What am I?

I was at the Occupy Philadelphia rally last week. A reporter, Sara, and I talked, and she decided she would interview me. (She was from CNN. I don't know if the interview was shown or not.)

The camerawoman turned on the camera and Sara took out her reporter's notebook.

"What is your name?" I answered that one easily.

Then the question that always stumps me. (I think I have written about this before, either here or at the old Women In Pain Awareness site so please bear with me if I am repeating myself somewhat. Age, you know, is my joke but it is more what my friend always says of me, "You never learn your lesson.")

"What do you do?"

I thought for a second. Did my usual hemming and hawing dance, more inside my head then vocally, I hope.

Then I said "I am disabled."

I hate saying that. Those of us with pain or other invisible disabilities fear the look that we sometimes get, the one that says 'Oh yeah, sure, I see how disabled you are. (In fact there have been 2 comments recently under the post Pain vs. Cancer. The commenter lets me know very loudly how untrue chronic pain is as a disease and how we are all nothing but drug users, lazy, etc. - Please feel free to reply to him.) Sara had no response to that, nor did I see disbelief in her face (but she is a reporter, trained not to show reactions.)

I stayed at the rally as long as I could then took the train to get back to my house. As I rode along, I thought about the interview. And emotionally kicked myself.

An online friend and fellow pain sufferer said, a long time ago, you (meaning me and disabled others in general) are much more than your disability. You are mothers and daughters, writers and singers, students and teachers. Disability is a small part of who you are as a person.

She was right. I should have said I was an author, or hypnotherapist, or teacher.

I am published and even though I rarely see clients or teach, I am and do both of those as well.

My life revolves around the things I cannot do. The things I can do fade in the background.

Maybe by letting them fade I make myself less, not only to the world but to myself. And maybe that is one of the biggest disservices I do to me.

We caused this. Really?

I had a strange conversation a few months back with a friend who believes in reincarnation. "No matter how awful our situations in life," he said, "we arranged it before 'we came to earth".

It does not matter if you believe in reincarnation, karma, past lives, or nothing like that, the chances are good you have heard someone say 'Well. You brought this on yourself." Sometimes they explain further - your diet, your attitude, your...self.

Is chronic debilitating pain something we bring on ourselves? Is it payment for something we might have done in this life or another? Is it payback because we have not taken proper care of ourselves?

You rarely hear people being blamed for having cancer, maybe for smoking or staying in the sun, but once they have it it is usually something not brought to bear on them as they go through treatments and procedures. And yet, many of us with CP do hear that; when the pain starts and then stays, and stays, and stays, after diagnosis, after surgeries, while recuperating etc. What is it about CP that makes it fair game for their blame game?

Others blame us. We blame ourselves. It had to be something I did. If we could just find the explanation for why this happened, for why it happened to me.

Pain is so unexplanable, even by many in the medical profession, that for many of us this question seems to be at the core in accepting the pain and its staying power. I wonder if we do not tend to ask this question more often than those with other issues, even cancer, a very understandable 'why me' disease.

At the end of the day, or even the beginning, though, no matter what your beliefs, this is not something we ordained for ourselves. This is not something we set into motion. And never, ever, let someone convince you that you did.

Oops. No it's not from the pain..

I had been noticing a scab on my forehead for months, maybe longer. I had been told many years ago that the skin on the left side of my face would probably breakdown at some point. I was afraid the scab was a sign of that so I just kept seeing it and pretending it was nothing.

I also hoped it would be noticed during one of my eye exams since it was close to my eye. It never was and oone day I finally decided to mention it. As soon as she saw it she said "That has to be biopsied. It's a lesion but I doubt it's malignant."

It was cancer, the least of all cancers (to my mind), a basal cell carcinoma. A little office surgery was all that was needed. (Looks like it is back or maybe it was not completely removed the first time so I have to be seen again but still, if you have to have a cancer this is the most minimal of all.)

I did nothing for almost two years because I relied on the fact that it was in the pained area. Other than the breaking down of the skin: and it never got bigger or looked worse so how bad could it be even if it was that?, what else could go wrong there? Nothing. So I thought.

I think of this now because one of the sensations I kept getting, a very, very strong itch feeling at the base of my nose, I blamed on the anesthesia dolorosa.

When these itches came, hard and strong, I took an extra pill or two of my pain control medication (not the codeine but an anticonvulsant also used for pain control.) It seemed to help - but then they disappear on their own, often quickly, and reappear at their own will, sometimes just as fast, sometimes hanging on for seconds and minutes. So what stops them? The medication, or just because they want to? I believed the answer was either/or.

And then the problems with my stimulator started. As I turned down the level of stimulation, the 'tics' still came but when they did they were less fierce. And the lower the level of stimulation, the lower the level of sensation of these itches.

I'll be darned. The implant is causing these, not the phantom pain. It never occurred to me that it could be anything but the damage already there.

Moral of the story: We have to remember that despite our pain we are still prone to all the ills of the world. We cannot let folly (in my case), not wanting to see more doctors, fear of other possible procedures, etc. deter us.

For me a lesson needing to be repeated and hard (hopefully this time)learned.

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?

Time out-ish

I have tried to write at least every 2 -3 days but I am finding I have been using the computer less since the trouble with the implant.

I hope to get some posts out and hope you will bear with me.

Unfortunately I cannot get an appointment to see the neurosurgeon until the middle of next month.

As with many of you with other pain disorders some days I am able to do more or get more done of what I meant to get done, before other things get in the way. My intention is to get to posting before I take up the eye time available to me with other 'stuff' on the internet.

I love to google and am a fiend for the political stories and news. I am going to work at not taking up all my eye time with them so that I have time to post here.

While I am slowing down please don't give up on me or the blog. I'm still here and checking to see if you are. ((*_*))

Who's there?

When I hear others talk about how they long for time alone, their families are too demanding, work too boring or intensive, I am jealous; but not for reasons other than the yearning for family too close to me, too involved in my life, too...there (although I am sure that wears thin very quickly ((*_*)) ). Or work, too tedious, too demanding, too much work.

I had to change a lightbulb. Normally that is an easy task but for someone short and the ceiling high, it was difficult, something nice to have a hubby around for. But it was something doable.

Other house problems can be daunting, when left to your own devices, but I get a lot of it done. The rest I leave, hoping the house leprechauns will come in during the night and do it for me. (they haven't yet but here's hoping.)

This is morbid - but I do worry. What if something happens to me? No one will know for days.

Betty, from church, has made it her job to check for me each Sunday. If I miss 2 weeks in a row she vows she will call to check on me. And a few weeks back she did. Someone noticing my absence and being concerned is not something I have known for a very long time (even when my parents were alive it was rare, a story for another time. Maybe.). It was so kind and a wonderful feeling to think that someone cared enough to worry.

At any rate, what brought me to writing this post today was finding an alone fear of which I had no awareness.

I had to turn down the stimulation in my implant when, for some reason it 'exploded' for lack of a better term, setting off an extremely unpleasant feeling, definitely the sensation of the stimulation, x 100.,

The sensation was so large, the fear and surprise of it so great, it took a few seconds, maybe more, before my mind found a place of sensibility and screamed at me, "Turn it down!"

I did and I was quickly fine. Everyday or so since I have turned down the level of stimulation further. As I got down to 0.05, almost off completely, I became aware I had been turning off the computer (my major form of eye usage) and leaving it off instead of coming back to it later.

The pain was getting worse.

It was never a problem for me to change the rate, amount of stimulation, or the polarities of the implant. Until now. I walked into my bedroom to get the programmer, intending to turn the level up. I stopped in midstep. I could not go further. I was too afraid to even consider changing it.

I talked with the company representative about coming into the office to have them check it out. I realized as I talked to her that my fear was based on the aloneness, of the having no one here.

What if I turned it up and I got that horrid sensation again? How would I turn it off quickly? Could I? Would the fear get in my way? I was afraid because there was no one I had in the house, or I could even ask, to be here in case I needed a fast hand to turn the machine off.

Of all the reasons why the separateness of my life has been so hurtful, this aspect of being alone had ever happened before. After all, I went through the last 9 brain surgeries alone. What could be more fearsome than that?

Now I know the answer.

What color pain?.

Today I read another post in a chronic pain support group about a family member not believing the person was in pain. It is too common a cry, "My (family, spouse, friends, colleagues) do not believe me. You don't look like you're in pain, they keep saying."

My father used to say to me "I don't know why you can't work. I have seen you read, so I know you can."

I repeatedly told him "I can read, it is not that I can't. It is that use of my eyes to read or for any other sustained use for more than 15 - 20 minutes causes severe pain so I have to stop. That is why I can't work."

How could I prove that I had the pain? How could I prove that the eye pain forced me to stop using my eyes?

I could not. Back pain, muscle pain, full body pain. How do you 'prove' that. Move a box one day and the next when you say "I can't." you are suspect. Hold down a job. Your pain cannot be so overwhelming then, can it?

For some reason I was reminded of when my father died. The Rabbi gave each of us a black armband to wear. We were to keep it on for a month. I was the only one to wear it the entire time.

I lived in NYC. When I walked through the jewelry district, home to many conservative and orthodox jews, I expected my mourning to be acknowledged, the armband the symbol that brought us together; for just a moment in time.

No one said a word, or lowered their head in acknowledgement. I wanted someone, anyone, to let me feel a part of something bigger, a community. It did not happen. On the 31st day I took it off and flung it into the trash.

We need to be a part of something bigger than ourselves. We need to have our pain acknowledged.

It is pink time again. People with cancer are embraced by the society, especially if it is breast cancer you have. It occurs to me that there is also a leftout if it is a cancer elsewhere in your body, or for that matter, if you are a man with breast cancer.

There is no color for pain. There are too many conditions that are the root cause of it. Fund research for say, lupus, and the pain of trigeminal neuralgia is left in the sand. Fund fibromyalgia studies and those with CRPS are out in the cold. Fund breast or lung cancer and there is a good chance the results can be used for those who have pancreatic or liver cancer.

Those of us in pain mourn the lives that pain has taken from us. The color black is already taken for all the other losses we have in life. Is there a color for us to appropriate? If we wore the ribbon on our collars would we stop hearing "I don't believe you are in pain."?