But God!
My writing dreams, basically my day-to-day life, screeched to a stop with the diagnosis in early 2020. FTD. What in the world was that? I’d known my husband of nearly 40 years, newly retired from a job he’d loved, wasn’t himself, but I had no clue what was actually happening. Wasn’t FTD a flower delivery company back in the day?
Dementia. A relatively unknown form called frontotemporal degeneration. And also semantic aphasia. Didn’t even know what aphasia was. A swallowing issue? Seeing things? No, it’s a speech and communication issue. Semantic is the form that means the person knows how to put a sentence together, as they always have, but now it no longer makes sense to the listener. Comprehension of words spoken to them don’t compute. They become a confused prisoner in their own body with no understanding of the world around them. Think Bruce Willis. That’s my husband but without all the money. 🙂
We walked the Alzheimer’s path with my mom and his, along with many friends whose parents were also affected. But to have it be your spouse in his early 60s – that was a whole new situation. In an unmistakable way, God made it absolutely clear that it was time to move; that our life in Plymouth was over. My family, along with numerous friends, clearly thought I’d lost my mind, but I KNEW it was what we needed to do. I knew.
So I (there was rarely a “we” anymore) got the house ready and sold it, as did our daughter (who was very pregnant with her fourth), and we all started a new life together out in the country, 30 minutes away. A beautiful spot of 4+ acres with a pond and lovely neighbors. A multi-generational home that provided the two of us with a private space in the lower level of the walkout. Our son and his growing family lived only 20 minutes away, making it the perfect location for all of us.
And here we’ve been for over 2.5 years. While many with an FTD spouse deal with disrupting, even frightening, behaviors, mine is mostly silent. Both long and short-term memory is gone. He speaks very little and even then I have no clue what he’s referring to. It couldn’t be a more lonely disease. As it has progressed (he’s now 69 and physically quite healthy), my day-to-day life has shrunk. And my writing dream evaporated. I no longer have the desire to write fiction. I’m living a story no one would believe if it were in book form! And that loss, of a lifelong dream, has been the hardest to accept.
It was my identity, who I was at my core. It was who people knew me to be – an aspiring author who shared uplifting stories of faith and hope. I was wandering in this quiet world (if having 4 children ages 9, 7, 5 and 2 living overhead is quiet!) with nothing to say, no make-believe worlds to write about, no new characters to get to know. I watched friends and family continue with their daily lives – going on trips, making new memories, writing more books, enjoying life, and struggled with the lack of purpose that comes with caregiving. Would I now just make the same meals day after day for someone who had little interest in engaging with me or the world? While dreading the changes that would invariably come?
It’s been a dark place. But God… No, that’s not strong enough. BUT GOD!!!
While my love for reading and writing fiction has waned, I still love to use words to express my world, give wings to my questions, and wrestle with the answers. Even in the midst of uncertainty, both in the present and looking toward the future, my faith has held me up, kept me moving forward, and provided the patience and grace I’ve desperately needed. I want to share my experience, my life lessons and God-moments to encourage others on their own journey. So I will still get to write, but with a new purpose and different words!
I hope you’ll join me on this undefined pathway that beckons us to question, share, discover and engage. I’m excited to start! Watch for more posts from “Faith, Hope, Love and Life.”
I really love this prayer by Emily Rose Massey:
Father God, I am struggling with disappointment. Help me to guard my heart against discouragement, discontentment, and complaining. Teach me how to find ways to praise You when my expectations are not met. I know I need to trust in Your sovereignty and lean upon Your ways over my own. Your grace is sufficient for me, and I thank You for always guiding me into truth and convicting my heart when I fall into the sin of grumbling and complaining, thinking that I know better than You. My lips long to praise Your great name. Thank You for Your love for me and for changing my heart to reflect Yours. I pray You would use these unmet expectations to transform me and strengthen my faith in You. In Jesus’ name, amen.