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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Thursday, November 24, 2011

Thanks giving.

The holidays are such a weird time for me.

On the one hand, I leave the way my family treated me, and ultimately abandoned me, behind me most of the time. When I think about considering more surgery for the stimulator or when I fell in the street and had no one to call, of course they come to mind; and the way they treated me comes tagging alone; but mostly they are not there.

My aloneness and lonliness is a part of my Thanksgiving and Christmas just as much as a Christmas tree, turkey and stuffing or presents are for most people.

My nephew, the one person brave enough to brave his family and get to know me, came to visit a few days ago, as he has for the last couple of years whenever he is in town. It is my one visitor, the person I can call family, My excitement and delight over the visit is palpable.

In church the ministers talk about family and the holiday. Last Sunday one talked about everyone having someone to be with. That is not me. Later I tell him that, but feel I am not heard. Honestly, there is nothing he can do about it anyway.

My friend who moved to NY suggests I go to the dinner they have at the church, provided by the food pantry. I am suspect but one year decide to go. It was as I worried, a group of people, each alone, many looking perplexed or depressed, even angry. I feel they are glad to have this meal and this place, but I know staying would only aggravate all of my feelings about the holiday.

I feel some, all(?), at the dinner may not have family. The people who are supposed to be mine live 15 and 35 minutes away but that is, in reality, a galaxy of distance.

They say the opposite of love is not hate, it is indifference. That is what it is, not only now but essentially always.

A memory comes to mind. I was at the dinner table. We had a family table but it did not work as they advertise.

I was maybe 8. I wanted one of them, some of them, to acknowledge I was there. To give presence to my invisibility.

"I bought some candy." I pipe up. "It's in penny candy jars in my room, just like in a candy store. Come to my room and buy some, just for a penny, okay? You can get some and visit me." I implore. My child's heart and soul thinks candy will work, like at a store. Or maybe more apt, a dog. Hold out a treat and they will come to you and be your friend.

They do not come. The canisters stay full. I do not eat the sweets, thinking Maybe today. Maybe today they will come and talk to me.

The house was built to reinforce the separation. My 2 sisters and brother had their rooms at one end. My parents and I were at the other. In between was a playroom, a dining room, a living room and a corridor. It was as though it was 2 separate homes.

We came together for dinner, for passover sedars and Thanksgiving, Christmas, and easter breakfasts and dinners. At one point my one sister took me to work with her: we were friends. The other sister and I double date and then, whoosh, it is gone, and I am persona non grata.

For a number of years I was invited to Thanksgiving at one sister's and Christmas at another but that was it. And then even that stopped. No rhyme, no reason.


I have a nephew. Family. More then many people have, even if only by one.

I have a roof over my head and and at least for the immediate present, funds to pay for it.

I can walk and talk, and see, and feel, and think. The last surgery I had there was a chance that would not be so. I am doubly grateful for a body that works.

I am always grateful and thankful for the Miracle. I can wash my face and go outside even with the wind, or cold, or breeze. It is consistently overwhelming. I do not want to think about when I could not do those things, what it felt like, but I do not have to remember the horror of that pain to know the wonder of being able to do them now.

I do have friends. I may almost never see them but I talk with them online or the phone, very often.

There is a lot to be thankful for: it is Thanksgiving.

It hurts. I cannot say it does not, to be alone for the holidays. But it is also a time for me to be very full of thanks. I work to hold onto that. I think for a good part of the time I am successful. And for that too I am thankful.

Friday, November 18, 2011

116 MILLION IN PAIN. For real?

"Put chronic pain behind you, use our hypnosis tapes."
"A revolutionary method for stopping chronic pain."
"A solution to chronic pain?: Can an all-natural dietary supplement from tobacco plants help ease your pain?"
Excedrin ad for migraine medicine. "These things are for real."

I look at these fake promises and the ad starts to make sense to me.

I know many people do not believe there is a real thing such as chronic intractable pain. Why should they?

Studies, the most recent that 116 million people have chronic pain relies on self-reporting and includes pain within the last 12 months from anything including headaches, arthritis, back pain; entities that we all have have at one time or another. What does arthritis, for instance, or rheumatism mean?

I do not mean to discount the normal pain discomforts and outright pain of life. But a diagnosed disorder, with specific diagnostic criterion, is very different then when someone personally assigns a name to their pain.

I would like to see a study where they study the numbers of those with the disorders where pain is the sole or main complaint. These are different, at least to me, then a more generalized count of all who say they are in pain.

When statistics are printed in the media about the numbers of those with diabetes or cancer or other diseases, those reports are believed. Everyone knows what those names mean. The term chronic pain has come to mean everything from a sprained ankle if the pain lasts for 12 weeks or longer, to the pain of CRPS, trigeminal neuralgia and others.

For sure, those of us who live with intractable pain would like to have a 'revolutionary method for stopping chronic pain" or an hypnosis tape that would end our suffering (as a hypnotherapist it kind of kills me to lump this in). A plant that has curative properties, boy wouldn't that be wonderful?

Our pain is real. It needs real answers and not false promises. It is easier to offer these things when too many people think the disease is also a fake.

"Goals of the study were to determine the prevalence by age and gender of common chronic pain conditions (headache, back or neck pain, arthritis or joint pain, and others), plus their association with both depressive and anxiety disorders."

Tuesday, November 15, 2011


I noticed a person at church a few Sundays ago. His expression was one of pain; the hard seat, other things on his mind, wanting to be anywhere else then there or who knows what. Immediately the expression, a pained expression, came to mind. And my mind wandered to the meaning of that phrase.

I think I often wear a pained expression even when I do not want anyone to know I am in physical pain. The body often belies what you want to keep locked away.

I do not want people to know I am in pain; it puts them off, they do not know what to say, it makes them uncomfortable. I think my family history, of being treated very poorly when I was ill or in pain, adds to that need to keep it tucked within myself.

The last church I was in was very small. When I joined the choir there were only 12 of us.

At that time I had all of the pain, the touch pain, the constant, and the triggered as well as the eye pain.

Every rehearsal I started out okay, the pain manageable. I smiled and was nice, even jokey. I joined in the conversations, laughed at other's jokes. And then, 20 minutes, a half hour into it I withdrew, completely. I looked at no one, my head was down, I pretty much ignored the music. The pain was overwhelming but I thought I was keeping it secret.

"Did we do something to you?" asked one of the members. "Are you mad at us?"

I was dumbfounded. Why would they think that? When I asked the answer was simple. "Your head is down and you stop talking or even acting like part of the group." Oh. My whole body had taken on a pained expression whether I wanted to show pain or not. Once I explained everyone was very kind and sweet about it. The pain was no longer an issue. It was okay to be in pain.

But I think about it now when I wonder why I have so much trouble making friends, being included. I know people see that my eye usually looks 'off' but - Do I wear a pained expression? Do I look like I am in physical pain? Do I look like I am unpleasant? Do I wear the corners of my mouth turned down or my jaw clenched? Can people tell the difference between a pained expression; I am in pain vs. a pained expression, I am unhappy, unpleasant, sad, etc? And does the reason for the expression make a difference?

It definitely does not in the beginning, after all how would someone know the why? Maybe after folks get to know you a constant pained expression from indifference or disinterest, etc., sends them away.

The question is, after they get to know you, does an expression of real physical pain, the constant of real physical pain, is that a turnoff too?

Friday, November 11, 2011


I do not know if you have seen this commercial for an antacid. A man walks in front of the camera. He has flames about him, indicating 'agita'. He says words to the effect of "If I eat now, I have to take an antacid. If I am going to lunch do I need to take another one? If I get a snack now then I have to take an antacid after or should I take it before? Then I am having dinner. Do I take the antacid before or wait until after? And so on.

That is the way I feel about my stimulator implant.

I wrote about something not being right in a post a few posts back (The What if's and Bizarroworld). I ended the first with the words, "Don't anticipate." "Be in the here and now."

The 'What if' is now.

Sue (pseuconym), the company representative, talked with the engineers at Medtronic (the company that produced the implant). They said "We're stumped." Not good. She is waiting now to talk with the neurosurgeon here in Philly (not the one who put in the implant). He is away until next week. But does it really matter? Sue told me the answer is most probably take it out because no one knows what is wrong.

Take it out. I want the doctor who put it in to take it out if it has to be removed, but he is in Colorado. The cost alone is prohibitive and then I have the cats to worry about. Even with a cat sitter coming in once or 2x a day would they ruin the house? This would be the first time in their 10 years of life that I would be away for more than 3 days, and that happened only once. (And then there is the What If something goes wrong and I have to be away longer.)

If I get it removed do I get another one put in? The first surgery was, to be brazenly honest, torture, pure and simple. I was under but had to be awakened, again and again, to answer the question, "Where is the pain?" "Where is it now?" The pain was horrendous, trigeminal neuralgia in its purest and most painful and hateful form. Being put back to 'sleep' did nothing to erase the it, or the fear.

Will they put in another? It was experimental. Would insurance pay? If they do, will the replacement be able to be placed in exactly the same spot? Will I lose the benefit as I did with the second spinal implant to replace the first that worked 85%, that I lost to infection? Who knows?

The major part of the pain is gone, due to the Miracle (or whatever you wish to call it). I remain disabled by the eye pain. I cannot work. But the pain is only eye movement and eye usage. Is that a sufficient reason for them to replace it?

The computer chip is attached to the covering of my brain. It has to be pulled or precisely cut off. Could that cause some brain damage? Who knows? I could be told "No." but if you have to pull enough, slice too many times, I would think there could well be a moment of 'Whoops'.

So, I am the man with agita. If I keep it turned off I get no benefit. If I turn it on, I get no benefit and some exceedingly uncomfortable sensations. If I take it out I would prefer to go to Colorado. If I go to Colorado I need airfare and a catsitter. If they take it out, can I get a new one? Will they pull too hard and damage my brain? Will it work? Implant now, implant later? Working implant or weird, unpleasant sensation? Benefit of stimulation or fear of the surgery? Possible brain damage or stay where I am? Asking the surgeon and hearing "Yes" or asking the surgeon and hearing "No." (or "I don't know")? It is enough to give you indigestion.

Being in the here and now is much harder when the present informs the future. My options are known. Ultimately, unless they say "No." it will be up to me. I have already increased my codeine and reduced my eye time. This present, that might also be the future, is abhorrent.

Honestly, it is a mess. All I can do right now is take an antacid and keep my fingers crossed..

Tuesday, November 8, 2011


Is refusing to accept the pain and disability 'wrong'? Is accepting the limitations and suffering a giving up?

I still do not accept the pain. I write too much, or read too much, or do anything too much that requires me to use my eyes (which is pretty much everything). I notice the pain. I feel it mounting. I say to myself, "it's okay, it's not that bad. I can continue." And continue I do, and them am often actually astounded at the amount of pain there is.

As I read, and write, look through store aisles, sew a hem, merely stand or drive in bright, bright light I fight having to take the codeine.

Since the stimulator 'broke', it often only takes a few minutes into the day before the pain is off and running.

Finding and opening the cereal box, pouring out the cereal, filling the cereal bowl with Cheerios, Total and Shredded Wheat, pouring the milk into the coffee cup and bowl I feel the need for a codeine; to go sit somewhere and hold my eyes stockstill until the pain goes away.

I mention in a church group that it seems wrong to pray for the eye pain to go away, as the touch and worse part of the pain did 13 years ago.

If it was God's Will it would be gone: why pray when the answer has been "No." for so many years.

You do not have to Believe or have Faith. The question remains the same. If the pain has not gone, if no surgery but the first, 30+ years ago, stopped the eye pain, isn't it time to accept it as a reality, a constant, a part of who I am?

Someone, someone very kind and caring, tells me you always have to have hope: you never know what new thing they will come up with that might help. That has always been my hope.

Is it a false hope, a way to keep the life force going, to keep away the horror of reality? I do not know. The stimulator is 100% experimental. It did help, and hopefully will do so again. Fibromyalgia and RSD (CRPS). They used to be thought to be psychological, now they call them real and are developing theories, meds, and therapies.

So what do you do? Do you hang on to what may be false hope - something may be developed at some point in time (or may, one day, turn out to be legitimate hope) or do you accept where you are?

Hmmm, that last sentence was not thought out, just a thought, maybe a Freudian thought.

Maybe the answer is easier then it seems. Maybe, just maybe, the answer is in accepting the here and now as it is, and leaving the future to itself.

Wednesday, November 2, 2011

Celebrating what's left.

I read a post from one of the members of the women in pain awareness group (!/groups/111961795481256/ )and she reminded me of something very important; something I think many of us tend to overlook, even those not in pain. For me, it is a constant that I forget rather then remember.

I have lost a lot. My dreams, my hopes, my life as I once thought it would be.

I sometimes look in the mirror and am surprised. Who is that older women? I am supposed to be 26 still; my hair long and dark, face smooth, eyes sparkling -'bedroom eyes' Bill, my castmate from "HELLO DOLLY" called them; a mouth with the tiny smile that reads expectation and options.

I awaken in the morning and think. What is there to do today? Usually nothing, or maybe an errand or two. Is it a good morning and the eye is not swollen yet, the pain quiescent? Or am I already behind, the pain having the upper hand?

I go to the computer and start reading email. It is too much for my eye. I want to stop but what else is there to do? Who else is there, the writers often unknownst to me but still people with whom I am having a 'conversation'. It is someone, a way out of the alone, and when it is from another person in pain, someone who 'gets' it.

But even that is fraught with the loss. I don't want to have a medical issue in common, much less pain, I want to talk politics and cooking, and theater, and, well, almost anything else.

I am working on my greeting card line to get them ready for an Etsy store. That makes me happy, when I think of a joke or an illustration I can do. I get scared and upset when I take the thought further. What if I can't succeed at this? What if it is too much for my eye - to get items ready to mail out, to address the envelopes or boxes?

My fantasy is that when this is over, because it will be, because the pain will be gone, (I know it is only a fantasy but then you never know.) I will be 26 and have the life still before me I had envisioned when I moved to NYC. I will act, I will sing, I will continue with the friends I made, going out for lunch, watching parades, eating at each other's homes, just 'hangin'.

When I look at it that way there is nothing to celebrate, it is all loss and fear and can'ts.

But I can write the jokes and words for the cards. I can draw the pictures (not good but cartoony enough that they fit). Because of the Miracle I can go outside anytime I want, letting the breeze and leaves, and snow fall on my face, turn my face right into the wind, and not be in pain.

One surgery left so much damage in my neck that I have the 2 clamps and 12 pins holding it up. But, as the orthopedic surgeon told me, "You could have become paralyzed just walking down the street."

But I can walk, and breathe, and my body can do almost everything I want it to do and it can do all it needs to do. I am not as completely alone as it feels - because there is no one to touch and feel right here, right in front of me, but I do have my friend in New York and we talk almost every day, I do have my nephew, we email almost every day. It is more than many have.

I have a roof over my head, I am not destitute. One day I may be living on the edge, because of my financial situation but that is not today. Today it is okay.

So. I have a choice. Is my thinking going to be a broken record and keep repeating: the pain, the pain, the can't, the don't, the fear? Or will it play a new song - yes the pain will be there, it will get worse. I will have to stop; but right now, for this moment, for this few moments, this half hour, this hour, I am okay and it is a good feeling. Hold onto it and maybe even through the pain the celebration of the have will play on.