I have just been reflecting on a comment made once in a blog entry. The person commented they wanted to know what caused their TN. Fair statement. When I had my first MVD Jan of 2009, my neurosurgeon said that in 13 years of practice, he has never once seen a skull thick as mine, and that I had the base of my skull compressing the nerve. So, I know a birth defect caused my TN. Does it really matter. To me, no. I know I have a rare cause to a rare disorder, and I figure, with what little research is devoted to TN as it is, I will never learn what caused the problem in the first place. So, then I think about the push to find a cure. I go back to the fact chances are I will never truly learned what caused the bone deformity that caused my TN, and in my case the chances of a cure are slim to none. I made my peace with this years ago.
What does matter to me is that I keep my life moving forward in spite of the TN. I tell people I a human being who happens o have TN. I know some people got mad at me for not wearing a teal something on the day they made TN awareness day. Thing is I do not wear any color bands for the neurological disorders I have. I do not identify that strongly with the disorders. Maybe after dealing with TN for the past 18 1/2 years I have accepted it, as just being what it is. I wake up thinking if the pain is kept down for me, what is a dull roar, then that day is a great day. Please know, I have had almost 19 years to come to terms with the issue. Having sad that I remember how hard it was when I was first diagnosed.
It just dawned on me. What matters the most is best summed up in oe word. That word is:
Acceptance.
Sarah