DIARY OF A FIERCE WOMAN 10/31/2026 REACHING OUT

I feel like I’m going through this nightmare alone. I’ve tried to reach out to people for help. I’ve tried to prepare for the inevitable as my cognition worsens. I’ve tried to gain some semblance of control. One idea I had was to put together a video montage of people and memories. Something I could turn to as my memory worsened. I asked for short videos of people saying who they are, how they know me, and a brief memory. Some family responded but most didn’t. I kept explaining I need the videos NOW while I can still compile them. I’m no longer able to learn new things and struggle to remember what I already know. I didn’t want them to wait until I NEEDED it. By then, it will be too late. I want people to understand the pain and fear I feel, now.

I want help. I want support. I am so scared all the time. I tried to turn to my friends and they abandoned me – at least, that’s how it felt. Finally, I reached out in the only way I know how – through writing. I got to a point where I tried to share what I needed from my friends and so I wrote this email this past August:

Hello!

I'm writing to people who I consider friends and brothers and sisters in Christ. I'm up at Port Townsend with Brittany and one of the things we do here is walk and talk. Our conversation today was about my slow yet steady decline of my cognitive impairment, schizoaffective disorder and gastroparesis. I'm struggling and need prayers. I feel I can be transparent with you. One insight she had was the comment, "It sounds like what you need is for people to mourn with you." It was right on point. I realized that was exactly what I was looking for. Frontotemporal dysfunction isn't like Alzheimers. It's not dramatic memory loss and it's not always seen by others first. It's much more insidious. There are behavioral changes such as blowups at church and recently a blowup with my daughter. For me I see it in my executive functioning and processing. This is much easier to hide but also much more significant to me. I really struggled at the Worship Team meeting last week. I got lost several times. I don't know how much longer I have before I'm incapacitated.

 I belong to Facebook support groups for the gastroparesis and FTD. It's helpful to know I'm not alone but it's also difficult as I get a glimpse into my future. If I don't get my gastroparesis under control I will likely need a feeding tube. As my behavior moves out of control I may have instances of inappropriate behavior. This terrifies me as I am the kind of person that always needs to be "good".

 I wanted you to know where I'm at and hopefully how you can help. I'd like to ask you to mourn with me. Maybe you've seen the changes in me and maybe this is a surprise but either way, I need support. If you don't see it, don't minimize it either. Giving up my ministries has broken my heart and I'm grateful for the ways I can still minister. I can't read a book or follow a sermon. Church has become a source of pain but my faith is everything to me so leaving the church seems too much to bear. Grant me grace. Remind me I'm not going through this alone. That God is with me in the fear.

Thank you for your understanding. I'm open to questions or concerns. If you know me at all, you know I share my story freely.

Blessings to you!

 I started with those in leadership in the church and those I considered close friends in Christ. I emailed seven people and two responded. Then I emailed my Accountability Group – women I thought of as close friends. One responded. I expanded to friends I had coffee with regularly. No one responded. I sent it to my sisters. No one responded. I sent to two long term friends – like sisters to me – and one responded. I was devastated. It felt like no one cared. It felt like I was going through hell alone and the people I thought of as my support system offered nothing.

When I told Brittany about the lack of responses, she told me to focus on those who did respond. They were my support. So, I sent another email to those that responded:

I sent this email to many friends and you were one of a very few that responded. I'm deeply disheartened. Brittany told me to treasure those that did respond so I just want to say thank you for caring enough to let me know you care.

Going through what I’ve been through has been a challenge. Some people don’t see the struggle or know how hard it has been and how scary the future will be. So many people with FTD are judged instead of supported. So many of us with non-apparent disabilities have our struggles minimized by people who don’t understand. It’s hard to see the decline and realize it won’t get better, but it will get worse. My brain is deteriorating. There is no treatment, no cure. Even just a year ago the progression was slow, but over the last few months, I’ve worsened considerably. Fortunately, I do have people that love and support me. Those I need to understand, see my struggle and are very supportive but it gets challenging as people I thought of as dear friends shut me down and shut me out. I know God is with me. I’m not afraid to die but how it will likely happen frightens me. He comforts me in this time of transition, and He has blessed me with people who do see my struggle and respond with hugs and a listening ear. I’m so grateful. So many people struggle on their own, I’m lucky to have as much of a support system as I do. It’s not easy facing pain. It’s not easy facing your own mortality. It’s not easy facing the unfairness of life. So, to those that support others, thank you. You have no idea how truly valuable you are.

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 Jeff Hardi on Unsplash