July 22, 2010

Pain is another country, a place not on any map, a strange land where everything looks and feels different from what we’ve known before. We inhabitants grow curiously used to being there, even as we dream of escape.

Sometimes, for a brief moment before I’m fully awake, I forget about the sharp edge that accompanies my every move. Sleepy and a little numb, my feet hit the floor. I lean against a bedpost as I tentatively, carefully, take my first step. Suddenly, a white flash of pain overrides the soft glow of sunrise. This comes as a surprise each day, startling though there is no reason why anything would be different from the day before. That I even am sick can be a bit of a shock. It slips out of my consciousness as the denial of sleep lingers. This has been a 37-year drama. Today, again, I am in pain.

My herniated disc lies in wait low in my back. That land mine is a byproduct of multiple sclerosis and the stress it places on my body from the eccentric way I move. My right knee went a few years ago. The back pain was a long time coming and probably will prove a longer time going. Three cortisone injections in my back have proved to be of little use. The pain medication that finally was prescribed has such vicious side effects that every pill remains in the bottle and probably will stay there.

My pain goes from a coarse throb to an acute sensation I can describe only as exquisite. Merriam-Webster defines the word as “marked by flawless craftsmanship or by beautiful, ingenious, delicate, or elaborate execution.” That is perhaps an odd way to characterize anything as unpleasant as pain. But this pain is perfect and pure. A bayonet in the back.

We are changed by pain. At least I am. I am aware of this altered state every day. Pain is not a disease. Pain is a state of being.

Pain redefines a person. Dealing with disability can be routine in the absence of pain. But pain darkens me. Behavioral changes from pain are cumulative. Pain breeds unhappiness that builds, creating fatalism, a reminder on a visceral level that all living things die.

Pain has caused me sometimes to sit out of life. I shy away from contact with others, wanting to skip the informal dinner with friends or the spontaneous trip to the movies. When my wife, Meredith, went out with the kids, I used to go along at the drop of a hat. MS has robbed me of vision, and I put away my set of car keys long ago.

Most of all, my state of mind is altered. I cannot call it depression. But sadness and disappointment trail me everywhere. They are not disabling, but they hurt. They bring me down.

Pain saps me of energy, both psychologically and physically. Pain makes me tired and then interrupts my sleep, perpetuating yet another downward cycle.

By one count, about 50 million Americans suffer from persistent pain. Too often, they are stigmatized by those who cannot see pain and doubt it is real. In an essay titled “The Stigma of Chronic Pain,” Catherine Avery writes:

A church organist is asked to stay at her bench during the entire service, despite chronic arthritis pain. The same church provides an interpreter for the deaf and wheelchair ramps for the disabled. It also allows a pregnant organist to move about the church freely to ease her back.

A woman with chronic back, hip, and leg pain is publicly upbraided by a stranger for parking in a handicapped spot even though she has handicapped plates on her car.

A male moviegoer, standing in the back of the theatre to ease his aching back, is asked insistently to take his seat by the usher.

A pain patient’s parents tell her to quit acting like a baby.

We are up against our bodies and our neighbors, sometimes even our families. One day, they will feel their own pain. Me, I just feel old.

But I keep going. So do most of us who know pain. We have families and jobs. We take what we can get and spin gold from the hurt. We move forward, knowing things always could be worse.

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