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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Sunday, October 21, 2012


I was at choir rehearsal on Thursday night.

I have written before how hard it is for me to get through it, having to use my eye and therefore triggering the severe pain.

I was wearing my sunglasses.  Since the failure of the stimulator a few months back, I have found it harder to tolerate brightness, especially the bright light in that room.  It is more difficult too because of the amount of times I need to move my eyes, especially having to look up towards the light when I want to look at the choir director.

I cannot read the music without regular glasses.  I have taken to wearing them over the sunglasses when we are singing.

I know the pain gets worse because of the reading of the music.  Often we are asked to look at page (so and so) measure (such and such).  That means turning the pages , looking up and down the page - another equation of pain.

None of this is new.

For some reason it was bothering me more this week: why am I having such a problem here?  I wear sunglasses sometimes indoors and always outside.  The weight of them can be bothersome but not usually pain inducing.  The added weight, even the fraction of an ounce, really a fraction of a fraction, makes the pressure against my skin worse.  This triggers more of the pain.

The paralysis has made my skin on the left side of my face tight.  Singing forces me to open and close my mouth a lot, forcing movement of the skin, making more pain.

Almost every rehearsal and every Sunday when we sing, I think I can't keep doing this.  It is too much.  I can't take the the pain.   But I keep coming back. 

It is all I have.  It is also something I love to do; to sing, and to have a place where I need to be, at least 2 times a week.  (I have joined a chorus too but it is only a handful of us, the music is easy, the rehearsal time shorter, and the pain is much less a concern or triggered.)  Last week I asked myself,  does it have to be this way?

I always think that but this time the thought was different.

I took it further.  What am I doing that I do not need to do?  How can I fix this so it is not always a pushme/pullme?

I need to wear the glasses.  That cannot be changed.

I need to look at the music, to go through the 5 or 6 different songs to find the one we are working on.  I cannot change that.

I had stopped, a long time ago, searching for the part the director wants us to notice.  I have a pretty good ear and can often hear the issues he is pointing out.

A few months ago I told our director that I may have to drop out of singing some of the songs in rehearsal.  I assured him I was still learning them through hearing.  I thought that would help, which it has, but not as much as I had hoped.

What else am I doing wrong?  I am using my face.  As a soprano it helps me to open my mouth wider for the higher notes.  This week I recognized that the glasses plus the movement of my face was a major component of the increase of the pain.

I have decided that I will keep my mouth more closed, I will not worry about my pronunciation.  Singing the words is important but I am learning them.  I will sing them more pronounced when we perform the song for the congregation.

Everything I do each rehearsal seems necessary.  I have to wear the glasses.  I have to look up and down and over and around.  I have to manipulate my mouth to make good word sounds and so on.

You know what?  No.  I do not.  I can stop doing one or two things.  They will not change my experience of learning and singing but they may help me.  How much remains to be seen.

I have learned that often we do things by rote, not realizing what it is specifically that is causing us pain.

Next time you are doing whatever it is that is a pain promoting action, think about it, what do you have to do to do what it is you are doing?  Can you do it differently?  Sit instead of stand?  Put your computer or something else that you need in a different place?  Have the meeting come to you instead of you go to it?

People sometimes say to me "You have a big mouth".  Making it smaller is one way I can change the pain, maybe.  It is well worth the try.

Is there something, or some things, you can do that seem small but may turn out to be enormously to your benefit?

Wednesday, October 17, 2012

SHARING (or not)

To share or not to share.   It is a strange dichotomy for me since my book is out and many people have read it; strangers know the most intimate details of my life.

In real life, with people standing in front of me, I am unsure about what to share.  Some of that comes from my life experience; a family that ridiculed and pooh pooed anytime I was ill.  It also comes out of the experience that many of us with chronic pain have, the veil of invisibility.  If we do not say "I am in  pain right now and cannot..." no one knows we are in pain and cannot act in a way  that feels understanding or accepting.

I mentioned this to a friend, I do not really know what to say and I am afraid to say it, expecting disdain, definitely non understadning.

My friend says to me, "Yes, you do give off the impression, do not ask me."  I get that.  I do not want it to be the main topic of conversation, I do not want to be seen as 'sick' or unable.  But when I am unable I have not opened the door to saying "I cannot right now."  I have also cut off a line of intimacy, of allowing someone into my life.  It is hard to complain of being alone when you may well  have set the ground rules for nothing else.

Many of us write in support groups, posts, blogs, about how bad the pain is, how hard today was, how they are mis and not understood.

Is it us?  It is easier to blame the pain, to blame others, then to look ourselves in the face and ask - "Is it me?  Am I setting the line in the sand that makes it feel it should not be crossed?  

It comes in two colors: talking about it too much so people do not want to talk to us after a while because it is all all pain or negativity or trying not to talk about it all so the other feels a wall that should not be breached.

I have yet to find a good middle ground.  Mine is the wall I think, no, I know - I do give out that vibe, "Don't ask."  I try to hide taking the pain pill, I withdraw even further when the pain is bad.  I do not give others a chance to show they do 'get it."  When they have shown me I get hot, embarrassed, uuncomfortable.  The vibe sent out is not 'thank you for understanding.  I am so appreciative of your empathy and letting me know you see the pain and my struggle."  It is more "Oh please let's not talk about such things."

Sometimes I write to talk to 'us' but also to talk to me and set myself straight.

I just wish I listened harder to my words.

Tuesday, October 9, 2012


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.

Monday, October 1, 2012


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.