Hi Everyone,
Well, we survived another week and it was a tough one! My surgery was moved up to tomorrow which gave me one week to get emergency hours approved as well as find nurses to cover the shifts we need to help Caitlin care for Corey while I’m recovering.

That sounds easy right? After a few more appeals, letters of medical necessity from my doctor and Corey’s doctors the hours were approved in the 11th hour. In addition, Corey’s had severe anxiety when she hears “nurses” are coming to help; she no longer wants nurses to help. She is afraid I’m going to leave and not come back.

Let’s add another challenge; Daily headaches that lead to Migraines. It’s not uncommon that survivors have headaches. It’s also possible that the extreme heat and wet summer are contributing factors. Unfortunately, medications for sinus issues are forbidden because they counteract her seizure meds and we don’t want to increase her current migraine/seizure meds because it would affect her cognitive strides…so, we ride them out.

You all know I seek inspiration to help us through our daily challenges. After this week I needed something powerful to pull my boot straps back up. Yesterday I found an entry from Kara Swanson on Brainline.org (March, 2013) that lifted every ounce of negativity still lingering from the previous week. Kara is a brain injury survivor. Her entry was written for all of us. Her words have readjusted my perspective, optimism and spirit. Thank You Kara; I’m ready to face the new week…xoxo

What does it mean to survive?
We hear the word all the time. In this brain injury community, especially. We toss it around and heap it and don it. Survive. Survivors. TBI survivors…I was wondering how it is that so many of us feel so blessed and gifted of this life after injury while so many feel so cursed and struck down. Is it simply a matter of severity of injury? I think part of it, at least, has to do with how we view what it means to survive. What our own definition of it is and how that evolves over time.

Think of your own situation…what words and phrases come to mind when you think about surviving TBI? I hear from so many survivors and, for many, the term “survived” is personalized, surrounded by and thrust into a tangled mess of phrases that include, “Got stuck with”, “end up dealing with”, “I lost…”, “I can no longer…”, “I don’t have…”

Perhaps it is our personalized definition of the word which plants the seeds for our recoveries, successful or not. Perhaps it is how we define what has happened to us that set the tone for how the rest of our lives will be. I think two things are important regarding this: One, it’s knowing and searching and being aware of how we have defined our survival. And two, it’s seeking to redefine it and to help sculpt its meaning over time. A definition, by its very nature, is the answer to the simple question, “what is it”?

I’m sure most of us have a similar definition of brain injury at the beginning. What is it? It is scary. It is painful. It is life-changing. It is horrific. It is unfair. It is all-consuming. It is confusing. It is and it is and it is, a thousand times over. But what is it now? What is it six months later? A year later? Five? How does your definition of surviving change and how have you sought to change it?

I close my eyes and picture the word “survive”. While I can recall the words I first associated with my injury, I no longer feel the emotions attached to those words. Instead, the words and feelings and phrases which come to me now are:
To emerge
To shed
To transform
To blossom
To change
To reach
To improve
To prioritize
To sift
To reveal
To love clearly

For me, to have survived is to have been given a gift greater than any I could have imagined before I brushed past death. I don’t simply wear “survivor” around my neck like the anchor of some unjust sentence. I celebrate it. I dance with it. I giggle with it. I drink umbrella drinks with it. I pull it near and hold it close. I dust it and clean it and polish it. What do you do with your survival?

I’ve had seventeen years to practice and, granted, to survive does not mean to recover from all of our symptoms. Recover. Heal. We can enjoy those things, even with symptoms that refuse to leave. Refuse to flee. Today my legs started doing their silly “I have no bones” thing around 2 o’clock. I came home and napped. I gave the napping no permission. I did not invite it. It came and swallowed me up and sat on me. I napped. But I don’t require all the symptoms to heal in order to define myself as recovered. It is the changing definition of survival. Of recovering. Of Living.

I have survived many things. I survived a serious carbon monoxide scare as a kid. Sexual abuse. My parent’s many strokes and their deaths. Losing my house and my perfect credit. My catering career. There was that drunk driver who rear-ended me and that breast mass and that near-miss in the intersection on vacation. There was that abusive relationship and that statistics class in college and that horrible bout with food poisoning. There was the bad hair of the 80’s. Double pneumonia. That gland tumor and every time Michigan loses to Michigan State or Ohio State or Notre dame. I survived them all. What have you survived? Brain Injury. Divorce, perhaps. A medical scare. A lost job. A car accident. An abusive spouse. A felony conviction. A hazing, Bullying. Loneliness. Desperation. Depression. A broken heart?

Life and Living is the very definition of surviving. It is what the living do. We survive. In the absence of survival comes our death and so, when we survive, it is not the dreaded anchor around our necks. It is not some awful curse and sentence. It is the opportunity to live; and to live better. To put a day or seventeen years between us and the things that we survive.
To embrace the emergence of transformed selves.
To come through.
To come out of.
To emerge.

Definitions reflect that particular moment when something is described and characterized. Definitions are meant to change. Able to change. For the brain injured, begging to change. What does it mean to you to have survived?