Some people will call it Mother Nature, The Universe, happenstance or coincidence. I call it G-d.
My neurosurgeon wrote in my chart that what happened is "amazing" He says "I have to see the definition of Miracle before I call it that." My opthalmologist and neurologist use the word Miracle.
Trigeminal neuralgia, the cause of my pain, is also called "the worst pain known to man." and "The suicide disease." For me it was the latter.
Trigeminal neuralgia, for me, was horrendous, life destroying pain, constant and sporadic in the left upper side of my face. It came out of the blue smacking me in my left temple: a lightning bolt burrowing - a thin line of burning, sharpness, a knife turning and slicing through my face. A slight breeze, a wisp of hair could set it off. Wind, cold, bright sun became my enemies; fearsome and loathsome, because they too caused tremendous pain.
It was only one half of one half of my face but it totally disabled me.
The first operation stopped the pain. For three months. Then the blood vessels that had caused it and been removed grew back. And the pain assaulted me again.
The next brain surgery and the next and the next, six all told, did not help. I was better in the summer because the weather was better. That let me go outside more but the pain was not stopped.
I suffered terrible side effects, from drugs and surgeries. The pain continued. I could not give up on finding a way to stop it. I had no choice. TN was my enemy. It had to be contained. I stumbled through more tests, drugs, even alternative treatments, such as hypnosis and acupuncture, all to no avail.
At the end of my rope and strength, suicide became the only possible way to end the pain.
I told the psychologist I had been seeing. She suggested I meet with a thanantologist, a specialist in death.
I met with him for an hour or so. He told me I should call him if I ever needed his help. I was not sure how he meant that.
The next step was an inpatient pain clinic. They were very nice there but told me at the outset they could not help me. They worked with pain that was from the neck down. Exercise, and PT could not help me. The group therapy, relaxation techniques, biofeedback could not hurt so it was worth trying.
Dr.(H) the owner of the clinic and a psychiatrist, asked me directly. "What will you do if we can't help your pain?"
"I will kill myself."
"Carol, I called the Court's chief psychiatrist to see if you could be involuntarily committed since you are threatening suicide."
"It's not a threat. I don't want to die." I said. "I just have to do whatever I have to to stop the pain."
"He agrees. He told me we could not have you committed since your threat is in response to a legitimate medical situation."
A month later I was packing to leave. My pain was unchanged. Members of the staff added to their goodbyes. "We'd prefer you don't kill yourself but we'll understand if you do."
I was ready to go home and act on it. At the last second the director called and told me another neurosurgeon had agreed to see me.
I went to the Massachusetts General Hospital expecting to have surgery. Dr. Sweet (the surgeon) and I had talked about the operation in a long phone call. He was going to cut the trigeminal nerve root. Once I was admitted to the hospital the surgery changed to a mini- frontal lobotomy: "You'll still have the pain. You just won't care that you do."
I said I would try anything to stop the pain but, not this.
The experience with him was very difficult and crazy making. I went home thinking if I killed myself I would not know if it was from the pain or from what had happened there. I decided I could not do anything, including suicide, until I felt more sane.
That was in 1981.
I limped along with the pain for five more years; slightly less disabled primarily because I was on more drugs.
Finally I went to see Dr. Barolat, a neurosurgeon practicing with the same group where my first surgeon, now retired, had been. He had stopped the pain. Magically, I thought this man could do the same, and at first he did.
I agreed to a brain implant, called a dorsal column stimulator. It did nothing for three months. Then suddenly it kicked in.
My pain was gone about 85%. I was still disabled because of the eye movement pain but I was able to stand in the rain, the cold, the wind. And not have pain. It was terrific.
The wonderfulness lasted only 7 months. The battery that powered the computer chip that was the implant died. I somehow also moved the wire that connected the battery to the chip.
Surgery to change the battery and re-place the wire was done at the same time. It required 2 incisions. That might have been why I ended up with an infection. I had to have the entire implant removed.
We tried another one about a year later but that did not work at all.
Dr. Barolat said nothing more could be done. A few months later he changed his mind. "I have an idea." Instead of putting the implant in the neck he would put it in my brain, directly stimulating it. It would be experimental but pain was pain. It made the decision for me. "Let's do it."
It took many weeks to find the right combination of stimulation before it seemed to be helpful. It never did what I needed though. I stayed on medications, including a lot of codeine. I never got to a point where I was not still disabled by the pain.
I waited a long time for relief.
Finally I was back to where suicide was the right and only answer.
I stood in my living room, a bottle of pills in my hand.
"Okay." I said as I looked at them. "There's no other choice."
I felt sad. And scared.
And then I felt this compelling feeling.
It was not a voice or words, just a sensation of being pulled. You need to lie down..
I could have fought it or refused but did not. I went and lay down on the couch.
When I tried hypnosis to deal with the pain it had not helped at all. It only taught me how to put myself into trance.
The feeling continued. Put yourself in trance. I thought, I don't know why I'm doing this. There's nothing to say. I know what I am going to do. And then the words came into my head.
I did not hear a voice; the words were just somehow there. "Your brain needs to know and remember that the left fifth nerve, your trigeminal nerve, has been cut, burned and killed. It is totally and completely dead. Your brain needs to know and remember that."
The words were true. They continued, over and over, for about 10, maybe 20 minutes. I had never heard of pain hypnosis being done in this way. It was always with "glove anaesthesia": The therapist gave instructions to make your hand numb. You then transferred the numb from your hand to the pained area. The only other way I knew was to talk directly to the pain. I had never heard of addressing the brain directly.
The words talked to my brain. Finlly they ended and I came out of trance.
And the pain was gone!
I could touch my face. A face that had needed to be washed under general anaesthesia. A face that had such pain I let them cut into my brain over and over again. And give me narcotics, even opium and morphine.
That was in 1998. I don't know why G-d gave me the Miracle. For some reason it did not effect the eye pain. Why He would stop part and not all, only G-d knows. Maybe it was because it was the face pain and not the eye pain that was creating my self imposed death sentence, .
I know people, including me, think when there is a Miracle everything changes, life is suddenly terrific.
It is not.
You know my story. I want to work but the eye won't let me. I did not get a family, the one I have, the ones who live up the street did not suddenly start caring. I still have to use the word 'disabled', because I am. The full life I want and still expect, even after all these years, did not materialize.
I am often unhappy with my lot. But.
But I can touch my face. I can go outside. I thank G-d every day for this. He probably gets tired of hearing me say it for I also do it when the wind hits my face or the rain starts or its cold or breezy, or, or, or...