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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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Saturday, March 31, 2012


Last Friday I was talking to Jennie (pseudonym), a very elderly friend of mine. Her brother had been in a car accident and broken his leg. She started crying as she told me what happened. This reminded her of a comment he had made about her children not helping her. That led her to talk about the many unpleasant/upsetting things his children had done to her, things over which she had no control. These thoughts increased her agitation and disturbance, leading her into even more negative thoughts and memories.

I told her she was talking herself into being even more upset. Her children did not do what her brother said they did. They were good boys, very good sons to her, visiting her every weekend for the past many years. "There is something called thought stopping." I told her. "When you start thinking these unpleasant thoughts you say to yourself "STOP!". Then you replace the thoughts with good ones; how good your sons are to you, going to dinner with the new friend you made, good memories of your life, for instance.

I was at a memorial service on Sunday. The minister's father had died. As she spoke of him she recounted many good memories of the kind of person and father he had been.

What do these 2 things have to do with each other?

My father was not like hers. Charlie (what I called my father) was not a nice man, at least to me. Her stories led me into some very dark thoughts about my father. Does that mean that everytime someone tells good stories about their parents I have to start down the memory lane of bad thoughts?

No. I have to stop my own automatic negative train of thoughts and resulting emotions, but does that mean you have to quash all the bad thoughts, memories, and feelings? Is this a way to feel better or is it a way of merely repressing the bad?

It is important to differentiate. The thinking of only the bad about something that is in the control of another - the way Jennie's nieces acted was not her responsibility, nor can she change, is unhelpful. Thinking about it does nothing for her but engender more bad thoughts.

Thinking about what my father did and squashing the thoughts is hurtful. It has caused me to behave in ways very hurtful to myself. My swallowing the thoughts makes it impossible to find the ways to overcome what happened and change what I need to change. Ignoring it, pretending it is not there only lets it find other ways to express itself.

When we cannot do something, because of the pain, vs. allowing the bad behavior and remarks of others is the same issue. The acceptance of the 'cannot' is important in allowing us to let go of the was and accept the now.

What others do and say is in their control. It is their responsibility. When we hear it, when we think of it, when we allow it to continue to hurt us, we need to listen to the thought and tell it "STOP!"

Tuesday, March 27, 2012


I was very surprised on Sunday when talking with 2 other members of our church choir.

I mentioned something about my vibrato, that I had trouble controlling it. I did not think I sang very loud - in fact I thought I was fairly inaudible so I was very surprised when Mike (pseudonym) told me he could hear me all the way outside the choir room; it was an unpleasantness to the sound of the choir. Midge (pseudonym) sits next to me and told me it was sometimes a problem for her as well. It hurt my feelings to be told this; I was glad for the information because I was unaware. I listened and responded, somewhat surprised by the adamance from Mike, but I was okay with it, it was something I needed to know.

It is not as strong when I sing alto. I mentioned that and Midge suggested maybe I should change from the high soprano section to the alto.

I like singing the high notes but it is also easier for me. We usually sing the melody which allows me to easily learn it without resorting to a lot of relying on reading the music.

Singing alto would mean more eye usage. It requires more reliance on looking at the music in order to learn it. It would be a problem, whether enough to not be able to continue singing I am not sure, but it is something I would prefer not to try.

To my surprise Midge told me she was aware of how hard it is for me to be in the choir, because of the pain. I was so moved that she was aware of it and also that she was letting me know.

The odd thing is, as much as I was hurt by the negative information, I had no problem hearing it and talking with them about it. Hearing someone tell me they understand my situation, they know the struggle I have, that was so very difficult. I blushed, I stammered, I tried to push it aside "Oh thanks, but it's okay." I did everything but fall through the floor.

It is a strange thing. Compliments, empathy, compassion, those are hard to hear, hard to accept, no matter how much they are wanted and needed. How much easier is it to listen to things that feel hurtful?

The singing information was a learning situation for me, different, for sure, then say, an insult like 'your hair is greasy' or 'you smell' but it still hurt. So why is that more acceptable then a kind word or a compliment?

It makes sense that if you learn from a hurtful comment why can't a kind one be just as educational, even if the learning is only in the ability to accept the kindness and care being offered?

I wish I had an answer so I could end this post sounding really smart. Oh well, not yet.

Friday, March 23, 2012


It used to be that if you had a terminal illness doctors would tell you "You have 6 months to live." They found many times people obliged so most docs no longer give a time frame.

Of course a physician has a wellspring of knowledge for many of the ills we suffer, "You have (this disease), this is what you can expect." They can give us a list of the potential issues but how much of a crystal ball do they really have and, more important, on what do we need to base our decisions about what they have seen for our future?

I was thinking about this because of the situation with my eye, that I wrote about in the post LITTLE THINGS (may) MEAN A LOT.

Everyone was sure my eye would have to be closed permanently at some point. They also told me my skin on the left side of my face would probably break down - in the far distant future. Of course, there is still time for this happen, but so far, 30 plus years, it has not.

I wonder about the effect of a doctor's pronouncement, with surety, on how we view our future, and our present.

Yes, they know what the books say, and what they have seen in their own practice; but do we give their words too much importence when they look in their 8 balls, when they become our psychics - this will happen?

It goes back to the idea of hope. How much weight do we give to their predictions?

It is always important to hear, and listen, to what they tell us, but we need to keep open our third ear. The one that says 'Ok. He is saying this (thing) could happen.'

But the operative word is 'could'. It does not mean definite, and the lack of the definite can open up a wealth of possibilities, the best being it has not yet happened.

Monday, March 19, 2012


One of the main suggestions we hear in chronic pain support groups is 'keep a diary': when the pain started, what level, what increases it, what decreases it, and so on. It is a terrific idea; making it easier for patient and doctor. It may help with the diagnosis, I won't get tongue- tied or even if white coat anxiety hits, I will still be able to remember all I want to say because it is there in black and white.

It never occurred to me that after surgery/treatment/procedure, successful or not, it continues to be a good idea. I assume I will remember the good, and the bad I want to forget.

Whenever someone asked about my current implant, "Is it working?" I always replied "I'am not sure. Maybe."

Now that it has failed there is no question. It was definitely working.

I wish I had thought to keep notes. The pain starts now when I get up in the morning. I had forgotten, when the implant was on, that I only had pain when I used the eye. If I did nothing, the pain stayed put. Reading, etc., that set it off; but I am noticing that my 15- 20 minutes is sometimes a lot less, and when I let the pain amplify til it is unbearable it takes much, much longer before it has quieted down to an acceptable level. I also take a lot more codeine.

The failure of the implant makes the information less useful in terms of benefit or lack of it but before it failed I always questioned it: Do I even need this thing? What's the point? I really don't think it's helping. (And yet I would never have let them take it out, just in case.)

Had I started a journal, keeping it from before the implant to now, keeping one from the onset of the pain even (although I don't know where I could have had room for 30+ years of diaries) I would have had a much better feel, not only for when and what worked but a wonderful reminder. This, this, and this helped, even when, especially when, everyone, including me, had given up.

The diary is an historical document of the pain, a way to insure correct recall but it can also assure us, comfort us, remind us that there was, and is, hope. And when all the possibilities seem over with and gone, it can be a reminder of all the times we were wrong.

Thursday, March 15, 2012


One of the ministers told this anecdote last week:

She often found herself walking with the senior pastor. He was taller then she, his strides longer. He also liked a fast pace. She struggled to keep up with him, a frustrating task. Eventually it occurred to her I'm going to go at my own pace, even if it means not keeping up with him. To her surprise she found he started matching her pace.

While listening to her I started thinking about those of us who have families, colleagues, friends, etc who say they do not believe us, who insist we can do what we tell them we cannot, who abandon, argue, insult, often seeming to believe that is the way to get us to do what they think we can do.

Many times we try to match their pace. Inside we fight with ourselves, I can't do it, how can they act like this, what can I do to make them see, to make them understand, to get them to feel what I am feeling? while we struggle to do the undoable; but that does not work for them if they cannot see the struggle and definitely it does not work for us.

We cannot make them 'get it".

It would be wonderful if we could. It seems it is the rare person who is able to make the connection, something clicked,and they found the empathy and compassion that had been lacking. But what about the rest who refuse to see or hear us or the pain?

The other thing the pastor mentioned was the Serenity Prayer:
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Pacing is in the accepting. Is the pain changable, at least for right now? Is the ability and disability changable? (I have used this anecdote before: My father would say "Why can't you work?" I would reply "Because of the eye pain." He always said the same thing: "I have seen you read so I know you can." No matter how many times he said it, challenging me to read more, to use my eyes more, there was no way that was going to happen. It hurt me, to the quick, but I could not change it, my disability, his disbelief.) The things that cannot be changed may be the person you most want to change, the person you want, feel you need, to be your support, your bullwark. Sometimes letting go of the hope of their change is what is necessary for acceptance.

Sometimes the disbelief extends to the things we try in the hopes of ending or at least reducing the pain. ("You want surgery, you like to take drugs, you like going to the doctor.") It is necessary, it may not change our situation, but we need to try what is suggested. We need to do what we need to do to help ourselves. It often takes courage, and the courage that I see so many in pain demonstrate is truly overwhelming.

To know which is which is also in the pacing. I cannot match, cannot keep up with, the rationales people have for challenging us, challenging our pain. The emotional toll the fight takes is antithetical to doing what we need to reduce the pain, to get through the day.

So, here is my idea. Let them match our pace. Slow down, do what we need to do to keep the pain at bay, if possible, or get through what we need to do in spite of the pain (to spite the pain(?) ) Let them catch up to us.

Monday, March 12, 2012


I have been going back and forth about my options with my failed implant.

I often find when I have a decision to make, no matter how bad the choices, I feel better once I pick a side. This time I cannot find a side that lets me feel like one part of the choice is better then any other. Each option makes me feel that I am removing hope for myself. And somehow that feels worse then when the withholding of hope is caused by another person (or doctor.

I can have the implant removed. Because it is attached to the covering of the brain I run the risk, albeit small, of brain damage.

If I have them put in another, which may not even be a possibility because of insurance coverage for something that is completely experimental, even if it is just a redo, I run the risk of brain damage if something goes wrong.

I run the risk too of it not helping, a normal risk of any of the surgeries/procedures I have tried throughout the years so that risk almost doesn't count.

If I just have them remove the battery that powers the implant, it is the easiest of options, however...If something happens to the wire to which it is attached, they no longer make that wire. Any chance of reattaching the implant would mean completely removing it.

Doing nothing is the best option. Well, maybe not.

I have had a few episodes, as recently as last night, where I feel the stimulation. It is a feeling very different and in a different configuration then when I get a 'tic' from the anaesthesia dolorosa.
It could be the sensory cortex has retaining the memory or the implant refusing to turn off, or stay off. (The medtronic rep did not think that could be the case but why not? I have had lights come back on even after I have turned off the switch. Sometimes current happens no matter what you do to stop it.)

The thing is, if I do any of the above, I court danger, dangers that could result in my no longer being able to care for myself. If I do nothing, I run the risks of still getting stimulation and not knowing what, if anything, that could portend.

I think about geting an arteriogram. They are better then when I had them many years back. Then the tiny extra vessels I have throughout the left side of my brain were not visible. It was only in surgery that they were found (and Dr. Osterholm, the first surgeon, got rid of almost all of them stopping the pain for three months, until they grew back).

I am allergic to the dye and the test carries potential risks of its own.

I cannot think of a good option. My neurosurgeon writing in an email that no one in the world would have an answer for me does not help matters. (Although honesty has its place and is better then false hope.)

So, one minute I decide I will have it removed, the next - no, I will do nothing, the next, try the arteriogram. Back and forth, back and forth. Then I decide making a choice might be the worst thing I could do. Almost all of the choices, except the arteriogram, could end any other option.

Then there is my theory that I have floated for years; blinding and paralyzing the eye. No movement means no touching against the lids. I think the 'phantom pain' is 'set off with each movement of the eye. The blinding is necessary because the paralysis of one eye causes double vision.

We have tried before, paralyzing it with Botox and sewing it closed. The botox wears off in about 2 -4 months. It seems to help but I do not want it sewn closed again and the doctor definitely has said he will not do that.

Maybe I could wear a patch. It would be painful in its own way but something, maybe, I could get used to. The ophthalmologist who has given me the botox before is not sure he is willing to do it again. No one wants to blind and paralyze a seeing eye, which could be done permanently in an operation. It is a seeing eye, even though legally blind - from lazy eye not the pain or tn. Another conundrum. Paralyze it enough, does it start to atrophy, ultimately causing a loss of vision? Blindness, if G-d forbid something happened to the right eye, is not a choice, it's another horror.

No answers only tons of questions.

I cannot let the pain, the disability, the increasing decreasing of what I can do and for how long because the eye pain is going back to its pre-implant levels, make the decision for me. I have to let my logic and intelligence do the picking.

And neither them nor I want to.

Friday, March 9, 2012


My left eye, as the result of 2 procedures, is numb and has a problem closing because of the facial paralysis. In 1979 the eye had to be sewn shut (called a tarsorrharphy) because it was not able to keep itself lubricated. I was told that it was to be permanent, that the eye did not have the ability to keep itself well if it was opened.

After about 6 months they opened it halfway but that looked almost as bad.
After about 2 years I insisted it be 'taken down' (opened) completely because I could not tolerate the way it looked. My doctor objected but, to his great credit, agreed to do it anyway.

At first it seemed like maybe it had not been a good idea. I was back and forth to the ophthalmology clinic and eye hospital sometimes 1 - 2 times a month. After a while there were longer lulls between bouts. For the last few years it has done well and then decides for some unknown reason, to go 'bad', my term for turning bright red (the only way I know there is a problem) and is unable to recover, requiring a few more temporary tarsorrharphies, each one with the caveat, "you need to consider letting us close it again, permanently."

About 1 1/2 years, 2 years ago, it turned red and refused to get better. Even the one ophthalmologist who had sided with me for a very long time - to fight to keep it open - was now on the side of the rest: "It needs to be closed. Permanently"

I refused but agreed to a compromise. I would patch it at night and see if that helped.

I had always balked using a patch because of my fear of the pain. Even though I no longer had the triggered trigeminal pain the discomfort of touch, as a result of the 'phantom pain' (anaesthesia dolorosa) made the idea of taping the eye closed a frightful prospect. What was worse - the fear, even though for most of the time I had it taped I would be asleep anyway, or having the eye closed again? The fear of the latter took care of the threat of the former.

It worked for a while but then the eye went very "bad". Was my eye reacting to the tape I was using or just the regular problem? No way to know but, again, we were at the end of the line.

No, wait we were not. I started patching it with paper instead of just the tape. And again, it healed and stayed well, for a while, and then, again, it went bad. Once more it was not healing. Now what to do?

This is a long anecdote to get to my point. ((*_*))

I go to a university ophthalmology practice and see new residents every year but the same attendings. It had been a long time since a new physician was added to the group.

This day I saw the newest member. She heard the same story I had been telling for years. "You're patching it but it is still drying out? That is a problem." I somewhat begged. "Please, please don't say the T-word." I did not want to hear it again. I was still not ready to give in.

"Okay, no 't-word. Why don't you try this? You only tape the patch on the sides right? Maybe the eye is still opening under the patch. Let's have you also tape it in the middle which should force it to stay more closed."

I did. It did. It has been many months, not sure how many but a lot, since I last had to go to see them.

Was part of this a matter of familiarity breeds familiarity?

After a while it is hard to think outside of the box when it is the same problem being presented; and even the out of the box answers always backfired sooner or later.

I know my fear of taping, then patching, then adding this extra level of tape that meant more touching against the unpleasant numbness was a factor. I did not want to have to take pain meds shortly before going to bed "just" because of the tape, then 'just' because of the patch, then 'just' because of the extra tape.

It turned out I could tolerate it and honestly, if it turned out I could not, would having to take a med be worse then a surgically closed eye? The fear and fretting made all options seem and feel worse.

But, at the end of the day, it was a little thing, one more piece of tape, that, at least so far, has saved my eye, and me, from a fate worse then - well, worse then what I feared. And that is a very good thing.

Monday, March 5, 2012


After choir rehearsal on Thursday night I decided I could not do the concert for the coming Sunday. If the pain was as bad as it was after the rehearsal how could I do the concert?

I fretted over the decision the rest of that night and all day Friday.

"It is not as though I like the song that much, I mean I like the spirituals, and there are some parts of the major piece I like but still, it's not like I'll be missing out on something I would regret not singing. I still hate that I didn't do the Messiah but this would be okay."

By late Friday evening I changed my mind. I do like the longer piece. I'll go to rehearsal Saturday morning and see if that is as bad.

Saturday's rehearsal was not as bad. Thursday night we went back and forth in the music, from this page to that, to work on problematic parts of the music. Each 'this and that" required a turn of the page, look at the page numbers, find the measure on that page, find the words, look at the musical instructions...oh and sing too.

Singing means using my mouth, of course. If the cheek swelling that is often there is bad the mere act of talking, much less singing becomes a problem. Thursday's rehearsal was a night when all the stars were misaligned; making the pain worse each time I turned the page, opened my mouth, etc.

Saturday morning there were less page turns. The tightness of that side of my face was not as bad and I became more enamored of the music. I was also not aware of how much 'down' time we would have as the ensemble sang a few songs and the choir director played two organ pieces. I decided I could do the concert.

It was good. I enjoyed it, I found I knew most of the music and rarely needed to look at it. The non-singing time allowed me to recover somewhat from the pain. I was very, very glad I decided to try it.

It was my hope that I could do it. It was the threat of the pain that almost made me stay home. And it was a choice - do I rely on the threat, a known commodity, the pain will be set off, or do I see it as a challenge - can I do it, do I make the try?

It was a decision that was undoable, at least to some degree, more undoable of course, if I made the decision not to go after the Saturday rehearsal.

But it was that rehearsal that I almost blew off, thinking: I know how the pain reacts, how my eye behaves, what level of pain I will have; but, I did not have all the information I needed to make the choice. Becoming aware of the time we would be sitting out made a big difference.

I was glad I took the threat and turned it into a challenge. It is not always doable, some things deserve the fear, require the decision of "No, I can't". But sometimes it is worth taking a second and third look to see if what we fear is really a challenge waiting to be tackled.

Friday, March 2, 2012


There was a Messiah singalong the other night at the church. Our choir was scattered througout so I did not feel compelled to go but, since the failure of the implant, this is happening more and more: I want to go but I do not want to go because of the pain.

All that afternoon I argued with myself. It will be fun but how much eye work will it take? How much codeine? The 3 minute walk to the church starts the problem. The cold makes the lids swell, the swelling makes the pain worse, the pain makes me need the codeine so I start out already behind.

In the old days, when I had the touch triggered pain, it would not even be a consideration. There would be no way I could do it. Even though it is now only the eye pain, not, Thank G-d, the horrendous excruciation of the original tic the pain still becomes the decider of what I will do.

I want to be a part of this. I want to sing. I want to be one of the many, of a community that contains me as a member. It is the pain that does not want to be there.

So I ask myself, Do I want to be there more then I do not?

I wish it was as simple as that. Everything socially, all that would let me be a part of something well worth sharing, cannot overcome the fear of the pain, the fear that I will not be able to control how much I use the eye. I also want to be part of the socializing after, which is also bad for the eye, but I will force myself while making the pain close to unendurable, as close as you can get while still pretending. So ther decision is unhappily made. I stay home.

The choir is doing a concert this Sunday.

Again I have to decide. Can I do it? After, and during the rehearsal last night, I fought the weight on each shoulder, both devil and angel. One says "Forget how dry your mouth is from the drug, forget the pain, you have to do it. Do you really want to let the pain separate you, once again, from the group?" The other replies "Forget doing the concert. Let go of the need to be one of the many. You saw it in rehearsal. The joy of singing turned into desperation and longing for the song to end, the pain escalating, refusing to leave." Each side is right. Each side hurts me in its truth.

Once again the pain puts me to the side of life, keeps me from being a participant. We have another rehearsal tomorrow morning. I am putting off the decision hoping that my mouth stays wet, the codeine is not necessary, and the pain decides not to make itself known.

It amazes me that, after 30 years of this, I still have the capacity for self delusion. And yet, maybe this time, my fantasy will magically become real.

Hope truly does spring eternal.