to nothing, even though it's easier to go that route. To choose happiness and joy takes a little more work, but is ultimately more fulfilling. I think one of the reasons my parents have aged so well is that they choose to make much of the good things in life. 

30 years of marriage--they still LIKE each other.
This picture epitomizes who they are.

I want to reflect that shared worldview. I don't want to be sour but joy-filled. Positive not grumpy. Happy by choice not from naivete. I want to age gracefully, not desperately trying to hang onto some ideal of youth. Just like the seasons of the year, so people transition into different stages of their lives. We need winter just as much as summer, does that make sense? 

So wrinkles? Bring 'em on. I just really don't want angry old lady eyebrows. 

I like Jesus...but not all his followers

"My own feeling...is that I would probably get along ok with Jesus himself if I met him, but some of his followers really don't get what he was trying to say."

This just...struck me...in such a deep place. Read it again, and mull over it a little bit.

I'm commissioning a piece from an artist on Etsy, who happens to be a practicing Pagan. This is a quote from her in an online conversation we're having to iron out the details of the commission. She was very upfront with me about her beliefs, which I appreciate and respect. And I've been just as open about my faith and what it means to me. 

And that's so rare. Why is that we're not supposed to talk about faith, the beliefs that we hold so deep and direct our lives? As if, somehow, we can't handle hearing that someone has *gasp!* a different worldview than we do? Like I'm suddenly going to lose my faith in Jesus, because someone told me they hold a very different set of beliefs than I do? I look at interactions like this to spur me on to question and challenge myself. Do I really believe what I say I do?

I was going to post on something else tonight, but when I read that sentence, I had to write something about it. Because it's so true. And I'm guilty of falling short of living like Jesus far too often. Sure, it's easy to point fingers, and rant about how horrible American Christianity can be, how materialistic / silly / wrong / shallow /whatever the church is....but, at the end of the day, I am the church, the body of Christ. We tend to focus on the church as corporate, many people, a group, denominations....but it's made up of a bunch of individuals. Me. You. We become Us and Them when we're gathered together on Sundays and at other events. But in our daily lives, it tends to be just me...you...going about everyday activities in our own little worlds. Making small decisions, here and there, that add up to who I am as a person. 

And is that a woman who loves Jesus? Not in word, because I say I do...but truly, actually in how I live my life, day in and day out? Does my life display what I say I believe? Do I understand who Jesus was and is, and how he said I should live my life if I follow him? Do I "get" what he was trying to say to us silly, lost people? 

"Pick up your cross and follow me....whoever loses his life will find it....blessed are the meek for they shall inherit the earth....you cannot serve God and money....unless you become like little children, you will not enter the kingdom of heaven." Do we really get him?! I mean, so many people try to pin their own agendas onto their version of Jesus, twisting what he said to fit their bullet points. Do I change to fit what he said? It's a challenge to be a Christ follower; it takes sacrifice. Anyone who tells you differently is lying. It's not easy to become like Christ.

I want to "get" him, I really do. But my faith can be so lacking. 

God, give me strength to be like you, because on my own, I will fail. Open my eyes to see, my mind to understand, my heart to soften. Help me to be like you, not just in what I say, but in what I do, who I am.

Current Artist Statement

I just finished my application for graduate school the other day. There was much essay writing and re-writing that went into it. I applied for a full ride fellowship, had to say why I want to pursue a Masters in Fine Arts, what my art means. And I re-wrote my artist statement yet again. I've been doing that at least once a year since college anyways, but this was impetus to really do a good, thoughtful job. 

An artist statement is supposed to sum up in a page or less what your work means, why you make art and what you want viewers to take away from experiencing it. My goal is that everyone can read my statement and understand my art. I don't want it be overly academic and jargon filled. So for your reading pleasure, here's the latest rendition of what I want to say about my art (and yes, it is less than a page, it just looks like a lot): 

Evoking idealized childhood memories, I focus on the happiest moments, remixing those bright emotions into a shining daydream.  I don’t recreate a specific instance, more reference a romanticized feeling about the memory. I’m not interested in reality—real life is full of complications, sadness and disappointment. I choose to be easily pleased and enraptured, retaining a childlike enjoyment of the little things: a shiny jewel, a pretty bird, fluttering butterflies, a colorful button, bright colors, flowers, glitter, costume jewelry in all its sparkling glory. 

I pluck out the glorious moments of my childhood: the summer days of being a little girl when the world is exciting and full of adventure; the quiet contentment of eating a melting fudgesicle while sitting in lush green grass; the exhilaration of discovering the joys of reading as a young child; the sense of safety when my Dad would sing me to sleep at bedtime; the excitement of learning to ride a bicycle; feeling beautiful playing “dress-up” as scarves and old dresses get turned into a queen’s royal robes; the deep pleasure of learning to make beautiful things with my own hands; the surreptitious thrill of touching a sculpture in an art museum.

I still like to explore the world through touch—if I can’t hold something, discover its tactile qualities with my hands not just my eyes, it doesn’t feel real to me.  I want people to have that same pull when they look at my work. I’m portraying ephemeral and intangible concepts, yet the pieces themselves are weighty and substantial, catching the eye and inviting the viewer closer. I want sensible people to feel the urge to run their fingers across the surface, just to know if it actually feels like it looks. It’s that instinct to engage the world with all our senses that I want to evoke. You know you shouldn’t…but you just want to trace the curve of that jewel, the undulating hills of paint and varnish, the path of a twisting necklace.

In the studio, a sense of youthful playfulness and exploration pervades my art making process, though the more pragmatic side of me knows full well that those rosy memories are past and in fact, never actually were as I portray them. As much as I want to hold onto that idealized time of my life, reality intrudes.

In my recent work, I’ve been mulling over the turmoil that is adult life, the need to let go, and exodus: birds in migration, paint trails meandering aimlessly through the picture plane, jewelry in seeming disintegration, thread unraveling, materials actually hanging off the work as if caught in mid-dissolution. My paintings blur to various degrees over time, contributing to the sense of a dream dissolving as you wake up. The cheap jewelry I use tarnishes and discolors easily, bringing a touch of imperfection and decay to my idyllic daydream. The more layers I add the more blurred out the initial images become, sometimes ending up only as blobs of vague color. This is so much like our own minds in regards to memory: The further back you try to recall, looking through all the layers of time that have passed since, the less details you can remember--only a hazy general outline remains that you can project upon. The present can easily bestow a glossy veneer over the past. It’s mental flotsam building up to cover over the dark parts and leave the shining moments to glimmer through. 

You can see more of my work over on Deviant Art or MNArtists. 

Christmas Car Crash

Three years ago, just two days after I graduated from Northwestern College, I got in a horrible car accident on my way to work. It was a very cold day--a freeze-your-nose-hairs-when-you-breath kind of cold.
This was before I had my own car, so I normally would have driven the Saturn that my sisters and I were sharing. But that day, Leah had to work at the same time as I did, so my Dad let me use his Impala. It was icy and a little slippery as I set out, but it didn't seem unusual for Minnesota in December. I got on the highway, driving very slowly due to the ice on the road.

As I was going along, I saw a car that had spun out up ahead. Being the conscientious driver that I am, I moved over the the left lane to give the driver more room (in MN, you're supposed to move over away from cars on the shoulder). Well, I changed lanes right into the same black ice that guy had just spun out on.
I was only going about 35 mph, but I hit sheer ice and lost control of the car. Thankfully at that moment there were no cars around me. I spun around and around, headed straight for that other car. All I remember seeing was the front of that vehicle as I smashed into it.

BAM!!

I think I might have blacked out for a moment, because I couldn't hear or see anything for what was probably only a few seconds. I just remember hearing the crazy, insane beating of my heart, and then slowly, my hearing faded back in and I could hear the Celtic Woman CD still playing in the stereo. I had impacted on the driver's side of my car. I took a mental inventory of myself -- I was okay. Nothing felt broken. The airbags hadn't gone off. I looked down and saw that the seat was smooshed in. If that chair hadn't been so wide and taken all the impact, I definitely wouldn't have walked away so easily. I looked to my left and realized that the door was punched in, like a giant fist had smashed into it. But strangely, the top of the door was leaning away from me. The window hadn't even broken. My left thigh started hurting, and I realized that it had smacked into the steering wheel. Without even thinking about it, I put the car in park, and took the CD out and put it back in its case (it was from the library and I didn't want it to get scratched--funny what your brain focuses on in moments like that).
The other driver came running over as I was shakily taking stock of myself. Thank goodness, he hadn't been in his car when I hit. He had the same kind of Saturn that I would normally have been driving, and it was completely totaled. It looked like a giant had crumbled it up. All I could think was, "If I had been driving the Saturn, I would not be okay right now." Impalas are a much more heavy-duty vehicle than the chintzy Saturn.

When I crawled out on the passenger's side and walked around to see the damage, I was shocked. My car was totaled too, though not so bad off as the other vehicle; the frame was bent, the door was deeply punched in, the windshield had huge spider web cracking. My heart still was going a mile a minute, I could barely breath and I couldn't stop shaking.

I went to the hospital and got an X-ray of my leg, just be safe, but it wasn't broken, just spectacularly bruised. Thankfully, my Dad had full coverage on his Impala and got a new car pretty quickly. I went back to work two days later, with a sore leg and head ache.

It took me a little longer to get back on that highway though. It was hard to get behind the wheel after that. I wish I had a picture to show you of the accident, it was pretty spectacular. I had a slight panic attack the first time I drove after the accident. It was still winter, I still had to go to work and I couldn't have someone else drive me forever. Thankfully, I can just as easily take city streets as the highway to get to work, which is what I did for the next month.

Not giving into fear either

Three years later, I still get a tight feeling in my chest when the first heavy snow and hard freeze hits, and I have to drive in it. I have to remind myself to relax and breathe, and that within a couple weeks I'll be driving just fine in this weather. I push through the fear, because I don't want to be captive to the past. I'm going to live my life, which means I have to drive around the city year round. I refuse to let that bad experience hold me back from doing fun things. The fear is there, yes, but I won't give in to it. I'm definitely more cautious than I used to be when it comes to winter driving, however I don't freak out over every little slip and slide. Seriously, it's MinneSNOWta, the majority of the year it's cold and snowy here.

The weather today is what prompted this post--it's cold and icy. And I drove on the highway "like a baller," as my tattoo artist likes to say. (which means, awesomely)

Porn: "It's easy satisfaction"

I just read this article about a pastor struggling with addiction to porn. It saddens me so much that pastors and ministry leaders feel like they have to hide their weaknesses and sin.

Jesus wants us to be FREE!

I have first hand experience with that though: my ex-boyfriend from a few years back. He was going to a Bible college, involved with his church, planned on being a pastor....and was very addicted to porn. He ended up cheating on me with a friend of his from school. Sinful thoughts, not repented of and held accountable, lead into sinful actions. He held to an old-school (and in my mind, unhealthy) view of church: the head pastor is in charge of everything and everyone and can't admit to weakness. 

Yeah, because apparently pastors aren't human? They can't get tired, sick, weary, angry, lonely, hungry? I think it's ridiculous that some people put pastors up on a pedestal, as if they're somehow above their congregants. Guess what? Those in ministry are people too! Who'd of thought? I think it's stupid to expect one man to run a whole church. I'm a big fan of the multiple pastor model--spread the responsibility around. CEOs delegate--pastors should too. Anyways.

This mindset of "I have to be strong, I'm on a pedestal, I must be uber-Christian," leads to no accountability and extreme lonelines. "I can't admit to struggling with something so base as sexual temptation. People will think less of me." Actually, I think more of someone who can be humble and vulnerable and admit to being weak.
My favorite quote from the article I mentioned:  "Part of the problem of pornography is that "it's easy satisfaction," Finlayson-Fife says. "It doesn't require vulnerability and openness to another person." Exactly! It's easier to let everyone look up to you, than take the hard route and open up about what you're struggling with. Sadly, there are those who don't want to think of their pastor as a normal human being.

One of the hardest things to say to another person is "Help me. I can't do this by myself." You're opening up yourself to the possibility of being hurt and wounded--it's hard to be vulnerable! Who wants to admit to being weak? But here's the thing: if our church leaders can't be open and honest...what does that mean for the rest of us who are under their leadership? We need to hold them responsible to repent and lean on Jesus...and we need to do the same. How can we be "one body" following Christ if we can't share our struggles with each other? We're supposed to be defined by our love, but not a weak, sappy, sentimental "love." True love accepts you where you are as you are...but it doesn't want you to stay there!

So, we have a wide spread problem in Christian circles of addiction to porn, sexuality twisted into something unhealthy, something good created by God turned into an idol people worship. Here's the thing: we can't blame external sources for the sin. Before the modern era, the computer, the smart phone, people still worshiped at the altar of sex, taking it out of its God ordained place. The mode of consuming it might have changed, but it's still the same sin. The inclination to sin is internal--our hearts are bent that way naturally. The blame doesn't lie in stress, a busy day, difficult people, feeling lonely, whatever...at the end of the day, it's about a choice we each individually make in the quiet of our own hearts and minds. Do I give in, do I take the easy way? Or do I resist and fight...even though I'm tired, weak, scared, alone? I want that quick pleasure...but I know it ultimately doesn't fulfill me. The more sin is given into, the more power it has over us. Eventually the pleasure becomes addiction, and it's not that we want it...we need it. And the chains pile on and become so hard to break.

We're supposed to be the master of ourselves, self controlled. Jesus said he came to give us "life--more abundant." He knows we are weak creatures and unable to rescue ourselves. He made us for community. Hiding and lying about our struggles just isolates and separates us from each other. We are strongest when we are united in relying on Christ. The sinner needs to take responsibility for their sin, confess and repent, seek help and accountability. The ones sought for help need to be loving and supportive yet not enabling the sin to continue. A pat on the head and a slap on the wrist helps no one at the end of the day. It's not okay--it's sin! It is hard to break free, and can take a long time.

I apologize if this post is a bit rambling. There's just so much rattling around in my head right now about this. Ultimately, I think the most important thing is that we need to break this culture of pretending that "I'm okay, you're okay, Jesus is awesome!" Guess what? Just because you're a Christian doesn't mean it's always going to be super-awesome-fun-times. Life actually sucks quite a bit some days. And that's okay! Following Jesus full-heartedly usually is hard. I give you permission to drop the facade and admit that you're struggling. If we cultivate a culture where our Christian leaders feel like they can admit to sinning and being weak and know that they'll get help and support, I think it'll be better for everyone.

A beginning?

Last night was a good night. God spoke to me and through me, and I feel like a new chapter in my life has begun. The seeds of...something just starting to bud.

It started out inauspiciously, as most days do: I worked 9am-5pm, a long tiring shift. I really don't like working Sundays. It doesn't matter that I get other days off in a week--if I have to work Sunday I just don't feel as rested. It's firmly cemented in my subconscious as the day to rest. Sunday is for getting up slowly, reading some of the paper with a mug of steaming chai tea in hand, then heading over to church, then home again for more newspaper reading and hanging out with family and just being. Anyways, my church had an evening service last night due to Thanksgiving. I was debating about going, because I was tired and sore after work. My right knee has been aching this week, and I just feel very worn out. But I usually get to go to Sunday services only twice a month because of my work schedule, so I went.

I drove over there half an hour early, because my favorite restaurant, the Wilde Roast Cafe, is about three blocks south of where my church meets. I usually don't walk that far without my leg braces, but I really, really like Wilde Roast's chai tea. It was a perfect cool, crisp evening in Northeast Minneapolis: no wind, the stars peeking through the scattered clouds, and the city....oh, that skyline! As a city girl, I love my skyline, especially at night. Downtown Minneapolis has a lot of skyscrapers that are mostly wrapped in glass. It glitters and shimmers like a jewel after the sun goes down. It was unusually quiet last night as I walked. The rhythm of my boots hitting the sidewalk and the distant ever present sound of the highway were all that I heard. It was glorious to be honest. There were a few people here and there ahead of me, but pretty much it was just me and the city. It has a song, you know. On night's like that you can really hear the city sing. To me, it's beautiful. I got my chai tea and headed back. I was walking along St. Anthony Main,which has this old world feel to it, with uneven cobblestone sidewalks. I looked up this stairway that leads up the hill...and there was an old church all lit up, its stained glass windows shining out into the night. It was just perfect. "Thank you, God." He knows me so well--I'm easily pleased with little moments like that. And again, no one else was about. I was already glad I'd decided to come to church. It was quiet and beautiful....and expectant. It's hard to explain, but I feel God's presence in moments like that. Not like I could reach out and touch Him, but just that He's there; and I know He orchestrated that particular instance for me because it gave me such quiet joy. I was ready for church after my brisk walk and warm drink.

And church was amazing. It was a special Thanksgiving service, so no sermon, just worship music and an open mic for people to share about God's goodness in their lives. There was a little thing off to the side for people to write down an "Ebenezer," which means "stone of help or testimony," a memorial to what God has done. As soon as I heard that, I felt God poking me to get up and speak.

Over the last few months, I've been having "stone of testimony" be brought up by different sources that are completely unrelated to each other. When that happens, I listen, because obviously, God's trying to get something through to me. I feel like He's telling me to stop living in fear and be bold, to speak out about what He's done in my life. It started when I wrote the full story of my wings to a pen pal friend, then I felt convicted to share that story so publicly on this blog. And last night, I felt I had to share some of that testimony at church. I really don't like public speaking, by the way. I literally tremble when I'm standing in front of others like that. So I sat and fidgeted in my chair, my heart in my throat, knowing I had to get up, walk to the front and turn and face the crowd...and speak. I sat through others' stories and was the last one to share. I couldn't not do it. I was compelled, though my heart was beating like crazy.

My mind had been spinning, trying to figure out the right words, to make it pretty and polished. I mentally hushed myself as I stood. If God wanted me to speak, He would give me the words to say. And so I shared about how God has been teaching me about stones of testimony recently, that when He brings the same message from different sources, I need to listen and obey what I hear. I said I'm thankful for freedom, that Christ has redeemed and saved me from darkness.I gave a brief background on my wings and how I am a living stone of testimony to God's goodness.
I was open, vulnerable, honest; my body shook and I thought my voice trembled. I had to rest my free hand on the podium, because it was shaking so badly. I spoke briefly of being abused and the darkness and isolation that I felt. How hard it is to speak of it, because the devil wants us to think we're alone and no one else would want to know, that they would be disgusted. The shame, guilt, fear and self loathing that overwhelm and isolate. The thought that, "No one can know, it's too dark, too disgusting....too shameful. I feel unclean and unworthy." But I said that God doesn't want me to live in fear anymore. He was redeemed me, walking into my darkness and not leaving me there. He wants to me to be bold and speak of what He has done in my life. That without Him, His goodness and mercy, I would be bereft and broken. I know goodness and light because I have experienced evil and darkness. I can say God IS GOOD from experience not sappy naivete. Life is not a Thomas Kinkade painting, I know that...but there is still good to be found, it's just not the "everything is always kittens and rainbows" kind. It's goodness forged like gold refined through fire.

I spoke for a few minutes, then walked back to my seat and sat down. After the service, I had multiple people come up to me and thank me for sharing. I had a few really good conversations, with the possibility of forging some deeper connections. I've been attending this church off and on since this summer...but something changed last night. I'm not an outsider anymore. I mean, I didn't feel excluded at all before...but there was an irrevocable change, a forging of....something. I'm not quite sure yet, but it feels like a beginning to something good. I mentioned to Hannah after I got home last night, that it feels like a new chapter in my life is getting underway, that there's promise of something deeper and challenging (in a good way) coming my way. We shall have to see where this story leads.

Blast from the past

I was reminded the other day of something I used to do during my tween and early teen years. Back before Youtube, Facebook, Twitter or Myspace were in existence, e-mail was king. Nobody had ever heard of an iPod, "blog" was just starting to be accepted as a word, dial-up was still standard, small children were not yet toting around their own cell phones, and I had my very own email account. It was supposed to be spirit_of_love, but I was in a hurry and didn't double check the spelling...so it ended up being sprit_of_love. That was always confusing to people.

Anyways, I was a deep thinking homeschooled teeny bopper with a bad hair cut and wanted to encourage others. I started sending out a weekly e-mail where I would write out a few Bible verses and talk about them and what they meant to me. I used to keep a Bible journal and would jot down verses that stuck out to me, and that's what I used in my e-mails. I can't remember how long I did that, but it was at least a couple years. One of the pastors at my church even mentioned my e-mails in a sermon once, which totally put me on cloud nine. I had deep thoughts to share and people actually wanted to read them! That was some serious validation for my young heart. 

Over time though, I started getting discouraged (this was also when I was feeling disconnected from God and struggling with some depression). I felt alone and distant from people my own age, frustrated with my peers' lack of maturity and focus on shallow things. It became a battle to even sit down and type up anything. I'd think, "Oh, nobody reads this, or if they do they're just being nice. You don't really have anything to say. How can you tell others what God says in His Word when you feel like He's distant from you?" Eventually I just petered out and stopped writing them. I felt hypocritical--how could I write about Jesus and faith when I was struggling and feeling doubt? Then I felt silly--what did I, as young teen girl, have to say that mattered; who was I to say what the Bible meant? And lastly, disappointment--how pathetic that I couldn't even sit down to type up a few words about the book I said I believed in, some Christian I was.

Looking back on it now, I realize that Satan really doesn't like it when God's Word gets read or spoken of. The devil does everything in his power to make sure a person never turns to Jesus. If that fails and someone becomes a believer, his backup strategy is to make sure they never bear any fruit, remaining a nominal, inconsequential Christian. Those who stand up and try to be bold and different face great attack on many fronts. I've heard from people here and there over the intervening years how much they enjoyed what I wrote. That people still remember those e-mails almost a decade later tells me I was onto something. But I got beaten down. As I've shared before, I was battling a lot of darkness during my teens, and it got the best of me at times.

In the last few years, my faith has gotten stronger and deeper. Mark Driscoll of Mars Hill Church has been a particularly amazing blessing--his teaching has helped my understanding of God and love for Him to blossom. Jesus has become real to me in a way I can't adequately describe. I understand now that doubt and questions are okay and even beneficial at times. I know now that speaking boldly for Christ brings repercussions and to be prepared for spiritual attack. And sometimes God chooses to speak through zealous young people who long to go deep. I hope to keep my zeal as I add maturity and life experience to it. 

I despise cookie cutter Christianity

A while back I heard that Brio Magazine folded. And I was so happy to find that out. Let me explain why. As someone who grew up in fairly conservative Christian circles, Brio was the magazine to read if you were a girl. And I hated it. Sure, it had some good things to say, but the overall focus was modesty and purity. Like that is the most important part of being a Christian girl apparently. Actually, it was more MODESTY and PURITY!!! As if the pit of Hell would open up under you if your belly button ever saw the light of day or you wore *gasp!* spaghetti strap tank tops. Because that is the definition of a good Christian girl for some: you're modest and pure. That's it. As in the rest of our culture, it's all about the outward appearance, albeit with a different focus. Instead of pushing how sexy you can go, it's how covered can you get without dying of heat exhaustion?

We match our curtains!

There is definitely worse out there,
but I want to keep this family friendly

Brio was predominantly pink and shades thereof. It was as sweet and saccharine as cotton candy dipped in honey. "Oh, surely you exaggerate, Elisabeth." Exhibit A, ladies and gentlemen.

I rest my case

Here's the thing, I'm no hater. I'm a Christian, I love Jesus, I think His followers should be different from the surrounding culture. Teen fashion magazines in general are waaaay too sexualized, yet still offer some sage advice. I would love to see a teen magazine that bridges the gap between being culturally relevant and encouraging and nurturing a deep, vibrant, active faith. Brio was not that, in my opinion. It was sugary, sappy, fluffy christianity-lite. It tried to be too many things poorly. And don't get me started on the much hyped Brio And Beyond. It was supposed to cover deeper issues and such for older teen girls. The cover was different...and it literally had one extra article, otherwise all the content was the same. 

My sisters and I preferred to read Breakaway, which was aimed at boys. The difference alone in the covers tells you quite a bit. If you Google "Brio Covers" you see multiple images of smiling girls not really doing a whole lot of anything. However "Breakaway Magazine Covers" returns very different results, generally action shots of males doing something. (The passive vs. active imagery is a great commentary on how girls and boys are "supposed to behave," but that's another post in itself). Breakaway would actually cover tough, relevant teen issues, like cutting or addiction to porn or suicide. Matters of the heart and soul were well represented in addition to outward appearance (they had an ongoing section on exercise routines).

I'm weird, I know that--I've always had a desire to "go deep," striking out for the deeper waters of faith and thought rather than wading in the shallows of superficiality. But surely I can't be the only one who chafes against this portrayal of "feminine" Christianity? I wear skinny jeans, tank tops, jewelry, makeup (when the mood strikes)...but I also love long flowy skirts, peasant shirts and leaving my face au natural. 

My sisters and I are the prime example for not trying to lump Christian girls into one box:

Leah working security at Sonshine

Hannah surfing

Me in my Ren Fest best

We all love Jesus, yet we each follow Him in our own way. We don't follow what others say we should be, but what the Bible says a righteous Christian is. And it don't say nothing about wearing frumpy clothes and pretending like we don't have a brain.

At the end of the day, my point is not that I hate Christian publications (I don't), or that I never wear pink (I do), or that Christianity is stupid (it's not). It's just to call out that overemphasis on outward appearance and external actions for girls I've seen in the Christian circles I've run in growing up. We need to find that healthy middle ground and not swing to either extreme as we live out being women who love Jesus.

NOvember

One finished painting so far this month

My art work tends to come in batches, like waves. There are times where I produce work like crazy (summer especially). Winter is actually a pretty productive time too--here in Minnesota, you hunker down and work on something during the long cold months when you really don't want to go outside unless you have to. But I also have seasons where I don't really make that much. And my down time of the year, for some reason, is November. I don't know what it is about this month, but my artistic output tends to be fairly low year in and year out. Maybe because it's an in-between time, not really fall but not yet winter. I think it's my body's way of telling me to take a break before the cold really hits and get some rest before the holidays roll around.
It used to bother me that I couldn't push through it and just get on with beavering away at art making. I felt guilty, as if I was failing at being an artist. I've come to realize that this natural lull is beneficial. As an American, I tend to look down on rest and relaxation as laziness or wasting time. But we humans aren't designed to constantly be on the go. God even told us to quit working and take a break every week: "Six days shall you work, but on the seventh you shall rest." Thank you, God, for reminding us silly creatures that we shouldn't run ourselves to exhaustion. So now I try to embrace my natural tendency to slow down in November. I use it to reflect on what I've been doing so far in the year and what project I want to focus on over the winter months. I tend to read more, reconnect and catch up with friends, visit galleries and museums--it's creative input rather than output. I've got to feed the artistic well to draw from it later. 

It's also a reminder that there's more to life than making art. Yes, I love it and it's what I'm passionate about. I always feel happiest when I'm in the middle of a mess that will transform into finished pieces. But I also need to step away from the art supplies and engage with other human beings. It's easy to become a hermit, making art can be such a solitary endeavor. At the end of the day though, I need people in my life to give me perspective. I am not ultimately defined by my art, it's separate from who I am as a person. I need to cultivate other interests as well, for my benefit and others. I don't want to be that person who can only talk about art, and is at a loss for words when any other topic comes up. I need to be a well rounded nerd (which I am--ask me about Batman or Lord of the Rings or Settlers of Catan, etc, etc). 

Fa la la la BLAH!

Make it stop, dear God, please make it stop!

I'm no Scrooge, but there should be a law against Christmas music being played before Thanksgiving. I work in retail and it's audio abuse during the holidays. I'm there 40 hours a week, and we're supposed to listen to Christmas music the majority of the time between Black Friday and December 24. Even if you really, really like a certain genre of music, I don't think you'd want to listen to it 40 hours a week for over a month straight. And the customers don't like it anymore than the employees do. Seriously, what makes stores think that people want to linger in a business with "DECK THE HALLS WITH BOUGHS OF HOLLY!! FA LA LA LA LA LA LA LA LAAAAAAAA!!!" blasting overhead? Nobody likes it, and yet stores keep playing it every year. It's not nostalgic, it's annoying. That does not encourage anyone to shop. That encourages me to get a headache. That's why online shopping is awesome. Seriously, if stores want me (and people like me) to give them business: no loud stupid Christmas songs; silence would be much preferable over having to hear yet another lousy cover of Jingle Bells. Otherwise, Amazon is getting my money. It's quiet, fast and I can shop in my pajamas without leaving home.

And it is NOT "the most happiest time of the year" for those of us who work in retail wonderland. I don't know what it is, but people feel like it's their right to treat the person behind the counter like dirt. Like I want to be here anymore than you do, angry psychopath grandma who thinks a rock painting kit is a great gift for a teenager (just buy them a giftcard). I don't want to be at work until 10:30pm on a Friday night, collecting empty coffee cups from the bookshelves (which is not a garbage can, in case you didn't know) and cleaning poop off the bathroom walls (and yes, that is something that has happened at my store...more than once).
I'm really hoping that at this time next year I'll be in grad school and won't have to deal with this anymore.

The only thing that I'm looking forward to about this holiday season is that I get to wear this to work:

That's what will make all the crap I go through worthwhile: I get to don a hat with elf ears and it will be awesome. You know you're jealous

Dealing with entropy

I'm feeling cranky today and want to kvetch: I have to wear leg braces, and I hate them with a fiery passion. Sure, they help me walk and not kill myself by tripping over my own feet. And they make it possible for me to stay on my feet for long hours at work. But as much as the leg braces help me, they've caused me a lot of grief as well.

The technical term is Ankle-Foot Orthosis (AFO); they provide a support system for weakened legs, preventing foot drop and hips from getting out of whack from limping. They also are hot and sticky in the summer and get freezing cold in the winter. The skin on the bottoms of my feet reacted horribly when I first started wearing them at 17 and didn't clear up until just last year. Throughout college I had to deal with itchy, cracking, bleeding feet pretty much on a daily basis. It's hard to explain what it feels like to peel off blood stained socks at the end of the day. The doctors couldn't figure out what was wrong--I went through allergy testing with no reactions. I tried prescription after prescription and got worse. I endured the agony of a skin biopsy on the bottom of my foot (the skin was so compromised it just kept ripping when the dermatologist tried to sew it shut). My brother Andrew's doctor was the one to suggest something that finally worked.

Another fun fact about wearing AFOs: pretty shoes are out of the question. Heels? Flats? Sandals? Nope, no and don't even think about it. I pretty much live in Saucony sneakers, because they're the only shoe I've found that fits, is comfortable and lasts a long time. Thankfully, they come in crazy bright colors, which makes it a little more fun.

And who wants to wear a cute little dress or shorts with muscular dystrophy legs? What do I have to show off? I feel awkward and uncomfortable. I've seen the pity in people's eyes, and I don't want to be treated differently because they feel sorry for me. There are days I'm happy that I can hide my disability.

And the reason I have to wear AFOs in the first place: a still undiagnosed disease. It's some sort of muscular dystrophy, but they don't know what kind. And believe me, I've been tested up the wazoo for various diseases. I've put my time in as a pin cushion for the medical establishment. I don't care what I have, I just want to know what it is! I already live with the symptoms every day, I want to have a diagnosis, a name to give the pain.

And I do live with chronic pain: a constant, unwelcome, low grade (for the most part) ache. It's there when I wake up in the morning, when I'm happy, when I'm sad, when I'm hungry...always. Sometimes it's more like background noise and doesn't bother me that much. Occasionally, it spikes, and I bite my lip, clench my hands into fists, gasp out a few choice swear words, and force myself to get on with the task at hand.

As someone who wasn't born sick, it can almost be harder to lose capabilities than to never have had them in the first place. I can't run or even walk very fast, stand on tiptoe, fill out skinny jeans (they look baggy on me), wiggle my toes, lift heavy things, walk up too many stairs, or write much without my hands hurting. I'm super sensitive to getting cold (legwarmers are my friends). I have to ration my energy--I need to give myself time to build up strength to do something, and if I'm too tired, I've learned to not push it. Most of my energy goes to my job, so art making and a social life suffer for it at times.

So, yes, it sucks. A lot. You will rarely hear me bemoan what I'm going through though. I prefer to focus on the good things in life. But today, was one of those times when I needed to complain.