Nancy Mullen
Of the five concussions I sustained between 2009 and 2020, #4 in 2017 was the worst in a lot of ways. In my thinking, it is the last straw and my already tired and trying-to-heal brain just decided: ENOUGH. Concussion #4 occurred much like #2 and #3; my car was at a stand still and someone on a cell phone did not stop. The fact that #4 happened when I was hit by someone I had just interviewed for a job seemed like sarcasm.
Concussion #4 caused many of the same problems I’d had with previous head injuries, including some I had as a kid, now that I know what signs to look for. As recommended, I watched to make sure the signs didn’t get any worse. They didn’t. Unfortunately, they also didn’t get any better and they began to affect my job.
I first noticed that simple math had become impossible. I couldn’t calculate the tip on a restaurant bill if I had lunch with one of my employees and I struggled to understand from the health providers who had treated me after the accident. Those bills made no sense but this didn’t panic me. I’m a social worker. I’ve never been great at math. I also didn’t panic as I wrestled with word retrieval. It would come back eventually, just like it had before. It was the moment I realized I couldn’t read that I finally panicked.
It was difficult trying to explain all of this to my doctor, given the word retrieval problem. Plus I had been through this before and it had resolved, so I waited. By the time I was two years post-accident, those things hadn’t come back and I now had a list of other things I was concerned about, as well.
By summer 2019, I knew in the pit of my stomach something was horribly wrong. I suspected early onset dementia and had to force myself to stop reading about Pat Summit. The brain fog, the memory problems, the balance issues, getting lost on roads I’d been driving for 20 years…I just knew it was a matter of time until I was handed a diagnosis that would take me through the rest of my days. I was terrified.
Late that summer, the game changed. While at a medical appointment for an unrelated matter, the doctor casually asked about my experience with treatment for my last concussion. I pointed out that I hadn’t had treatment for the last concussion. She asked if I’d gotten treatment for any of my concussions. I told her I wasn’t aware that treatment for concussion existed beyond the traditional passive treatment of resting and staying off my screens. The doctor became visibly more animated, asking me if I had trouble with a list of tasks and she started rattling off a checklist.
That checklist was MY checklist. It was all of the things I’d been struggling with. Math. Calculating tips on restaurant bills. Reading. Word retrieval. Memory. Attention span. Brain fog. Losing everyday objects. Sleeping. Feeling slightly off balance unexpectedly. I said yes to everything she named and I’ll never forget her next words.
“Oh honey! I think you might have some post-concussive issues! I need to get you some referrals for treatment!”
I literally grabbed her jacket sleeve as tears came to my eyes. “That’s a thing? A real thing? I mean…I don’t have…it’s not dementia?”
She turned to face me fully and handed me some tissues. “Dementia? No! You don’t have dementia! This is all about your head injuries and there are some things we can do to relieve it!”
Her referral took me to the office of an approachable, personable psychologist named Corey who specialized in neurofeedback. He taught me what my brain was doing (or shouldn’t be doing). He taught me how to read again. He taught me why my brain was doing things a certain way and how we would adjust that so it worked better for me. He taught me that concussions are cumulative—the more we have, the worse they are, the longer they last and the harder it is to heal from them. Who would have thought? It never entered my thinking that that’s how they work. And he, too, assured me that I didn’t have dementia—this was all normal for having the long history of head injuries that I had.
Last year, after working with him for two years, I started offering presentations on PTSD and TBI to some of my colleagues, incorporating what happened in my journey and what I’ve learned since treatment. I started out wanting to share some information with colleagues in domestic violence, figuring they’d have interest in head injury and how it changes people. When those two presentations to domestic violence shelter staff went well, I decided to give conference proposals a shot, and submitted a few to National Association of Social Workers conferences. To my surprise, they were all accepted.
In May, I will keynote my first conference in Rochester NY and I plan to tell those folks that I couldn’t read for three years while I floundered toward a diagnosis that I didn’t even know existed. I’ll be armed with some heavy-duty notes because I can no longer memorize presentations and I might even be a little nervous at this one, but it’s one more game changer. I still work with Corey every month. I’ve got a second book underway, this one about what happened related to the concussions and the treatment process. I’ve spoken at five different NASW conferences and shared this important information with my fellow social workers to bring their attention to how they might assist any clients they have who are dealing with head injury. Last week, I started a neuroanatomy class to work toward my own certification for neurofeedback testing. I’d like to work with Corey to learn how to do the in-office assessments. Full circle seems very appropriate here.