My world is shrinking

I’m working my way through the stages of grief: one minute I’m angry. The next depressed. The next accepting. The periods of acceptance are getting longer, but the reality of my situation is wearing me down. I have frontotemporal dysfunction. As one neurologist put it, “You don’t have dementia. Your brain just thinks it does.”

In 2017 I underwent electroconvulsive therapy (ECT). Normal course of treatment is once a week for 12 weeks. I had it 2-3 times per week for 7 months. It caused severe memory loss. In 2019 I had a four-hour cognitive assessment that showed Mild Cognitive Impairment. I seemed to stabilize for the next several years. In 2024 I noticed I was getting worse and went back to the neuropsychologist. A second assessment showed "significant" worsening. I was diagnosed with Major Neurocognitive Disorder/Frontotemporal Dysfunction. A pet scan also showed Frontotemporal Dysfunction. There's no prognosis or treatment. The doctors can't DO anything.

So, I deal with the symptoms. Memory loss, inability to multitask (I can’t switch rapidly between tasks), emotional dysregulation. I’ve given up so much. I gave up driving after a few near-misses. Once I forgot how to pump gas, another time I forgot how to use the credit card reader. I forgot where I was when I was on roads I had travelled hundreds of times. I gave up leading ministries. I would take notes in meetings and by the time I got home, I had forgotten what was discussed and couldn’t decipher my notes. A speech therapist told me to use a planner to organize and then I forgot the planner. Even when I tried to write things down, I would forget the words between the thought and the pen.

My world is shrinking. Giving up ministries. Giving up dreams. Giving up independence. I can’t participate in activities I once enjoyed because I can’t get there without inconveniencing others. Sometimes I can get a ride but frequently I can’t. I’m giving up things I once enjoyed. I struggle to read because I can’t remember plot lines. Same with TV shows and movies. Watching a new show means rewinding it repeatedly because I don’t understand what’s going on. So, I watch shows I’ve watched a dozen times before. I get episodes of anger that I can’t control. I’ve blown up twice in church. Writing these words is a challenge.

My world is shrinking. The tests show my brain is abnormal. And my faith? It’s taken a beating. I believe in God. I believe He loves me and has a purpose for me. I don’t know what it is. I don’t know what the future holds. I don’t know why life has to be so hard. I struggle to see the blessings amidst the pain. That’s what I struggle with. I fear I have no hope except in the next life. This life? Not so much. My world is shrinking.

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