Nowhere to Run. Nowhere to Hide.


Nowhere to Run. Nowhere to Hide.

Oh my! I want so much to pretend that what is happening is not happening. I want to run as fast and as far as I can from the truth. I want to be a huge, powerful superhero who has the power to defeat Frontotemporal Degeneration. I want to become little and hide deep in the fantasy forest I will call the "Forest of Protection".  I cannot pretend, run, cure FTD, become little or hide in a fantasy forest. I can stand and face the truth that my husband's disease is progressing. The progression has been slow and steady. The diagnosis brought with it the truth that as time passes the progression will pick up speed and the good times will shorten as the difficult times last longer.

I was lulled into a comfortable denial even as I spoke of the future and the progression to come. I was lulled by the quiet stealth of a disease that kills brain cells. It kills them randomly and. in what feels like a diabolical twist, the changes brought by FTD will come and go for a time. What I failed to accept was the truth of the progression. The truth is simple. Come or go, the day will come when the changes are permanent.  Irreversible. Gone. (A rage builds in me as I write this paragraph; a rage of frustration and helplessness.)

What really frosts my backside is when professionals see the progression and speak of it. How can I pretend when the people I have come to trust speak the truth of FTD?  I want to scream at them to shut up! Irrational responses succumb to the truth. Time and again I bow to my own progression. Every decline in my husband sets off the cycle of denial, rage, truth, acceptance.

The most recent decline morphed into an identifiable, here to stay, set of changes. I watch as my husband adjusts. I listen and respond to his needs with keen observation. I want it to be something the doctor can treat. The doctor says it is the FTD and says it with such tenderness. The tenderness feels like fire in my heart. The tenderness says the doctor understands and cares. His caring tenderness proves the truth far more than a matter of fact response. I search his face and his eyes meet mine. My husband's progression hurts him. I see it and his pain makes mine less painful. Shared pain comforts.

Today my husband tells me that his symptoms are part of the disease and will continue to happen. He tells me in order to remind me that he knows the truth. He is far braver than I am these days. He says thank you and I love you and I know that is the truth. As I write I know the denial and the pain of this progression will fade. Both of us will, as I have told him many times, walk this thing out together. We are in this together. I feel tired from the effort acceptance requires from me. I know that I know that I know that God is in the midst of this journey we are on together. We are not alone. We are not the only ones. I am glad I wrote this post. I feel better.

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Lark, what you've written touches my soul. I identify with every word, so well expressed. Thank you for writing about your journey. It puts my own experience into words and lets me know I'm not alone. There is such love, grace, and courage in what you've written.


Lark, thank you for sharing your journey and emotions. The decline stage is so hard because it reminds us of the cruel parts of the disease....the anger, the fear, the denial...all of it and more. Your statements of love and respect and caring for each other emphasizes the tenderness of this journey we are on with our careers. The moments that matter the deepest and the most and that are so hard to capture in captured it beautifully. Thank you for sharing.


Oh Lark.... Thank God for \" the cycle of denial, rage, truth, acceptance\" you speak of....although a weary process to repeatedly go through, its a healing one that will see you both through this. I see you both as strong and courageous as you deal with this disease. I appreciate your blogs and your willingness to share about your and Roberts journey. You share from deep within you soul your fears, doubts, anger, acceptance which helps me find courage to face my feelings. Keep on blogg-in Lark!