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"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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Friday, May 31, 2013


The choir banquet is coming up.  I have gone to the last 3.  They are nice.  The restaurant is nice, the food okay, the company good.

But.  The lights are bright.  No matter where I sit I have to look to the left and to the right to talk to people.  It is a codeine laden night.

Since my implant has died the pain from eye usage and movement has gotten worse, and worse.  I find myself doing less and less because of the increase of pain and the decrease of eye usage time.

Choir rehearsal, and the church service is very hard for me.  Rehearsal requires a lot of singing and a lot of looking at the sheet music.  In addition, the room is very bright.  Since it has gotten hotter there is also the movement of the fan.  The eye responds in pain not only to my moving it but when something moves in front of it so the fan is an additional problem.  The service is hard even though we only sing one song and 2 hymns (and an introit).

I do better after church when we go downstairs to 'fellowship'.  The light is bright but I am not as close to them as I am in choir where the ceiling seems to be lower, in addition to sitting on a higher level so we are closer to the lights.  There is no choir director to have to try and watch for movements to indicate when and how to sing.  Nevertheless, if I talk to too many people I can be in trouble with the eye.  The benefit is I can leave whenever I want.

The banquet requires too much of me.  I am not sure why but I have never felt I am a fully accepted member of the choir.  I try to talk to people or be involved in conversations but often am ignored.  I am not sure if that is me or them.  (Another topic for another post, do I give off the scent, "don't ask".)  Going is an inclusion.  The pain is an exclusion.  In addition I cannot drive at night so I have to stay no matter how much trouble I am in with the pain.

This year I have made the decision.  I am not going.  I am giving in to the pain and the fear of the pain.

It is a decision I hate to make, it is a capitulation I abhor.  And sometimes it is the hateful that is the right thing to do.

Saturday, May 18, 2013





When someone hears my story about the medical malpractice that paralyzed my face, invariably they say, “What goes around comes around” or “He’ll get his.”  Some talk about “payback” or say “Karma will get him in the end.”  I get it. It’s a way to make me feel better. But it doesn’t.

It doesn’t because if he’ll “pay someday” or if life “takes care of it” then I have to ask the other side of the equation:  Is my pain the result of my bad Karma?  Is the malpractice, and the stopping of my life and dreams, my payback?  After all, if he’s getting his, am I getting mine?

I think about the clichés people use when confronted with a situation they do not understand or know how to deal with.

“God never gives you more than you can handle.”

He doesn’t? Then why is my pain overwhelming? Why am I struggling so hard to live with it? Am I a failure because I can’t handle it?

“It could be worse.”
Worse then what? Cancer? Losing a loved one? Of course not. But you know what? Pain consumes our lives and it consumes my life. When it doesn’t, it stops me from being involved with life. It keeps me isolated and drugged.

No. I am sorry. I already know I have it better than many people.

I think of my eye, my face, as separate from my body. Many of my doctors also see it that way, saying “I can’t help you because your pain is above the neck.”

My body works. I can get out of bed in the morning, dress myself, walk, bend, do everything a body needs to do. That puts me ahead of many, including many who live with chronic pain.

I have a roof over my head and enough money to get by, at least in the short run. That puts me in a better position than many others who are not as fortunate. I try to remember that, but when you say to me “It could be worse,” I feel worse. I feel chastised.

I have had 12 brain surgeries to try and help the pain. My head is a mass of indentations, soft spots, scars, and additional problems because of the operations.  A few years ago a friend told me, “You’re brain damaged.”

I was glad we were on the phone. I did not want her to see my reaction. I was appalled. And angry. How dare she say that! That expression is fraught with meaning, not a lot of it good.  But wait. She was right. I am brain damaged.

I hate writing the sentence, much less acknowledging its truth.

“You need that like you need a hole in the head.”  Oh please. Don’t say that.

As a result of a problem with another surgery, my neck “fell down.’ I now have 2 clamps and 12 screws holding my neck up and in place.  “You have a screw loose.”

Even though it’s a joke, I flinch when someone who knows about my neck says it.

“You have it so much worse than I, so I can’t complain.”  Sure you can. Your misery, while you have it, even if it is just a bad cold, is as awful for you as my pain is for me. I know a cold vs. chronic pain is a mismatch, heavyweight vs. lightweight, but my pain does not negate yours.

“Life isn’t fair.”  “Whatever doesn’t kill you makes you stronger.”  The first is definitely true, but the second? Maybe.

When life, your friends, even strangers, hand you a cliché, when lemons seem the order of the day, sometimes you just need to ignore it and do something nice for yourself.

Me? I think I’ll go make some lemonade

Reprinted from my column on National Pain Report.
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Monday, May 13, 2013


 Ah spring!  The time to go through the closets, throw out clothes we don’t want or need anymore (or fit in), put away winter things and bring out the spring outfits.

I go into my pantry and am surprised, as I am every year, to see how many cans and jars have passed their expiration dates and need to be thrown out.

It is a good time too to look at the people in our lives and see if any of them may have also passed their expiration dates, not just friends, maybe some family and medical people as well.

I used to live in New York City, but Dr. Michaels*, my neuro-ophthalmologist, was in Philadelphia.

He suggested I find someone closer to home. He recommended Dr. Smith* and I made an appointment to see him.

I was uncomfortable from the moment I walked into Dr. Smith’s consulting room.  It was a hot summer day. The air conditioning unit was on. Any air blowing on my face was a major trigger for my neuralgia pain.

“Could you turn that down, Dr. Smith?  It is really setting off the pain,” I asked.
“If it really hurt, you would just turn it down yourself,” he replied.

No caring, no comprehending.  I stayed with him anyway.  I felt I had nowhere else to go, no other doctor I could see.  The pain speaks to me: “You have to have someone and Dr. Michaels has no other recommendations.”

I did not end our relationship until the day I read his chart note: “There are days like today I believe in her pain.”

Keeping him for my doctor as long as I did was a bad decision.  I knew he was wrong for me and yet I stayed.

Which reminds me of a friendship I had.

When I moved to a condo in my new town I quickly became friends with a neighbor. The friendship was based solely on neediness, on both sides.  For me the need was being alone in a new town, having no one, and having pain 24/7.

Every 3 or 4 years, she would break off the friendship.  Her reasons were specious; it was just something she needed to do.  Three or four months later she would call me as though nothing had happened and we would take up the friendship again.

It was clear to me that I needed to end the friendship, but I needed a friend more. Because my need was greater than the pain of the breakup, I went back.  And back again the next time. It was only after the fourth time she ended the friendship that I realized this was something that needed to be ended.

How many times do we look at the toxic people in our lives and decide our need of them is greater than the pain and problems they cause?

The pain often makes us needier then we might otherwise be; the ability to get out and about harder for us, the need for comfort and care greater than accepting that the succor is not coming or comes in a hurtful way.

“You are malingering” “You’re making this up.” “It really doesn’t hurt that much.”  “Why can’t you do the shopping today, why do I always have to do it?”

It is hard to spring clean.  But it needs to be done.  Whether I shampoo a rug, throw out those torn stained favorite pair of pants or say goodbye to people whose lives have been intertwined with mine but are hurters not helpers, I am always surprised at how much better I feel.

It is almost funny when I realize how hard it is to think about doing these things, how difficult they look and feel in my mind, and how much easier they make my life once I have done them.


This is reposted from my new column for the National Pain Report.