Tuesday, January 19, 2010

frustration+ depression = fear & self-destructive behavior

After I got home from Canada I went looking for Reiki in Chicago. Since the practitioner I had seen lived in a different state I had to look for one on my own. Again not easy in 1994, AOL was really the only online community and I never thought to look there. I was able to find a few books, so I began with reading everything I could find about Reiki, still unable to find a teacher! At school I spent over two periods a day in Jewelry class, while spending my nights skateboarding & going to punk shows. Late one Saturday night I went skating after a show and took a hard fall. I knew immediately that my wrist was broken, I just didn't realize how bad. I waited until the next morning to go to the Emergency Room, once there I got the bad news not only was it broken, I needed surgery to fix it! The surgeon had to put 4 pins in my wrist, and it was one of the first arthroscopic wrist surgery ever! The surgeon was amazed to find when he placed the pins in my bones, they had the consistency of "cheese" due to my PXE. I had no idea that was even possible! I now know PXE puts calcium in places that doesn't need it, like my veins, heart, arteries, skin, and eyes, however it seems it misses the important things like bones. I felt very alone and isolated, no one, not even my family really understood the stress and frustration I was going through. My body is working against me, and no one knows how to stop it or fix it.

I still had plans on going to Jewelry school after my high school graduation, despite my risk of going blind. I was all signed up, ready to go, until the panic set in. I was scared I was going to move and just go blind, I was starting to question if being a jeweler was really the best thing for me. Less than a month before I left for school, over 2000 miles away, I changed my mind. I still chose an art school, but I wanted to go to one closer to home, "just in case". I started to think negatively about my condition, I was scared I was going to die before 25 and go blind at anytime, and so began my self-destructive period.




These photos were taken by Benjamin Coulter at the very beginning of my self-destructive period.

1996, the year I didn't care if I lived or died. I was so frustrated, Dr.'s couldn't fix me, I had learned of Reiki but I couldn't find it. I started to party... a lot. I drank, did hard drugs, stayed out for days. All the stupid things an 18 year old who doesn't care about life would do. Thank goodness this behavior was very short lived, after a few months and a police scare I started to regain a better outlook on life. I realized I can't give up, my life was too important to fuck up anymore, and that there had to be answers somewhere... I just needed to be strong and go find it!

Reiki found me

When I got home from my trip I had appointments with many specialists to get tests done to see if my PXE was doing any internal damage. At the time the only thing they found was the change on my skin (at the time it was only on my neck) and a slight heart murmur. Being a teenage girl I was very self-conscious about the skin on my neck, most people thought I looked like a burn victim, so as a jeweler I covered myself in necklaces. I was determined to live my life without dwelling on what could be. I was going to find a way to prevent my sight from going, and since traditional western medicine had no answers, and no treatment, I needed to find another way. As a child I had grown up with homeopathy and chiropractic care, so I knew there were other options out there, I just didn't know what they were. This was back in the mid 90's, before google, before the internet, before pxe.org existed, finding any information about PXE or potential treatment was VERY difficult! The National Association for Pseudoxanthoma Elasticum, Inc.(http://www.pxenape.org) was around but the information they had was VERY depressing to read. So I submerged myself in local culture, I grew up right outside of Chicago so this was very easy to do. School was no longer a priority, I just wanted to live life! My priorities became friends, live music, making jewelry, skateboarding, traveling and dancing! I soaked in everything I saw and never took my sight for granted again.
At the end of my junior year of high school I went to Canada for a youth retreat, little did I know this was the trip that would change my life FOREVER! Once there I was introduced to one of our camp counselors who was a massage therapist & Reiki practitioner. I had already received massage before, but I had never even heard of Reiki. I signed up to get a session with her, and that session changed my path in life. When she placed her hands on me I felt something I had NEVER felt before! It was amazing her hands felt like heating pads, hot and comforting, I felt completely safe covered in a warm blanket of Reiki. I felt like this was the answer I was looking for, since the Dr.'s can't help, something inside told me Reiki WILL! I knew after that session that I had to learn Reiki, especially when I found out I can work on myself. So I knew it was now my mission to find a teacher, learn Reiki & teach it to everyone I know!

To find out more about Reiki visit: www.livingahealinglife.com, www.reikiclasses.com, www.reiki.org

This is a photo of the youth retreat where Reiki found me

Monday, January 18, 2010

In the beginning

When I was about 12 years old I found this patch of skin on the back of my neck that didn't quite feel right. It was bumpy, but not red. At the time I didn't know what to think or do about it so I left it alone, never telling my parents. Then I noticed the patch of bumpy skin again when I was about 16, it had gotten larger and started to wrap around the back of my neck. So, I finally decided to make an appointment at a dermatologist, I though maybe they could give some type of cream or pill to just make it go away. I wish it would have been so simple. The Dr. had never seen anything like it, so they needed to do a biopsy. Not words you want to hear, ever, but especially when your that young. When the results came back they told me I had a VERY RARE genetic condition called Pseudoxanthoma Elasticum also known as PXE (more info at pxe.org & pxenape.org). They told me that this was a connective tissue disorder (they have since changed their mind, it's now classified as a metabolic disorder) and that it affects my eyes, heart, veins, arteries, stomach, and skin. Then they brought in a camera and a team of Dr.'s, not ones that were there to help, ones that were there to look. This was very intimidating to me at the time. None of them had ever seen anyone with PXE, since we're so rare (I still haven't met anyone in person who also has PXE). They told me I could lose my vision at any point and that other things were probably going to go wrong with my heart too, but they didn't know how to predict if or how it was going to affect me(Dr.'s still don't know what to do with me). I was advised not to take part in any activities where I may hit my head since this "may or may not" speed up the process of going blind. This was not news that was easy to hear. Especially as a visual artist! As a child art a music were always a huge part of my life. I started with a passion for ceramics, and by the time I was 14 I had an opportunity to take a Jewelry class at my High School. Creating silver jewelry became my life's purpose. It's all I did, and I thought it was all I would ever do. I wanted to open a custom handmade jewelry store...going blind wasn't part of the plan! Yet here I was being told that could happen at any day!
I had a very important decision to make that day... do I become a victim and wait to go blind, or die, without doing the things I love? Of course not... that was NEVER an option for me. I was not going to change who I was based on something that "may or may not" come true. The next day I left for 2 weeks of water skiing, something I was "advised" against doing. I continue to live a very active life, participating in many "dangerous" activities for someone with my disorder. I am determined to do anything and everything I want to, I would rather go blind and have life experiences than see and sit on the couch doing nothing. The best gift PXE gave me was to value all that I see and all that I do, to really learn to live in the moment!