March 2025 Blythe Edwards

I’ve started writing this opening paragraph about a dozen times now.  I just can’t seem to find the way to tell my story.  Maybe it’s because the brain is such a complicated organ that I struggle with the “gray matter” of it.  This injury has touched almost every aspect of my life, and as a fairly organized and driven personality, I want a definitive ending to it.

One afternoon at work in the fall of 2022, I hit my head. I knew I was going to have a concussion given the force of the hit. I was honestly shocked I did not lose consciousness. When I went to the emergency room the doctor told me I had a mild concussion.  My symptoms seemed straight forward.  I had no history of prior injuries, so they did not see recommend imaging.  Aside from normal dizziness and nausea symptoms, everything seemed fine.  I went home with a 2-4-week recovery prognosis.

Over the course of the ensuing week, though, my symptoms increased.  The following Monday I didn’t feel well enough to work. I was given a few more days to recover and prescribed a shortened workday when I did return.  I had a particularly hard time with screens. Using a computer, tablet, or cell phone made me feel immediately disoriented and nauseous.  My medical provider told me to limit my screen time to ten minutes per hour.  At my job, I used my computer for email, clinical, and remote meetings about 90% of the time, so that was nearly impossible.

After four weeks, I still was not feeling right.  Any kind of LCD monitor made me almost immediately ill, and I couldn’t get my work done.  I was struggling to find words, I misplaced items, and I mixed up dates and meeting times. I forgot to put my car in park.  Sounds bothered me, and I had to wear earplugs. Rapid movement was disorienting.  Driving for more than 30 minutes was miserable. It became clear that I wasn’t healing as predicted.  As many of my symptoms seemed linked to my eyesight, I was referred to a neuro-optometrist.

I went for a neuro-optometry evaluation about two months after my injury.  Results showed I had significant issues: my eyes had difficulty tracking objects, my focal point was off center, and I had nystagmus.  The amount of effort it was taking for my brain to manage the garbled visual data coming in was causing my nausea, vertigo, fatigue, memory issues and “brain fog.”  The neuro-optometrist told me that he anticipated my recovery would take 3 months to a year and recommended visual and vestibular therapy. 

I had never imagined recovery would take so long.  I called my boss and shared my prognosis.  My agency shifted me to a position that did not require computer usage. That winter, I almost completely stopped using computers, my tablet and my cell phone.  I did endless puzzles and listened to a ridiculous number of podcasts.  My husband bought me a Kindle e-reader.  I could tolerate this kind of screen (e-ink) without much difficulty. I got curious and googled “e-ink monitor concussion” and discovered a medical group that had researched and recommended e-ink monitors for people recovering from concussions with visual issues.  

In the spring of 2023, I started visual therapy.  Sessions were hard, and I had daily homework to complete, but I improved a lot.  I was feeling better and had much of my energy back.  I still could not tolerate LCD screens, but my neuro-optometrist wrote a letter recommending that I have an e-ink monitor as an accommodation, and I was able to get one. With this in place, I took a new position, similar to my old one within my agency, about a year after my injury. 

Even with my different monitor, I was still dealing with symptoms on a daily basis, and so I went back to my doctor. I started vestibular therapy and was diagnosed with motion sensitivity.  Apparently, the motion detector part of my brain is on high alert at all times, further complicating the visual signals coming into my brain.

Someone along the way recommended that I apply for Vocational Rehabilitation through the state.  I work full-time, so I assumed I was “too healthy” to get services, and wasn’t sure what they could even do. I was surprised when they agreed I needed services.  I was even more shocked when Voc Rehab referred me to the Division of Blind and Visually Impaired (DBVI). I hadn’t really considered my injury as a visual impairment.  Understanding it as such has helped me better adapt to my TBI, and given me the language to help family and coworkers understand how it affects me.

It’s been about two and a half years now.  My updated prognosis is that I will have symptoms for years to come, possibly the rest of my life. Currently I am working with a vision rehabilitation technician through DBVI. They are helping me to identify work accommodations (things like text readers and computer dictation programs) to make my job less strenuous. I’m learning to adjust to brain injury.

Having a brain injury is a giant, endless lesson in humility. I’m learning to ask for help, and not to be embarrassed when I need support.  I’m learning to have a sense of humor (it IS funny when I call everything “thingy” because I can’t remember the name for it) and to offer myself grace.  I can’t compare myself to who I was or what I could do before. Some days are sad- I really miss who I was.  On other days, I look at how this experience has made me stronger. I can still raise a family and work, I just do it differently.  My story does not have a definitive “all done, you’re better” ending, and maybe that’s good enough.