The unreasonable, emotional parent

In June 2006, twenty-two months after starting, Chris’s time in the day program was up. He had squeezed an extra four months out of it due to his poor clinical presentation, but now it was definitely at an end. Dr. ‘L’ arranged for Chris to check in with the doctors for his medication monitoring while we looked for someone else.

At our second to last appointment with Dr. ‘L’, I left the meeting spitting nails I was so angry. It seemed to me during the meeting that Dr. ‘L’ was again trying to drive a wedge between Ian, Chris, and me, in order to gain the upper hand concerning our (Ian and me) wanting to eliminate the medication. Dr. ‘L’ knew that Ian was the more “reasonable” parent, meaning Ian was more inclined than I to urge caution about where we were headed. Chris, as usual, took a limited part in the conversation, so I felt I was left twisting out there on my own once again. “Fine,” I screamed at Chris, while simultaneously jumping up and down on our walk home, “do nothing, stay ill, I’ve had it! I will not sit down with Dr. ‘L’ one more time! You can count on that!”

After a few days, it dawned on me that if I didn’t attend the final meeting, Dr. ‘L’ perhaps had a good shot at convincing Ian of the foolhardiness of our position. Dr. ‘L’ could then raise the medication. There was no bloody way this was going to happen, so I attended the final meeting and took the high road. I even said somewhat tenderly, “I will almost miss you, Dr. ‘L’,” which was perfectly true as far as it went. He understood. It wasn’t his fault, I suppose, that he was stuck in a paradigm belief that psychosis could be effectively managed by medications.

The glass half empty

Humoring Dr. ‘L’ was becoming increasingly difficult. We left the meeting with the understanding that the medication would be increased no more than 100 mg. Chris came home the following week with a prescription for an additional 200 mg. I e-mailed Dr. ‘L’ questioning this increase. He replied:

“I am surprised at your question, which indicates that I haven’t been clear enough, so excuse me. Chris suffers very handicapping auditory hallucinations as we have confirmed from our last meeting. In order to reduce this very painful psychotic symptomatology we propose to increase the medication by 200 mg. I thought that we were all in agreement with this strategy. That said, if as you say, the treatment is becoming the problem and not the solution, we should take this up at our next meeting. Chris can ask to reopen the issue of the medication with Dr. ‘B’.”

So, according to Dr. ‘L’, Chris still suffered from “very handicapping auditory hallucinations.” This was Dr. ‘L’’s pessimistic view of schizophrenia. This very painful psychotic symptomatology “glass half-empty” vocabulary was a continuous downer. We only heard the bad news from Dr. ‘L’. Bad news didn’t help his patient’s parents cope. What good did this kind of attitude do? And he still hadn’t fixed the problem. Ian and I believed that there was no way that raising the medication was going to fix anything.

Somehow we prevailed and the medication was raised only 100 mg. Dr. ‘L’ acknowledged that, at the end of the day, Chris’s loyalties would be to us and it was useless for him, Dr. ‘L’, to argue the point. Ian and I held the key to the drug cabinet after all. It had taken us two years to fully appreciate this point. I wished that Chris was able to be in charge of his treatment rather than be pushed around, but it was unrealistic. Chris was ill. In the acute stages, someone else had to make the decisions for him. In the later stages, the authority of his parents and his doctors overwhelmed him. He was torn and he was also medicated. In addition, he was understandably afraid that lowering the medication would bring his psychosis back. He didn’t have enough energy, intellectual or otherwise, to do his own research, to learn to rely on his own intuition, and to fight his way out.

Fleetingly improvised men

Despite the benefits that I had observed in Chris from the assemblage point shift, Chris continued to present a poor clinical image at his day program. In early June 2006 at our monthly meeting, I argued the never-ending medication point once again with Dr. ‘L’ in the presence of Ian and Chris. I was getting that “please, dear” look from Ian, but I persisted.

Suddenly, in the midst of our discussion, Dr. ‘L’ did exactly as I expected he would that day. He was determined to demonstrate to us why Chris’s medication needed to be raised. He focused his gaze on a point near the window where Chris’s gaze was wandering, and asked quietly and with evident dramatic flourish, “Chris, what do you see?”

“Uh, someone over there near the window.”

“Surprise, surprise,” I thought sarcastically. Chris was seeing people in the room who weren’t us. He was hallucinating. Instead of the term “hallucination” I like the term that Daniel Paul Schreber used to describe people populating the corners of his gaze. He called them “fleetingly improvised men.” To Schreber, these were “souls, temporarily given human shape by divine miracle”.

Dr. ‘L’ had caught Chris in the act, and waved this around as proof positive that he needed to have his medication increased. I knew Dr ‘L’ would pull this trick and I was prepared, sort of. Chris had warned us before our meeting that Dr. ‘L’ wanted to raise the medication. I would have preferred to ignore Chris’s wandering eye, but it was rather obvious. So, instead, I said, “Yes, Dr. ‘L’, but in the bi-weekly meetings with the other families involved in the program, it has been said that we shouldn’t pay undue attention to voices. Therefore we haven’t. Of course he hears voices and sees things. Isn’t that what schizophrenia is all about? It’s not for academic interest that we talk about voices in the bi-weekly meetings in the first place. The drugs haven’t prevented the voices, have they, so what good are they in Chris’s case?” What I would have loved to add, but did not, was that two years in Dr ‘L’s day program hadn’t fixed the voices either.

Alas, as I also predicted, we allowed Dr. ‘L’ to raise one of his two medications from 200 mg to 300 mg. Chris, after all, was acting more skittish than we had usually seen him in Dr. ‘L’s presence. It was hard to deny it, but the medications wouldn’t fix it. We were stuck in this clinical program for better or worse and it was now a question of humoring Dr. ‘L’ until we could execute a graceful exit strategy from the program and the stupid medications.

Daniel Paul Schreber, “Memoirs of My Nervous Illness,” New York Review Books Classics (January 31, 2000)