Last week the minister said something interesting to me.
After service we stand in line to meet with her and share a greeting. People often stop and tell her about things that are going in on their lives.
She knew that my stimulator had stopped working. Two weeks ago I mentioned that I had an appointment with my neurosurgeon for the following week. She wished me well and I went on my way.
Last week I told her that the surgeon told me that there was nothing more to be done and "It was the end of the line." She responded "Now you will have a life of adventure." I was perplexed. "No." I said. "Now I will have a life of pain."
I thought about what she said. It was far different from the conversations I hear between her and other parishioners, as they talk about their cancers or other illnesses, that have 'real names' like M.S., kidney stones, etc.
If I tell you I have cancer and the doctor has said, "Sorry, this is the end of the line." it has a very definite meaning. The responses, "I'm so sorry." "Is there anything I can do for you?" is the normative. For pain, there is no pro forma reply.
I should no longer be surprised when my pain is apparently confusing to someone or to their decisions in how to react.
It is frustrating, a different form of, not exactly I do not believe in your pain, but of - this is so out of my realm of experience that I have no good response when you tell me you are in pain, or that the doctor says there is nothing more to be done.
It is another Aha! moment. A 'chronic pain is too far apart form what most people know' moment. It is too much to hope for, to expect, the same sense of empathy and understanding that is available for someone with a 'common' illness.
It is another reminder of the need for us to get the word out about chronic pain, to make it a term as common as cancer or many other diseases.
In a future post I intend to write about the demise of the American Pain Foundation . The closing of its doors means that all of us with and in chronic pain have to work that much harder at getting our voices heard. Having a common response to our pain; as a common disorder, having the world know about chronic intractable pain, developing an empathy and compression, is a result devoutly to be wished.