The topic for the Congressional Briefing for Brain Injury Awareness Day on Capitol Hill on March 12, 2014 was Return to Work.
I cannot wait to hear what the Briefing Panel Members had to say. Of the panelists, Jim Kelly, from the National Intrepid Center of Excellence at the United States Department of Defense, is one of my all time favorite researchers/clinicians, and I find his research and insights so helpful in general, but it has helped me to understand my experiences after my concussion. I volunteered at the International Brain Injury Assocation’s meeting in the Washington DC area several years ago just so that I could hear Dr Kelly speak. It was well worth it.
Since “Back to Work” was the topic at the Congressional Briefing this year, I thought I would write down my (ongoing) return to work story after my mild traumatic brain injury/concussion.
First, I want to mention a little history about speaking and and writing and the Congressional Briefing. I was the first individual with a brain injury to speak at Brain Injury Awareness Day in 2011 and I spoke about the Value of Rehabilitation. (Survivors from the military and a former pro-athlete and survivor, Chris Nowinski, had spoken in previous years.)
Preparing that speech with the capable help of Leila Afshar who worked patiently and tirelessly to help me figure out how to tell my story about my journey to rehabilitation. She modeled for me (through alot of trial and error) how to distill my story. We had 4 minutes to tell the story of The Value of Rehabilitation in my life. My speech, and the standing ovation that I got from it, moved my advocacy forward tremendously.
Since then, I have had more practice on trying to emulate what Leila helped me learn how to do — distilling the important parts of the my story. Working on the blog has helped me write shorter pieces. It has helped me learn that I often think I have one thing to say and its really about 5 topics. And that I need to unpack what I think is one post into the different parts.
My return to work story:
I did not expect my injury in a car accident to lead to any work loss. I had my life to lead and my research to do.
When I was diagnosed with a mild TBI by my neurologist 3 weeks after the accident because I was having symptoms, I still thought I could rest and return to work.
I got to two helpful therapies early on my own — chiropractor help and work with an optometrist who did vision therapy. I could not absorb what I was reading and knew I could not work if I couldn’t read.
It took me three and 1/2 years to get to the brain injury rehabilitation in an outpatient setting. I still cannot explain all the reasons why it took so long. I know it still happens today.
Brain injury rehabilitation turned my life around. It was complimented by the chiropractic work and the vision therapy I was already doing. Outpatient rehabilitation gave me more hope that I could return to some kind of paid employment.
During outpatient rehabilitation, my speech therapist, Liz Joiner identified giving speeches as my one “transferable” skill from my old job.
She also helped me start an unpaid internship in Dr. John Slatin’s office at the Center for Technology and Learning at the University of Texas (now the Accessibility Office at UT).
I got married and my husband and I moved back to DC for Michael’s job.
I met Carol Bray at Trisha Meilli’s book-signing for her book “I am the Central Park Jogger: A Story of Hope and Recovery.”
Carol Bray helped me meet Susan Connors (now President and CEO at the Brain Injury Association of America, then at an organization called NASHIA).
Susan introduced me to Robert Demichaelis, a survivor and volunteer at the BIAA office.
I went to visit Robert at BIAA. He told me there was an extra desk in his office. He told me I could use that extra desk.
I was so excited, I did not know what skills I had for return to work yet, but I had a desk to go to!!! That was a start.
I started volunteering at BIAA. Just getting to Tyson’s Corner, Virginia which was about 40 minutes from my house in Arlington Virginia was about all I could do for a long time.
Learning what to say in the office for small talk was another still I had to learn. When someone asked me how my weekend was, I needed to learn what to say.
When BIAA help a State of the Art conference on TBI, I asked Dr Allen Bergman, then-president of the Brain Injury Association of America (BIAA) if I could speak at the conference. He was looking for someone who hadn’t had treatment in first two years and then got better after treatment. That was me!!!!
At the conference I learned about how difficult it could be to return to work after even a mild brain injury. I cried when a researcher talked about the data on the return to work success rate for people with coma versus concussion/mild TBI. I cried because I thought it was just me struggling against all odds to get appropriate treatment to to go back to work. If you believe the data, it was not just me. People with concussion/mild TBI had lower return to work rates than those who had overcome coma.
Later when I was successful getting off the waiting list for Brain Injury Services of Northern VIrginia, a case mamnagement group, they helped me with basics that I still needed help with . I was roughly ten years out after my injury. They helped with getting transportation services (I had been trying to take the bus and often got lost or got off bus in wrong or dangerous places).
They also helped me with other services that I needed including support services for me and my family.
Long story short, I learned that I could do meaningful volunteer work and continue my public speaking to help others with brain injury.
I realized that although my goal was to return to work, I needed to get appropriate health care and support services before that could happen.
It wasn’t that I thought I could skip the necessary steps to support my work activities, it was that I didn’t know any better about the steps that had to happen.