DIARY OF A FIERCE WOMAN 11/4/2026SUPPORT

Everyone says I’m so strong. I’m not strong by choice, weakness simply isn’t an option. I still need support. My last post garnered mixed responses. Some responded with appreciation and reminders that I am supported and loved. One doubted that I was remembering correctly. So, I decided to clarify the point of that post which is to speak out to the isolation those of us with non-apparent disabilities have to cope with. I go to church every Sunday. I’m known as a hugger so I get lots of hugs from people. I have people there that care about me. I have people that admire me and the work I’ve done within the church. I was recognized for my service. I also go home and cry. It’s not that I never get support. It’s that what I’m going through is too often minimized or rejected outright. I cannot tell you the number of times I hear, “You seem fine.”

I am not fine. I’ve had to give up so much because of my cognitive impairment. I had to step down as a leader at church. My ministries have always been a part of me. They define me. They are how I serve God. My faith is who I am. I ran ministries. I served on the church board. I was involved at the national level for my denomination. I wrote a book. All of that is behind me. I no longer have the executive function and processing to do that work anymore. I deal with apathy that makes taking a shower seem too hard. I have fits of rage that frighten me as the area of the brain that deals with inhibition is damaged. I walk in a room and don’t remember why – not occasionally as many people cope with as they get older, but virtually every time I go to do something. I forget to write activities down in my planner and forget to look at it when I do. I must continuously look at the calendar on my phone because I can’t remember from one moment to the next what I’m supposed to do. I cannot drive anymore and can only impose on others so much, so my socialization is limited. Thank God my wife retired so I can get to the store and doctor appointments. All this to say I am definitely not “fine”.

I’ve watched as I’ve given up the life I dreamt of and now deal with that loss. I still preach and write. I used to prepare a sermon for weeks, praying over the scriptures and reading commentaries. I created an outline and poured over every line to make sure it was theologically sound. I still pray but now it’s a plea – “Dear God, just tell me what to write.” I can’t read commentaries or understand research. They say scripture comforts many people with dementia. I find that’s true. The verses are still inside me. I may not know where in the bible the verses are, but I remember the words and can search for the verses on the internet. I can still write although I struggle. I try to just speak from the heart but sometimes the words I want to say are elusive. I refuse to quit. Preaching and writing gives me purpose. It’s something I can send out into the universe and pray it reaches people who might be helped or encouraged by it.

I’m not trying to say my life is all bad. I have a wife that loves and supports me. She tells me not to be afraid. That she will always take care of me. I have a best friend I talk to regularly and text multiple times per day who I can always rely on. I have two beautiful children and a bonus son that remind me that I succeeded at the most important job there is. And I have my sweet grandson who gets excited to Facetime “Mimi” every week. What I am saying is that I feel alone as I fear the future even though I know I’m not.

I’ve written about my struggle with doctors. It has been hard to get answers. The neurologists I’ve seen just say there’s nothing they can do. There is no treatment or cure for FTD, but one out of the four I’ve seen is willing to monitor me. I also have a psychiatrist who is PHENOMENAL! He treats my schizoaffective disorder. Without him I’d probably be in a locked psychiatric ward. Instead, I live a full life at home. He’s gotten creative with my medication options as he stays up to date on the latest research and researches medications himself. I have a supportive PCP who tolerates my constant MyChart messages and urgent referrals. And I have a counselor I’ve worked with for years who brought me out of the suicidal hole I was in after being dumped by my previous counselor over text. I have access to quality medical care when many do not.

I am in the moderate stage of FTD which is the last stage before needing care.  I’ve developed swallowing difficulties that can lead to aspiration pneumonia. I’m praying for one more year and am putting together a bucket list for that year. I’m trying to find things to look forward to so I don’t give up and sink into a hole of depression I can’t crawl out of.

My life is shrinking. That’s my reality. I feel very alone. I feel very isolated, I need reminders of my value because I forget. I need people I can be honest with who won’t deny my reality but instead enter into it with me. To cry and scream and THEN move onto acceptance. To remind me that God still loves me and is still using me whatever that looks like. To be present, to listen, to support. To ask me how I am and hear me when I say I’m not fine and have that be okay. Because there are a lot of us who are not fine. There are a lot of us who need to be loved and encouraged even in the midst of our struggles. A LOT!

I hope you find this journey interesting and if you find my writing thought provoking, consider subscribing to my blog on Substack: https://jasmineraysymms.substack.com/ 

All previous posts are available on Substack and my website.

Photo by Marco Bianchetti on Unsplash