Monday, May 18, 2015

"Whatever opens us..."


I’ve been very absent from this blog for a while ~ I’m been under construction in so many ways.  There’s not much to do, but dive right into it ~ so here I go, big swan dive into the deep end ~ no shark bite suit needed.

I was briefly chatting with a colleague a few weeks ago about elective brain surgery.  I asked the question; how come there is lots of data out there about knee and hip replacement surgeries and not much info at all when it comes to elective brain surgery? To me, a survivor or brain surgery, this seems like a no brainer! Who in their right mind chooses ~ elects ~ to have brain surgery? Well I did, and by the grace of God, I found the best surgeon in the world right here in New York. I am clearly in the minority, though. Every week I read a story about someone who’s searching for a diagnosis for years and years. Then, once they have a diagnosis, they don’t have many options when it comes to getting decompressed for a Chiari Malformation.

Either the medical community will dismiss Chiari as something you can just live with and medicate the heck out of those headaches and other pains or they rush you to the OR before they have a clear surgical plan. Both of these options don’t have good outcomes.  Perhaps if our General Practitioners knew more about Chiari and associated diseases, then maybe that would give Chiarians a better chance at a full recovery and a return to a better quality of life.

Since I’m not a medical doctor myself, I’m now going to share something that is near and dear to my heart. I know that I can’t be the only one out there who has had this experience after brain surgery, but no one is talking about it and it’s making me a little bit crazy! NOTHING and NO ONE could have prepared me to the fall out and aftershocks of brain surgery recovery. The doctors did a fantastic job medicating me and making sure I went to physical therapy so that I would regain full range of motion in my head and neck. No one spoke of the gut wrenching, heart breaking, soul re-boot that I experienced and continue to feel.

Maybe I am the only one who had this experience…Mark Nepo has put my feelings to words with this quote:

"I went through a door and when I went to go back out that door ~ there was no way to go back to the life I had lived ~ everything had changed." ~ Mark Nepo

I am extremely grateful for a second chance at life, waking up from brain surgery is something I don’t want to do EVER again.  Life, however, is forever changed for me. It’s hard to explain in words, but I woke up a new person. Life has changed a lot for me over the past couple of years. After 20 years of marriage, I am single again ~ eager to see what awaits around the next windy bend. ~ Deep sigh ~ remembering to breathe every now and then sometimes requires a conscious deep breath ~ still. 

I wonder what would happen to other Chiarians if they and their families had a support group to go to where they could talk about the emotional fall out after brain surgery. Of course, they might look the same with a small addition of a zipper scar in the back of their heads, but I can bet that there’s a whole lot of turmoil going on inside of their hearts and minds. I know ~ I’ve been there. Expectations need to be voiced and adjusted. Life doesn’t really pick up where you left it, how can it after going through such a life altering experience?!

Even after all the big change in my life, I wouldn’t choose to not have surgery if I had the chance to go back and do it again. Life is brand new and sunnier now. I fee like I live more in the moment and certainly have less of a filter. If there is anyone out there reading this and you want to chat about this more just leave me a comment. How do we as a chiari community get the dialog started with our medical community about treating patients’ emotional/spiritual health in addition to the physical?



1 comment:

Bent Spoons and Broken Butterfly Wings said...

I hope you get this. I JUST came across your blog,& I too feel like that quote sums things up in a way I could not. My decompression was 11/1/08. So, I just passed the 7 year marker (hard to believe I didn't consciously remember that date but I absolutely have been more emotional. Thanks PTSD.) I have Chiari II, because I was born with myelomeningocele, which is the most severe type of a birth defect called Spina Bifida. I went 30 years with a myriad of symptoms, seeing a myriad of specialist who did millions (or so it seemed) of tests & even tried behavior and seizure medications before an amazing neurosurgeon in Chapel Hill,NC took the time to TALK to me, ask questions and LISTEN. I wasn't prepared for the after surgery days but I got through. I haven't truly found the support my soul has longed for, so I will keep on until I find it. Or it finds me. I'm sorry I went in and on. It's just one of those days when I can't stop letting it out. Take care and thank you for sharing your experience and heart!