I wrote a memoir
I sometimes have a hard time believing that I went through everything that I have and that I went from comatose to where I am now in just a few years. It's a big part of my identity as it affects every second of my life, so while it's normal to me, it's far from normal. My neurosurgeon was unable to find any recorded instance of someone else who went through the neurological injuries and trauma and survived beyond a vegetative state.
So I wrote a memoir about it.
I open with the first instance of my determination to live, no matter the odds; it's definitely foreshadowing. But the focus of the memoir is from January 26, 2016 to July 7, 2017.
Prior to my first brain surgery, the time between the surgical consultation and the actual surgery was perhaps the most anxious I have ever been in my life. I spent hours looking at my MRI scan and the cystic mass in the pineal region. It was a very dangerous area to operate on, but I kept looking at the surrounding structures and thinking about how much I was suffering: severe headaches, dizziness, unable to look up, SEVERE fatigue, and so much more was unrelenting and I was ready to end it. I hoped the surgery would end it, but if not, I would.
I began to have hope that the surgery would help, but I was terrified. I had chosen my doctor carefully, so I wasn't worried about his ability to do it, just the fact that I was going to have a hole drilled in my skull. My dad didn't want me to have the surgery and tried to convince me not to have it. He wanted me to find a better neurologist - but it was too late for that and it wouldn't remove the lesion anyway. My mom was just nervous, but told me that she knew it was my choice. My friends and other family were mostly shocked and didn't know how to react.
I had my preoperative tests done January 27, 2016 and had a free day the next day before it was time for surgery. My 21st birthday was soon and I was disappointed that I would be spending it recovering from surgery. I had hoped to have a party with my friends a couple of months later - maybe during spring break. I tried to focus on the future and not let my mind wander to the surgery itself.
Taken shortly before my surgery
If you've read this blog and my story, you probably know what happened when I had surgery. I go into detail about the memories I have when I was in a coma and then later, "locked in", and the thoughts I had that I couldn't share.
The months following were a chaotic mix of therapies, medications, and facilities as I fought for my life and to regain as much of my life as. I met so many people and learned so much more about myself and celebrated every small victory I could and hoped they would add up to greater victories in time.
My final stop was the second most anxious I'd been in my life. I had come so far, but I didn't know what the world was like outside of hospital walls in this body that was both familiar and completely new to me.
June 5, 2017 right before going to the rehab hospital
Writing this memoir, but also this blog has been a cathartic experience. I started out journaling, but when I was recovering, I read the stories of other disabled people and it helped me feel less alone and like I could rebuild my life, so I decided to share what I wrote with others. I hope that there are others out there that can read this and feel that same sense of community and strength that I did reading about others with neurological issues.
It's called "Another Piece of the Puzzle" as I've been gradually solving the puzzles of my health and coming closer to the bigger picture.
I'm currently working on finding out how to publish it (aside from the company with many online products) and I welcome advice from people who have had published books.
