I am very happy to announce that the story of our journey through frontotemporal degeneration is now published and is now available from the Amazon bookstore.
Writing and publishing it has certainly been a journey in and of itself. I used my journals from the time when my husband was first diagnosed and set the story into a context which describes our early life together. I had wonderful memories upon which to draw. Our letters, mementos and musical memories all contributed to the overall picture. I hope that this serves to illustrate how much our life together was changed by the bastard disease.
Of course, during the writing of the book, I had to go over and over the story many times. The living of it was painful and the writing of it was equally so. I cried almost as much writing it as I did living it. Even now, two years after my husband died, I still want to share with him the sense of accomplishment I feel at having got it all down on paper. But of course, it isn’t all of it. Each time I read it, I think of little things that happened in between the experiences in the book. About things he did and said, things I did and said. But the book isn’t really about me. It is about how this disease causes brain degeneration and ultimately, life degeneration. Our lives were broken down, one brain cell at a time.
Even though my life was irrevocably changed by our experience, my husband’s was changed and ended by it. So it isn’t about me. It’s about our love. It’s about the life we shared. It’s about what it did to him and vicariously, to me. Most of all, it’s about us. Who we were, and who we became.
I speak with other people who are caregivers for loved ones with FTD all the time. I see how their lives are changed too. Daily, weekly, monthly. But the big change is forever. We are forever changed by our experience and what FTD brings to us and takes away from us.
There are many cliches about losing someone you love. So yes, there is a hole in my heart. Yes, a piece of me is missing, never to return. And yes, I will never “get over it” (and yes, I know that’s not grammatically correct, but you take my point). “Getting over” your whole life is probably impossible. I’m not even going to try. I have been through it, around it, got stuck in what was left of it and have somehow reached a place where I can handle it.
FTD made the holes in my life and my heart. The scar tissue that has grown over the holes is a fine, permeable barrier that sometimes lets sadness in and out. The FTD is gone now. It left my life but it touched me in such a way that I cannot let it go completely. I even wrote an article called “Enough”. I have not published it because I am not yet sure that it is completely over for me. Touching the lives of people who are still battling with the bastard disease remains important. Maintaining contact for what is happening to those people who are in the throes of FTD, or just beginning their journey seems like the right thing to do for now. How long that desire will last, I don’t know. I just know that right now, it still feels a little like a thread of a connection to what happened to us.
And I still need it. I’m not quite ready to say “Enough”.
I hope that you enjoy the book. It was written from the heart, as is all my work. I felt the need to get the story out there, not because we’re important, or because I am vainly seeking attention. But because when it happened to us, so little was known about FTD. So few people were being diagnosed, and so many were and are still struggling every day. I receive comments from some that my blog sometimes lifts their spirits and that is all I need – to know that maybe it was not all in vain.
That maybe our battle was just a skirmish that will contribute to winning the huge war on all kinds of dementia. I have to hope that it is possible. I have to hope that every little thing we went through was for something. I don’t know what it is yet and I may never know.
I hope your FTD days are as peaceful and calm as possible. That you are able to find a way to handle the terrible days with love and humor.