Book Review: REWIRED

Established in 2006, the CERN Foundation is a nonprofit organization dedicated to improving the lives of those affected with ependymoma (a specific type of spinal cord tumor). On their site, they share survivor’s stories. One of the survivors featured on their site is Dawn Standera, the author of REWIRED: A Story of Recovery from Spinal Cord Tumor Surgery. Here is my review of her book from 2017.

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Today I want to share a resource with others out there who are also on this journey: Rewired, a book by Dawn Standera. On Amazon, the book is described as follows:

Adults with spinal cord tumors are exceedingly rare, and written accounts of what it’s like to survive tumor-removal surgery are even more rare. Through this book, Dawn hopes to give those who are on a similar journey the reassurance that they are not alone. She not only offers a glimpse into what their post-surgical experience might be like, she also offers insights on how they might accept their body’s new language with curiosity, humor, gratitude and grace.

I bought this book after receiving my diagnosis and found that reading it helped me to not feel so alone in my diagnosis. Dawn doesn’t sugar coat any aspect of her journey, but she does, somehow, convey her optimism and her determination to not let this beat her!

I highly recommend this book to anyone with a new diagnosis (or caregivers who need some insight into what your partner is experiencing).

If you are more of a video person, you should probably check out her presentation at the following link: https://mediaplayer.mdanderson.org/video-full/F52169CD-878C-4F65-B75B-A2B73DCBA0E1

Your scars are beautiful…

I have a confession to make. I am a bit of a royal watcher. If you, like me, love a good royal wedding, then I am sure you already saw stories about Princess Eugenie’s stunning wedding gown. You probably also noticed her decision to show off her scar. If not, you can get caught up at the following link:

https://www.bbc.com/news/uk-45835711

In one of my previous posts, I shared the story of another bride who made a similar decision. In that post, I reflected on the impulses that lead to such a decision. While Eugenie is not a SCT survivor (she had scoliosis), I found it interesting that once again I was finding a woman who felt compelled to make her scar a part of her special day.

I really do believe experiences surrounding our diagnosis, treatment, and recovery leave a mark on us. Our scars are the outward sign of the inner changes. I think many of us end up having a special relationship with our scars. We may put on a brave face and soldier through our days as if nothing has happened to us, but the scars remain. They tell the true story, revealing the challenges we have faced and serving as a testament to our bravery and our resilience.

So bare those scars with confidence.

Aaron’s Story

When I was first diagnosed, I remember being bombarded with information about what could go wrong. I didn’t see many examples of how this could “go right”. Then one day I stumbled upon this video. It helped me to have hope as I faced the surgery. I hope it can also help other people who have been diagnosed and are trying to find the strength to face the next step.

scar(r)ed.

This is probably one of the most beautifully hopeful posts I have seen from someone who is sharing their post surgery experiences. Since having my surgery, I have wondered at the number of people posting photos of their scars – proudly, almost defiantly – on the Spinal Cord Tumor Association Facebook page. I have even noticed that I have a fascination with my ever evolving scar. I want the world to see it. I want them to know and recognize that I am a warrior. While I spend much of my time and energy trying to live my life as if this tumor didn’t change me, the undeniable truth is that is has changed me. The scar is tangible, outward proof of the changes (emotional, psychological, and physical) that I have experienced in the past six months. And here, in this blog, is a warrior who very eloquently explains what so many of us have felt. Take a minute to read her blog, and keep rocking that scar.

aperture expanding by Kelsey Pfleiderer

When I first started dating my husband Luke, I covered my mouth anytime joy tried to sneak out of the corners of my mouth. This was something I didn’t realize I had learned to do over the years, but it is something Luke caught onto right away. A few weeks into knowing each other, I received the first ever coveted “Goodnight, beautiful.” text from him. My heartbeat quickened and, unknowingly, I covered my shy smile with my left hand. Seconds later, he sent a second text saying,

“Let me guess, you’re covering your gorgeous smile and your green eyes are twinkling. Right?”

What. The. What???

Puzzled as all heck, I glanced around my apartment wondering how in the world he would have known something about me I didn’t even know about myself (also wondering if this incredible, seemingly normal man I had already known would be my husband was somehow…

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Tumors, Tears, and Twix

I promised that I would help you connect to other people who have faced a spinal cord tumor diagnosis, so here is another winner. Her blog is much more personal than mine, and her writing is fresh and fun even when talking about things that are anything but fun. She stopped posting several years ago. I can only hope that is because she is too busy out exploring the world.

A Real Pain in the Neck

I hate giving bad news. Having had training on grief counseling both in military and civilian settings, I am not a stranger to delivering bad news in my life. However, when the not-so-awesome news is about myself, I am really crappy at telling and retelling the story and delivering the information. It is kind of exhausting. Therefore, as I go on this next little adventure, I have decided to set up this website for family, friends, and anyone else who’s damn well interested about the goings-on in my life.

It all began about four years ago. (Don’t worry, I’ll try to make this as brief as possible. I hate long-ass tales of woe.) As I was serving in Kosovo during my Army deployment as a Chaplain Assistant, I began having some bad pain and weird sensations in my right arm and hand. This is very important for a soldier to…

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Do What You Can’t

I know… it is an advertisement, but I saw it during my first week back at work after my spinal cord tumor surgery, and I have to tell you that it really resonated with me! I was feeling so broken, so fragile, so incapable of facing the challenges that were bombarding me. Then I saw this ad and my eyes filled with tears. Do what you can’t… that is my calling for the next year as I tackle this recovery. DO WHAT YOU CAN’T.

Kinship

One of the things people repeatedly say about getting a spinal cord tumor diagnosis is that it is hard to find people who “get it”, and I have found that to definitely be the case. So it is always nice to find people who are willing to share their story. Just stumbled across this blog by a fellow SCT warrior, and I thought I would share.

http://myspinalcordtumor.blogspot.com