Although I was in shock over being discharged as a patient, I knew that I had to find another doctor to help me through the taper. So, I decided to go to the doctors who had originally prescribed Lorazepam for me. I figured that since they’d facilitated my unwitting dependence on the drug, they’d be willing to facilitate my conscious taper off it.

Guess what happened?

Well, one prescriber said that although he does prescribe Lorazepam, he does not feel qualified to help someone wean off Lorazepam, and that if I were still his patient, he would send me elsewhere for help. When Bob told him that I had thoroughly researched the tapering process, and that all I needed was someone to prescribe for me and keep an eye on things, the doctor said that the medication is too powerful and the withdrawal too complex for him to handle. End of story.

Yes, you heard that correctly. This doctor will prescribe a benzodiazepine without a clue in the world about how to help you stop taking it. And even when you tell him that you know all about how to wean off it, he will still not touch your withdrawal process with a ten-foot prescription pad.

Well, at least that got settled quickly.

Not so with Dr. Geraldine, another of my previous prescribers.

On Friday, May 28, the day I received the discharge letter from my doctor, I sent Dr. Geraldine an email briefly describing my situation, asking whether she would be willing to help me wean off Lorazepam, and requesting that she prescribe Silenor for insomnia. Because it was the beginning of a holiday weekend, I knew that I probably would not hear from her for a little while. In fact, I received an auto-reply message informing me that she’d be back in the office mid-week. Here’s how it went from there.

June 1, 2010
By Tuesday, June 1, I was in such a state of misery that I sent Dr. Geraldine another email, with the subject header Help!, in which I included the following plea for assistance:

Dear Dr. Geraldine,

Thank you,
RachelJune 3, 2010
On Thursday, June 3, I received an email from Dr. Geraldine that began with the following sentence:

l understand that face to face contact is not your preferred form of communication, but please understand that insurance companies require this and do not reimburse for care provided by e-mail.

Apparently, insurance companies don’t reimburse for compassion communicated by email either, because the first sentence set the tone for the entire message. Despite her tone, however, Dr. Geraldine was willing to see me, which was clearly what I needed. And yet, I felt hesitant. Something else bothered me about the opening sentence, and it took me awhile to understand what it was. Ultimately, struggling with Dr. Geraldine’s words helped me understand aspects of myself that I’d never fully grasped before.

As I considered the doctor’s assumption that face-to-face contact is not my preferred form of communication, I realized that Dr. Geraldine was quite wrong. Face-to-face contact is, in fact, my preferred form of communication. I like human beings very much, and I want to be able to spend time with them. The problem is that, with only a few exceptions, most people overwhelm my neurological system: their social expectations overwhelm me, their speech overwhelms me, their verbal pace overwhelms me, their emotional energy overwhelms me, their constant flood of nonverbals that I can’t parse overwhelms me, their indirectness overwhelms me, and their lack of understanding that they overwhelm me overwhelms me. So, I default to other ways of communicating (like email), but that doesn’t mean that I prefer these other ways of communicating. I like email, I like blogging, and I like my online friends, but I would love nothing better than to have face-to-face contact with each and every one of you.

The more I considered the whole issue of communication, the more I realized that not only are talking and hearing very difficult, frustrating, and fatiguing for me now, but they have been so my whole life. The difficulty, frustration, and fatigue have all constituted such a normal, everyday state of being for as long as I can remember that I’d never been able to see them for what they were. For most of my life, I’d pushed myself to talk (and talk, and talk), wondering why the whole process of conversing left me so completely wound up and undone, but never entertaining the idea that I could just stop. For a long time, I didn’t stop, for a number of reasons, the chief one being that talking is the way that most people communicate, and I didn’t think I had any other choice.

Sometimes, talking and hearing work: with certain people, on certain days, in certain situations, when an unpredictable number of factors in the world out there work in relative harmony with my current neurological state, the difficulties are manageable and do not leave me in pain. But all too often, with certain people, on certain days, in certain situations, when an unpredictable number of factors work completely against what is going on inside me, the difficulties are not manageable and the cost is very, very high.

However, I’m now realizing that I don’t have to talk and hear in order to communicate. In looking at alternatives, I’ve been rather amazed to find that they are not limited to email. In fact, I’ve discovered that different kinds of assistive technology give me the option of having face-to-face, in-person communication without talking or hearing. With this new understanding in mind, I responded to Dr. Geraldine and suggested some new possibilities:

Dr. Geraldine,

All the best,
RachelJune 4, 2010
Here is an abridged version of Dr. Geraldine’s reply:

I’m afraid such technology is not available here…. I am happy to keep conversations as brief as possible in order to avoid excessive stimulation. If unable to meet with me further, I believe there is a clinic in Easthampton, MA that specializes in autism disorder: www.communityresourcesforautism.org.
Please let me know what you decide.

One of the most upsetting things about this email is that Dr. Geraldine did not offer to discuss how we might work together to obtain assistive technology. Nor did she direct me to someone local (or even in the state of Vermont) for assistance. Instead, she ended her email by suggesting that I segregate myself from a place of public accommodation in my own community by going to a clinic that “specializes in autism disorder” in another state.

In fact, the clinic she referred to does not exist. The website that she specified belongs to a general autism support and referral agency in Massachusetts.

June 5, 2010
As you might have guessed, I was starting to get frustrated with Dr. Geraldine’s attempts to unilaterally define what I need. She offered to keep “conversations as brief as possible in order to avoid excessive stimulation,” but she didn’t acknowledge that her idea of “brief” might be my idea of “painful,” and that “excessive stimulation” does not even begin to describe my difficulties. In short, she didn’t demonstrate a willingness to meet me where I am and honor my understanding of my own experience. And so, in my response to Dr. Geraldine’s email, I continued to make my needs clear:

Dr. Geraldine,

RachelI did not hear from Dr. Geraldine again.

Next in this series: Part 3, When the Story Keeps Changing

© 2010 by Rachel Cohen-Rottenberg