I Found my Brain on the Radio by Kim Jefferson Justus

My misdiagnosis – Can Anybody Hear Me? 

In a Flash

Kim Justus

If you would have told me two years ago that I would become a published author and radio host with a worldwide reach, I would have laughed uproariously in your face.

In 1995, I suffered a ruptured brain aneurysm that came very close to killing me. After the original misdiagnosis, I was initially spent eleven days in a coma, and underwent a craniotomy. After that, no one ever suggested I do any follow-up testing, have any ongoing therapy, be referred to a support group, or do anything—except “give it time to heal.”

I thought the doc meant the zipper head wound, the surgical pain, and disrupted brain tissue. There was never a head’s up, no pun intended, that it might not be as easy as that. No one said, “Your life changed forever the day your head exploded. It will take time to see what permanent deficits or challenges you’ll be facing down the road.” The support and validation just weren’t there. It was as if no one could hear me.

I looked normal so what’s my problem?

Writing a journal entry.

Writing a journal.

I kept a journal in my initial year of recovery.

It wasn’t too long before I “looked normal and of course thought I could slip back into my previous life, so I tossed the journal into a plastic bin in the basement. Events happened in my life, which let me know it was finally time to write my brain injury story.

When the book, In a Flash: Miracles Here and Beyond, was released at the beginning of 2012, the viral nature of the Internet had taken hold. I was shocked and humbled at the amount of email I received. I heard from survivors all over the world who could relate to my experience. At that point, I realized that in all of those years, I had never met another survivor. It took writing a book to be able to meet others who had suffered a similar experience. I was not alone in my misdiagnosis.

Becoming a radio host

Radio programs offer support and information on brain injury.

Radio programs offer support and information on brain injury.

Several months later, I was contacted by Craig Sicilia, who had started a weekly Internet radio program three years before, called Brain Injury Radio. He was about to expand their platform to an every-night experience. He had heard me interviewed several times, read my book, and was now inviting me to be the Wednesday night host under their umbrella. I couldn’t believe the path my life had started down! My show is called Recovery Now.

Brain Injury Radio Network (BIRN) has ten different hosts, each with their own style. The shows are on each night at the same time, running for three hours. We interview survivors and provide educational information on “life after brain injury” and issues related to caregiving. We discuss the problems we face as well as the solutions we’ve found. In the simultaneous chat room, some gather to discuss the subject at hand, and some use it as a means to bond with other survivors. We also take callers, so these shows are very interactive. We always invite fellow survivors to offer show ideas for subjects they’d like to hear more about.

I’ve learned more from other people with brain injury in less than a year on BIRN than I had gleaned in the seventeen years before. No one ever needs to be so isolated in their experience again. BIRN fills a much needed gap for peer-to-peer support. As a radio host, I was catapulted into a world of awareness and advocacy.

Few of us hosts had experience in radio before. Initially, we all struggled to learn the ropes. We hung in there, because we believed in Craig’s vision. Awareness needed to be created, which would proceed to advocacy, leading to more survivors being heard, lending itself to action compounded by the many. Voices in smaller numbers have fallen on deaf ears. We are now in a position to be heard, and not swept under the rug of healthcare.

What I’ve learned about  brain injury from survivors

As my show’s host, I have encountered several recurring themes among survivors. One is that regardless of the source of the brain injury, many of the remaining residuals are the same. These include issues such as becoming easily fatigued, short term memory problems, vision and sleep disturbances, frequent headaches, depression, anxiety, and many times PTSD. Additional residuals include what I call “sensory overload” and “full basket syndrome.” The traditional medical approach to treat these symptoms seems to be to throw pills at them. Alternative medical practices include EFT, acupuncture, cranial sacral therapy, massage, and diet. One of the big factors in how far we recover often has to do with attitude.

Another theme is that many brain injury conditions have been misdiagnosed the first time around, which I find rather alarming. This happened to me in 1995, but I find it incredulous that these incidences are still far too frequent. Too many survivors have not felt validated when they describe their aftereffects to doctors. Many guests and listeners I speak to have been relegated to what I call, not so affectionately, “the shrink bone yard.” Traditional medical practices saved most of our lives, but there seems to be a grossly inadequate understanding about what we go on to live with, many of us, for the rest of our lives.

My hope is that shows like those on BIRN will help educate and validate both survivors and their caregivers. Then, armed with that newfound information, we will be better able to communicate with and help educate our practitioners.

Resource:

Special Collection on Brain Injury Journey Vol 1

Special Collection on Brain Injury Journey Vol 1

This article is from Brain Injury Journey – Hope, Help, Healing, Vol 1, 2014.

http://www.lapublishing.com/Brain-Injury-Journey-Magazine-Special-Collection-Vol-1

Leave a Reply

Your email address will not be published. Required fields are marked *

 

This site uses Akismet to reduce spam. Learn how your comment data is processed.