starting again

I have been trying to complete a post for weeks. Different reasons came up for not finishing but the need to write pulls from some place. I feel connected to life but still so alienated. I sometimes think having a brain injury is like being buried in Stephen King's Pet Sematary. For anyone who may read this who has not read the book, I will give a brief synopsis. There is this burial ground and kids start burying their dead pets there. A few day later the pet wanders home, alive but not the same. The cat or dog is altered in some weird way.  The longer the pet was dead before being buried there, the stranger is the new personality. Not just strange but malevolent in a way.

I think it is part of what makes me feel invisible. I feel like a ghost walking the earth. I came out of surgery altered and scary. It is like I am not supposed to be back. Everyone who loved me was so grateful that I made it through. Only gradually did the changes become apparent. I knew something was wrong in my head, with my thinking, but I was unaware of what others were seeing. It was baffling to me that I pushed my family to the limits without even realizing we were close to that point. It is like a mistake that I survived. I came back a different person.

When I think about the people who still love me, who do their best to try to understand what it means to have a brain injury. I want to cry. I am so grateful for their patience. My daughter, my husband, my mother, my last couple of remaining friends. I do not feel worthy. I cannot be sure why they bother. I do not say that because I am so down on myself but because of the overwhelming evidence that I should be.

I worked hard at being a good person. I was determined to be different from my father. I consciously endeavor to be generous and thoughtful. I suppose I can not make up for the times when depression took over and sucked me into a vortex of solitude and fear. Without consistency, I imagine friendships do not seem reciprocated.

Leaving school the way I did was devastating. Someone remarked recently that my abrupt departure from my job was like a boyfriend breaking up with me. That comparison has lifts the burden of anger from me occasionally. I know the feelings of betrayal will pass. The questions are the same as the ones I asked at the end of a relationship. I loved him so much. What happened to the promises that he would love me forever? What did I do wrong? How could he hurt me so much after everything I gave? Why doesn't he want me anymore? What is wrong with me that he does not want me anymore? And there is burning desire that he should be suffering as much as I. How could he just go on without me? What does she have that I don't?

The part that is so hard for me is that I never had this kind of break up with a boyfriend. I was the one to end things and I rarely had regrets. The one relationship that I obsessed over was one that I was forced to end because I knew I would never get what I wanted from it. Even then, when I left he still called and told me how much he loved me. It broke my heart that he could be so cruel as to tell me how wonderful I was while not being able to commit.

But school, leaving my job was so different. It really makes my question myself as a human being. I hate to even admit how hurt I was, I am, by the words that were said to me, written about me, written to me. My assistant's final email to me spelled out specifically the details of what a horrible person I am. He closed by advising me I should worship my husband as a saint, presumably for putting up with me. (I do adore and worship Brian and I battle to quell the fear that he is only tolerating me. This article from the Times was so accurate: When Injuries to the Brain Tear at Hearts) If I listen to what people say to me now, I am the rudest, meanest, most inconsiderate person. Yes. people have said that to me. "I have never been treated so poorly in my whole life." You can see why this might bother me, especially after I thought I was trying so hard to be nice.

I have been told to stay positive and I feel some obligation to be that person who overcomes adversity, emerges victorious after great obstacles. That is what people want to read. I personally hate that crap. When I read these memoirs of people with brain injury who experience bliss or made a miraculous recovery because of the great sacrifice of hordes of loving supportive people, I don't believe them.

I am not writing this to solicit words of support from those around me or from the brain injury community who really does understand. I am writing because this is how I feel right now and I want to express it. I know I am loved and I love all of you. I just don't understand the hate. If I could dismiss it as insignificant expressions of people who don't matter, I gladly would. These were people whose opinions I valued.

Who am I? What did I become when I woke up against the odds? Maybe I was not supposed to make it. By clawing my way out of the dirt, I no longer belong. I am forever altered.