Stephanie Nielson's story is at http://www.ksl.com/?sid=29314477&nid...icle-popular-3 If you can read this with a dry eye, you are a better man than me.
Stephanie is also the author at http://nieniedialogues.blogspot.com
She had burns over 80% of her body in a plane crash and her face, formerly very pretty, is now disfigured with skin grafting. Her main thesis is "humility is beautiful". She says she would get back into that plane to become the woman she is today. I think she means she has gratitude for life, family, and love.
You can SEE scarring, and be inspired by someone unfraid to face the public with hideous physiognomy. You cannot see pain, so an audience cannot respond, cannot be inspired by something they cannot picture. Central Pain is meaningless to the observer. Flames might do it, but not a condition which has no vocabulary and no visible manifestation. The "eye is the monopolist of the senses".
Now I am not that kind of person, not that philosophical. I am research oriented and want science to attack disease with a fervor. I would not go back to the circumstances which gave me Central Pain. I could be wrong, but disfigurement, as terrible as it is, is probably less destructive to the self, to the identity, than relentless severe pain. I do not expect to see Bollefen, Arndog, Alan, Cass, Grange, SWH, Smoky, anyone else here or myself traveling around giving inspirational speeches as motivational speakers. I could see Betheny making people laugh, which is a real talent.
This is perhaps unfortunate, as who can say what any experience has taught them, but I guess I just focus on what pain has taken away, and I cannot say that I would even consider going back, even knowing more about how to cope with it, now that I have gone through it. It has been a hard downward trajectory.
I cannot make myself philosophical, and do not intend to go quietly into a mode where I can inspire others. Hence, I will not write a book, as some have suggested. They wouldn't want to read what I have to say about indifference to suffering. Instead, I intend to make people uncomfortable with any tendency to ignore those in pain. I would remind them of the researchers who create Central Pain in lab animals and measure their success by the "autotomy rate" the rate at which they chew off their legs to try to get rid of the burning.
When they tell me I am "lucky" or that "You needed to learn something", I who am not a swearer, come very close to becoming one. I would never tell an audience they are good people and that they can learn from me. I would tell them we have to take the bands off our minds and accept that some people with pain are outside our imagination, and we should listen to them and credit what they are saying, without adopting the amateur therapist mode and remarking how bad our low back pain is. "Physical pain is the greatest evil"--Augustine.
Yet, like others, I think Stephanie Nielson is a genuine hero. She inspires me. My own disease has not served as an inspiration to anyone, least of all myself. If you disagree, it is because you can SEE my words. Given the above, I think Christopher Reeve is perhaps the most outstanding man of his era. He didn't have central pain, but he helped fund research to study it. With terrific problems of his own, surely it took a monumental amount of charitable spirit to allocate funds to a condition he did not have. And his doctor was our own Dr. Wise Young.