Finding Strength in the Midst of the Unknown

Well, my journey went over a little bump this week. Wait, scratch that. My journey went over a friggin’ boulder in the middle of a narrow road on the edge of a cliff. Ok, I might be a LITTLE melodramatic but forgive me while I process this.

One year ago, I had a neuro-cognitive assessment that showed significant worsening compared to a previous assessment five years earlier. The neuropsychologist who performed the assessment told me I had frontotemporal degeneration which is an umbrella term for a type of dementia. I followed up with a neurologist and she said, “no” that wasn’t the problem, and she didn’t need to see me again (or let the door hit me on the way out). That had me at a loss because the assessment validated the experience I was having: memory loss, cognitive issues and an inability to multi-task. Unwilling to give up, I saw another neurologist and simply said, “I’m scared”. I didn’t know what was going on, but I knew SOMETHING was going on. She ordered a pet scan that showed the same thing: frontotemporal degeneration and referred me to a brain specialist. It took NINE MONTHS to get in to see this doctor and in that time, I wrapped my head around the idea I had dementia.

So, I saw this brain health specialist Wednesday, and while she does think there is frontotemporal dysfunction, she doesn’t think it’s dementia, she thinks it’s my good ole schizoaffective disorder messing up my brain. It is no longer just a collection of psychiatric symptoms: hallucinations, delusions, depression and mania, it is now f*****g up the make up of my brain. We can’t DO anything about it. It took DECADES to get a psychiatric medication regimen that leaves me functional. So, why am I upset? Because there is no end date. I have all the symptoms of dementia: memory loss, emotional dysregulation, cognitive decline. The results of all this are still the same. It’s still unsafe to drive. I can’t read a book or watch a tv show without forgetting the plot. My dreams are still shot as I can’t think clearly enough to pursue them. This is now my life, and no one can tell me if it will ever get better. No prognosis, no comprehension of my struggle. I was ready to go home. I’ve battled for too long. I’m tired.

But God has other plans. He’s not done with me yet. Give me a week and I’ll be ready to start the fight again. For now, I’m wrapping my head around the unknown. Please don’t tell me this is good news. It minimizes my struggle. The friends that understand just sit with me. They listen to my fears and my complaints. They know that the pain I go through, have gone through and will go through is harsh. They know I’m doing my best with my foggy brain to make sense of it all. I will find the strength. I always do. I just wish I didn’t have to.

Photo by Andrew Charney on Unsplash