posted by Mary Lello, Tuesday, March 30, 2010, 5:00 AM
The title is not mine, unfortunately. It is the title of the newest book written by the best selling author, and our friend, Alix Kates-Shulman. I seem to have ADD around reading these days but I have two books I’ve read over the last few months that I was not able to put down. To Love What Is by Alix was one of them (Broken, by Lisa Jones, is the other. Perhaps for another blog). This book is the experience of Alix caring for her husband who fell from their nine-foot sleeping loft in their summer cabin on Long Island, Maine. Scott suffered a Traumatic Brain Injury (TBI) from this fall six years ago which accelerated dementia as well as wiped out his short term memory. Alix confessed to me in an email that after six years she's a little “weary”. Ya’ think?!
I find myself drawing on this book title a lot these days …. To Love What Is. For those of us who have taken the vow “for better or for worse”, how many of us actually think about this? For better, is easy and what we all plan on, it’s the ‘for worse’ part that you just don’t even consider!
I admit to looking at this man, whom I’ve spent the last 30 years with, early in his disease and wondered who this new character was that had shown up to share my life. And do I want to share it with HIM? This was during moments of weakness because ultimately I never forgot Jim Daniels was in there. And, as you all saw on Saturday night, he’s more there now then he’s been for over a year. But still, there is brain damage, there are big gaps and burps that demand extreme patience and pulls out the teacher in me as we navigate speech or the sequence of some tasks.
To Love What Is. Not a question, a statement. One I say to myself frequently now, because, yes, I do. Dancing with Jim on Saturday night I felt nothing but love for him. Loving what is there now.
It's so difficult not to ask for more. When Jim wakes in the morning in tears saying "it's so hard" because he has opened his eyes to another day of a broken body and an inability to speak. We talk about how slow the healing is right now but remind ourselves that he is healing and to try and rejoice in this.
To love what is - maybe I can't really apply this to our life presently as it feels dishonest - but I can look at Jim and say yes ... I do.
Loving you all back,