DIARY OF A FIERCE WOMAN 10/24/2026 HOPE

“I’m sorry” I cry out, repeating it over and over. “Why do you hate me?” Tapping into the feelings I had with an abusive father, I crouch in a corner of my mind instead of a room. In the dark of night, I lie on my bed praying, tears rolling down my face, anguish in the sound of my voice. I confess my sin and acknowledge that He knows everything and I only want to serve Him. But I want answers from Him. If I’m loved, if I’m forgiven, why is He making my worst fears come true?

Memories drop into a black hole. I attended a three-day conference and when it was over my friend asked, “How was the conference?” I asked, “What conference?” I went on a nine-day vacation and when I returned, I had to ask, “Where did I go?” I drift off in conversations and lose my train of thought when speaking. I’ve learned to nod and smile so people don’t notice. I can no longer read a book or follow a sermon. Fits of uncontrollable rage alternate with mind numbing apathy.

I fear what is happening to me. I always try to be a nice person. I take my faith seriously and have dedicated my life to God. Now, I find myself unable to trust myself. I never know when the rage will take over and I strike out. I worry about hurting those I love. I don’t understand why my life always seems to be so hard. I had goals and dreams. All fall to the wayside as I try to survive.

Dealing with cognitive impairment is a constant struggle. I saw a speech therapist to get ideas on how to cope better. She suggested I keep a planner. When I use it, it helps immensely but there are times I forget to look at it or enter events into it. I forget.

No one knows what is happening to my brain, let alone WHY it is happening. I am 56 years old, young for most forms of dementia but the right age for Frontotemporal Dementia (FTD). We’ve talked to the neurologists about causes. It all started with the Electroconvulsive therapy (ECT) I underwent in 2017-2018 and had an initial diagnosis of Mild Cognitive Impairment in 2019 – a precursor to FTD – but, while ECT causes short term memory loss, there is no research evidence to indicate it causes long-term memory loss or brain damage of any kind, so it is unlikely that it is the cause. But I have my concerns just from the timing of it all. I believe ECT impacted me even if it’s not the total cause.

The doctors also looked at my psychiatric medications, specifically a medication I had been on for years that is known to cause cognitive impairment, but my psychiatrists said the timeline doesn’t line up. Also, my PET scan showed FTD, ruling out Alzheimer’s or Lewey Body dementia. I tried stopping the medication. I didn’t want to. It’s effective not only for the voices but also calms me and eases the gastroparesis pain. I rapidly destabilized without it. It’s used as needed but a friend mentioned it’s like taking pain meds. When you don’t take it regularly, when you need it, the pain bursts through and is harder to control. My wife and I discussed it with the doctors, and all agreed I need all my psych medications despite the risk. It wouldn’t matter that I could remember things if I lost touch with reality. When delusional I think I am literally in hell and I couldn’t live in hell! We decided the cognitive decline was the lesser of two evils.

I doubt myself. I doubt what is happening to me. I don’t understand. Having been told as a child that I was “seeking attention”, I doubt every time my body betrays me. Is it all in my head? Am I being dramatic? Even when I know I am struggling, not having a clear diagnosis kills me. I know something is wrong. I KNOW what I am going through is bad and scary. I go through my test results and messages from the doctors struggling to get someone to help me put a label on what I’m feeling.

The doctors may doubt the dementia diagnosis, but they don’t doubt the reality of my situation. I qualified for disability on the first try without a lawyer – a notoriously difficult process. As my brother said, the acceptance makes it even more real. The test results support me. My low scores show deterioration. Even when I have a “normal” score it is quite a bit lower than how I usually test. I couldn’t fake a four-hour assessment or a PET scan.

Life has gotten so hard. I speak the words of depression – the discouragement and frustration – but underneath is a glimmer of hope. Hope that God does love me even when I feel unloved. That I’m not alone even when I feel lonely. I struggle with what is happening to me. I struggle with the unending decline. I’m scared with no relief in sight. There is no treatment for FTD but I’m not fighting this alone. God is with me and has blessed me. I have Brittany, my family, my friends. I’m loved. I’m lucky. With all the appointments and tests, I have access to quality medical care. I always say I can handle anything if I know what I’m dealing with. I’ve learned that even with the not knowing, I can still cling to hope. I am tough. I am strong. I will persevere.

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Photo by Nigel Hoare on Unsplash