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, September 25, 2012


I just got an invitation in the mail to a college reunion.  I was not much interested because it was such a big college (Temple Univ.) and the chances of seeing people I knew would be small.
The plus side was an invitation to meet with former chorus members and conductors.

There were only 600 people at the Ambler campus when I was there (1970 - 1975).  My junior year they started a small chorus, conducted by a then newly minted chorus director.  I would love to see him.  I really liked him, but his name immediately evoked a memory that was not a happy one; that should have been a lifelong lesson but which I often forget: that the world is not necessarily my family.
I was young the first time my family taught me this lesson.

I had just come back from the doctor's office.   I was 13, and diagnosed with mononucleosis.   I was told I was to go to bed and stay there for 2 weeks.  I did not feel horrible and going to bed was not what I wanted to do.  My sister June (pseudonym) started yelling at me as though it was my fault I was sick. "Go to your room.  This is going to be so much more work for everyone." 

I stayed in my room, 2 weeks turning into 3.  None of my siblings came to my room to see me or how I was doing.   To make matters worse no one from school was calling or visiting.  (I later found out word had spread I was a "bad" girl because I had the "kissing disease.")

I developed Hepatitis and the 3 weeks turnind ultimately into 3 months of being housebound.  To compensate I took a big sheet and spread it out in the middle of the living room, thinking of it as my own little island.   When anyone came home they had to walk right by and around me.  I figured it was a way to get someone to pay attention to me.   It required effort to ignore me but ignore me they did.

June's behavior was consistent for all of my family.  I was treated as though I had done something wrong.  When finally some kids from school did come to the house,on halloween night, instead of feeling excited and happy I hid, embarrassed that I was sick, embarrassed that they would see me as sick: the lesson my family pounded into me learned terribly well..

When I was 19 I developed a spontaneous clot in my left knee.  There is a lot more to the story but for this post this is all that is germane.   I had to use crutches and I was mortified by the visible proof of my disability.

Jeff, the college choir director, had assigned me a solo for our upcoming performance.  I did not want to do it -  I had stage fright - but I was honestly happy that he forced my hand by insisting I was the only one who could do it.

I was all set and then, instead, I was on crutches.  How could I stand before an audience and have them see I was 'ill", that there was something wrong with me, with my body?

I refused to sing despite Jeff's assurances and reassurances that no one would care about anything but my singing.

I sat in the audience that night, listening to my replacement.   I was mentally kicking myself, why aren't I up there?  How could I let this opportunity pass?  No one would have cared about the crutches.  The last sentence immediately brought the pictures and words of my family to mind - oh yes they would, there is nothing wrong with you, you are just trying to bring attention to  yourself.

I wrote my last post about the words of hurt that we often carry with us, pouncing on them when things are bad, using them to make ourselves feel even worse, being unable to let them go when we most need to.

It is so hard to let that go.  It is even harder to let go of the lessons that we are taught as a result of the words.  You are lazy, you are bad, you are an embarrassment, your situation is an humiliation and so on.  So therefore you should not be seen, you should hide, you should mask your reality.

The invitation to the reunion reminded me.  I have to repeatedly work to not let those people who worked so hard to hurt me, on a conscious or unconscious level,  continue to work their havoc on me.

Pain may be invisible but that does not mean I have to feel I need to keep it that way.  It is actually okay to say "I have pain." or  "I need thus and so to help me.", or even "I can't right now".  (Much, much easier said then done, I know, for many of us.)

Sunday, September 16, 2012


I was listening to my friend Nancy talk about her pain and how bad it was.   The longer she talked  the more upset she became and the more upset she became the more she added into the mix.
A lot of it was happening in the here and now: "My mother went to the store and never even bothered to ask me if I needed anything.  She knows how much pain I am in.  How could she?"   The people she needed to help her seemed to be clueless and uncaring.

Then she thought about other times she had been in pain and needed help.  "Remember when I sprained my ankle that time a few years back,  she didn't even ask if I wanted her to come to the ER with me."

That took her back even further.  "And remember how my aunt didn't even bother to call me when I had my appendix out when I was 12?"  The more she recalled the more intense her anger, despair, and even pain,  became.

Her tumble down memory lane was all too familiar to me.  How many times has the pain been bad or I felt slighted because someone I thought should have been considerate of my situation was not, whose behavior has helped to make the physical pain worse (by insisting for instance that a tablecandle  stay lit despite knowing the movement and brightness of the flame inflames my pain).  And how many other instances of hurt, throughout my life, then crowd my thoughts?

What kind of siblings are they?  How could they have never been there for me, not even once, not even a card or a phone call?  Never mind that the last surgery was more then 12 years ago and the first slight by them over 33 years,  no, even way before then, before the pain started.  The psychic pain of no one being there for me for the surgeries, of acknowledging and believing the pain, usually tops the list of my litany of hurts.  My mind becomes populated with people from now, people from then, people from decades ago, instances where my feelings were not just hurt but torn apart, trampled, and thrown away.

Pain and hurt beget pain and hurt, the despair and upset of today the rock that gathers more and more weight as it rolls down, through memory and recesses of mind.

"Wait a minute, Nancy." I say to her, really talking to myself.  "Thinking about all this from other days and even years ago is of no help.  All it does is make it harder to pull yourself out of feeling the way you do.  You need to deal with the issue that is on the table now, not all the ones you have experienced throughout your life."

Closing down the feelings is never a good idea, it is a terrible way of dealing with our experiences (disclosure - I am a master at doing this) but there is a saying "you need to pick your battles".

Even when the battle is with ourselves/with the pain, we need to pick and choose - to put those that are not a part of the here and now into a mental box, ready to be dealt with when we are not so embroiled, emotionally and physically, with the pain.

Monday, September 10, 2012


I never thought a political debate online would lead to a post but I had a revelation the other day when someone who disagreed with me, after name-calling and using profanity told me, "I see you on facebook so obviously you are not disabled.  You should be working."


This person, whom I knew slightly in high school, knew me now only through my facebook postings.  He may have read some of my blog posts but has no day to day knowledge of me; and most probably about the history of my pain and where I am now with it.

"I see you on facebook all the time." (all the time? Funny, since I am not on it 'all the time')   It took me back to the words of my father, whose insisted on his disbelief in the pain no matter the proof from the doctors.  "I have seen you read so I know you can." 

Yes I still read.   I have to take narcotics to do it.  15 - 20 minutes, if I read or use my eyes consistently, causes such horrific pain that I become nauseated and have to stop using my eyes, sometimes for up to 1 -2 hours.  To not use my eyes means doing nothing: even eating, cooking, little things, requires eye movement so I am down for the count if I push it (which I too often do).

It reminds me of others who write, in support groups, or to me personally, or on their own blogs, my (        ) does not believe I really have pain, or that it is 'really' that bad.  When they write this it is often accompanied then and there, or in other comments at some point, by information that the person who said it does not like them, or is angry with them, or is someone with whom they have a bad relationship.

If you read me a lot you know that I tend to go to cancer as my analogy:rarely, if ever, do people say, in a fit of pique or anger, or disdain, "You do not have cancer, I know you are healthy."
Would he have written that to me, "I am against your political position, what you say is (&%$%  and you are not disabled (sick with cancer). You should be working."  No.  I truly doube it would even have occurred to him.

Maybe, these words,  "You are not really in pain" needs to be seen as a cry for help from the person who is using them, as a sign of their need to cut to the quick.  They want to hurt the other person and going after the invisible illness, the disorder that often just relies on the statement "I am in pain" is the 'best' insult they can find.

It does hurt, it is bad enough to be in pain without having to deal with not only the disbelivers but those who want to use it to add hurt, but we also need to keep it in context, of remembering who said the words and what their intent was.  It is hard to  not feel the cut of the words: but the best thing we can do, when it happens, is look at it for the trash that it is, mentally squish it into a ball and throw it out into the universe, letting it become the nothing that it should always have been.

Monday, September 3, 2012


I had neck pain for years, I complained about it everytime I saw my neurosurgeon.  I was there for post surgery appointments following various trigeminal neuralgia surgeries.  Each time it was acknowledged and then ignored.

One afternoon I was in an elevator with two friends I saw every few years..  Both were taller then I, and for some reason, looking even taller then usual.  “You guys look like you've gotten taller.” I said Ed laughed.  “You look like you've gotten shorter.”   I took that to heart.   I did not immediately connect it to my neck pain but, at my next appointment with the neurosurgeon, I impressed upon him how bad the neck pain was.

He took out the old x-rays and put them on the light box.    “Dr. (     ) has been concerned about this for years.”    That was a surprise to me because no one had ever mentioned it.

Then he said “I want you to go right now to the orthopedic surgeon a few blocks away.  I am calling him now."   I saw him about an hour later.   Suddenly I was being told "You have to have surgery this week.   Your neck is 'falling down'.  You could be paralyzed just walking down the street."  It turned out someone, I assume a resident, had taken out too much bone, 8 years before, when he was trying to access my brain through an incision in my neck.

I had the operation, which also carried a risk of paralysis.  It really had 'fallen down'.  12 screws held clamps in the front and back of my neck to hold it up.  It added back the 2 1/4 inches I had lost as my neck, the cervical vertebrae 2 - 5, slid down, my head getting closer and closer to my shoulders. 

My friends had been right, I had been getting shorter. When I said to them “It’s a good thing you said that about my looking shorter or I never would have had the surgery or known.” she replied “We were just kidding”

I knew the neck pain was bad, it had become exhausting just holding up my head.  Nevertheless I did not insist from the start, "Something is wrong here."  I was being stubborn, ignoring the pain and instead relying on the doctor's nonchalance.

How many times do we have the pain from our pain disorder, but it feels worse, or different?  How often have we felt discomfort, or worse, elsewhere in our bodies, but decided it is nothing or 'I don't want to know'?

Stubbornness can truly disable/kill us.  The strange thing is that many of us, while stubborn about other areas of our lives, other things we need: I am going to keep working on (      ) until I get this done, I will continue to fight for myself (or family or friends or others) as long as it takes to get the result I feel I deserve, or want, are often not stubborn when it comes to our bodies.

It was a hard lesson for me, and for many of us, I would surmise.

Fighting for medical care, making medical complaints can be no different.  No matter how loud and long it may need to be said we must say it, even if it needs to be yelled.  "I HAVE THIS  (pain, strange looking thing, funny feeling) AND I NEED YOU TO HEAR ME! 

And it is amazing how liberating it is to stand your ground until you get what you know you need, even if it is 'only' to be heard.