By Amy Zellmer, Editor-in-chief
As I sat down to write this issue’s “From the Editor” section, I took some time to reflect back on my own journey, and how my memory was so severely impacted by my injury.
In the early days of my recovery, my memory deficits were apparent right away. I remember the doctor telling me I had to take two weeks off from work, and pretty-much life. It was the busy season for my photography studio at the time, and I had about a dozen orders to get online for clients. So I decided to crank them out quickly before I took my “break” from reality.
I sat down at my desk and began to upload the photos, then clicked to the next screen to enter the client’s name, but when I got to the next screen, I couldn’t remember whose photos I had just uploaded.
I had been the type of person who had not only memorized all my friends’ phone numbers (even though I had a cellphone) but also my credit card numbers and driver’s license and passport numbers. Now, just seconds later, I couldn’t even remember a name. It hit me hard and scared me to realize the extent of my memory impairment.
I told my neurologist who completely blew it off, but eventually sent me to a neuropsychologist where I endured a four-hour neuropsych exam, only to be told that I was “average” for my age and educational level, but that my memory was worse than a dementia patient’s so I clearly had not tried hard enough on the test.
WHAT? WHAT?? WHAT???
I was so caught off guard by her casual remarks about my efforts that I didn’t even know what to say. “I just don’t think you tried hard enough; you didn’t give it your best effort.” Those words I still remember.
Later, I took a similar exam at a different center, with very similar findings, but this time they explained to me that I clearly had memory impairment and that memory problems were quite common after TBI. They also explained that the exam has built-in features that allow them to tell if someone isn’t trying or is faking… and mine clearly showed that I had deficits.
Validation can be half the battle in finding our voice and reclaiming our lives.
I continued to struggle with memory problems, but developed coping mechanisms such as using Post-it Notes and to-do lists. Two and a half years into my recovery I finally found functional neurology, and once we cleared up some of my other issues (dizziness, eye tracking, balance, etc.) my memory started working better again.
I liken it to my computer… when too many programs are open at the same time, they all run super slow. But as I shut down different programs, the remaining open ones can run faster. My brain needed to shut down a bunch of programs before it was finally able to function at a normal speed again.
If you are still struggling with memory issues after your injury, please reach out to any of the wonderful providers in this issue. You really don’t have to suffer, there is hope at any stage of your recovery!