When I left the school, began to focus on rehab and as we adjusted our life for the disease, we closed the circle around us. I am sure that some people felt left out of the informational loop but we really needed to concentrate on the illness.
As I have mentioned, the school never has addressed my departure and I have heard lots of rumors including that I have cancer. Their compassion and response has been very disappointing. There was no emotional support, no updated information regarding the illness, no dinner sign-up sheet, no nothing. I just disappeared in the eyes of the community.
I thought they would treat me with the same compassion that they teach to the students. I was wrong.
Many of the faculty members are still in contact with me. One told me that the Head announced in a faculty meeting that I had a genetic disease! God knows what she was saying privately to the parents.
A few of the parents and students did seek me out. One in particular would not back away. She moved forward with comforting e-mails, lunches, normal conversation and she had the ability to say all the right things at the right time.
I began to open up more. It is so hard as a very private person to talk about the huge emotional toll of a fatal disease with non- family. She has become family. She had gotten me though some bad times with elegance and grace. She is the kindest person I know.
The music faculty members were in touch for a while but I didn’t want to undermine the new Head of the program, so I backed away from them as well.
We did remove people from our life who were either too much drama or sucked positive energy from us. The circle is small at this point with just family and a few very dear friends who never need an explanation of where I am with the disease, as they have been walking through this process with us.
Next: Afterwards
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