My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Wednesday, May 2, 2012


Somebody said that it couldn’t be done,
But, he with a chuckle replied
That "maybe it couldn’t," but he would be one
Who wouldn’t say so till he’d tried.
So he buckled right in with the trace of a grin
On his face. If he worried he hid it.
He started to sing as he tackled the thing
That couldn’t be done, and he did it.

Somebody scoffed: "Oh, you’ll never do that;
At least no one has done it";
But he took off his coat and he took off his hat,
And the first thing we knew he’d begun it.
With a lift of his chin and a bit of a grin,
Without any doubting or quiddit,
He started to sing as he tackled the thing
That couldn’t be done, and he did it.

There are thousands to tell you it cannot be done,
There are thousands to prophesy failure;
There are thousands to point out to you one by one,
The dangers that wait to assail you.
But just buckle it in with a bit of a grin,
Just take off your coat and go to it;
Just start to sing as you tackle the thing
That "couldn’t be done," and you’ll do it.

(Edgar Albert Guest

Dr. Martinez injured the sensory portion of my facial nerve in 1979, when he was going after the trigeminal only. The sign was loss of taste and sensation in the left side of my mouth and tongue. Three months later Dr. Jannetta, in going after the trigeminal nerve, paralyzed the left side of my face 100%. No one, not Dr. Jannetta, the facial nerve specialist, or the ophthalmologist who was dealing with the ophthalmic side effects, suggested physical therapy.

At that time, because of the extent of the pain, I do not know if I could have exercised my face; but I was never given the opportunity to decide if I could or to try.

I have had face lifts on the right side to make my face look more age symmetrical, the left side not aging while the right side is wrinkling nicely. There has also been a browlift and even a cutting of part of the left side of my smile so it looks more like a smile (that helped little). I had the area of atrophy by my left eye filled with fat. That lasted for about 2 years and then the atrophy reappeared. Although this was all reconstructive, to fix what Dr. Jannetta had done, insurance called it cosmetic. The money ran out so there was nothing more I could do. Everyone said so.

Forward 20 years later (since the paralysis).

I was looking in the mirror. I had never adjusted to the way I looked, the way the paralysis looked. Strangers still stared, children often looking at me, winking back, mimicing what they thought I was doing: the eye closing, seemingly trying to meet my mouth as it forced itself upward. People asked me "Did you have a stroke?" I was sick and tired of it. My face looked back at me. A thought hit, taking me by surprise. What if I tried to exercise it? Maybe I could fix the smile.

Everyday I forced the left side of my mouth to move upward. I used my hand to move it passively. Actively I struggled, my whole body tightening, forcing some mouth movement. It was not very effective - at first, or at second, or at third, but, little by very little I noticed movement. I was beginning to have a smile on that side. I had not seen my pain doc. for six months. The first thing he said as he walked into the exam room was "Your mouth is moving more." He could not have said anything better.

The forehead on the left side does not move at all. I am working as hard on that. Very slightly the eye brow is starting to move, almost imperceptible but definitely moving. Part of the proof is that the area of the very visible atrophy next to my eye, is starting to fill out.

They said nothing or that it could not be done. But I am doing it.

Sometimes we have to go past what the doctors tell us, when they cannot or do not think out of the box, we have to find the creativity within ourselves. And it may be that it can be done, and we are doing it.


  1. Carol, I love you, respect you, honor and miss you as we meet seldom physically now. Your present post is absolutely inspiring for your talent and achievements. Some of us have far lesser physical remnants and from other direct sources; I am told my 2 sides of face with one affected by the facial neuralgia's, palsy look like 2 different persons, and sometimes my eyebrow is up 3/4 inch and pain, and numbness both ... but we have met and you really have had it harder and overcome much more. People might not guess how still pretty you are and yet of course the effects of what you describe are decidedly there, are real ... so pleased to have the post you just created. Brava! Great person, great book, hope to see you soon (er).

    Dr. L. D. Misek-Falkoff , co-founder with you: Persons With Pain International - accredited to the Bureau of the Disability Treaty.
    Founder/Director Respectful Interfaces

    1. Hey Linda, I have sent you a few emails over the past long time and always gotten response our mailbox is full so it is very good to hear from you.
      Thanks for the nice words, it is hard for all of us who have experienced the bad side effects of MVD and otherprocedures.
      I hope you are doing well. ((*_*))

  2. Not quite sure what to say here. Doctors are human beings, they can give good and bad advice, they make mistakes and also think they know what the future holds, but could be wrong. I'm glad you are getting results. All the best.

    1. Thanks for the comments. I have written elsewhere here about the med. mal. that was involved but most docs work as hard as they can and are as honest as they can be. It is ultimately not only to our detriment but theirs if they do not.
      Thanks. Carol

  3. Hi Carol,
    I just want you to know that I think you are such an inspiration to me and so many others. I suffer from chronic nerve pain, and had just been told by my doctor that nothing could be done. I was devastated, then I came home and read your blog, and my hope to get better someday has been re-newed. So, I thank-you. And, I think you are one of the bravest people I have ever known.

    1. Ah Renee, Thank you for the kind words.
      The implant I now have is 100% experimental. My neurosurgeon had given up on me and then one day came to me and said "I have an idea." It helped for over 20 years; just started failiing a few months back. I thght that was the end of it but it seems there is more experimental work going on with the implants. As someone who was told outright, by docs, 'rational suicide is acceptable in your case." it never ceases to amaze me how many new things come out. Sometimes it does take meeting with more then one new doc but, and this something I used to think was not truth, just when you think it is the end of possibilities someone has thght of a new one.