Coma after Brain Injury

Help for Families with Coma After Brain Injury

By Gordon S. Johnson, Jr.

While I have never sat in the waiting room waiting for someone to wake from a coma after brain injury, I have helped those who have for a generation. I began my advocacy for those suffering from coma after brain injury a generation ago with the widely read http://waiting.com. In 2010, I felt like I needed to record the voices of those who have been through what you are going through and launched our TBI Voices project which recorded the video interviews of more than 30 people who survived coma after brain injury.

In the TBI Voices project, I listened to the family members, listened to the survivors of coma after brain injury and shared what I had learned with the lessons they were sharing with me. I want to listen to your story, will learn from what you tell me and hopefully be able to share with others what you teach me, as I hope to assist you with what I have learned.

At the cornerstone of those lessons is that while brain injury is hard, don’t ever give up. I heard it from Betty in my second interview and from almost everyone else.

Helping the Caregiver of Someone in a Coma

It is my belief that the information we provide can soften the impact of waiting for someone to awake from a coma after brain injury. It is not just the information we provide but the connection to those who have gone through what you are going through in the past. As Becca said on our seminal page:

I remember passing through the emergency room door two months after my husband’s the brain injury coma began and seeing a family who reminded me of me on that first day… I needed to tell them it would be okay, that it would get better. But I didn’t know where to what to say without intruding. And then I realized that it was happening all over the world, every day; and when it did, I felt so alone, you will feel were so alone.

We don’t want you to feel that alone. In 1992 for Becca, there was no internet. In 1996 our efforts started to bring the shared experience of others to those who needed it most. Every year we tackle her mission with a new fervor to reach out to you when you need the help the most.

Helping the Survivor of Coma After Brain Injury

The lessons of our web advocacy also come from brain injury survivors. Not even a coma forever silences the voice of the person who awakes. In the TBI Voices project, it was primarily the survivors who were speaking to me, to the world, letting others know that because they committed themselves to recovery, they were still there, that the person they were before the coma, still exists. Coma will change you, brain damage will change you, but it doesn’t eliminate who you are, or necessarily dictate who you will become. My own coma lasted only twenty minutes yet caused a seismic shift in my life. But like the others I interviewed on TBI Voices, it did not make me a different person, just shifted my approach to the future.

Lethan Candlisch and his epic drama Who am I, Again asked the hard question and forced me to go looking for answers in both my own life and the lives of others.