The Remedy For Self Absorbtion.... My Daughter Janey

In the early years MS inclined me towards a kind of morose self absorption. This proclivity seemed to be exacerbated when surrounded by the happy and healthy. I would, for instance, view the endless stream of joggers passing by my house as shameless show offs. I'm less inclined towards such melancholy today. It turns out that the fellow at that support group meeting was right , worse things could befall a person. It was such an occurrence that jolted me from my malaise in the fall of 1997.

My daughter, Janey then 12, began to be plagued by a host of mysterious maladies that our HMO seemed intent on minimizing. She was missing more school than she was attending and her mother and I were becoming increasingly alarmed. Repeated trips to the clinic seemed to engender more irritation than help from the cost conscious folks at the HMO. Jane continued to get worse and we continued to push her medical providers for some direction. They assured us that her symptoms would soon abate. Her symptoms didn't abate, she became weaker and weaker and we became increasingly frightened. When we persisted , more adamantly now, the clinic staff appeared to conclude that we must be nuts. Since they had no idea what was wrong with Jane they decided that her problems must be psychosomatic. They didn't actually share this bit of diagnostic acumen with us but in a decidedly condescending gesture arranged for us to be seen by their staff child psychiatrist.

Even now, recalling the day we saw the Child Psychiatrist causes my skin to bristle. The experience stands as the unrivaled, most shameful display of medical arrogance I've had the misfortune to encounter. Jane was so ill by this time that her legs would buckle when she tried to stand. She was so weak that her voice was barely audible. It was necessary for me to carry her from the car to the clinic waiting room where I was able to locate a wheelchair. The child psychiatrist, a brusk middle aged woman, had obviously been briefed on our dubious emotional stability. She spent a few minutes listening impatiently to Carroll and I and the remainder of the fifty minutes with Jane. Her conclusion: Jane's problems were psychological in origin, and her overly "enmeshed" parents were contributing mightily to her condition by infantilizing and indulging her. The remedy: Psychotherapy for all concerned. We were dutifully warned that the therapy would require the HMO's pre- authorization and, of course, the number of authorized visits would have to be limited and regularly revisited.

I carried Jane back out to the car feeling we were trapped in some kind of Orwellian nightmare. That experience dispelled any lingering confidence we had in our medical providers and we began to cast about desperately for help. Somewhere Carroll got the name of a Pediatric Rhumatologist at the University Hospital. Dr.Sheldon Horowitz, or simply "God" as he's known at our house, was touted as something of a giant in his field and consequently was a very busy fellow. Perhaps sensing our desperation he agreed to see Jane. Within an hour of our arrival he had arranged for Jane's emergency hospitalization and begun a massive infusion of medications. She lay in her hospital bed for a very long time, curled in the fetal position, unable to talk or take sustenance. The advanced state of her illness had left her teetering on the brink of something really, really bad. Dr. Horowitz knew almost immediately that she had Systemic Lupus and that she was a desperately sick child.

On the off chance that the reader, like myself, has been inclined towards obsessing over the details of their own relatively small bucket of woes, permit me to offer a suggestion. You might consider getting yourself up in the middle of the night, and paying a visit to the parallel universe that exists in your community's Pediatric Intensive Care Unit. You'll likely encounter what I encountered as I wandered, terrified, around that surreal moonscape. Exhausted, terrified parents, some looking as if they'd been camped out for weeks, standing a tireless vigil over their precious children. If such an experience doesn't wrest you from self absorption, you're likely not wrest able.