DENIAL AND BETRAYAL IN THE WORLD OF LYME

I sit there transfixed – this circle of people in trouble who get together one evening a month at the town’s Sudbury school. Somewhere in consciousness I am opposing them – they are wallowing and have no dignity and are desperate and afraid and I don’t want to hear them, although they are my people. Some walk with canes. Some cannot drive themselves to the meeting. And at every turn in the talk I am finding points of identification, though I want it to be different. Identification with those who are clear but also with those who are not. I have had times I could not drive. I have had times my mind is hardly working. But that is not really my life! I drove here tonight to this Lyme disease support group. Drove by myself. As if nothing had happened.

This guy talking is on a dangerous array of painkillers. Two others in this evening’s small group are on these drugs too, and they have tales of being treated by police like they are common drunks. At least I am not using the oxycodone that is still with my pharmaceuticals and herbs. Others here are as alert as I would like to be, and all have their stories of what chronic Lyme has done to them. Real stories, but voices somewhere inside me are saying these people are not serious people. They have made bad choices. While somewhere else in consciousness it is crystal clear that these are my people. These people fighting for their lives. 

And I am filled with sounds and sighs and sights from a time that these days I am writing about – 1986, when I was happily involved, certain life itself depended upon it, in the rebel Manhattan version of Adult Children of Alcoholics – where there were good logical reasons, like their haziness and wallowing, to have nothing to do with even the people there to whom I was most attracted. They unworthy of me, I unworthy of them. It was not just once a month, those adult children meetings back then. I was in those groups virtually every day, sometimes more than once a day – those meetings that then were held all over Manhattan in churches and a synagogue and in schools and in offices and hospital building conference rooms.

People like me who had been suffering – some without ever bringing such suffering to speech or even consciousness – for what had happened to them in the deep past, things about which maybe no one except those present in these meeting places would understand. Not that it was all I was doing. I was getting into art, deeply into visual art and also back into poetry. I was traveling, visiting old places, looking up old witnesses to the past. And as I relived my life till then I was wondering if in all the years when I had thought I was going to make myself the man I wanted to be – those years of writing and adventure, exhilarating high times, deadly low times – in all those years I had been dodging the main issues. 

The Lyme group seems so similar, though it meets only once a month. It is similarly disorganized. No agenda beyond ideas of change, no strictures on what can be brought here and what done with it. And it is about suffering that the world mostly may not understand – for these are people whose minds are often foggy, whose hands often shake, who often are in such physical pain that it is hard to explain the difference between Lyme fog and pharmaceutical fog – and the all too conventional medical verdict is that what they are going through has to be something else and may even be pure imagination. This all being so like 1986 when over and over I heard the story so familiar to me that a family denies the pain of its members, denies mental violence and physical violence into even incest. These families that find it necessary to disavow children they were meant to protect – as in what I was finding in 1986 about the family I came from. 

And in 2013 we keep being told there is no such thing as chronic Lyme. Can’t be. The right professional organizations have not validated its existence. Just as if there were no such thing, since uncertified, as abuse that hangs over a lifetime.

Like back then with child abuse, in the Lyme world now the existence of what is at hand is denied by the people who are supposed to know and help. This time it is doctors, wittingly or unwittingly influenced by insurance company villains, who deny the problem at hand. These deniers of chronic Lyme now so much like back then the therapists who completely missed what they should have been looking for, and by default were a boon to the child abusers.

It has been a year and a half now since I needed a cane, though sometimes the fog still descends. I live now not in Manhattan but in a place with a mountain view on the edge of a town that feels, more than any other place in the world, like my town. In the years after 1986, when I came to myself, I found my vocation, something I had not realized I lacked. And I live now with whom I love, something I had tried for in all my life’s years. The years of life that in this current present number 78 but back then were a mere 52.

And now in the time of the Lyme plague some of the glorious old anger returns, directed now at these Lyme deniers, who like certain parents twist reality, with conscious or unconscious cruelty, to keep their sorry, twisted versions of reality intact.