WHAT DEFINES FAILURE?

I just read this in a book, "there is an allotment of failures in any life before the life itself becomes a failed one."

I have often thought of my life as a failed one.

My sisters first turned on me when it looked like my life was going to be a success, that it was going to turn out the way I wanted.  When the pain started I thought maybe the failure of my life, of my plans, would make a difference.  It changed nothing.  Including my definition of my life as having failed.

Looked at in the context of what ius commonly called success: working at a job you like, a husband (spouse) or life partner, possibly children or extended family, friends who are there for you and so on, my life is not a success.

When I read what many people with chronic pain write, in posts, blogs, emails, support groups, I see repeated declarations of 'my life is a failure, I am a failure."

What if we changed the definition?  

Fighting, long and hard, against daily pain, against the challenges it puts in our way, day after day.  Is that not a success?  Feeling that some of the challenges are not possible to overcome, that does not nake us a failure, it lets us pick and choose our battles.

I think of the many surgeries I have had, having to go through most completely alone, including making the initial decisions to have them.  I did not fail.  I did not turn tail and run.  I faced the pain and the choices, many with risks that were scary.  There is not failure in not going ahead with procedures, treatments, etc: the success is in making the choice.

Many of us have to decide, day in day out, sometimes by the hour or even minute, what we will do, what we can do.  For some of us the first decision is can we get out of the bed or is the pain too bad?  The choice-making is the positive, even when the choice is I need to stay in bed right now.

I look at my life.  By all accounts, by the ones I use - it is a failure.  But when I look at it the way others have told me to; I wrote a book, I started a women in pain awareness group, I continue to fight the pain, by taking the meds, by doing some things I know will make the pain worse but doing them anyway, I cannot bring myself to say it is a success.  I can say I have not yet had my allotment of failures.

It is hard sometimes to not just see the negative, especially when you live with chronic physical pain.

If we see our life only in gray and black, pain and more pain, and refuse to let in the light of the good things - even tying our shoes, walking for 10 minutes, or, for me, reading and using my eyes before the pain hits, or that happens in our lives; time without pain, a ride on the car, talking with a friend, then we have let ourselves say "my life has failed."

There is a picture of a vase that is also a picture of a face.  You have probably seen it.  Substitute the vase with your picture of failure and the face with your definition of success.  Whether you see the failure on the outside and success contained within or vice-versa, maybe now is a good time to look at the picture from the other direction.

WHATEVER FLOATS YOUR BOAT.

I was in the shower this morning, washing my face.  Suddenly, a bubble appeared; round, pretty glints of green and blue emanating from it.  It was so unexpected, so much fun, I laughed outloud.  The feeling of joy stayed with me for a few minutes.  I keep the memory of that bubble with me.  I bring it out when I start to feel low.

It is these joy filled moments that help us through the not so much fun day, hours, minutes.  You do not have to be in pain to know the importance of having a 'security blanket",  something that helps recapture that fleeting moment; a memento, a sensation, even a smell or taste.

When we were little, most of us had a blankie, or something else that we kept with us to hold onto in those moments when a stranger approached or we entered an unknown place or situation, when we felt unsettled or arfraid, when we just needed the feeling of a known comfort.

Why not have a blankie now?

It may sound silly but it is easy to do and no one else need know you even have it.

Think about it - what is your secret 'this is what makes me feel good' thing': a blanket, the feel of silk or a down comforter?  Maybe it is a stuffed animal or a toy.  Is it the smell of coffee, a certain spice,  the scent of an orange or even a baby?    

You can make a list and keep that with you, the words, the feel of the paper, evoking the memory.  I remember a certain song or show I have seen.  On occasion that is enough to make me feel better.  Sometimes more is necessary. 

It is not hard to do it.

Find yourself a small piece of the material, cut up an old shirt or a tiny snippet of a blanket. If that is not comfortable for you or doable find a store that sells fabrics.  You can buy just a a foot, if they are nice they might let you buy just a few inches (if they're really nice maybe they will even give it to you.).   Many dollar stores, thrift shops, toy stores sell tiny stuffed animals, small enough to fit in a back pocket or a purse.  Take a small plastic bag and fill it with a teaspoon of coffee, chocolate, cinnamon, whatever you like. You can put in baby powder or orange zest.  You  get the idea.  Anything that you can feel, or open and get a whiff,  smelling it directly or discreetly putting it on your finger and smelling the tip.

I am sure some of your lists are a lot longer or different.  Whatever it is for you, the feel, the smell, the sometimes just knowing it is there, is enough to give you the feeling of comfort.

It is funny.  Many of us suggest to others or have had suggested to us that we keep a journal, write a diary, keep a list of the pain trigger; when it happens, when is it worse, when is it better.and so on.

Often forgotten is the need to write or have a list of what makes us feel good, when it happens, what triggered it, how can we replicate it.

Maybe this has given you some ideas for your own "this makes me feel good" moments.   Please add  your own.  And pass it on.

UNHOOKING FROM THE PAST.

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.)

THE SLINGS AND ARROWS OF YESTERYEAR.

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.

PERFECT TIMING: PAIN AWARENESS MONTH AND DISBELIEF

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."

Really??

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.

SURRENDER (not)

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.

LOOKING ASKANCE. IT'S A GOOD THING..

When I was younger (much) I hoped to be an actress/singer.  Starting out I worked in the chorus of 2 shows in a dinner theater.  The pay was less then the cost of the gas but it let me say I was a professional actor.

I was pretty much a namby pamby kind of gal: afraid of my own shadow, wanting to please, a go along to get along.  I was in the chorus, a part of the whole.  I did not need worry about being assertive or aggressive.

The first show was CAROUSEL.  The choreographer, Bobbi, did not like me.  Into astrology, she repeatedly said to me "You are not a Leo, I don't care if that is your sign.  You have nothing in you like the power of the lion." 

She was right.

Another dinner theater in the area and ours were at battle.  The other theater management called the liquor control board and told them we had dancers under 18.  Alcohol was served so all the younger dancers had to be fired, leaving a hole in the show..

I am not a dancer, and I was uncomfortable about and with my body.  Anyone could tell that by the high necked, long sleeved, long baggy shirts I wore.

Bobbi took me aside.  "Carol, since Gina, (the dancer who does the opening, a belly dance) was fired and you fit the costume you are now doing the belly dance."

"Oh no!, no!  I can't do that, the outfit is so sheer, it's totally revealing and, I'm even not a dancer."

"I don't care.  You're going to do it." she insisted.

I had no choice but to don the outfit, a very sheer top and separate bottom that showed my midriff.  I was the first thing the audience would see.

Oh my word.

We rehearsed and the feared first night came..  The music starts.  The lights comes up.  A spotlight glows down, on me, belly dancing (or more like bump and grind as a male castmate said.)

I always felt that Bobbi forced me to do it because she did not like me, which was true.  It annoyed her that I was a Leo but acted like a scared pussycat.

I changed because of the dance.  Being in the outfit and the center of attention for the first few minutes of the show had an effect.  I became somewhat more outspoken, less willing to be pushed around.  The change was obvious, Bobbi seconding it one night, "Now you're acting like a Leo."

I was thinking about this when the second show I was cast in at the theater, HELLO DOLLY, was on TV.

I always wondered why Bobbi would sabotage a show because of personal animus.  It felt like she was not thinking of the show: if I stunk that was okay, it would show me up. 

Watching DOLLY, some 30+ years later, for some reason, the thought changed.  Maybe she was trying to help me, forcing me to become who she thought I could be.

I have no way of knowing, after all it was decades ago.  It does make me wonder how many other times I have misjudged someone's intentions or their words, how many instances where I relied on the memory of what someone said or did, family member, friend, enemy or even doctor and allowed myself to feel the hurt, anger, and resentment again, like a burp after a bad meal, letting the bad taste engulf me.

It is often an issue of choice.  Do I choose to let this person hurt me again by looking at their behavior, rehashing their words, or do I take the opportunity to turn it around and see if there might have been a different intent?

It is said, you may hold onto the anger and other bad feelings but the person against whom it is held has probably forgotten about it years ago and could not care less.

It is worth putting whatever that held resentment and bad feeling is about into another light, twisting it to the right, and to the left, turning it upside down, spinning it around, and seeing if maybe, just maybe, another way of looking at it makes more sense.