F. T. D. – Fears, Tears and Dedication.


I cried today.

I cry pretty much every day actually.

I’m not asking for sympathy, just stating a fact.

It’s not always because I am sad. Sometimes it’s because something just makes me smile. Brings happy memories. Sometimes it’s because I am mad. (not in the psychiatric sense you understand).

Sometimes, it’s just because.

Today I cried at a pot of jam that someone had made and given to me. Ridiculous, right? I cried because she had made it on September 17th. My oldest son’s birthday and also the anniversary of my husband’s death.

Frontotemporal Degeneration does not just degenerate the physical brain cells. It degenerates lives, spirit and entire families.

F = Fear. Fear for the present, the future and everything in between. But fear is conquerable. Sometimes Fear brings out the best in people. It gives you the ability and strength to do things you never thought possible. Deal with things you never imagined. Fear does not always have to drive reticence or pain.

T = Tears. Tears of joy, of pain, of love. Tears can  be great healers.  A release, a solace in the darkness.  Whatever FTD takes away from your loved one, it cannot take your spirit, your love, your fight. Tears are our weapon against the bastard disease. Tears give you the strength to tackle each day, each hour and get to the next one intact. Sometimes, in an inexplicable way, tears can communicate to your loved one. Even when their communication skills are all but gone, somehow, tears get through. Even though they cannot speak or understand most of what you say, tears have a way of demonstrating your frustration, pain or love.

D = Dedication. Yours and those around you who cannot imagine anything else but their unconditional love. Love for your spouse/friend/partner/friend and you. The love that sees you through belligerence, incontinence, weird social behaviors, aphasia and physical disappearance. The dedication is not planned or discussed. It just happens. It may not happen for all your family or friends, but you will feel it. I felt it even through the magic of the internet. I felt every note, photo and sentence written on our Caringbridge page. I would highly recommend  the site (www.caringbridge.org). It will enable your distant friends and family to send words of dedication to you. Your dedication can be seen by them too. When you have family on the other side of the world, as I do, it helps them and you to communicate what is going on and lend support to your dedication.

Frontotemporal Degeneration. It’s just a relatively short period of your life. Doesn’t seem like it at the time, but when it’s over, you think -“Wow! That was five years? (or eight or ten). In the midst of the storm, time passes in slow motion. But afterwards, you wonder where it went.

It was swallowed up by fear, tears and dedication.

I dedicate this piece to all of you who are handling FTD right now.

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