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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Monday, July 4, 2011

Where's my seat?

I went to church yesterday. The choir no longer sings for the next few weeks so I have to sit in the regular pews.

Usually when this happens I look for a couple I have gotten into the habit of sitting behind. That pew is one of the few that is not close to a stained window. I want to sit with people I know but my main objective is always to do whatever will minimize the pain. Being away from a window and the chance the sun will start streaming into the aisle and into my eye is of paramount importance.

John and Martha (pseudonyms) were not there. I had to figure out where my 'favorite' pew was on my own. I looked at the windows and thought I had the right pew. Nope, the window was lined up with the end of the row. Up I rose. I picked another seat. I was happy in this one. Two members of choir were sitting next to me. We were happy to see each other. I turned away from them and sat looking forward: nope, this one was also where the sun would set off the pain. "The sun is too much here." I felt I needed to explain to them as I looked around to see where I was supposed to sit.

I got up. I found another row. This one had to be it. It was, but by now I was feeling like an idiot. Did anyone see me going from row to row to row? Just in case I turned to the person next to me. "I need to be where the window isn't. I'm feeling a little like Goldilocks." He smiled. I had no idea if he had a clue as to what I was even talking about.

Without family or friends nearby church is my main place to go to be with people. Without choir rehearsal on Thursday and singing on Sunday, going to services is the only time of the week I get to see people I know, even if they are not 'friends'; very friendly, many of them, yes, but not friends, not someone I could call or who call me to say Hi or suggest getting a cup of coffee. The pain makes even this one day a fight.

Do I sit with people I know despite the sun making the pain worse? Church is already, at a minimum, a one codeine experience, even if all I do is sit in the pew and listen. Your eyes still move, to find the pew, to sit down, stand up, sit down again, acknowledge the people who do say "Hi." or talk to you. The pain comes without the addition of sun, of sitting with people you know and with whom you will have an active conversation.

Invariably I leave church more frustrated than when I arrived. All I wanted to do was be with people but being with them means the pain is worse, not only the emotional: talk revolves around the plans folks have for the weekend, the week, the holiday, their work, their children, their grandchildren but the physical too. It becomes the question that has plagued me all along, maybe even far back before the pain started. Where do I belong?

The holidays always make me think about the people who were supposed to be my family. It has taken me a long time but they are less and less in my thoughts despite living only minutes away. Their indifference made them and makes them a million miles away. But at a time when family is the emphasis of almost everything I hear and see it is hard to put them behind me right now.

Where do I belong? You know, right now I do not have a clue.

(As I write this I reread my words, pity, yes. Annoyance and anger? Yes. But I think it also speaks for most of us with chronic pain.

Where do we belong? We are marginalized by the media, the law, and by some in the medical community. We are looked at as hypochondriacs, drug seekers and abusers, addicts, as one person wrote me, lazy. We are victimized by the 'war on drugs". Where, do we, as people in chronic intractable pain, belong? I would like to think we belong with everyone else who requires ongoing medical care and therapies, including opiod when necessary. I would like to think we belong. Period.)


  1. Caroll,

    This post really resonates with me. Was I the person who posted about people thinking I'm lazy? I know I've said it many places.

    I feel a lot of the time that other people are having experiences I don't get to have. Earlier this weekend, I was recovering from a trip to take my son to view a potential college and we had been invited to the neighbor's house for a BBQ. My husband went and I didn't. I was able to see all of the people out of my kitchen window and I was thinking, "Do people ever wonder why my husband shows up to these things and I don't."

    My husband practically begged me to come over there, but it just wasn't something I was up to. And I feel like that makes me "less than" so called "normal" people. Recovery pain for 48-76 hours after an activity or a new flare up puts me down and out and I wonder if my husband and children are looking at me and thinking, "She looks fine. Why is she so lazy?"

    Where do we belong? I really wonder if there is a place we belong.


  2. Im sorry it has been such a bad day for you.
    I am not married so don;t have the hubby going by himself but I wonder why no one has thought to call you and ask after you when it is only your hubby.
    You;re not less than, you;re a normal lady hwo just can't right now.
    My eye pain makes readin very difficult. As you know by now ((*_*)) using my eyes for more than 10 -1 5 minutes continuously causes severe pain. My father was told that innumerable times yet said to many equally innumerable times "I have seen you read, so I know you can."
    It sounds like you have an underastanding family but I know how it can feel that way. Is it worth asking them how they feel when you are unable to do ( )?
    I guess the place we belong is with all the others who are disabled. It is the invisibility that makes it so hard for us to blend in.