It's All In Your Head || Thoughts & Feelings Of A Life Changing Diagnosis

One of the hardest things for me when writing these posts is knowing where to start.  Especially with a post like this .. I want it to be personal, but not too personal. This body of work is very intimate and close to my heart but I worry about crossing a line with my readers//viewers and don't ever want that. 

Before I actually do get started, I suppose I should give you a warning that this might be a bit long in length. 

I tend to get a little long winded when it comes to things like this.

As far as where to start … I guess the beginning is as good of place as any, right? I was truly hoping to have an artist statement prepared before I shared this body of work, but I've decided that I want to share it while it is in progress. I want to share the journey of creating new pieces, where my life is taking me, etc. 

So, back to the beginning.

Back in December of 2011, I wasn't feeling well. Not your normal "not feeling well" … I knew something was really wrong with my body. I had a whole list of symptoms that just sort of came out of the blue, and after a conversation with a dear friend of mine, she convinced me to make an appointment with my family doctor. To this day, I'm still so thankful that I took her advice. My family doctor didn't really know what was going on with me either, so he ordered an MRI of my skull//brain region and thought we'd go from there. Little did we know that the results would be life changing.

A few days later I received a phone call and was diagnosed with something called a Chiari (kee-ar-ee) 1 Malformation. What on Earth is that, right? In the most basic terms, it means that my cerebellum is extending downward into my spinal column. This news obviously came as a shock and was beyond terrifying. I was expecting my MRI results to come back normal, to be prescribed some sort of antibiotics or something, and feel better in a few weeks. Boy, was I wrong. I was referred to a neurosurgeon for a further diagnosis and to figure out a plan of action.

My neurosurgeon was beyond wonderful and explained that apparently this is something I was born with, but he couldn't explain why this all of a sudden presented itself. In fact, no one can really explain why. Some people have this and never even know. (By the way, this affects something like 1 in every 1,000 people, so it's not really all that common of an issue). He ordered a few more MRIs … including a special one to show whether or not my spinal fluid was being blocked by my cerebellum and said that we would figure out the plan of action from there.

Again, the results weren't what we were hoping for. In fact, my spinal fluid is not going where it needs to be. It is, but not completely. So I also have something called Syringomyelia. Practice saying that enough and you get really good at it. (Sear-een-go-my-a(like the letter)-lee-yuh). So what this means is that I have cysts in my spinal cord, and it actually turns out that I have a lot of them. Some of them take up as much as 75% of my spinal cord… pushing and causing a lot of pressure on my spine. Which, explains a lot of the symptoms I was, and am, experiencing.

Turns out these two go pretty hand in hand. So now that the issue had been figured out, this neurosurgeon referred me to another who did the surgery that I would need. Turns out the first guy (who I really loved) didn't do the surgery (he was a sort of "general" neurosurgeon), and obviously wanted me to see someone who would be more qualified. So, onto the second neurosurgeon. This guy was beyond amazing. He was hilarious, honest, trustworthy … everything I would want. Turns out, he stopped doing decompression surgeries 5 years ago. He was honest and told me that he stopped because the results were frustrating. Alright. Onto a third.

So, I met with a third neurosurgeon last week. Again, I love him. I've had excellent luck… and I feel like this guy is by far the best. I'm really thankful to have had such excellent experience as I have had with neurosurgeons. Not all of the doctors I've had have been so wonderful, and maybe it's because they are surgeons, but they've been the nicest group of people I've dealt with. This guy even specializes in Chiari Malformations and Syringomyelia! Finally, seven months later, I have good news. 

This journey isn't done here, but again, I don't want to cross a line with my readers//viewers, and I feel that too much more and I will. This hasn't been an easy time in my life. The past seven months have included more doctors appointments that I can even begin to explain. I've seen 3 or 4 neurologists along the way, 2 different family doctors, a rheumatologist, a pain management specialist, a physical therapist, an endocrinologist, and maybe even more (not to mention the hospital stays, the urgent care trips, and the late night emergency room visits). This has been more than wearing both mentally and physically and has taken a toll on me in a number of ways. I feel as if I've been tested more than a lab rat. 

And this is where this new body of work comes in (finally, right?). As an artist, I've always felt that the best way for me to personally deal with what is going on in my world, is to create something. This work is still in progress, as is my condition and my journey towards getting better (as better as I can). I've been wanting to share it, but I was waiting until the moment was right. To be honest, I'm not sure when the moment will ever be "right" and have decided (like I said) that I want to share it while it is in progress. 

This work is extremely different than anything I've ever created created before. All of the pieces are composed digitally using appropriated imagery, Photoshop brushes, and personal scans - none of them are composed using a physical camera. Every piece focuses on a thought or a feeling that I've experienced and more than likely struggled with. This body of work is also more intimate and more abstract than any body of work I have created to date. As I stated before, it's still in progress. There are a few pieces I'm currently reworking and there are even more sketched down on pieces of paper all over my desk. 

I apologize for this post being so long winded (but hey, I did give you a warning) and I truly hope that I didn't cross any boundaries as far as the artist//reader//viewer relationship goes. One last note before I end this, I am scheduled to have the necessary surgery needed to help (I never know the right word.. it isn't a cure, or a fix, it just slows the progression…) this situation, so I'm hoping there will be lots of work created while recovering.. which of course, I will share! 

Thanks for taking the time to read this small novel.

Hopefully now you can both understand and forgive me for being absent for months at a time! 

Comfort In Solitude. 8" x 7.5"

For Those That Will Never Be. 5" x 5"

Time Does Not Heal All. 10" x 3.5"

To Live Forever In Death. 5" x 3"

Fragmented Mortality. 12" x 12"

With The Birds. 7" x 7"

(Edited to add: I was reading back thru some of my old posts and noticed I've wrote a few things I never followed up on. I never scanned in the film from that "Read More Books" building. Those negatives are laying around here somewhere…. I really should do that &; maybe I will once I actually have more than a day of down time. I never posted the link to the Tumblr my tattoo was featured on; and I've done lost that. But, it was on there. In the post "What's next" I wrote about how this body of work would be a mixture of scanograms and images shot with my camera to create narratives and whatnot… it's funny how your ideas develop and mature over time! Interested to read back through and read what I wrote and how things change! )