While Duane was sick I wrote and shared through our blog. I tried to keep everyone in the loop and updated on our lives, how much fun we were having and how shitty ALS can be. I shared and felt everyone’s love and support constantly. There was a huge amount of our journey that wasn’t shared because I thought it would be interpreted as whiny and complaining so I kept a journal. THE BEST DECISION I HAVE EVER MADE. My journal was for me and it didn’t matter what I wrote, how I wrote or how often I wrote. It was literally, my safe place to express my feelings and frustrations. It was my saving grace.
Back up … In July 2015 when we first moved and settled onto the boat in San Diego we were sitting out back one night, drinking wine, listening to the Sea World fireworks and Duane looked at me and said, “When this is all over you need to write a book…Just about the good stuff”. HAHAHAHAHA!!! The good stuff. This blog showcased the good stuff.
I kept notes and wrote parts of a book and rewrote and threw it away and changed the view point …
I have a plan I am writing a book, probably two. But first I am self publishing my journals. I am very apprehensive about this as it is still so very raw and fresh. There is NO sugar coating anything and I am very aware that this is not for everyone – and this is okay. My cousin, Jamie, who helped me edit it (basic stuff) reassured me and told me that this is the right thing to do. It will help someone, I will help someone. NO one talks about the stuff I wrote about. I wish I could have read something like this when I was going through caregiving and ALS, to help me not feel so alone or so isolated. To help me realize that everything I felt and was going through was “normal” and I wasn’t the only one. To show me that caregiving is hard and ALS fucking sucks. To show me that people who are dying are not always nice and the people around you are not always supportive. I wish I had had a “place to go”.
So with that I am finishing up the introduction and creating a cover and then I will be uploading it to Amazon. I hoping to have this completely done this weekend. I have started on my actual book and will share more about that as time goes on.
Once again, thank you all. Your love and kindness got me through this and I appreciate all of you.
– xoxo Victoria