Sickness rant

Reading Neurology Now Magazine tends to depress me. Not for the reasons you might think. It's not because it makes me worry about my future or brings to mind my physical limitations. Neurology Now has a lot of great advice and helpful information (and I even won their first art contest a few years ago). No, the reason it frustrates  me is because I don't know what information actually applies to me. I still don't have an official diagnosis for what's wrong with me. I have muscular dystrophy of some kind, so I've been told at the Muscular Dystrophy Association (MDA) clinic. I have had innumerable tests run, many coming back "inconclusive" which tells you nothing. I can tell you the many diseases I don't have. I can tell you what it's like to endure a pointless spinal tap. I can describe how it feels to undergo multiple EMGs, one of which the doctor was more concerned about looking at the results on the screen than the fact that he was making me bleed because he stabbed me too hard. I'm an old hand at getting MRIs--I even know the best kind of music to bring to drown out the noise. I know from experience to drink a lot of water and have something sugary to eat for blood draws.

I go to the MDA clinic once a year to get told I'm "doing fine." Maybe compared to the last patient who was drooling on herself and can't walk, sure, I'm doing great. But compared to myself, no, I'm not. Ten years ago, I could work out on a treadmill, lift weights and run a mile (albeit not a fast one). Today, I get achy and tired from walking up a few stairs. Lately, my legs have been hurting when I drive my car.

Every year, I go to the clinic, get a bunch of tests done, and feel like I'm sent off with a pat on the head. All the helpful stuff I've had to figure out on my own. No one could tell me, "Hmmm, Elisabeth, you're underweight with low muscle tone and poor circulation, you might want to invest in some sweater vests and leggings to help keep your core warm in the frigid Minnesota winters." Or, "Because your lower legs are weak, your back muscles have to work harder; be careful, you're more prone straining your back and shoulders." Nope, had to find that out the hard way. Or when the skin on the bottom of my feet broke down when I first got leg braces, I was told the skin shouldn't be reacting that way. Well, thanks, Nostradamus, but my feet ARE cracking and bleeding. Andrew's doctor was the one to suggest a cure that actually worked!

I'm convinced I have some form of Charcot-Marie-Tooth Disease (CMT), which I've been tested for twice, both times with a result of "inconclusive." That can mean anything: the blood was too old by the time it got to the lab, something didn't get handled right, the test wasn't analyzed properly, etc. Anyways, I have pretty much all the symptoms: extremely high arches, curled toes, foot drop, wasted lower leg muscles, numbness and tingling in my toes, weakened hand strength, neurologic pain (meaning, pain that doesn't result from an injury, it's the nerves misfiring). Whenever I go to my regular doctor, I always get asked if I've been tested for CMT. When I saw a podiatrist last year, she said I have the highest arches she's ever seen, and asked me multiple times if I'm under the care of a neurologist and if I've been tested for CMT. Unfortunately, I don't have an extra $16,000 laying around to pay for the genetic test. Pretty much, I just follow the advice given to CMT patients. But I'd really like to know conclusively what I have. I'm sick of the medical merry-go-round though--let's draw seven vials of blood, let's do an EMG, let's do a spinal tap, let's draw more blood, let's do another EMG, and more blood drawn. Nope, I'm done with that. I've been dealing with this since 2004, and I'm not going through anymore painful tests that reveal nothing conclusive.

Green raspberries for breakfast

There are things we love not for what they are, but what they represent to us: Brie cheese will always remind me of college, because of the art department's gallery openings I regularly attended. The smells of a bonfire and pine trees recall my summers at Storybook. Carry on Wayward Son by Kansas was me and my roommate's theme song my last year at Northwestern. And raspberries evoke a very specific memory, one of the oldest that I can remember:

It's a steamy summer morning on the Iron Range of Minnesota. Enter a huge yard, filled with flowers and towering trees grown into the rickety metal fence almost the same age as my grandparents' century old Victorian house. Just outside the back door is a small garden, where two little girls are stuffing their faces with as many raspberries as they can reach. The blonde is my younger sister, Leah, and the curly red head, that's me all of four-years-old. We don't know much about gardening at this point; all we know is that what grows out here is edible. If the red ones are good, then the green ones must be okay too. We completely plucked those bushes bare from the ground to as high as our little grubby hands could reach. We hear the back door open and scamper away. My Grandpa walks out with his bowl of cereal in hand to add some fruit to his breakfast. He gets over to the raspberry bushes and looks around, trying to find any ripe berries that might remain. Leah and I were quite thorough. He looks over at us, our red stained faces, hands and clothes completely giving us away. He chuckles and shakes his head. "Those bushes were full just yesterday! I can't believe you cleaned them all off. I wouldn't be surprised if you got a stomach ache from eating so many, especially the green ones." He went back inside and I could hear him exclaiming to my parents and Grandma how quickly we had made short work of his berry crop.

The house is still there two decades later, though the berry bushes aren't, and my Grandpa won't be around much longer either. My grandparents sold it in 1992, and today it's my uncle's home--he bought it after two different owners almost ruined it. The interior of the house is completely different these days--my aunt and uncle renovated and remodeled the entire thing. I don't really remember much of what the inside used to look like; mostly I recall running around the yard and playing at the park down the street.  The back door garden is gone, but there's even more flowers around the yard as my aunt has quite the green thumb. The fence is still standing with the old trees grown up through it. The back door shutting sounds the same though. And I still remember where the raspberry bushes stood. I can hear the echoes of two little girls' giggling on a blue sky morning as they ate green (and all the red) raspberries for breakfast.

Coming soon....

My next street art project is going to make use of these: 

shiny!

The idea came to me while I was eating breakfast this morning. It's either going to be really awesome... or really dumb. Hopefully the first option. 

The Mystic Knights of Tir Na Nog

Sadly, they do not come together and form a Dark Ages Voltron

Today at work I got a blast from the past. I shelve in the children's section and came across an old chapter book based on a Saturday morning kids show, The Mystic Knights of Tir Na Nog. I loved that series; as an 11-year-old I thought it was so cool. There was magic, and dragons, and magic armor, and a kindly old druid, and they had to go to a magic well where they got sucked into the land of fairies and got magic weapons...did I mention there was magic? And it was set in Ireland, which in my mind was the land of awesome (I really liked Irish mythology...still do actually).

Anyways, it lasted one season and I was so bummed when it got cancelled. I hadn't thought about that show in years...until today. And of course, I came home and Googled it (thank you, Wikipedia, for helping me to recall when it was even on the air)...and was subsequently semi-disappointed. It's Power Rangers, Lord of the Rings style. They even have a Gandalf and Smaug. The vague half-memory I had of this show was way cooler than the clips I just browsed through on Youtube. (My sister, Hannah, just peeked over my shoulder and was like, "Of course you'd like something like that. It's magical Ireland type stuff. That's totally you.") However, I will most likely watch at least one episode of this, since some similarly nerdy person was kind enough to post them on Youtube.

We are so cool. We know you're jealous.

Look, it's our orphaned hero raised by the aforementioned kindly druid, the plucky independent princess, the "bad boy" friend, and the token minority, all dressed like ye old times! (mind you, this is supposed to be set in ancient Ireland--not really a place known for its ethnic diversity, but ya gotta be PC for the kiddies.) I see better costumes than this at the Ren Fest. Seriously, my Ren Fest costumes look better than her outfit (what is that on her head anyway?) *end nerd rant*
And, of course, their personalities match the elements they're the knights of. Grumpy, blunt bad boy can cause earthquakes and throw giant boulders; moody female character can control the wind, etc, etc. However they did not dress in the respective colors of their armor, which it makes it hard to remember who is who when they're all powered up. How am I supposed to remember who the green guy is if he doesn't wear green all the time?!  I just love how awful and clunky their armor was (shoulder pads were big back then apparently), and their weapons were just ridiculously huge. I was going to post a clip here, but it's being stupid and won't let me, so just watch this to see what I'm talking about.

Man, the nineties were awesome.

My Wings

way more awesome than my original idea

I recently fulfilled a long awaited life goal: getting a tattoo of wings on my back. And when I say "long awaited," it's been at least 10 years that I've been thinking about it (so, yes, starting when I was around 13). I originally only asked for basic black and white angel-type wings, simply because I couldn't think of what colors I would want. Brandon Heffron and Dan Claessens of Beloved Studios collaborated and came up with this amazing design; they each picked a side and worked on me in tandem (two people tattooing at once actually hurts less, I think). It took three sessions for a total of 11.5 hours: the first was the black outline, the second was most of the color, and the last was adding the highlights, shadows and finishing touches. You can take a look at a picture from after the first sitting to see how quickly they worked.

I had multiple people (other tattoo artists and customers at Beloved) come through to check out my back as it was getting worked on. They were amazed at how big and epic I was going for my first tattoo. Apparently, teeny tiny is the norm for your first, but I didn't want piddly little chibi wings on my shoulder blades. Visitors would comment how painful it must be and how hardcore I was. Actually it really didn't hurt that much (except for at the end of the second session). I may look delicate, but I have a really high pain tolerance. Getting a spinal tap, having lots of blood drawn, breaking numerous bones and enduring several EMGs over the years has helped me build up my pain endurance.

"So you sat through multiple tattoo sessions for some colorful wings? Aren't angel wings kinda cliche?" you might be thinking at this point. Sure, it is a common tattoo motif, but my wings have a long story behind them and hold a lot of meaning for me. The super short cliff notes answer is the wings are a potent symbol of hope and God's grace and mercy in my life. The Lord of the Rings length version (which I will edit here, don't worry) starts sad and dark but ends hopeful and triumphant. Brandon and Dan don't even know the history behind my wings, but they added elements to the design that illustrate my story even more.

I have told few people what I'm about to tell you, but I think it's time I share this more publicly. I am a living testament to the reality of God. I know God is real, beyond a shadow of a doubt, because of what I've gone through, the good and the evil.

I was repeatedly sexually abused by my best friend's older brother when I was a little kid (under the age of 9). I won't go into all the details (frankly, because I don't remember everything), but I know I was molested at least several times over the years. Anyways, I completely blocked those memories, didn't even recall that it had happened....until it all literally came crashing back into my consciousness one winter night when I was eleven. I didn’t know how to talk about what had happened; and as a kid, thought that I would get in trouble if I said anything. So I didn't tell anyone about it for years. I got really depressed and had what I later figured out were panic attacks at night. It took me hours to get to sleep sometimes, fear and shame and panic would knot my stomach. When I moved into my own room, I had to have a night light by the door; I couldn’t walk down into the basement without a light on, because the dark would feel so oppressive and scary. Some nights I just couldn't turn to face the wall because I felt like SOMETHING was lurking outside my door and would get me if I let my guard down. As a 14-year-old you don’t want to admit to anyone you’re afraid of the dark.

I just wanted the fear, shame, guilt and utter loneliness to end. I hid it really well though—friends, family, no one knew the pain I was carrying around. I just didn’t have the words and tried to stuff the memories away as I went about my daily life.

Occasionally from when I was around 11 to maybe 15 years old, I would have these dreams where I would be flying. I usually don't remember my dreams, but I can recall these ones in crystal clear clarity. I always felt better when I woke up from a flying dream, it was like a little candle lit in a dark room. I would feel some quiet hope that the darkness and pain wouldn't last forever. But eventually the feeling would pass and I'd just feel the heaviness again.

And it’s not like I was a walking wraith or something. I went to school, church, youth group, babysat for people, took Driver’s Ed, normal teen stuff. I did have fun and have many good memories from my early teen years…but there was always this burden I was carrying around that I couldn’t get rid of. And at night, there was nothing to block out or distract me from the overwhelming fear I felt. I tried to pray it away, but what I needed to do was reach out to someone. I couldn’t deal with it myself.

The summer I was 15, I had come to the end of my rope. I just wanted to give up, I couldn’t take it anymore; I felt so isolated and alone. Sometimes I forget what a low place I was in then. The night before I left for this two week trip, I remember just being at my absolute wit's end. I wrote down a prayer (which I still have somewhere), just crying out from the depths of my heart. Pretty much I was like, "God, if you don't help me right now and do something to change this, I'm done. I can't do this, I can't carry this weight anymore. I don't know what to do or where to turn, but you need to do something over these next two weeks." And He answered that prayer far more than I could have imagined. That trip literally saved my life.

If I hadn't gone, I don't think I would be here today. God opened the wounds of my heart and started the healing process. I had an amazing youth leader that talked with me for hours every night. If not for her, I wouldn't have started dealing with my past. I told her what had happened to me, and she just hugged me and let me cry. I realized what had happened to me wasn't my fault, that I didn't need to feel guilty or ashamed. To just open up and tell someone and be accepted not rejected...my heart had been crying out for that.

The reason I use pendulum.and.fire as a user name online is from that trip. The name of the worship time we had one night was called Pendulums and Fire. The point was that most people are like pendulums--they swing back and forth between being hot and cold for God. We need to be like a steady burning fire, a hot ember even. It's not what our "feelings" are but Who our hearts belong to that determines our Christian walk. We need to grab onto God and not let go, no matter what. That night has stuck with me since that summer in 2002. I felt God's presence like I never have in my life. I could literally feel the weight of the Holy Spirit filling that room, filling me. It wasn't just a "mood" or a "feeling," Jesus touched my heart that night and I have never been the same since. Whenever I feel doubt about God's presence in my life, I just point myself back to that night. If I never experience anything supernatural in my life again, that one night is proof enough for me of who God is and that He is near. Satan has tried to drag me down to where I think God isn't involved in my life or doesn't really care, but all I need to do is look back on that night and see the truth.

So, my life was completely changed. I came back a different person. Some people get on an emotional high (and I would see it all the time in youth group) and then when the conference is over, within a week or two it's back to business as usual. My youth leader friend commented about that over two years later: she said, "You never came down from that because it wasn't an emotional 'high,' God brought you to a new place."

My wings are a testament of God's healing grace and love in my life.

They are also a reminder of Isaiah 40, especially verse 31: "but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary; they will walk and not faint."

And over the last 7 years as I've had to deal with health problems, my wings also speak to me of the hope I have for the future. That one day I (and Andrew, my brother) won't be sick. Andrew won’t have multiple diseases, innumerable drugs to take, illness to endure. I won’t limp around with wasted legs and painful joints, having to ration my energy. We will run through the fields of Heaven, never worrying about having to take drugs or getting tired out from walking up stairs. If I didn’t have that hope, this life would be completely unbearable. What is the point of a life of pain and sickness and misery and then you die, and that’s it? No, I have a hope and a future! Jesus said there is something to look forward to after death, and I believe that with all my heart.

So, my wings speak to me of the past, where I have been and where God has brought me from; they speak of the present, God's grace and sustaining power for what I endure today; and they speak of the future, a hope in what is unseen and not yet, a glorious resurrection and ultimate healing. That is the story my wings tell. 

Stepping off the cliff

I've decided to take the plunge and apply for grad school! I graduated with my Bachelor's in Fine Arts in Dec. 2008, so I've had some time to establish myself as an artist and grow in my art style. But I'm ready to take the next step in my life. I'm currently working at Half Price Books and it's a super nice job for retail....but it's not a career job for me. Some people might be satisfied with working a random job to support their art making, but I want an arts related career. Specifically, I want to teach art at the college level....but you need a masters for that. I don't want to keep putting off what I really want to do with my life, so I'm going to stop making excuses and being afraid of the unknown. It feels like I'm standing at the edge of a cliff getting ready to jump off. I could fall and fail miserably...or I will fly and soar to new heights. I read this in an article yesterday and it stuck in my brain: "I learned that failure is an essential pat of developing truly powerful ideas." So even if I fall flat on my face and I don't get into school at least I'm moving outside of what's comfortable and safe. I don't want to just stay where I'm at, it's time for a new chapter in my life to begin! 

A broken tree

The tree out back broke recently. Cracked right down the middle, like it got hit by lightning. But it didn’t. It simply cracked because it’s brittle. A highbred variety prone to being too stiff to withstand high winds. The day before I had just been admiring how tall it had gotten. My Dad planted it the summer before our neighbor, Mrs. Hanninen, died from cancer. I had laid my hand right on the spot where the tree would splinter apart. I looked up into the leaves as my Mom shucked corn from our garden. The sun played across our faces, and my Mom picked bugs off the cobs as we talked about nothing in particular. She was the one who remembered when the tree got planted. She and Mrs. Hanninen would talk across the fence as they hung laundry on the clothes line. I don’t know what they chatted about, I was too busy chasing bugs and running through the tunnels of drying clothes, leaving dirty hand print streaks on the clean sheets.
The crosshatching lines across the trunk reminded me of my hands, which are pretty lined for someone so young (I’m 24). Trees’ bark is a lot like human skin—they get stretch marks too. The tree had grown so fast its bark had split in places, like a tomato can rip open because the skin can’t keep up with how quickly its insides are expanding. The little tears had already scabbed over; new bark was stretching across the cracks, and would, in time, give the tree more character. Now, I’m just hoping it will make it through the coming winter. My Dad said he’s just going to let it be and see how it fares. If it survives, the tree will be stronger for its ordeal, and if it dies, we’ll cut it down and use it for firewood. I’m hoping for the former outcome though: I’d like to sit underneath that tree someday with my kids and trace the years on my hands as we talk about nothing in particular on a summer day as the tomatoes on the vine burst their skins.