One of things about being undiagnosed for a very very very long time (thirty years in my case) is that not only do we have no idea what is happening to us, but we also don’t know how to prevent worse things from happening either.
Having had undiagnosed EDS my whole life, periodically I or one of my affected children would very suddenly lose consciousness. The huge story and explanation behind it all is for another day, but suffice to say that two of us especially have had this happen to us on more occasions than we can count.
Yes, it is a little like fainting … on steroids. And regardless of how long each of us was “out” for, one of the massive side effects that was rarely diagnosed or dealt with well, was the effects from what happened on the way down; …. our heads would smash full pelt into a desk, a piece of furniture, or often, onto a concrete tiled floor, resulting in a concussion. Sometimes bad, others “not so bad”, we would be rushed to hospital, there would be huge drama and worry, and anyone attending the scene would find little to no pulse, and everyone (including medical staff) would be in a massive panic.
A drip, sometimes a night in hospital, all kinds of brain scans looking for epilepsy, and of course the major tests all came back as “normal”, so each time the ER doctors would breath a sigh of relief, his or her job was done and we would be sent home being told to be thankful that we are totally fine. But we wouldn’t be fine. We would be slow, and foggy, and sore and frightened. When it was me I had small children to care for and I simply had to “suck it up”. When it was the children I could see, feel and understand what they were going through and so I would keep them home for a week or too and let their brains recover.
Slowly the medical world is waking up about concussion, and at last it appears to be widely recognised that concussion even on a small scale, is a level of brain injury. I want to take nothing from everything that is massively worse about all kinds of other brain injuries, but I need and want to highlight that that hockey stick to the head, that head smash into a piece of furniture when you go down either from fainting or anything else and that body collision on the playing field, are major impacts on one of our most precious organs; our brains.
I am passionate about this and am thankful for my own teaching and background and my gut to care for my own and my children’s brains when we took a beating, but it is not second nature to many parents, teachers, coaches and team mates. We need to get word out there to teach people to look after their brains and we need to be educated on concussion.
So when a few months ago I stumbled on this project, Flooded: A Creative Anthology of Brain Injuries I grabbed it with both hands and asked how I could help. I can’t tell you more strongly how important this is, in everyone’s life. It is one of those things that can happen to literally anyone. House bound people are at risk of falling and extreme athletes are at a completely different risk of exactly the same injury, but from a high impact bodily collision or a fast flying ball. The rest of us fall somewhere in between but the chances of having a concussion at least once in each of our lives is extremely high.
Victoria Griffin is one such person. An elite athlete who in January this year was playing softball at college when she had such an injury out of nowhere… brought about by a simple ball to the head. She spent four months recovering and as a writer and an avid book reader, she and her family found very little literature to help them on this extremely scary and serious journey. When I contacted her and asked her about it she shared with me that:
“On the surface, the concussion cost me my senior season of softball and four months of my life. But in reality, it left scars so deep, they are difficult to describe—which is what prompted me to write about the experience. When I realised there was no publication solely dedicated to brain injuries, I began to truly consider how concussion awareness is approached—with facts and statistics—and how inadequate that is.”
And so began her dream. To create a book of stories, in all styles and genres, both non-fiction true accounts and fictional but medically correct stories, to bring these experiences to life. To give something to those who find themselves in this situation, so that they can reach out and be heard and to understand that what they are going through is very normal. To educate those who have never experienced concussion so that they are aware when they face it or can be there when a team mate or loved one is suddenly thrown into this extremely scary situation. Thirdly, she wants to showcase some brilliant writers in the process, so that the book will in no way be a bunch of boring statistics, …rather it will be a work of art for anyone to read and enjoy as well as learn from and remember. She shared with me the following in her words:
“I can’t explain to you what it was like to have a concussion, not like this. I can’t tell you what it was like, but I can show you. I can write a story that makes you feel the fear of being alone when a flooding attack happens and wondering if you’ll get help before you stop breathing. I can write a story that makes you feel the overwhelming depression of losing the entirety of your identity. I can write a story that makes you laugh at the silliness of staring at a light for ten minutes because you believed it wasn’t there.
By compiling an anthology of fiction and creative nonfiction, we can use multiple genres, styles, and tones to truly convey the experience of a brain injury. Because it’s not what it looks like or how many people it happens to that matters. It’s how it feels and how it impacts the lives of human beings.
She has worked tirelessly to make this dream happen, and I think that the world needs to hear what she has to say! I cannot tell you what a different it would have made to myself and my children if we had understood what was happening all those times that it happened to us. So I am passionately behind this even though only a few months ago I had never even heard of Victoria Griffin or Flooded!
But as with so many dreams in life, all this one lacks is funds… so she has launched a Kickstarter Project to make this dream come true. This is more than a dream to write a book, it is about educating, and helping, and bringing the reality that the world is only now starting to wake up to, ….of concussion and what we need to do about it, both in prevention and in recovery, but also in supporting those who are going through it.
I believe that this is a vital and brilliant idea which will benefit many, both now and in the future. If you even vaguely think that you may buy this book when it comes out, then why not spend that money now instead to help make it happen, for if her team are unable to raise the approximately $11,000 then no one will get to read it, and it won’t happen. ALL the details are here:
- Where do I donate?
- Details of the program (including a fabulous video and explanation by Victoria herself)
- What do I get for my donation?
- Where is the money going to? (including a breakdown of the budget)
- How can I help in other ways? …. Spread the word! Share a link to the Kickstarter page on social media. Tell your friends and family. Help us to turn this project into a movement. And of course, you can visit the Kickstarter page yourself, and pledge to support the project! We would love to have you as part of the Flooded family.
One final word from Victoria:
“When I realized I was concussed, my first reaction was to try to hide it because I knew I would be benched. What if I had read an anthology like Flooded? What if I had known what could happen to me? I was lucky. I walked away from my brain injury with no permanent damage, and a poor decision early on did not negatively affect the outcome. But it could have. And for many, it does. Reading an anthology like Flooded may help others to make better decisions in such a situation.”
How can I help?
[I suggest writing a personal conclusion and appeal to your readers.]