The Search for Hope

It’s hard not knowing what the future holds. The lack of a firm diagnosis for my cognitive chaos leaves me hanging. My psychiatrist told me there is no sign of brain cell death so this could conceivably be reversed. It gave me hope until I realized he wasn’t offering treatment just a theory. The neurologists have washed their hands of me. There’s no question something is wrong, but they don’t know how to fix it, so they don’t see any reason to still see me. My psychiatrist says neurologists like things neat and tidy while psychiatrists are used to messy symptoms. I want a doctor like the ones I see on TV. The doctors that don’t stop until the mystery is solved.

I hate not knowing. I hate the fear that washes over me. I hate the up and down cycle. I get my hopes up only to find them dashed time after time. I have my next neurocognitive exam in August. It will show whether I’ve gotten worse, plateaued, or improved. I see a doctor at the Women’s Brain Health clinic in September. She will have my test results so I hope she can make sense of it all and give me hope.

My experience is that it isn’t getting better. Behavior changes are starting to show. Translation: I’m becoming a b****. I blew up at a church meeting which was equal parts embarrassment and fear. There was no warning. There was no rational thought. A friend reacted, “I’ve never seen you act like that before!” My wife comments I’m more agitated, angry, and frustrated. If you know me, you’ll understand my anxiety. I’m a nice person. I try very hard to be a nice person. Not being a nice person hurts my soul.

So, I’m stuck in the status quo. I don’t know what is happening to me. I don’t have a clear understanding of next steps. I wait for August, for September. I wait for a doctor to tell me THIS is what is happening. This is what you can expect. I don’t understand how I can have these test show frontotemporal degeneration, and yet the doctor who ordered the tests say the results are not definitive. Why did I have the tests in the first place?

I’m scared. My friends want me to be positive, but I don’t know how. How do I ignore my experiences? How do I ignore the test results? How do I hold onto hope when the doctors don’t offer any? So, I keep trusting God. He knows what’s going on even if I don’t. I have hope beyond this world even as my world crumbles around me. I have people that love me even when I bite their heads off. I have people that help me process my feelings rather than just ignore them. I have friends that lift me up in prayer to the God who is all powerful. I will get through this. Maybe not as I would wish but I will with the help of God. God is with me. My friends are with me. I’m not alone.

Photo by Ronak Valobobhai on Unsplash