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.)