Seeing the World Through My Eyes
Jul 14, 2024
In 2016, I was in a car accident that left me with a concussion but no visible injuries. Unconscious for a time, I was later diagnosed with Visual Midline Shift, a condition where my brain told my eyes that everything was shifted right and forward. Prism lenses were prescribed, and though I didn’t see a difference, I was bumping into things less often, so I assumed they were working. A year later, I moved to the Midwest for a new job and quickly was promoted to Vice President. Known for my quick analysis and strategic thinking, I thrived until I noticed my skills waning.
I was freezing mid-conversation unable to find the right words to say. Sometimes the words I spit out didn’t make sense. Every time I was going to the post office, I told my husband that I was going to the airport. It started to become an ongoing joke in our house. I was having daily headaches. I was exhausted all of the time. Simple tasks became overwhelming, and I feared early-onset Alzheimer’s, like my cousin. My cognitive tests returned normal, but my struggles persisted. Staring blankly at spreadsheets, I felt lost.
In 2021, my mother passed away, intensifying my anxiety and uncovering old wounds. Diagnosed with Complex PTSD (CPTSD), I shifted my therapy focus and took a leave of absence, expecting to return in six months. However, my condition necessitated Long Term Disability (LTD). It’s next to impossible to resolve a lifetime of trauma in a short period of time. Navigating the disability claim process was tough, even with my 20 years of industry experience. After a denial, I successfully appealed, but my cognitive issues remained.
Losing my healthcare providers due to a hospital merger at auction, I had to start anew. My LTD benefits were denied again, and I found myself in a second appeal. It’s hard to prove that you are unable to work when you don’t have a medical explanation for what is happening to you. A neurology visit revealed my migraines were more severe than I thought, affecting my brain function. A delayed eye appointment confirmed my Visual Midline Shift Syndrome was part of a larger problem. Visual perceptual testing showed my abilities were equivalent to a 12-year-old’s, explaining my struggles with reading, spatial awareness, and information processing. Some deficits were at the level of an 8-year-old. This was hard to accept because I immediately compared them to intelligence testing, which they are not. Just like my vision issues aren’t my eyes.
These results explain why I struggle to follow conversations in large groups, especially when I don’t know who is going to talk next. It explains why I dunked the lawn mower into the pond and hit the house with the tractor. It explains why I struggle in airports and spaces where many people are moving in different directions. So much of the past seven years is making sense now. My brain has been working in overdrive trying to process everything, it never rests.
I'm now doing vision therapy in an effort to resolve some of my challenges. I'm being realistic and only expect modest improvement knowing that I am seven years post injury and likely at maximum medical improvement. I still have visual experiences that make me feel like I'm on an acid trip - I see things moving in my periphery when they aren't. I see words trail off paper when reading so I transitioned to audiobooks. I have times when I feel like I'm looking through a kaleidoscope. I have "visual snow" which makes things appear textured when they aren't. But I understand what's causing this and am learning how to work through these episodes.
The car accident left an invisible mark on my brain, causing it to send skewed messages to my eyes, making everything appear shifted to the right and forward. In my mind, my vision seems perfectly normal, but the reality is quite different. Invisible disabilities are often hard for others to grasp, but it's even more bewildering when your own disability is hidden from you. This added layer of complexity is something I don’t expect others to fully understand—except, of course, the disability company managing my claim.
I finally have a diagnosis: Persistent Post-Concussion Syndrome, including VMSS and chronic migraines. This explains my seven-year struggle. Despite ongoing issues, I now have a plan to move forward. My disability claim is still under appeal, but I’m confident that it will be reopened based on this new information. My story, though atypical, is valid. I had to advocate for myself, and if you feel something is wrong, trust your gut. Solving your own medical mystery is empowering. Now, with answers in hand, I can finally move forward.
If you are looking for guidance in overcoming career difficulties, I would be happy to help!
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