DIARY OF A FIERCE WOMAN 10/14/2026 WORSENING

As I sat waiting for my appointment for my first neurocognitive exam, I was nervous and excited. I wanted answers and hoped these tests would provide them. I was dealing with extensive memory loss. I’m extremely intelligent and worried my intelligence was fading away. I was afraid of my deterioration. I've always been independent. I’ve always valued my intelligence and now it felt like I was losing how I viewed myself. The assessment itself was easy. I managed most of the tests without issue. There was only one that was particularly hard. It was a visual Continuous Performance Test (CPT). Symbols flashed on the screen, and I had to predict what would continue the pattern. I couldn’t figure it out and finally just randomly picked answers. The assistant commented that I had struggled on that particular test and I explained I honestly had no idea what the pattern was that I was looking for. Tests were usually easy for me so that felt like a blow.

When the doctor told me I had Mild Cognitive Impairment, I felt like my struggle was validated. As a child, my “attention getting” behavior was seen as hypochondria. I’ve since learned that what I have are non-apparent disabilities. You can’t see what’s going on with me. Non-apparent disabilities are frequently treated differently from apparent disabilities. You would never tell someone without a leg that it’s not “that bad”. You would never tell someone who is blind that “at least you can hear”. You would never tell someone with an apparent disability that they just need to be “more positive”.

Five years after the MCI diagnosis, in 2024, I found myself getting worse. My memory loss was becoming more invasive. I had fallen multiple times – two serious. The first was when I was walking with my wife. We live back in the woods and love to walk along the road to the horse farm about a mile away. It was a secluded, rarely used road because the houses were on five acre lots and the street ended in a cul de sac just past our house. We walked along the road together, talking about future plans. There weren’t any sidewalks and the road was uneven. As we reached the driveway of the horse farm, my foot stepped on an uneven patch and I fell forward. I was startled and didn’t quite get my arms down fast enough before my head hit the pavement. I didn’t lose consciousness but I was dizzy and in pain. My wife asked if I could walk or if I needed her to get the car. I tried to go a few steps but decided I wasn’t up to the mile walk home and that she should get the car. I sat on the side of the road. There wasn’t anyone else walking, but a car went by without stopping. After resting a few moments, I decided to try walking but only went a short way before she returned. She drove me home. I probably had a concussion, but I didn’t go to the doctor.

I had a few minor falls but then I had a second bad fall a couple months later. I had gone for a long walk with my wife while we were vacationing in Port Townsend. A frequent vacation spot, we would walk for miles around town. We had gone for a nice long walk and I was tired. As I climbed into the fifth wheel, my legs collapsed and I found myself pitching forward into the refrigerator. My head slammed into the door, breaking the skin. I didn’t see the doctor but after the falls, I made an appointment with a neurologist. I was concerned with what I was seeing in myself. The memory problems, the falls, the tremors. I worried it was something like Parkinsons. At the time, they didn’t seem severe. I actually thought I was doing better than I was in 2019 but that I had worsened over the last couple of years.

The neurologist wasn’t sure what was going on with me. I shuffled my feet when I walked but it wasn’t like the shuffling gate of Parkinsons. She gave me the 3-minute test you do in the doctor’s office and I passed. It was more challenging than I remembered. I confused a rhinoceros with a hippopotamus but other than that I passed without issue. This made her think it wasn’t dementia, but she knew I was concerned, so she ordered the same four-hour neurocognitive exam I had taken before. I went to the same neuropsychologist I had seen in 2019.

I hoped for answers. I wouldn’t get them. Instead, I would start a journey of fear and confusion. I would struggle to get answers from doctors. I found myself using Dr Google obsessively, wanting to know what was going on. I began telling my wife, “My brain is broken”. This is the journey I’m on now. The fear is real. The frustration, the anger, the sadness all hold space in my heart. I have to live with the unknown. I try to turn to my faith for comfort but frequently feel betrayed. I had served God my entire life. Where was He? Why was this happening to me?

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Photo by Leftfield Corn on Unsplash