DAMNED IF YOU DO. DAMNED IF YOU DON'T. DAMN THE PAIN.

I wanted to just be positive here, before the holiday, but as I thought about it those of us in pain often have this hurtful (in many ways) quandry.

Christmas Eve is our candlelight service at Church. The choir will be singing a number of songs. We will also be doing a little 'choreography', fanning out along the side aisles to help light the candles of the congregation.

Candles and I are not friends. The flickering hurts my left eye, the movement sets off the pain. The turning on and off of the lights are also a source of pain as the eye reacts to the light, dark, light again.

Using the eye to read the music, the opening of my mouth to sing pulling on the whole side of my face (because of the tightness from the paralysis), even the walking, watching where I am moving, a use of the eye rarely considered. These all have one result. Pain.

I take the codeine more often now that the stimulator is not working. To go the service will mean a lot of codeine. A lot of feeling cloudy, a little slowing of my responses, and worse for singing, a mouth as dry as a bale of cotton.

I want to do this service. It is, essentially, my Christmas.

I sent a few gifts off in the mail but I have noone here, in front of me, to gift or to gift me, or to eat breakfast or dinner with. That is nothing new anymore. I have somewhat come to acceptance with that. Christmas has a bigger meaning, if you are Christian, and I try to keep to that notion. It helps, a lot.

But I miss the beauty of Christmas and a big part of that is the candlelight service. All of us with chronic pain have the situation when the question becomes gigantic. Can I do (thus and so)? I want to, I look forward to it, it is a major event for me. But can I do it? Can I stand the increased pain I know it will cause? Will the pain interfere to where it takes me to the edge of the tolerable level of pain? Will the drug ruin it for me anyway?

I want to do this service. Badly. This is one of the times where the question has to be asked.

Does the pain make my decision or do I overrule the pain and accept the repercussions?

Magnification. (is it always?)

When I teach relaxation and antianxiety techniques I like to include what cognitive therapy calls 'errors in thinking'. One error is named magnification and minimization.

The usual example I give for this is of a soprano who goes hits a bad high C in a performance. She then makes it so big in her mind that she thinks and expects she will miss that note in each and every performance she does, soon even refusing jobs, fearful of repeating what is now in her mind a gigantic error that will forever repeat.

In everyday life it is important to remember and keep in perspective those mistakes we make, those things that we can use as a learning experience.
What about when you have constant intractable pain?

"I couldn't do it yesterday, so I will never be able to do it." Is that magnifying or reality?

For some with pain it is possible that yesterday's 'not' is possibly today's 'can' but does not mean it is tomorrow's 'can'. Accepting the erratic nature of your pain is an important component of living with pain.

Often the problem is with those around us. As I have written before my father would say "I saw you read yesterday so I know you can read." I tried to explain that the eye pain does not stop me from reading at all, just for any extended period of time. He did not want to accept that. His magnification, 'she does, so I know she can.' was on him. I have no control over what he decided to believe. None of us can change someone's belief when they want to hold onto it steadfastly.

The converse, I could yesterday, but I cannot today, is the same concept.

What about the 'I could not yesterday, I can not today, and I cannot tomorrow'?

For me that is where minimalization comes in, or more to the truth, refusal to accept the limitations of the pain.

It is different because my pain is in my eye and the use of them (since when you move one the other automatically comes along).

It is possible for someone with bodypain (below the neck) to say 'my pain never lets me bend down', for instance, 'so I cannot reach my shoes'. That would be an everyday truism for them.

But I cannot quantify the pain. Did I read exactly the same amount of time, the exact same amount of words, the exact same number of breaks between reading, the same width length of writing (the smaller, the less you have to use your eyes) yesterday and today?

The pain is worse, I think, since I had to turn down the implant stimulation level. But is it? It seems the time I can use my eyes is lessened - but I was okay at choir this week. Wasn't I?

Then I think but I stopped looking at the music and listened instead to hear the notes and timing. I still had to take the codeine but I was better, no wait. Maybe I wasn't. I just can't tell.

I have lived the last 30+ years the same way. Even after all this time I still have the doubts it will go away and the hope that it will end and I will be fine and back in the world 100%. I magnify the hope, mimimize the doubt.

If I did the opposite, if I accepted the reality, would that turn of events from one extreme to the other be a help to me? Is my 'error in thinking' more a way of keeping hope alive than accepting truth?

As those in chronic pain we do not often fit into a lot of the categories into which much of the rest of the world fits. Could 'erroneous' thinking be another mismatch?

The subtitle says "good things". Here are some of them.

What have I learned over time:

The guy at the teller's area in the bank was taking such a long time. I started to get antsy and annoyed.

Wait a minute, I told myself. The air conditioning is on here. I don't have it at home. Let him take his time. I am really enjoyinig this.

What did I learn? Patience. Maybe it is a virtue but in this instance it was cool, literally.

The computer is taking forever to turn off. I sit here and wait and wait. I am starting to grit my teeth. When will this turn off, for goodness sake's??"

I look at the clock. Oh, sure it felt like 10 - 15 minutes but it was all of 2 - 3 minutes. What else would I be doing if I wasn't waiting for it to turn off?

Heck, not much. After all it is only 2 - 3 minutes. It is not like I do this a lot of times, so maybe I have spent all of 2 - 6 minutes of my day waiting for it to turn off.

What did I learn? Time may not fly when this slow slow computer finally decides to turn all the way off; but time is not as slow as I think it is. Oh right. Patience. Again.

Everytime I go outside, or wash my face, or rain falls on my head I revel in the lack of pain. I rejoice each and everyday, no matter how bad the day might look, in the fact that I can touch my face.

The simplest of things, washing my face, I took for granted all of my life up to the second the tic started. I never thought a person would need general anaesthesia just to get hair, scalp, and face cleaned.

What did I learn?

The surgeon always made sure he had some children's shampoo in his locker in case I forgot mine. The nurses were wonderful. I felt like an inconvenience, at best. They were saving vision - this must be a wate of time to them.

Instead I learned some folks can be absolutely terrific and caring.

My neck was injured during one of the trigeminal neuralgia surgeries. The surgeon who evaluated me for the neck said "You could be paralyzed just walking down the street." My neck is now held together with 2 clamps and 12 pins.

What have I learned?

The simplest of lessons: I can never take anything for granted. It is a glory that I can brush my hair on the left side, that I can stand, and walk, and talk, and hear, and see; to do everything a body needs to do and most of what it wants to do.

I can't. I can't. I can't. This is a mantra of mine. But, as a friend points out, Yes, you can. Yes you did. You wrote a book, you kept a lawsuit alive by self-representing that otherwise would have gone down the tubes. You drove cross country 2 times. You advovate for women in pain awareness. You asked and got the Pa. senate to pass 2 years in a row (and working on it for this year) a proclamation to declare September Women In Pain Awareness Month.

What have I learned?

All that was after the pain. The pain does not have to stop me. It is I who stop myself.

What have I learned?

That this old dog forgets she does not have to learn new tricks. A lot of the tricks are already in my repertoire, there for the remembering and taking.

The dentist and I (and trigeminal neuralgia)

Yesterday I went to the dentist. Even though I no longer have the touch pain I have 'phantom pain' (also called anaesthesia dolorosa). Dr H, a graduate student at the university dental clinic, started setting things up. I was there for my right front tooth, the one I injured when a fell 6 weeks ago. As she started to look at the tooth she used both hands; the right one on the right side and the left hand pulling on the left side of my mouth. Each time the left mouth was moved or pulled, because of the paralysis, the whole side of my face was being moved and pulled. It is a very discomforting and unpleasant sensation. Anticipating this I flinched each time I saw her hand come over the top of the left side of my face.

I explained to her that the left side, even though I no longer had the 'tic', was very sensitive to touch. It was not pain but still unpleasant. "If I flinch it's not you. It is just the way it is." She seemed to understand. At least I thought she did until she asked for an assistant. "She is very scared." she told the assistant.

The assistant stood to my left side. "I am not scared of the dental work. I am concerned because I know when you touch the left side it will be very unpleasant." I reiterated the 'it's not you, it's me' mantra.

They tried to minimize the touch to that side as best they could. It did not always work out but I think the fear of the discomfort outweighed the number of times they set the discomfort into motion.

The fear remains even though the spontaneous and triggered pains stopped in 1998. I no longer look out the window and worry when I see a breeze or rain, or hear that it is cold, etc. I walk out my door when the weather is bad and I smile. "Thank G-d, I can do this." The worry is gone.

But...

I get some 'tics' now and again. They are not the same sensation but a strong feeling, sometimes an itch, taken to the 50th degree, sometimes more like a slightly reminiscent electric sensation, tic yet not tic. Either is strong enough to stop me in my tracks for a few seconds or sometimes minutes; longer than any tic I had when I did have the tic pain. They also only happen in the area where I did not have the trigeminal neuralgia. That was in what is called V1, V2: the top of my forehead to slightly under the eye. These I get only below my nose. My pain doc and I think these are from the anaesthesia dolorosa and not tn.

I know they are not tn but the fear comes as soon as the pain is there. It's coming back. Oh my G-d, what am I going to do??? Then it stops; and the fear ends as well.

I know the dentist will not set off the trigeminal neuralgia, she can't - I no longer have it. And yet, as she puts her hand up and moves to the left side of my head, my eyes start to water, my body tightens. I wait for the assault that, thankfully, never comes, not in a trigeminal neuralgia lightning, knife splitting, skin tearing torturous kind of way. I know the unpleasantness of the phantom pain, very discomforting but tolerable. Bearable and more forgettable.

Does the pain ever end? Yes. For me, the worst of it did. Does the fear ever go away? I still have hope.

So greatful for the internet.

I found a site today http://bookblogs.ning.com/ and it reminded me again why the internet is so important to me.

The pain started six months after I moved to NYC, too soon to have made any strong friendships, ones that could weather the storm that was my life with trigeminal neuralgia.

The first surgery I had worked for three months. Six weeks after the operation I was working at House Beautiful magazine. Almost immediately I made 2 good friends, Jan and Blanche. We spent many weekends together and often went as a trio to lunch or dinner.

Once the pain returned it was impossible to continue with the relationships. Everytime they invited me to go somewhere I had to say 'No." New friendships can only take so many rejections before they end. No one said anything. It just petered out. Did I not return their calls? Did they not return mine? I do not know. I just know they had lives to live. I had only pain.

My family was not there for me. My half siblings were there for none of the 12 surgeries I ultimately had, starting in 1977. My parents, one or both, came for the first 3 but then stopped. I was truly on my own.

Work and family are where you make friends. I had neither and was in no position to either make a family of my own or meet people to make new friendships.

I did have 2 friends in NYC, both from my apartment building. One I rarely saw and yet I think we both considered each other a 'best friend'. The other was a woman, also disabled, who was not able to get out and around. She told her father "The only reason we are friends is because of our disabilities. Otherwise there is no way we would be friends." She was telling the truth. Necessity makes strange bedfellows, or friendship in our case. Sadly both of them died. I was alone again.

A few years later I moved back to Pennsylvania, only a few minutes away from one sibling and 30 minutes from the other. My brother would leave Florida and move back a few years later.. He also now lived about 30 minutes away from me.

The 2 sisters were friendly at first. Then they decided they did not like me, no idea why and they never discussed any issues with me so we could work things out. Alone once more.

I did make a friend in my townhome community. It was again a friendship based on need rather than shared interests and like. Jane (pseudonym) was a lovely lady who took me everywhere with her. I was unable to drive; I was very dependent on her, but year by year our differences grew stronger and need became the only tether. Ultimately the friendship ended. A newer friendship, with someone I met at a yardsale, was more based on similarities and shared interests. Then she moved to New York.
We talk on the phone almost everyday; but it is not the same as someone there in front of you whom you can see and spend time with.

I sing in the church choir, and know people in the church, but there is no one I can truly call 'friend'. Some have been very kind and friendly, but they all have their own lives. Many work, they have children and grandchildren, their time is filled. There is not much room for someone new. I go to choir rehearsal and service, and fellowship afterward but, ultimately, I have to go home, and it is once again to home alone.

The computer is often a harbinger of pain for me, because of the intense amount of eye work, reading or writing, but I would be bereft without it.

It is here I "talk' to my nephew, the one person in the family brave enough to have sought me out years ago when no one else would. We write almost everyday. On facebook I "talk" to some people from high school, discuss politics or chronic pain or medical issues or even nothing at all, meet new people through websites and now blogs, have lovely, kind people at my website.

If it was not for the internet I would be even so much more alone. Yes, the people, for the most part, are only names (and maybe a picture) but it is people with whom I can feel a connection, sometimes even a kinship. For that I am almost unutterably greatful.

Discounting the positive (and so nice when you don't)

I know an elderly lady who ends many a conversation, or begins them for that matter, with a reminder "I'm a dummy." I keep telling her she is not. "But I forget my words. I have to stop and start when I am talking to people." I remind her 1. she is 89. The fact that she is able to hold an intelligent conversation is something of which she should be proud. 2. I forget words a lot as do many people. 3. There is nothing wrong with actually thinking before you speak. No matter what I say she replies with "No. I am stupid. I am a dummy." I tell her her hair looks nice. "Oh no it is all flattened out." I remark that I like what she is wearing. "This. It is just an old pair of pants."

"You have to stop doing that", I tell her. "Everytime I say something nice to you you discount it." The last time we had that conversation was this past Friday. And yesterday, Saturday, I had to tell myself advice giver, advise yourself.

A few months ago I had signed up to take a table at a health fair. I would be there as a hypnotherapist and relaxation/stress reduction educator. I was not seeing clients but hoped I might be able to by the time the fair came around and this way I could drum up some business.

Unfortunately I am still not able to see clients. As a result I was not looking forward to the fair. In fact, until reminded of it about a week ago I had completely forgotten about it.

I have trouble, because of the eye pain, driving in the rain. I was keeping my fingers crossed for the weather to be bad. I would have a built in excuse not to go. Of course, it was a beautiful day.

Feeling guilty because I had given my word I would be there, I drove the hour into the city and set up my table. The other folks were nice. The turnout abysmal. Maybe 15 people. Four hours was a long time when you were spending most of it just sitting at your table waiting.

Before setting out I had worries. On the one hand if they had the turnout they were estimating - about 300 people, I would be in bad pain from using my eye. On the other, what if no one came? What a waste of time, car usage and gas.

During the four hours there I worked with about 8 people. I taught each of them a relaxation exercise that takes about 1 - 2 minutes. Every one of them loved it. It involved closing their eyes. As soon as they opened them they were ecstatic about how relaxed they felt. One of the things I love about doing hypnotherapy and teaching the exercises is seeing people have success and usually fairly immediately. It was terrific to have this with them.

Finally the day was ended and I packed up the few things I had brought with me and walked out to my car.

Man, what a waste of a day. No one came. It will take me all this time to drive back home and the cost of the gas and who knows if there will be traffic. I'm bummed. What a mistake to have come.

Those thoughts were internal. "Wait a minute." I said outloud. "Didn't you enjoy teaching those people even if it was only those 8?" I founding myself nodding. "Yeah. I did."

"Did you feel proud of yourself that you were successful teaching them the exercise?" Again the answer was "Yes."

So, if you enjoyed it and if you felt good about what you did and what they experienced, then was't it, in fact, a really good day?

I had a choice. I could have let myself stay in that darker place. I could have let even more negative thoughts fester. It's a good thing not a lot of people came. That would have been awful. I would have been in such pain. I'll never be so stupid as to sign up for something like this ever again.

It is a good thing I gave my friend the advice so recently. Otherwise I might not have remembered to give it to myself. Otherwise a good day would have registered only as a bad. And what a shame and loss that would have been.

Bra shoulder valleys and why it made me think of how I relate to my pain.

I saw an ad on TV about bras and the crevices many women get when the straps bite into their shoulders.

It reminded me of when I had gained weight. Like many women, (sorry men but this may be TMI - too much information) I tended to gain in my chest area.

It did not matter that the valleys in my shoulders got wider and deeper as my undergarment got tighter and tighter. No matter what, I was not going to acknowledge the weight gain. The best way to do that was by refusing to admit I needed a larger size. Wearing it meant pain in my back and around my chest where the bottom part bit into me. It made it a little harder to breathe as there was no good room for my ribs to expand. It meant my shoulder gulleys turned red, then redder becoming chaffed and sore. Undaunted I swore it was still the right size for me.

What does this have to do with my pain you may well ask.

I am boneheaded about that as well.

I refuse to accept the aspects of it that have been with me for over 30 years. I honestly awaken each day thinking "I no longer have the pain, I know that is the case." And then I use my eyes, even just to look over at the clock. "Oh no, it is still there. How can that be??"

When the pain gets bad, if I use the computer or go to a store and actually look at a lot of items, or go to choir rehearsal or church, I have to take my codeine. It is a lot less than I used to take, a major reason because the face pain itself is gone but also because I have consciously, and more often I think unconsciously, stopped doing things that will cause me to need the codeine. Nevertheless I fight taking it. I think of it as 'giving in'.

But it is not a surrender, it is using what is available to try and make the pain a little less 'there'.

It would be nice to have a tidy ending to this writing; that I get it and no longer refuse to acknowledge my reality.

I wear sports bras now. You don't have to deal with the size as much with them. So a pound here, a pound there and I can still pretend without all the messy side effects of a too tight garment.

An eye movement here, too much eye usage there though and I still fight it. I can read a little longer - just another page maybe, but by then it is too late. The pain that was manageable a page ago has gotten out of hand. Instead of 'giving in' the page before, and waiting 20 minutes, maybe a half hour for the pain to go back down so I can use the eye again the pain is unmanageable. Now I have to give up and take a codeine. Now I have to wait sometimes for up to 2 hours before the pain has calmed down again enough to use my eye.

I talk with others in chronic pain, read what they write and see that I am not alone in this reluctance to acknowledge the pain as a part of my life that is not going to magically disappear.

How deep does the crevice and pain have to become before it must be seen as real? At what point must I accept it? I guess maybe the real question becomes must I accept it? And if the answer is yes, why can't, or won't I?