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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Tuesday, May 31, 2011

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.

Monday, May 30, 2011

( - ) narcissism

(Sometimes it is hard to write the post while trying to not inadvertantly appear to insult or complain about someone else. I do not mean to and hope nothing I write is taken that way.)

The person who normally sits next to me in the choir loft was absent. The person who sits next to her kept her distance rather than moving over to sit next to me. To my mind that did not look good, especially when we rose to sing. I started thinking Is it me? Is there something I have done that makes her not want to move closer? I could not think of anything, but I kept looking at it as it must be something that relates to me. The old "It's not her, it's me."

I was at the dental clinic. My student told me I had to get root canal.

"How long ago was it that you hurt the tooth?" she asked me. "6 weeks." "I checked with the attending dentist. He agrees with me. You need root canal." "You know it amazes me that it's over 6 weeks ago and I still even have a bruise." I said, pointing it out. "6 weeks? I thought you said 6 months." "No, 6 weeks." "Well, you still need it done." Surprised, I said, "Maybe the attending dentist should look at it." "Ms. Levy, he said it is necessary." I asked again, "Are you sure? Because it is only 6 weeks and not months." "No. He says you need it."

After she finished sanding and preparing the tooth for the next appointment I again asked about having the attending come to check. She bristled. "I am a dentist. I know what I am doing." Very aggravated she suggested maybe I wanted to have another student assigned to me. It was not worth the fight. I thanked her and left.

I knew that I had said "weeks" and not months. Every other time I had work done at the graduate clinic the attending checked the student's work. It was not an inappropropriate request. From my experience not being seen was the abnormal.

What does that have to do anything?

I started thinking. Maybe it was my fault that she was angry. I knew I had given her the right information; that she was a student and I had the right to have the attending check and speak with me. I knew she was wrong and not I. But, somehow or other it had to be my fault.

Negative narcissism.

In a way there is no 'positive narcissism'. You hold yourself in an abundently high level of esteem to the point where you are the 'It." of life.

But isn't that the same thing I was doing? "It is not her, it is me." It is ME.

It is hard for me to find and make friends. It is because I have no family, no husband, children, grandchildren, work? This is how I explain it.

But. Maybe it is not all me. Maybe it is others, not willing to extend their hand further. To want to learn about me even when I work to learn about them. "How are you today? I heard you say (about your work, kids, grandkids, the world). That sounds interesting." Someone else comes along and they turn from me, looking to the people they know well, cutting me from the conversation.

(Sometimes it is me. I am uncomfortable. I do not know what to talk about when they talk about all of the above. A friend says "Talk about your grandcats." No. That is one more step into the definition of crazy cat lady or spinster.)

I have a diagnosed chronic pain disorder. The doctor does not hear me when I explain the pain. He blames his inability to diagnose or help me on me. "There are times like today when I believe in her pain.", i.e. there are times when he does not. Other docs have said the same in different words. "Your pain is not that bad." "It is imaginary." and so on. They don't believe in, accept my pain? It is proven and documented. It must be me, the way I appear, I explain, I behave, I speak.

Even the assinine. If I had something else, he could help me, fix me. But this, what I have. It is the fault of my body, of my ridiculous uniqueness.

I think of other times, other examples. It has to be me. What else could it be? It could be others, it could be life.

It is time to get out of my head, out of my negative me, me, me. Positive narcissism (I am wonderful, terrific, the be all and end all), negative narcissism (I am terrible, blameworthy, a nuisance, the Fault.). Too much me and too much me. There must be a middle ground. The trick is in finding it.


Saturday, May 28, 2011

Cancer vs pain

I had a conversation, years ago, with someone about a friend of theirs who had gone through 13 operations for cancer. "!3!" I said, amazed. "How can anyone go through all that. I can't imagine."

My friend looked at me increduously. "You have had 12 brain surgeries for the pain." I shook my head. "No. that's not the same. Not the same at all. Your poor friend had cancer."

Is it the same: 12 operations to try and solve my pain, 13 to remove cancer? No. I did not see it. I 'only' have pain. She had cancer. Cancer can kill, pain can only...well..., kill me, even if it is only in the spiritual and life changing, altering, closing off of alternatives, choices, and abilities kind of way.

People know cancer. Chronic pain is, for the most part, unknown. And misunderstood/not understood.

I have a tiny basal cell skin cancer. Caught quickly, it is as close to nothing as anything associated with the word cancer can be. I hurt my thumb, it goes away. Both nothing much in the scheme of things.

I hurt my thumb. It sets off a bodywide pain that does not go away, that gets worse, that can keep me bedridden. This is RSD (CRPS). I get a chasm making, face splitting pain that lasts for only a few seconds. Within 2 weeks it disables me, coming on its own, triggered by any touch, and accompanied by a constant choking murderous pain. It is trigeminal neuralgia. I am diagnosed with an organ, blood, or bone cancer. It may be killing me, literally.

The word goes out for the latter. Jane has cancer. Family comes together, neighbors, local church groups offer to make meals, help take care of you. You are embraced. The cancer community, through wellness centers and other support groups, is there for you.

Jane has constant intractable pain. The word does not go out. Family, friends, neighbors, get tired of Jane refusing to go places. "She says she can't, she has pain." It is tiresome.

A number of years ago I was at lunch with my mother and sister, Sue (pseudonym). There was a decorative lit candle in the middle of the table. The movement and glow of the flame was excruciating to my eye. Nevertheless I was afraid to blow it out, afraid of the response I would get. The pain decided for me. "I need to blow that out." I said. As I did Sue gave me a look, a 'geesh' body gesture. "The light and flickering hurts my eye." "It's perfectly fine and looks nice. I'm going to have the waitress re light it." "Please don't do that" I said. "You just want to make a fuss and get attention." The waitress was summoned and lit the candle again as requested. A few minutes later Sue excused herself from the table. Immediately I blew out the light again. (My mother was quiet throughout not wanting to get involved.) The minute my sister came back to the table she looked at the candle and waved the waitress over again. For once I stood my ground, the pain taking the lead. "Thank you but we do not want to have that relit. In fact, wy don't you remove it from the table?" My sister fumed, the conversation stilted, the atmosphere blackened. What had I done wrong? Nothing. I merely asked that my pain be respected and honored.

My other sister developed cancer. (I was not notified until she was nearing the end of the disease.) Friends took care of her, my brother made sure I knew she stayed at his home while she underwent chemotherapy. The family embraced her.

I was denied, my pain ignored and disbelieved, 12 brain surgeries looked at as 'she must have talked them into it'. June's (pseudonym) cancer was accepted, her needs met as soon and as often as possible.

I was hurt by all this but that is not the point of this post. (It had started out in a different direction but as often happens, somehow it went in a completely new direction.) The difference is: cancer is believed. We hear about it all the time. I think most of us also fear it, and rightfully so. It is a clarion call.

Pain goes away. That is what most of us know from our own experience with it. A pain that continues, and continues, and continues still. It is also a taker of life, in a different way, and people also fear that. Cancer is real. We cannot turn our heads away or bury them in the sand.

We need to do that when it comes to pain. How can one live, exist, if the pain never goes away, when our bodies become the torturer? The only way to ignore that question is to pretend chronic intractable pain does not exist, that we who have it are poseurs, malingerers, liars.

The time has come. We raise money for cancer, all cancer, because at the end of the day cancer is cancer. We also raise money and awareness for pain but mostly for one pain disorder at a time. Arthritis, Lupus, MS, RSD even, now that that is becoming more accepted as a 'real' disease: they each have their own fundraisers. That cannot be done with chronic pain as a whole because each entity is a completely different disorder. None of it comes under one umbrella, except the one called chronic intractable pain. .

Please, do not ignore us or dismiss us. You would not do it if I had cancer. Pain is every bit just as real.

Thursday, May 26, 2011

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.


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.

Wednesday, May 25, 2011

Does accepting the label of disabled mean giving up hope?

(I wrote this at midnight a few minutes after finishing the last post.)

I ended my last post a few sentences early, wanting to end on a happier note. I had added two additional sentences that changed it from positive, or at least hopeful, to something more negative. Then I reread it and thought you cannot add those sentences. If you do you you negate hope but hope, or rather the question of hope is the point of this one.

What happens when you say "Okay. I am disabled?" If you say that, if you accept it, do you deny hope?

All the doctors have told me "I am sorry there is nothing else we can offer you." If I believe that, if I take those words to heart, hope becomes medically lost. If I take those words to heart while saying I am disabled, is it the refusal to say those words, to accept that term in applying it to myself, that keeps the (false) hope alive? And is it the falsity of that hope that keeps me from acknowledging my disability? And keeps me from accepting the falsehood of hope?

My family has treated me very poorly during all this. (It started way before that however). I hear and read people say about their dysfunctional families "No matter how estranged we are, no matter how dysfunctional when one of us is in need we come together for that person." That was never the case for me. The struggle to stay afloat, emotionally as well to meet the demands of facing more surgery, more meds, more side effects, and to do it alone could only be done if I was 'able', an irony since the fight was against my disabler - the pain. I needed to ignore, to not accept that I have a disability.

Wait a minute. Maybe right there, as I wrote that sentence, is where the difference comes in. I am not disabled, I have a disability. The word choice allows for the wiggle room. I am not the disability, I merely have one, which means that I also have ability. Hmm, is it the lateness of the day that has me meandering, maybe to an important AHA! moment?

I have never denied my abilities. It is those abilities that have made it harder to accept my limitations, my disability. "Of course I can do that." I say, offering for instance, to make phone calls, get people to sign petitions, write emails, knowing that I have offered to do something that will make me reach for the codeine pills, will hurt me, and hurt me bad, but if I say "No." I feel guilty. If I say "No." I may have to add, "I can't. The eye pain will not let me do that." If I say "No." I am saying 'my disability will not let me do that'.

I love words but when it comes to my own life distinction of meaning is harder to see. I am not sure if the acknowledgement of my abilities overrides the meaning of disability. My abilities let me do a lot of things. I can think, hear, see, speak, write, do the tasks of living.
It is the disability though that always has priority. Pain takes precedence, nature made it so.

So what do I do? Do I continue fighting the same fight?

I love the saying "crazy is doing the same thing over and over again and expecting a different result." Sometimes the different outcome does happen. Hope springs eternal. Disability ends, ability takes over. Until then seeing myself as Carol, who has a disability but is not her disability, may be trying to teach an old dog new tricks but old dogs can and do learn.

Maybe me too.
I just read a comment from a reader about the difference between having a disability and being disabled. She makes a great point, for the most part when the question is asked on a form it is usually to find out if you can pay, rarely do they even need to know what your job is so you can pretty much write anything. That thought makes me smile. Maybe the old dog was just taught a new trick.

Monday, May 23, 2011

Description that evades me.

I have brown hair and brown eyes. I am short and a little overweight. I like dogs even though I have cats. My political beliefs lean towards liberal. I am Caucasian. I am a US citizen, born in Pennsylvania. I rarely get dressed up and hate wearing heels. I could go on but you have a fair idea of me from that description. Am I leaving anything out?

Oh. Yes. The dreaded "D" word. The word I try never to use. I am disabled. Why is that so hard for me to include? (As I write it my breath catches in my throat, I swallow, hard, my stomach clenches up.)

I hesitate whenever I fill out a form, any form, even medical. All the answers come easily: phone number, address, name, date of birth. Then the one that stumps me. 'Occupation' Oh no. I have to write disabled. There is no choice with the answer, but it is only very recently that I stopped putting the parenthetical extension,(at present).

An earlier post refers to the difficulty I have when talking about the pain. My fingers start to hesitate at the keys even as I write the words here.

Pain caused very weird things to happen. Brain surgery was for someone with tumors or something horrendous. It was an astonishment to me that 'only' pain brought the neurosurgeon into my hospital room and into my brain. Disabled also has its very specific niche, one that does not include the foreign invader into my life called trigeminal neuralgia, the face the only part of my body involved. Disabled means the body.

I discriminate not between mind and body but rather above the neck and below the neck. My disability does not stop me from walking, moving, or physically being able to do the things a body needs to do. It never has, not in the sense of inability to use my limbs and get around. My body always was ready to go. It was the face that said "No. there is a breeze, or cold, or wind, or rain, or, or, or." I think being 'able', absent the pain, has always made it harder to accept my inability to work and be a real participant in life.

I do not accept the pain. Not a day has gone by, not one in the 30 years and counting (except for the wonderful, fantastic 3 months when the first surgery worked and the pain was gone) where I have not awakened and expected that today is the day. No more pain, I can look for work, I can do anything. No, strike that. It is the day I can do everything.

Instead each day is another day I am disabled. Now that I have written it here maybe it will be easier to write it elsewhere.

Saturday, May 21, 2011

Fear and pain stop me. I am a coward.

This 'tweet' spoke volumes to me: "Nobody made a greater mistake than he who did nothing because he could only do a little." Edmund Burke (Tweeted by Mayor Corey Booker this a.m.)

I often find myself saying that. I can't do what I want, I can only do a little so the heck with it.

I also tell myself the opposite: If I go forward, little by little, what if I am successful, I will not be able to do what needs to be done with the success.

I have started making greeting cards. I write text and do the illustrations. Because of the eye and intense concentration; and looking to do them right, it may take a few days to get one done the way I want. Then it takes more time to scan them into my computer and put them into a card format. Bottom line: the fun and joy of the doing turns into pain.

I enjoy the doing and even more so the having done. I get good reactions. Most are humorous. I love when someone opens the inside and guffaws. There is no more real response than that.

I want to start an etsy store, an online site for handmade crafts, etc. but I am afraid. It is not the eye time involved in getting it set up, rather it is the worry. What if I am successful? What if there are a lot of orders? How would I manage getting them sent out in a timely manner? My eye cannot handle that. Then what do I do? So my choice has been not to do.

Burke is right. You have to at least try. Doing nothing because I can only do a little is not only a mistake. It is the coward's way out.

Thursday, May 19, 2011

How far would you go for a possible cure? (part 2)

I just realized that the last implant was put in 20 years ago. It seems like yesterday. It is 100% experimental: I am the 12th or 13th person in the world to have it placed where it is placed.

I 'only' have the eye usage and movement pain. It is what keeps me disabled. When surgeons would ask me "If I could only try and help one of the pains which would it be, the touch induced, spontaneous and constant pain or the eye pain? My answer never waivered. "The eye pain." To a one they would say "I am sorry I can't help you with that."

The last implant was a last ditch effort to try and help me. I lost the first and second dorsal column implants, placed in the back of my neck and upper spine, to infections. The first one worked. It took away about 85% of the pain. The eye pain lingered, but the touch, spontaneous, and constant pain was gone. The second implant, in the same place, never worked. Dr. Barolat, my neurosurgeon, told me there was nothing else he could do. "You have too much scar tissue there."

It is a funny thing about pain. Because the first one worked I fought against it being removed despite the infection.

I ran it 100% of the time at 100% of the stimulation. The battery lasted only 7 months because of my usage. And then, to add insult to injury, I went to take off my sweater one day, pulling it over my head because I could, because the touch pain was gone. Somehow in doing so I moved the wire that ran from the battery to the electrodes. Quickly all benefits stopped.

The infection was bad. I was in the hospital, the residents wanting me to have the entire system removed as soon as possible. I fought them, again and again, day after day, week after week. Dr. Barolat went along with me. I felt he was waiting for me to accept it had to be removed. I could not. It stopped my pain. It was not working now or helping but that did not matter. It had stopped my pain. You cannot let them remove a vestige of hope. Even when the risk was meningitis or worse.

Finally Dr. Barolat insisted. "It must come out."

The second implant was put in the same area of my neck. It never worked. It also became infected. Even though it helped not at all it was the same as the first so it came with hope. Same scenario "No!. You cannot take it out!" About three weeks later I was told I had no choice. Back again to the O.R. to have it removed.

Dr. Barolat told me he could not put anything back into the same area. There was too much scar tissue. "I am sorry but there is nothing else I can offer you." No. I was not going to accept that.

Thankfully, being the person and doctor he is, neither was he. One day he said "I have an idea. What if I was to attach the computer chip to the outside covering of your brain, to stimulate the sensory cortex? It is rarely done, about 12 in the world and usually for pain that comes from a different part of the brain but if you are willing to try I'm willing to do it."

I still had all the tn pain. It was fingers crossed, not only if it would work, but might it cause me to have seizures or other potential bad side effects?

It did not. Nevertheless, the fear that it would was there. Even when I had the battery changed, a few weeks ago, 20 years after the implant was placed, I worried.

The battery had been running very low for quite a while. Would putting in a strong new battery set off seizures? I would be lying if I told you I was not petrified of that possibility. It was a waste of fear. I am fine. It has not 'hit' yet, at least not to the degree that I am noticing a difference. I would never have it removed though, just in case.

An experimental surgery. How far would I go to get relief? To have a life back.

The other night the eye pain was very bad. It would not simmer down, much less stop. Oh man, it never changes and there is nothing anyone will do for me anyway. The next thought caught me offguard. Well what if someone came along with another idea, another experiment? Would you do it? Oh, no. Never, I'm too old to go through all this again. That was the first answer. The next surprised me. Why of course I would. How could I refuse anything? You're either okay with the pain or you're not and I for sure am not. I need it to stop. Logic dictates "No." The pain, emotion and fear of having the pain forever forces a "Yes."

I write in my book and in support groups: Never let the pain make your decisions. I have and it has cost me, greatly.

And yet.

Pain speaks for itself, louder sometimes than any other internal or external voice. Wanting pain to stop is a major biological necessity. Chronic pain is a different animal then acute pain. It's voice needs to be softened so thought and reason rule the day. And any trips you agree to take to the O.R.

Wednesday, May 18, 2011

How do you know the wind blows?

I was watching an episode of House. He believed a patient had a growth so immensely tiny that it did not show up on any tests. House wanted his team to remove the unseen growth. (Let's act as though the show makes sense.) Dr. Foreman, his associate, responded "How can we remove something that we don't know is there and is so small it cannot be seen?" House replies "How do you know the wind is real?" Foreman: "You see the effects of it blowing."

I immediately thought of the analogy to those of us who live with chronic pain.

"Doctor, I fell and hurt my leg." "I saw the x-ray, the bone is broken." "Doctor, I am always thirsty and always having to urinate." "I saw the test results, you have diabetes."


"Doctor, I have pain all the time in my leg and arms." "Your tests show nothing wrong." "Doctor, I have horrendous facial pain. It is there all the time plus it comes on for no reason at all." "I see nothing when I examine you. All your tests are normal."

Lupus, multiple sclerosis, rheumatoid arthritis, among others, do have tests available that will provide objective results. Other pain disorders, like fibromyalgia, or RSD (CRPS) do not. (There is some controversy over whether a fibromyalgia body point tenderness scale is valid or not.)

I do not blame the doctors, at least for the first reaction of 'I cannot help what I do not see is there.' I do blame them when they ignore the effects of the invisible complaint.

People with RSD (CRPS) and fibromyalgia may limp, or have fatigue to a higher level than most, they cannot do what they used to do. Those are symptoms.

I could not touch or tolerate any touch to the area of my face involved in the pain. I flinched when there was any possibility of touch to the pained area. Unable to wash, dirt built up around the eye and on the forehead. I had a dirty orangish brown 1/2 inch mass of soap residue and environmental dirt. (The latter not subjective but the result of my 'subjective' complaint that touch was inordinately painful.)

Yes, sometimes a limp can be faked. Sometimes, a person is dirty. Sometimes fatigue is the result of depression or burning the candles at both ends. But sometimes the limp is protecting the leg from pain, the dirt crusting from being unable to touch, the fatigue because pain refuses to allow for rest or sleep.

How do you know the pain is there? How do you know the wind blows? Look at the effects.

Monday, May 16, 2011

What is a doctor's truth, what is a patient's?

Years ago, I heard a doctor speaking to a support group. He was discussing neurological issues for those of us with trigeminal neuralgia. In passing, he mentioned x-rays and how people sometimes worry about them and their possible association with certain health risks. He reassured us that getting a few x-rays during our lifetime was not something about which we should be worried.

After the meeting I approached him. "About x-ray risks" I started to say. He immediately interrupted me. "As I said there is no reason to be worried about a few x-rays over your lifetime causing cancer or other medical problems." I looked at him. "Well, I have had probably 500 x-rays." His eyebrows rose as his mouth formed an O shape. "500?" I nodded. "Yes. I've had arteriograms and angiograms, 2 rhizolysis procedures (a closed surgical treatment that relies on repeated x-rays to determine where the needle is placed.) venograms, and cat scans and." He interrupted me again. "That is a lot of x-rays." Then he turned away and started talking with someone else. Did he not want to listen or not want to answer?

It is not a worry I really have, maybe I should but in the scheme of things it would be very low down on my list.

It does make me think of the times doctors tend to pooh-pooh patients when they complain of pain. We are asked "Is it really that bad?" Maybe if we thought about it once asked, we would say, "Oh, you know what, now that you ask, nah, it is not that bad. Never mind."

Sometimes they do not think to ask the follow-up questions.

When I was a teenager my little finger on my left hand really bothered me. It was very bent and had a big red bump towards the side of the joint. Any time I put pressure on it, for instance when I was writing, it would be very, very unpleasant.

Dr. Horvath: It hurts when you write?
Me: Yes, a lot.
Dr. Horvath: Which hand do you write with?
Me: I'm right-handed.

He gave me a whithering look, as though I was the stupidest person on the planet. In those days I had not yet learned to be forceful with a doctor. (He was a doctor, I was merely patient.) "Then it does not bother you when you write." Looked at in his context, I am right handed, it is the left sided finger, it makes sense. What a stupid person I was. My complaint had to be nothing more than made up or an imaginary pain. Maybe typical teenage angst masquerading as finger pain.

I left his office feeling the fool. It never occurred to me to say, 'wait a minute, when I write I hold my left hand against the desk in such a way that I put pressure on that finger.' Of course the answer is the old joke - then don't do that - but I did not think of it. I only knew I had terrible discomfort with a finger that had a big bump in the joint and I wanted help for it.

All he had needed to do was follow up. "Then how is it that it is your left finger that hurts when you write?"

I had a neurologist write in my chart "There are days like today when I believe in her pain." I saw the chart years later: rarely does a patient get an opportunity to know what they have written in this 'for eyes of all but the patient' paperwork. He had seen the surgical reports that proved the diagnosis of trigeminal neuralgia. He was aware of the reason I had my trigeminal neuralgia, the birth defect, and yet he did not want to accept my reports of pain. Had he told me this outright it could have saved a lot of aggravation for both of us. I would have stopped being his patient and he did not have to have a patient he obviously did not trust.

500 x-rays? Disabling pain? It can be true. Don't surmise. Ask me and then we will both be on the same page.

Saturday, May 14, 2011

Where does the pain go (when you know it is still there)?

Sometimes when I wake the eye is hurting already, the lid swollen, sore and on the verge of pain. Other times it is okay until I start to read or use the computer. Either way I have a choice, or so it seems. Read more, write more, do almost anything that requires the eye to move.

I am bored, I want to write a post or answer email, I want to check and see if you have been here, maybe even sending me a comment.

I do whatever the choice is. The discomfort is there, on the periphery. "Just a few more minutes" I say to myself or outloud. "Just a little bit more."

I go on, the pain builds. Just another paragraph, just one more email, just one more sentence. Then I promise myself I will stop.

Instead I persevere. The pain is there but as my interest builds in what I am doing it ebbs and flows, in my consciousness, outside of my attention, in and out it goes.

It is a strange thing. Sometimes I feel the pain but as I become more and more immersed in what I am doing I become unaware of it. Finally I finish what I am doing. The pain is overwhelming, to the point of nausea.

How is it that the knowledge of it got away from me, that the feeling was bandaged by a high level of concentration? How is it that it is really there, that the stopping of what I am doing acts as the fast ripping off of an adhesive covering? How is it that I am now in exquisite pain, pain that seemed not to be there not more than a second or two ago? (And what an oxymoron - exqusite and pain together.)

It is said you do not remember pain. Women who have children tell me it is a lie that you forget the pain of childbirth.

I no longer have the horrendous face splitting, knife cutting pain that is the 'tic' of trigeminal neuralgia. I could remember it but the idea of even trying to induces a panic in me. No. No. my mind screams at me. Don't you dare go there! I obey, knowing that remembering is the last thing I want to do. Why invite in a pain that is gone, even if the invitation is only to memory? I do not want to go there. I do not need to go there.

But the opposite seems to be the case when it comes to, I cannot say not feeling the pain, but maybe not acknowledging it. The mind lets you be free for a while as you do what you normally cannot. Reading too long, talking to a few people at once and watching them with only the movement of your eyes, writing a blog post. The pain is there, and growing, whether I am aware of it or not. Maybe the unconscious protects me from it as the conscious mind proceeds, at least for longer than is good for me, to let me do what I want.

Maybe it is like hypnosis.

I am a hypnotherapist. When I work with clients I describe hypnosis as being a state where your relaxation level allows the conscious mind to step aside while I talk to your unconscious mind. Usually trance state takes you to level of inattention, like when you do not know how you got from point A to point B while you are driving and then you suddenly became aware. Your conscious mind has decided it is time to become attentive or it sees the redlight or stop sign.

Maybe the pain is the red light. Maybe at some point the pain becomes so in need of attention that it can no longer stay hidden in the background.

I do not know, of course. One of the biggest issues for me, in dealing with the pain, heck, in dealing with life, is finding explanations, or coming up with a theory, any theory that might explain how, why?

For tonight this one will have to do.

Friday, May 13, 2011

Blogger has had some problems this morning

To my readers, Blogger had some sort of problem where the last posts written since Wednesday a.m.have been removed from, evidently, all their blogs. I apologize that the last one about sad and S.A.D. is not here but hope it will be returned sometime today.

Thursday, May 12, 2011

I'm sad from S.A.D.

Seasonal affective disorder:"Seasonal affective disorder (SAD) is a type of depression that is tied to seasons of the year. Most people with SAD are depressed only during the late fall and winter (sometimes called the "winter blues") and not during the spring or summer. A small number, however, are depressed only during the late spring and summer." *

I do not really have it, at least not to the level required for a psychiatric diagnosis. It is usually associated with the reduced number of sunlight hours. I do not see an explanation for the folks who have it in summer and spring.

I know my reason.

The spring and summer have longer days. I wake and the sunlight streams through the windows. It is so bright the curtains are no foil for it.

My first thought: what a gorgeous day. My second thought: the bright light hurts my eye already and I have yet to do anything. The third thought: what am I going to do with all the hours in this day?

I have choir rehearsal tonight. Yay! And yet, it is a pain causing activity. I will be with people and a part of something. I will also need to take codeine and fight the effects of the pill and the pain. Enjoyment and anticipation become pain and worry.

Sometimes I think I need to join some kind of a group. I do not have folks here that I can call beforehand or on a whim and say "Let's go out to the store or for coffee." Most people work. Those who do not seem to have full schedules. I want a full schedule. I also want to have Donald Trump's money and a house made of gold.

Maybe it is age or fatigue. I find the fear of the pain getting worse, keeping me tethered to my house.

It is an amazing thing. When the pain was at its worse, when the idea of a breeze or a touch setting off the pain, I feel like I did more. Memory is funny. Maybe I did. No, I know I did but doing so involved being on high levels of narcotics: feeling tired, fuzzy, dry mouthed all day long.

The pain, now only in and around my eye, has me fighting against taking the meds - struggling with the thought of taking even one - much more than I think I ever did. I do not know why. All along I have felt brain surgery is for something horrendous, like cancer, not 'just' for pain. Despite the 12 surgeries a part of me still feels that way. I am the queen of denial.

Narcotics, even the lowest level is for something gigundous, not 'just' because I used my eye. And yet, there it is. It is the only thing to be done if I want to do something, something I am not really sure helps, other than to give me a false sense of control.

So, I sit here in my house. I keep the computer on, sometimes stay sitting in front of it but fighting to keep from actively using it continuously.

I look at the clock. Let's see, it is 2:00. Only 6 hours until dusk: and I cannot be out then because I cannot drive at night.

Today Rachel is picking me up to go to choir. 5 hours until I need to get ready. Maybe I could go out. Go to the store for something. No. That will make the pain worse. It is too sunny and if I look at a lot of items or go up and down the aisles I will need to take a pill. I am already annoyed at myself and the pain because I had to take a codeine this morning. Choir will mean having to take much more than I want to for one day.

So I am sad: sad that pain has robbed me of so much, just because the day requires me to use my eyes, even when I am doing nothing. S.A.D. because the beautiful day, the wonderful season, increases my sense of loss.

(I like to try and end even depressing posts or stories in 'real life' with a smile or joke. It was hard to find one for this post but then it came to me. Not a big one. For some reason the idea of Beauty and the beast occurred to me. Spring the beauty, pain the beast. It worked out in the story. Maybe there is a way for spring and I to also become friends and partners.


Wednesday, May 11, 2011

Put your shoulders down

A few weeks ago I had to get an x-ray. The technician instructed me to "Put your shoulders down." I tried. No good. "Can you please lower your shoulders?" I tried again. Nothing. The film was going to be as good as it could get with my shoulders raised high and squared.

When I awaken my whole body is tight. My knees lock, my shoulders and back are tight with tension. I try to do a whole body relaxation tightening everything. Hold it. Hold it. I instruct myself. Tighter, tighter, tighter still. Keep going. My teeth clench, gritting with exertion. Tighter, Just when you think you cannot hold it any longer you can hold it even tighter still. Then, as I learned to do, and as I have taught others to do, I say to myself Now, as fast as you can, let it go. I release my body but the muscles do not want to let go. Within a second or two every ounce of tightness has returned.

When you do not say "Ouch" outloud, when you try and hide your pain, emotional and physical, it has to have an outlet somewhere. For me it is all of my body, the enamel on my teeth worn through in places from the gritting - awake and asleep. My breathing is off because I am so tight in my chest. At times I literally forget to breathe, a habit held over from when I had my first chronic pain issue.

When I was 19, while driving, my left thigh went into a severe cramp. I pulled over as I waited for it to subside.

The rest of the day was painfree: I thought I was fine. My friend and I arrived at the hotel and quickly fell into bed and asleep. The next morning my traveling companion asked how I had slept. "Fine. Thanks." "No, you didn't. You woke me with yells of pain. You kept crying out "My leg, my leg hurts."

Soon the whole leg was in pain. I had trouble walking and took to using crutches. Despite the obvious I insisted I was okay. Inside of myself I was not. I learned as a child not to admit to pain. I was not going to do it now. Instead, as I tried to maneuver upstairs or just down the hall, I held in the sounds and with it my breath. After all, sounds are made on the whoosh of an exhale. Don't exhale = no pain noise.

It turned out I had developed a spontaneous stoppage in one of my knee vessels. It started out of the blue and stopped the same way but some of the pain continued. Up the stairs, for instance, stop breathing. Try to run, hold your breath. No pain, no gain? No, no sound, no pain.

The habit stayed with me. Once the pain of the trigeminal neuralgia started, my body, especially my shoulders, took the brunt of the 'hold in the pain' behavior. Higher and higher, tighter and tighter I held my shoulders. Fence in that pain. Keep it quiet. Don't let it breathe.

I am trying to teach myself to breathe no matter if there is pain or not. The lesson is so well learnt that I forget to breathe during a walk or even talking. My brother, many years ago, told me he would get me breathing lessons for a Christmas present. Maybe that is not such a bad idea.

Maybe the better idea is learning to let go. Accepting that it is okay to let the pain out in words and sounds. Maybe, finally, it is time to give my shoulders, body, and mind a rest from all the holding it in.

Monday, May 9, 2011

Mathematics and my implant and hope

I have a brain stimulator implant.

The main chip is attached to the covering of my brain, Wires are connected from a battery in my chest up to the chip. The battery was dying and I knew I had to get a new one. I put it off feeling that I was getting very little, if any, benefit. The change is simple. The battery sits directly under the skin. It is mainly a matter of pulling out the old and putting a new one in the pocket that remains.

The implant works by giving off a stimulation that hopefully interferes or impedes the pain signals that the brain and nerves give off. (This is not the best explanation but it is ok for now.)

The stimulation can be changed in a number of ways: for instance how often it is on, how strong the level of stimulation, among many other options. I just tried to figure out the possible number of combinations and permutations but I did not have a clue how to do it (even after googling and clicking a whole bunch of math sites.) I have no doubt the ultimate number of possibilities are easily in the thousands.

The problem with that is the ultimate question. When do you give up hope? Or, do you ever give up hope?

I have trouble accepting the pain, accepting tomorrow will be the same as today. I know it is healthier to accept what is than to not. Accept the pain, the level of disability, the effect on my life. But, but what if just when I say "Uncle.", when I give up and accept, maybe the next combination will be the one.

Are hope and acceptance mutually exclusive? I do not know. I do know I just changed some of the options again last night and am breathlessly waiting for it to hit and stop the pain.

Sunday, May 8, 2011

Mother's day. Seeing it in a new way.

The minister was talking about Mother's Day. If you have a mother, he invoked, or someone, a surrogate, who took care of you like a mother, think about them and how they were there for you.

My mother was not there for me, or for us. She had social problems as well as mental health issues making it difficult for her to be a mother.

I have no memory of my childhood. I remember from when I was a little older, maybe 10 or 12. I recall her baking cakes and making dinners of fish sticks and peas. I remember going to dog shows with her. Both parents came to school open house nights and chorus shows. As I got older she became more 'unable', staying in bed, sitting in dark corners, yelling, sometimes throwing things. Her depression-like behavior made it impossible for her to mother.

She died in 1996. When I think about her I think of what she could have done had she not been in the marriage she was in, had she not been depressed, and other 'had she nots'. She was creative, intelligent with a good sense of humor, but she could not or would not let us and the world see that part of her.

She said mean things to me after the pain started. When I was at her house when the pain would get very bad I would say "My face really hurts." She would respond "Well, it's killing me."

She could barely look at me after the paralysis. Both parents were at the hospital, but a day after the surgery my father had to leave. My mother was to stay with me for a few more days. I ultimately asked her to leave. All she did was sit in a chair in the corner of my room with her sunglasses on in almost complete silence.

One day she asked me to help her with her make-up. I told her to pull in her cheeks so I could find her cheekbones. As I told her I demonstrated, sucking in my cheeks. She copied me and in doing so also imitated the paralysis. I was very hurt and upset. It took a long time to accept that this behavior was a part of her sickness.

Today though, the minister's words struck a chord in me. It caused me to think about her in a different way. I am not sure why today rather than other days or other years, but something was triggered.

My mother's mother and father died when she was very little. The aunt and uncle who took her in were supposedly very mean to her. I do not know for sure if that was true. (Until this second it never occurred to me if they were even alive or dead when I was here in the world.) How can someone mother who was never mothered themselves? I know people can. My sisters and brother, whatever the problems we have, have children who love them completely. They had to have done something right. They were able to find a way to be a good and caring mom. And I am very proud of them for that.

Today, for me, a breakthrough, a new understanding.

Nothing can take the hurt out of my heart for having never been mothered (there was neither a surrogate nor sister who could or would fill the vacuum) but at least now I can look at it in a very different and more caring way. For that I am greatful.

Friday, May 6, 2011

How far would you go for a possible cure?

Yesterday was a really bad day.

I wrote here and elsewhere and ignored the eye pain at every new keystroke. By the time the pain took over so I had no choice but to stop, it was too late. An hour later, two hours later, three hours later, the pain continued. I did not know what to do. I stayed in bed trying not to get up to do anything because as soon as I turned or stood up or, heaven forbid, looked in the fridge or elsewhere, the pain increased.

It's the eye, dammit! Why can't they do something for this!! I know they can. I just know they can.Same thought, no matter how many times I think it and hear their answer, "No. We cannot fix it. We do not know why you still have it and we do not have a clue as how to help you. I am very sorry."

Well, I know how to fix it.

At first I thought about having them take it out. It is legally blind, from lazy eye as a child. It would not be like removing an eye that I relied upon for vision. Remove the source of the pain you remove the pain. I talked to an eye doctor about it, even wrote to Dr. Schatz, the neuroopthalmologist who saw me at the beginning but with whom I had not spoken in years. "Carol, it would be unethical to remove an eye that sees, no matter how limited the sight in the eye." That was it. Any other doc I talked to said he was right. All assured me no hospital would ever let them do it even if I found a doc who would.

I emailed a reknowned medical ethicist. I described the situation: I had all possible procedures and treatments. Removing the eye was a last ditch effort to get me "able". To my amazement he replied almost immediately. Based on what I had written he said "I would testify on your behalf if you try to go ahead with this."

Thinking about it I realized I had glossed over a major issue. The pain is from movement of the eye. If you put in an artificial eye it would have to be connected to the muscles that seemed to be the cause of the pain in the first place. No. Removing the eye does not make sense.

So I developed another theory.

What if the eye were blinded and paralyzed? Granted one effect would be the same: loss of vision in that eye.

My ophthalmologist is a good guy. If what I suggest makes sense and is logical he will go along with me.

We tried a couple of times. A shot of botox (yep, what they use to reduce wrinkles) into the back of the eye. It paralyzed within a few days but still retained sight so I had severe double vision. The only answer - sew it closed. Funny how it was a disgusting thing to do when necessary for the health of the eye. When voluntary and a possible answer to the pain, then it becomes acceptable. It was also temporary. The botox wore off in about 3 months. Then he would open the eye. Each time somehow or other it refused to remain closed enough to mimic blindness. There was no way to know if my idea would work.

After 3 or 4 attempts we gave up on it as impractical. Plus, he was not sure he would be willing to do it permanently, because it is a healthy eye.

Yesterday I found myself thinking again - let's paralyze and blind it. Maybe he would agree this time.

Then I thought: what am I willing to do to stop this pain? How far would I go? I hate the disfigurement from the medical malpractice. Maybe because it is already there I was (am?) willing to do something that would disfigure me further. Is there a point beyond which I would not go if someone said 'do this and it will stop the pain. You could work, be out in the world. have a real life.'

I do not know. Yesterday I would have accepted almost anything. Today when I am being smarter, stopping my eye usage before it gets out of hand, maybe I would still say "Yes. Yes. Whatever it is, if it stops the pain. I am ready."

Thursday, May 5, 2011

At what point is writing cathartic? Maybe now, maybe never?

I just went to my website. One of the members posted a message. At the end of it she directed a question to me. "How are you feeling?"

I never like to answer the question. It is not the issue I have written about here, not liking to talk about the pain. It is a feeling of guilt.

My pain is not as bad as most of theirs. Many of the members have bodywide pain disorders. The pain they have is so bad there are more than a few days when they cannot tie their shoes or even get out of bed.

My pain is only in my eye. The answer to "How am I feeling?" is almost always "Fine.", unless I use my eye.

Ask me after I have been on the computer and writing unceasingly - when the pain is so bad I cannot use my eyes to answer the question. "I am doing horribly." But, I know even if I have let it get out of control, even if it may take hours before it subsides, my body will let me do anything and usually everything I want and need it to do. I may take to my bed or the sofa, but it is only because then I will not use the eye.

Writing this is becoming an eye pain problem because I wanted to write it as soon as I saw the posting on the site.

I do not know how to answer it. The truth is I am not in the kind of pain most of them are. They are so kind. They want to make sure I am doing well. Is my pain not as concerning, is not as disabling in its own way because it is not the kind of pain they are in? I know they would emphatically say "No."

I wonder even about posting this to the site. A part of me says I should. The other part says, will it make them feel even worse if I told them this?

Pain is pain is pain but a sprained ankle is not RSD. An eye pain that resolves quickly is not lupus pain or fibromyalgia.

Maybe it comes down to the same problem I always have. Is it merely a rationalization for my not wanting to talk about the pain, to admit to it, to accept it as a part of me?

I was and am asked by many people if writing my book was cathartic. That is the stereotype. Someone writes about a bad experience and it lets them get out the pain. It was not for me. I am not sure why not. This blog, on the other hand, is causing me to look at things I am not sure I want to see. At some point I have to be able to write 'disabled' on forms where it asks for occupation without writing or thinking (at present).

Maybe I titled this the way I did, to force the issue. 30 years, and counting, is a long time to be in pain. My life is not going to magically go back to when I was 26 and sitting in my living room in NYC. Back to the moment before the first pain hit and took everything from me. Writing that sentence makes me want to cry. I suppose that is a start.

Wednesday, May 4, 2011

The other question I do not like to answer.

I did the blogradio interview tonight. Candy, the host, was very nice; and I think it went okay. She asked about me the pain, to describe it. I do not like talking about it but I did. (No point or why accept the invitation in the first place?) She asked me about family support. I definitely do not like talking about that.

The word 'should'. "Obligation, duty, or correctness. Indicating a desirable or expected state."

Family 'should' be there for you. Many people see that is a major duty of a family, no matter how poorly you get along. At the end of the day, I hear this so often, from others about their families, when someone is in trouble, no matter what the relationship, or lack of one, we are all there for each other.

I think Candy was surprised with my answer. No, they were not there for me. She did not ask me to elaborate. It was not the place even if I had wanted to talk more about it.

I have to admit I get tired of mother's day and father's day and advertisements with everyone loving up each other. It hurts me when people ask "Who is your next of kin?" There is no 'kin', even though the ones still alive live only a few minutes away.

The first time I was admitted to the hospital for the pain I was in for almost two months and had the first of my brain surgeries. Dr. Schatz, the admitting doctor, had written in the chart "Encourage her family to visit more." My father came almost every day. (As would become a habit, my mother could not come because she was in the hospital (elsewhere). This happened for over half of my hospital stays.) My 3 siblings, never.

I went to recuperate, at least until I could get back to my apartment in NYC, at my parents' house. My mother was still in the hospital. My one sister and her husband were at the house helping my father.

I developed a high fever and had to go to the emergency room. My sister and her husband took me. As we left the house she made sure I understood why they, instead of my father, were taking me. "I want you to know we're doing this for daddy." She wanted it to be perfectly understood it had nothing to do with helping me.

I do not want to go into chapter and verse of the things they have done to me or the way I have been treated. A lot of it is Freudian. I am 58 and the two remaining siblings are in their 60's, old enough to put freudian hurts behind us.

I am working on not stammering when I have to say I cannot do something because of the pain. I have to learn to do the same when it comes to explaining why the answer is "No." when the issue of family support comes up.

Tuesday, May 3, 2011

I'm gonna be on the radio ((*_*))

Tomorrow night from 6 -7 PST I will be on a blogradio interview show hosted by Candy O'Donnell. I hope you can come join us.

Innocent until proven guilty?

Faking It: Why Nearly 1 in 4 Adults Who Seek Treatment Don't Have ADHD

I just saw this article this morning. It captured my attention because all you need do is change the term ADHD to chronic pain.

It is not necessarily that the statistics would be borne for those with CIP diagnosis(ses) but that this is the argument put forward about treating those in chronic pain with opiate medication.

There will always be 'fakers', especially when it comes to medical disorders where the treatment is one desired by those who think it is 'fun' or necessary for their success to be 'high' or 'stimulated' artificially.

The regulators and naysayers say that those in real need need to be taken less seriously and treated as though they may be abusers. Signing a contract to agree to 'random urine' tests, not 'doctor shop', be unable to get more medication if you lose it or forget to bring it with you, say on a trip, implies that we are using the medications for 'illicit' purposes.

Whatever happened to innocent until proven guilty?

When one in 4 may fake ADHD to get stimulants and when there is a growing prescription drug abuse problem is the way to fix it to go after those who are legitimately in need of these medications?

I do not know where I stand on the issue. I do know that I am a patient, not a faker, and it is not fair to lump us all in one basket that presumes abuser.

Sunday, May 1, 2011

Is different wrong?

"When I was four years old they tried to test my IQ, they showed me this picture of three oranges and a pear. They asked me which one is different and does not belong, they taught me different was wrong." ~Ani Difranco

The left side of my face was paralyzed 100% as a result of surgery in 1979. I have recovered a lot of usage but that side of my face definitely looks different than the other side.

Guess I need to give some backstory before I refer back to the quote.

Dr. Peter Jannetta is a major name in neurosurgery. He had perfected a procedure for trigeminal neuralgia called a microvascular decompression procedure (MVD)commonly referred to as a 'Jannetta Procedure'.

That January an unsuccessful procedure was tried that did not help my pain; and added it in the lower part of my face where it had never been, as well as caused the loss of sensation to my left eye, face, mouth and tongue. Because the pain was unhelped, my doctors suggested I see Dr. Jannetta.

I had to decide if I wanted the surgery he offered. I had just been very harmed only 3 months earlier. I was worried about my face. I wanted to be an actress, hope still springing eternal. I had not been told when I had the last procedure that I could lose sensation in my mouth and tongue or have added pain. I did not want there to be any surprises this time.

"Dr. Jannetta, can my face be hurt in any way?" "No." he assured me. "I promise you your face cannot be injured." His resident answered the same way when I asked him in a separate discussion.

The surgery was over. I opened my eyes. As I did I noticed my mother's expression changed. It went from the "Hello." look people have when you wake up to one scared and upset. "Nurse. Nurse." My father did not wait for one to come over. He hurried away from my bed and grabbed the arm of the first nurse he saw. To my amazement, the nurse did not look much better as she looked down at me. "Carol, let me see you smile." She looked. "I'll get Dr. Jannetta." she said and hurried away.

He came over to my bedside. He rubbed his fingers together close to my ear. "Can you hear this?" "Yes." I said. Then he left. Still no one said anything to me about what was wrong and why there was so much concern and upset surrounding my condition.

My face was paralyzed. I was now upset but no one was making any suggestions on how to fix it. No physical therapy, no discussion on how it would get better. No discussion even if it would get better.

Dr. Jannetta left for Germany the afternoon of the operation. The few seconds in the NICU was the last I saw of him until weeks later at a follow up office appointment.

In the interim, my left eye, which had lost all feeling as a result of the prior procedure (that was a known complication) and, now unable to close, became so dried out it was at risk needed to be protected. The only way to do that was to sew it closed.

I looked horrendous. The ophthalmologist wanted to keep it closed permanently. I refused. It is open (but does dry out and has required a few more forced closings over the years) but definitely looks different from the other one. The one side of my face ages, the other does so much more slowly. The smile is somewhat lopsided. There is a difference that I think most people once they know me get used to but new people notice. Some times I am asked "Did you have a stroke?"

This takes me back to the quote. (Let me remind you cause it has been a lot of paragraphs in between. "When I was four years old they tried to test my IQ, they showed me this picture of three oranges and a pear. They asked me which one is different and does not belong, they taught me different was wrong." ~Ani Difranco)

Different is wrong. It is not just different. People treat you strangely. They do things they would not otherwise do, somehow thinking that if you look unlike a 'normal' person you do not have the same feelings.

There are nice folk as well as thoughtless ones. The latter stare, the eye the most quickly noticable. They give a nudge to their child when he (she) starts to ask me "What happened to your eye?" (That is a standard kid question. I do not mind it, in fact I welcome it. Much, much better than a stare or a sidelong, long glance.) "Leave her alone. Don't ask her that!" they say teaching the child it is wrong to be different, someone not to be approached.

The nice ones offer me a tissue. I have to lubricate my eye throughhout the day. To some it seems like tears or tearing. (I had a guy once when I lived in NYC, become very concerned. He was standing on the stairs in the subway. As each person passed he said "F^&%& you, F^&&& you." He started to say it to me, stopped and instead followed me down the stairs. "Are you allright? Don't cry. Are you allright?" "I'm okay. Really. My eye is infected, that's all." It was the standard answer I gave, the truth way too long and involved a story. "Are you sure? Are you sure?" Finally I convinced him all was well. "Okay, then." he said. I heard him as he walked back up the stairs, talking at the people coming down them. "F&*** you. F^&&& you.") One lady insisted on helping me out of the subway car, deciding, for some reason, that I must be blind. "Don't worry, dear. Just take my arm." I did not know how to nicely say I was not blind so I let her escort me onto the platform. Other folks share their remedies with them, bonding with me by assuming a similar eye issue. "My doctor gives me this antibiotic when my eye tears like that. Make sure your doc gives it to you if he isn't." "I had Pink Eye too, don't let your kids touch your eye but you'll be over it soon. I was." They are being nice. I always take it with a grain of salt and a little smile. They want to help.

I think maybe the 'different' is one of the reasons, proabably low on the list but there, that I try and keep the pain to myself. I say "Help me. or "Please." when the pain gets bad, but I say it sotto voce, as quiet as I can, the words said outloud in spite of my trying to not speak the pain. The answer to "Are you Okay?" when I am not a "I'm fine, thanks." I want to be you. I want to be the guy who is fine. Who does not have pain. Who is not disabled and afflicted.

Three oranges and a pear. One of these things is not like the other, one of these things is not the same. I hate being the pear. I want to be an orange.