Showing posts with label Fatal Familial Insomnia. Show all posts
Showing posts with label Fatal Familial Insomnia. Show all posts

Friday, April 9, 2010

Brother Love's Travelling Salvation Show


About a year ago, I stumbled upon a blog that provided me with contact information for the sister of my Junior High School Choir Director. I learned of his death in the 1990’s from another member of that choir who I had recently discovered through Facebook. (The ultimate social network for reconnection and receiving WAY too much information about your friends, for sure!) The blog(A Death a Day: Fatal Insomnia | Michael Corke) was essentially a chronicle of rare diseases and those they affected. Some of the subjects were famous, some not. This particular disease is called Fatal Familial Insomnia. It is a rare, unforgiving disease about which little is known. MC was my current age when he passed away and knowing this made me think of my own unforgiving disease.

It was an exciting time for me. I had just moved out of the recovery home after 14 months, was working in my chosen profession, developing new friendships, and reconnecting with friends from my past. I was spreading my wings. I have reevaluated many of those reconnections and most of them have fallen by the wayside. The only thing we shared was space in school. After that, there was nothing. Only a select few have remained a part of my life today, though some from a distance.

When I contacted JCM, though many years had passed since MC’s death, I felt transported back to a simpler time in my life. A time that brings me as many pleasant memories as it does painful ones. (Remember, I was a teen.) However, my interactions with MC were all positive and when I read in that blog how FFI had changed MC’s personality, I felt a profound sadness. I felt the need to reach out to JCM to provide her with whatever comfort I could in the form of happy memories. MC had an eclectic taste in music (I mean, really strange stuff for the 13 year old I was at the time---but I can still remember every word of many of those crazy songs) and he encouraged me to step out of the shadows I had been hiding behind. This is the way I wanted JCM to remember him. When the initial excitement faded, our email communications slowed down and eventually ceased. Her email yesterday got me thinking about my motives during that period of my life last year. Not my motive with her, but the others.

My pursuit of acceptance led me to contact many of the people I did last year. Most were only popular names I could remember, some were those with whom I had real relationships. Or as real as they can be at that age. After the initial reintroductions, there was nothing left to talk about. Superficiality returned and I again felt rejected and less-than. I made the decision to sever those ties. It felt very much like I was chasing a ghost. I was looking for external validation that I am not the same person I used to be or that somehow I could change the past by showing exactly how "evolved" I now am. The more friends I had, the more I felt the old me slipping back. The me that longed for approval. The me that was not quite accepting of who I am.

For many alcoholics, the story is the same. We were awkward children who knew there was something inherently different about us. We were either unpopular for a variety of reasons, or popular for the wrong reasons. I am the former. I was a redhead in a blonde world, I wore hand-me-downs from different generations, and my parents were fairly strict and overprotective. I don't blame these things for my alcholoism but I still I carry the effects of the circumstances of my childhood with me today. It’s something I can’t change. I can only change whether I let them continue to have a negative impact.

I still have a lot of work to do on my journey. I still have reconnections I’ve made that I just can’t seem to let go. I need to examine what keeps me in relationships that are unfulfilling or unhealthy. They are very much like the lamp I keep in the corner, even though it no longer works. A silent hope remains that one day it WILL. I need to move forward remembering that the past is the past. I left it there for a reason.

As for JCM, though she and I are connected through her brother, I sense deep down that this is a new friendship that will grow over time. I don't feel a need to prove my worth with her. In that way, she is very much like her brother. She accepts me for who I am. She understands the devastating effects of progressive family diseases. FFI is one. Alcoholism is another.

(*Note* People do die from lack of sleep. Please consider this when counseling a newcomer who is suffering from insomnia. The chances of FFI are slim, however, it is a falsehood to believe it doesn't happen. For some reason, I find this pertinent to the beliefs about the disease of alcoholism that existed just a short time ago. Lecture over.)

Thank you for paying me a 12 Step call.