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From the Editor

Reflecting on the journey to reclaim memory.

in Brain Function, Life Lessons, Memory
March 12, 2021
0

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!

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  • A traumatic brain injury is the ultimate “invisible injury” as no one can see what’s happening inside your brain. Even imaging doesn’t show a TBI (unless you have bleeding or severe trauma). It’s impossible to explain to others, and even doctors don’t take us seriously or know how to help us. 

It is incredibly frustrating to go through life being told “there’s nothing we can do. You’ll just have to give it more time and see what happens” and even more frustrating when you find out that there are doctors out there who truly DO know how to help us!  Like @integratedbraincenters 

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These are normal, every day things we take for granted before brain injury, and afterwards they require soooo much energy and effort. It’s truly hard for someone who hasn’t experienced a brain injury to understand. 💚

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  • I remember folks would talk to me and my brain would take forever to process what they were saying. They would be into the next subject and I’d still be trying to decipher their first sentence. It was frustrating and exhausting. 

Friends would tell me to “try harder” and concentrate. But that’s not how it works with brain injury. 

It’s like if you drop your laptop and scramble it’s processor. 

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Recovery as defined in the dictionary is a return to a normal state of health, mind, or strength. 

Missing from this definition is that recovery is a continuum. We often hear in recovery post surgery that a patient is a percent recovered (Sue is 80% recovered post hip replacement) demonstrating that recovery is not an all or nothing situation but is rather a spectrum. 

Not everyone will make a 100% recovery but most people can move forward in their recovery in some way, even if it is only 10% or 70%. 

To say that recovery is not possible in any capacity is probably untrue. The more severe the injury the more likely you will never be the same person you were prior, but that does not mean that you can’t get back to doing the things you love and contribute to your family and community.

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  • No two brain injuries are the same, therefore, no two recoveries are the same. Don’t compare yours against someone else’s, as you never know what they’ve already gone through. 

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  • I know one of the biggest lessons I had to learn from my TBI was asking for help. 

It wasn’t something I was used to, and the first few friends I asked laughed at me, which made it even harder to try again. 

But it was a beautiful lesson for me — as someone who is fiercely independent it is important to ask for help when I need it it — in allll areas of my life. 

What was your biggest lesson from TBI? 

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