After my book was published I expected that, if no one else, the Trigeminal Neuralgia Association (TNA) would be excited that someone had written a book about their personal TN experience. There was no other book out there. Trigeminal neuralgia was, absent a storyline once on Matlock and once on The Bold Ones a pretty much unknown disorder. I know I had long despaired of finding others who had it. I looked for books, thinking I could at least read about someone else's pain. The only way that would happen was if I wrote one.
I wrote to the TNA after it was first published. My story was too harrowing, they said, but worse still, the doctor who paralyzed my face as a result of medical malpractice, Peter J. Jannetta, was on their medical board. It was much more important to not let their members know about a book written by one of their own if it protected someone of more import: a board member.
Why write about this now?
I have been letting a few chronic pain and trigeminal neuralgia sites know about the book and this blog. It never occurred to me to go back to the TNA site until a friend told me that there had been a board member change at the TNA (now called the Facial Pain Association). One of the people who refused the book was now gone. I presumed that meant maybe they were now open to letting the membership know.
It seems that is still not the case.
They have a FB page. I "liked" the page but they have blocked me from writing on their wall. That precludes me from writing or posting anything. Unfortunately it also disallows me from commenting on posts, such as the one from a woman who posted about a treatment that sounded promising against the eye pain, information very important to me. I guess they decided they still did not want their membership, those who suffer from TN and facial pain, to know that a book is out there. My truth about one person's fight against and struggle to live with this devastating pain threatens them. I had hoped by now their concern would be about getting the word out, not still protecting themselves and their group.
It bothers me that the powers that be are often, as in this case, more concerned with protecting their own to the potential detriment, or at least loss, to their membership, the ones who suffer with tn and facial pain.
(BTW, I wrote to them twice about my inability to post to the FB page but never received a reply.)