Journeys with Autism

Something extraordinary has happened: my life feels ordinary. And I mean that in a good way.

Part of the reason is that my withdrawal from the evil benzo continues to go well—not always easily, but well. I’m now down to .4 mg per day. On Monday, I started using the liquid version of the medication, so I don’t have to split my teeny tiny pills into quarters anymore. I am so relieved. I take just one drop in a bit of applesauce, four times a day, and instead of cutting my dose every week, I’m now cutting my dose every three weeks. From what I understand, I need to go slowly from .5 mg to zero because my brain is waking up, and it’s important that it wake up gradually, rather than all at once. So, I’ve made myself a reasonable schedule, my doctor is supportive, and I should be off the meds by the end of the year. Can’t wait…but I have to.

Having tapered off the medication by more than 1.5 mg, I feel alive again. I still have my sensory-sensitive “I don’t-want-to-go-anywhere” days, but even on those days, I force myself to go out for a walk in a quiet place, just to keep my connection to the world intact. I’ve finally figured out that my connection to the world is not limited to the world of human beings, but to all of creation, so I walk and appreciate the trees, and the colors, and the breeze blowing, and even the incredibly humid weather. I carry my camera with me everywhere, and I’ve been taking lots of pictures, which helps me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world has become one amazingly interesting place. I’ve also started drawing and painting, so my eye is growing keener by the day.

But the med withdrawal only explains part of it. Mostly, I’m having an experience that I can only describe as an ever-deepening sense of being fine just as I am. I don’t feel inclined to explain myself, to justify my earplugs, to overcome my lack of small talk, or to pathologize my fascination with the visual world. I don’t feel that I have to stay anywhere any longer than it works for me, or apologize for what I can’t do, because after all, who can do everything anyway? No one I know. Far from it.

Above all, I seem to have made a surprising amount of peace with my essential aloneness. I’ve been reading a book called The Wounded Healer by Henri J.M. Nouwen, and it’s been giving voice to many things I’ve been feeling for a long time. The book is written from a Christian point of view, which makes parts of it very hard going for me, but there are moments in which the author’s theology falls away and the book just sings to me. For example, Nouwen writes that the condition of every human being is to be lonely, and that if we don’t accept our loneliness, we make all kinds of demands of the world that leave us wrecked. From his perspective, the only thing to do is to embrace this loneliness, knowing that it is the experience of all people, and to let others know that they are not the only ones. This task, in and of itself, is a terribly lonely one. Like the bodhisattva who cannot share his experience with many and yet allies himself with all, the person who embraces her loneliness knows that, most of the time, most people are trying desperately to flee their own.

This insight echoes what I’ve long felt: that being autistic, I am no more lonely than anyone else, but that others have many more social opportunities to run from their loneliness than I do. I have to face my aloneness, whether I want to or not. When the day is done, though, and the darkness comes, and people return home to empty houses and the privacy of their own souls, we share a common experience. In describing the life of the minister, Nouwen could very easily be describing our lives as autistic people:

“The painful irony is that the minister, who wants to touch the center of men’s lives, finds himself on the periphery, often pleading in vain for admission. He never seems to be where the action is, where the plans are made, and the strategies discussed. He always seems to arrive at the wrong places at the wrong times with the wrong people, outside the walls of the city when the feast is over…The wound of our loneliness is indeed deep. Maybe we had forgotten it, since there were so many distractions. But our failure to change the world with our good intentions and sincere actions and our undesired displacement to the edges of life have made us aware that the wound is still there…When someone comes with his loneliness to the minister, he can only expect that his loneliness will be understood and felt, so that he no longer has to run away from it but can accept it as an expression of his basic human condition.” (86-92)

These words just knocked me out, in the same way that discovering my autism knocked me out. In both cases, my life suddenly came into focus, and I found a mirror in which I could recognize myself. Now, I no longer go about my daily life looking for the magic key, or the decoder ring, or the person who will unlock the mysteries of the world so that I can enter. I’ve already entered. I’m here. The world belongs to me, as it belongs to every other creature that exists, and I experience things essential to being human. So now, I enjoy my forays into the world. I go to the co-op to buy a few items of food, and I no longer dread it. It’s still not easy to go food shopping. I still have to block my hearing, communicate with my “I can’t hear you” cards, and limit my time and energy so that I don’t overdo it. But somehow, all of that is all right. I look forward to buying food that nourishes me, being kind to people, and enjoying the walk.

I’ve also been going to the art store to buy supplies, and it’s fun. Yes, fun! Yesterday, I ran into two autistic friends there. It felt so good to know others, and to be known. I took out my earplugs a bit and talked. We didn’t talk for a long bit. I know when I’m reaching my limit, and I respect that, and lo and behold, other people do, too. And later on, after I’d looked at every mat and picture frame in the store, I made a bit of conversation with the lovely woman at the cash register, who looked at everything I was purchasing and said, “It looks like you’re going to go home and have fun!” And she was right. I said, “I love coming here because it’s fun to see everything you have, it’s fun to pick out what I want, and then it’s fun to go home and use it!” She seemed pleased. And then I went home, and I rested a bit, and then I got to work framing some photos.

How did I feel? Was I tired? Was I overloaded? Probably. But it was okay anyway.

What’s come into focus for me is that my challenges, my tiredness, my loneliness, my sadness, my confusion, and my fear are nothing extraordinary. When I was measuring myself against an ever-elusive norm of “happiness,” I kept rebelling against all of my so-called “negative” feelings, waiting for them to just go away so that I could be happy. And now I’m happy, precisely because I don’t want them to go away. When they come, I accept them. I even embrace them from time to time, because everything I feel is human, and everything I feel is the lot of every person. And when they go, I accept whatever replaces them. As Nouwen writes so beautifully:

“Many people suffer because of the false supposition on which they have based their lives. That supposition is that there should be no fear or loneliness, no confusion or doubt. But these sufferings can only be dealt with creatively when they are understood as wounds integral to our human condition…No minister can save anyone. He can only offer himself as a guide to fearful people. Yet, paradoxically, it is precisely in this guidance that the first signs of hope become visible. This is so because a shared pain is no longer paralyzing but mobilizing, when understood as a way to liberation. When we become aware that we do not have to escape our pains, but that we can mobilize them into a common search for life, those very pains are transformed from expressions of despair into signs of hope.” (93)

Somehow, his words have had this mobilizing effect on me. Hopefully, as autistic people, we can search for life together, in all its fullness, knowing that we each walk alone, and we all walk together.

© 2010 by Rachel Cohen-Rottenberg

For those of you who have difficulty speaking and listening, here are some of the alternative communication technologies I’ve discovered.

TTY Relay Service
If you obtain your own TTY number, you can call any phone number and communicate via a relay operator. Using your computer, iPhone, or iPod Touch, you type your part of the conversation. The relay operator speaks your words to the person at the other end, and then types the person’s response for you. This service is wonderful and has allowed me to make phone calls again—and this time, without difficulty and exhaustion. And best of all, it’s free!

You can immediately obtain a TTY number through Purple Communications’ IP-Relay for use on your computer, iPhone, or iPod Touch at www.ip-relay.com. You can also obtain a TTY number for use on your computer through NexTalk at www.nextalk.com. It takes a while to obtain the number through NexTalk, but you can begin making outgoing calls right away. I find that using my iPod Touch is good for leaving short messages. If I want to have a longer conversation, I use my computer. If someone calls when I’m not online and leaves a voicemail message, I receive the message by email.

Text-to-Speech Synthesizers
Speak It! is a very nice little text-to-speech synthesizer for use on your computer, iPhone, iPad, or iPod Touch. It costs $1.99 and is available through iTunes.

For use on your computer alone, you might want to try NaturalReader at www.naturalreaders.com or SpeakComputer.com’s TTS (Text to Speech) Software at tts.speakcomputer.com. Both are free.

Text-to-Text Devices
If you find yourself in a place with your laptop, a wireless connection, and another person with a laptop, Skype and IM are great ways to communicate in a text-to-text fashion. However, in situations in which a wireless connection is not available, I use SComm’s Ubi-Duo, a portable text-to-text device consisting of two consoles with their own wireless connection. So far, I have used the Ubi-Duo at my doctor’s office and my attorney’s office, with great results. You can even save the text of each conversation; my doctor finds this feature very helpful, because I can print the entire contents of our appointment and she doesn’t need to take notes. I plan to start using the Ubi-Duo at my Voc Rehab appointments as well. You can find more information about this device at www.scomm.com.

The only drawback to the Ubi-Duo is its steep price: $1,995.

I am very glad to have found all these technologies, because it’s now official: I have an auditory processing disorder. I’ll write more about my appointment with the audiologist when I receive her full report.

© 2010 by Rachel Cohen-Rottenberg

I have begun writing monthly articles on disability issues for our local weekly newspaper. The following is my column for July:

In my last article for The Commons, I wrote about the distance I often feel from the non-autistic world, saying “[I]f you are a typically abled person, we live worlds apart. You see, I am autistic, and there are many things that I cannot do.” The feeling was an honest one, and yet, I’ve been troubled by these words from the time I first saw them in print.

I’ve thought long and hard about why, and I finally have an answer. I’ve come to realize that while I sometimes experience myself as living worlds apart from non-autistic people, this feeling is not a function of my autism. I am not actually worlds apart from anyone because I am autistic. I feel worlds apart because the world in which I live is not yet inclusive enough to take my particular set of strengths and sensitivities into account.

In the larger world, two models of disability are always in play. The first is the medical model, which posits that something is wrong with me, something from which I “suffer,” something that must be treated and perhaps someday “cured” by medical intervention. In this model, my autism is a disorder, and I am somewhere “over there,” apart from regular folks, separate and unequal.

I have sometimes found myself trapped by this point of view, mainly because I have imbibed about a half-century of negative ideas about autism and the general condition of being disabled. I had accepted without question the idea that all autistic people would rather be non-autistic, and by extension, that all physically atypical people would rather be typical. After reading the eloquent and searing words of many disabled people, I have come to understand that this point of view is a serious distortion. Many, many of us are proud to be who we are and would not want to be different. The Deaf community is a perfect example of a group that embraces its experience of the world as perfectly valid and celebrates its own unique culture. The Autistic community is beginning to do the same.

Of course, there are disabilities that require medical intervention for health and quality of life. However, not all disabilities fit this model and even when they do, they cannot be entirely defined by it. Personally, I have moved away from the medical model, mainly because it tends to create a hierarchy in which some people’s lives have value and other people’s lives do not. It creates a mindset in which we celebrate the lives of some people, while mourning the lives of others, simply based upon physical difference. I do not accept this way of understanding the richness and complexity of human life. I find it unjust and divisive.

An alternative lens through which to view disability is the social model. According to this model, disability is a social construct. That is, one can only be disabled in relation to an accepted norm. So, all the things I value about myself—my acute sensory sensitivities, my deep ability to empathize, my visual acuity, my ability to enjoy silence and a slow conversational pace—become disabilities simply because I live in a culture that does not value them. For example, because I have hyper-acute hearing, I have to wear earplugs when I go downtown or into any sound-filled environment. Until recently, I’ve thought of my hyper-acute hearing as a problem, because I find it very hard to converse with other people in public or to concentrate in the midst of noise.

But my hearing isn’t a problem in isolation. It’s only a problem because I live in a very loud culture—full of noise, full of words, full of TVs and radios and music playing everywhere I go. If I lived in a quieter culture, my hyper-acute hearing would not be a problem. In fact, when it comes to keeping people safe from harm, it would be an asset. In the same way, if I lived in a culture that valued deliberation and a more measured verbal pace, I wouldn’t have the problem of being constantly left behind. In a society in which impulsive action and rapid speech trump other ways of experiencing life, I cannot possibly keep up.

In the face of this mismatch, the only way for me to stay connected to others is to consistently ask for other people to adjust the environment so that I can be present. For example, at one of the stores in town, I ask a staff person to turn off the music when I come to shop, and whomever I ask is always happy to oblige. Everyone who works at the store wants the place to be accessible to me, and and they know that I cannot operate in an environment with music coming from every speaker. Because the staff is willing to be flexible, I have full access, just like everyone else. In stores with loud music playing, the environment is so aversive that I cannot enter, and full inclusion becomes impossible.

Moreover, when I go to my doctor’s office, I use a text-to-text device in order to communicate. Doing so allows me to avoid coming home in a state of auditory overload. My husband and I had to work long and hard to find a doctor open to this form of communication. Because it was a painful, discouraging, and exhausting process, I feel especially fortunate to have happened upon a sensitive doctor. At my last appointment, in fact, something wonderful happened. After we had been typing back and forth for about a half hour, she said, “I’m exhausted. I’m not used to typing so much. Now I know how you feel with your auditory processing challenges.”

And I replied, “That’s amazing. Writing and typing are so natural to me that I forget that other people could find them difficult.”

It was a perfect moment. She understood me. I understood her. I didn’t feel worlds apart at all. I had a different way of communicating during appointments—that was all. My way of communicating was no better and no worse than anyone else’s. At that moment, I became more than the sum of another person’s preconceptions. I felt myself a part of the world, able to express myself fully, with a presence equal to that of every other human being.

So, yes, if you are typically abled, I sometimes feel that we live worlds apart. But it doesn’t have to be that way. If we lived in a society that took human diversity for granted, that made room for difference as a deeply held value, every one of us would benefit. Our view of one another would become much more expansive, much more respectful, and much more compassionate. Ultimately, we might even see one other as perfectly different and perfectly human.

© 2010 by Rachel Cohen-Rottenberg

Hi all,

I’ve decided to launch a new website for my photography and other art projects. The site is called Sojourning in the Visual World, and you can find it at www.sojournerartist.com. Enjoy!

© 2010 by Rachel Cohen-Rottenberg

Over the past few months, I’ve found myself moving further and further away from the mental health profession and its view of the world. It’s always difficult to know how these things begin, especially for someone like me, who has spent many years in front of therapists. For a long time, psychotherapy helped me. It gave me a language with which to express the abuses of my childhood. It allowed me a safe place in which to work out the ways in which the trauma was affecting my life. It helped me to move beyond being a victim to a survivor, and then it helped me move beyond being a survivor to simply being Rachel.

So where did it all go wrong between the mental health profession and me? I’m not sure it did. As is my history with most large groups, I just outgrew it. And once I outgrew it, I began to see all the ways in which its definitions were still limiting me, because I hadn’t dislodged those definitions from my brain.

The process of debriefing from the mental health profession began when I was still in therapy. I had a conversation with my therapist in which I began to realize that the paradigm I was developing was altogether different from the one in which he was comfortable. We were talking about diagnoses, and I was still very much wedded to the idea of having one—or so I thought. The conversation went something like this:

Me: When you write up your paperwork about our sessions, do you include a diagnosis?

My therapist: No.

Me: If you had to give me a diagnosis, what would it be?

My therapist: Well, you definitely have a mood disorder.

Me: I do?

My therapist: Yes.

Me: How do you define that?

My therapist: Well, you’re anxious and sad a lot.

Me: That means I have a disorder?

My therapist: Yes.

Me: But look at my situation. I’m dealing with being disabled in mid-life. The world is not set up to bring someone like me into full membership in the community. In fact, I feel invisible most of the time. It makes me sad. I’m grieving. Anyone would feel sad and upset in that situation. Why does that mean I have a disorder?

My therapist: Because it’s your problem.

Me: What do you mean it’s my problem? I live in a society that renders me invisible. Why isn’t it society’s problem?

My therapist: Because it’s your problem.

Me: But I can’t solve it alone. I realize that I have to deal with what I’ve been given, but you can’t possibly expect me to just bear up cheerfully under the weight of all this difficulty. There’s a relationship between me and the world here. What about the world’s dysfunctionality? Why is this all on me?

My therapist: [insert patronizing therapist look here]

Me: Do you understand what I’m saying?

My therapist: Yes, and it’s still your problem.

Me: I can see we’re not getting anywhere.

I left therapy soon afterward.

I’ve thought of this conversation a great deal over the past few months. To my mind, it encapsulates everything that is wrong with the mental health profession:

1) Having a human emotion such as sadness, grief, anxiety, or anger in response to an ongoing traumatic, life-changing, unjust, or otherwise maddening situation is evidence of a disorder.

2) The medications I was taking were never on the table as a cause of my anxiety and depression. (As it turns out, they played a major role).

3) We don’t need to talk about disabilism, its impact on people, and how we need to change it.

4) People become transformed into patients and put into diagnostic boxes.

5) We only need to talk about how screwed up the patient is and how we need to change the patient.

Over the course of my life, I’ve been labeled (officially and unofficially) with depression, general anxiety disorder, post-traumatic stress disorder, Asperger’s disorder, autism disorder, and sensory processing disorder. And next week, I’m going to an audiologist who will most likely diagnose me with auditory processing disorder.

I can’t tell you how depressing it is to keep collecting disorders like this. (I suppose that means that I have DODDD: Depressed over DSM Diagnoses Disorder.) All these labels have done a huge number on my head. If I’m going to live a full, happy, and empowered life, I need to send these diagnoses back to where they came from, because they are not me and they have nothing to do with me.

Let’s start with autism, since that’s what got me started thinking about this whole issue in the first place. Autism is not a disorder. It’s not a collection of impairments. It’s not a series of deficits. It’s not something that’s wrong with me. It only looks that way because I live in a society that values certain things to the exclusion of others. It values yacking about non-substantive things; I like substantive conversation. It values social chit-chat; I don’t do social chit-chat. It values being loud; I can’t spend any time in loud environments. It values going fast in every way possible; I cannot follow fast speech, fast-moving objects, or fast-moving graphics.

The society I live in is fearful of silence and deliberation. It thrives on mutually agreed upon deceptions. It abhors directness. It does not honor one’s word as one’s bond. It values appearance over substance. It tyrannizes us with the necessity for “positive thinking” above all else, as though it weren’t simply all right to give vent to one’s emotions when terrible things happen and heartbreak is the only sane response. In short, from my point of view, the society I live in is very unhealthy. Does that mean that something is wrong with me? Why? Because I’m in the minority and the majority is always right? Such nonsense.

My acute sensitivities are not a problem in and of themselves. My emotions are not a problem, in and of themselves. My post-traumatic stress issues are not even a problem, in and of themselves. All of these things can be a source of great power and heartfelt service to others if I use them properly. All of these things only become a problem when they go against an arbitrarily defined idea of “normal.” Then I get people trying to prescribe, discuss, and cure them out of me. But as a friend said to me the other day, please find me this “normal” person, because I haven’t stumbled across him yet. (And yes, the “normal” person is definitely a guy, because being male is part of the standard for “normal.”)

Of all the things that American culture values as “normal,” conformity is the most important. We talk about respecting difference, but if we respected difference, we’d just go around doing it and not talking about it all the time, now wouldn’t we? Here in America, the home of “rugged individualism,” we don’t respect difference. In fact, conformity is Job One. Here’s how it goes: You can only be a rugged individualist if you’re white, male, Christian, heterosexual, and fit into a certain unnamed place on the neurological spectrum. If you’re something else, it gets scary for those rugged individualists. I don’t know why all the rest of us on the racial, gender, religious, sexual, and neurological spectrum should make the rugged individualists faint, but apparently, we do.

When it comes down to it, autistic people, or bipolar people, or schizophrenic people, or traumatized people, or anyone in any other group of people, are just different from a mythic “norm” that simply doesn’t exist. There isn’t a person on the planet who won’t fit into a DSM diagnosis if you look hard enough—or who can’t be misdiagnosed into one if you don’t. They’ve got a diagnosis for everything a human being can possibly go through, which makes life itself a pathology and human beings nothing but walking disorders.

Well, I don’t believe that life is a pathology and that people are walking disorders. To heal this kind of mindset, I’m starting with my own distorted sense of myself as disordered—a distortion I’ve taken on as though it’s a clear reflection of who I am. It’s not. I know that now.

© 2010 by Rachel Cohen-Rottenberg

I’ve had an epiphany lately regarding my father and some of his formerly most mysterious and annoying habits.

As I’ve written before, it’s apparent to me that my dad was on the spectrum. Of course, no one ever talked about such things back then, so when I was growing up, the family explained my father’s oddities by saying that he was hard of hearing. Of course, he never went to an audiologist or had hearing aids or any of that nonsense. My mother used to say that he’d been born with nerve damage in his ears, and that no one could do anything about it. I’m virtually certain that she made up that story to explain the inexplicable, since she made up a lot of stories, and she believed them, too.

My father’s hearing issues were very aggravating to me as a kid, because every single time I said something, the very first thing out of his mouth was, “What?” Every single time. It was a reflex. It didn’t matter how loudly or how softly I spoke, or what else was happening in the room. He’d always say, “What?” When I had the patience, I’d repeat myself, in exactly the same tone of voice, and then he’d hear me. When I’d get exasperated with him and say, “Why aren’t you paying attention to me the first time?” his response would always be the same: “You’re mumbling.”

And that response would send me into the stratosphere, because I Did Not Mumble. No one else in the entire world ever said I mumbled. I knew that I was enunciating the English language perfectly well, and I still get an adrenaline rush just thinking about my father telling me otherwise. He knew how much it bothered me because, after awhile, he took on a new annoying habit: when he couldn’t hear me, he’d say “You’re mumbling,” and he’d laugh. And then I’d say, “I am not mumbling. You are not hearing me.” But it never made a difference. It was always “What?” and “You’re mumbling.” By the time I left home, it had nearly driven me up the wall and back.

For several years afterward, I continued to buy the idea that my father was hard of hearing. Then, one day, when my parents were visiting in California, everything changed. We were all in the car; my father was driving, and I was in the back seat. There was lots of ambient noise: highway noise, the sound of the car wheels running over the pavement, and everything else you hear in a car going 65 miles per hour on a six-lane freeway. Nonetheless, I said something to my father. I can’t even remember what it was, because I figured he wouldn’t hear it anyway. But, miracle of miracles, he heard me. The first time. Without saying “What?” or “You’re mumbling.” He just heard me, like a regular person, and he just answered me, like a regular person.

I suppose I should have felt angry, as though he’d been playing some sort of weird game all those years, but I wasn’t. I intuitively knew that he really had heard me clearly at that moment, and that he hadn’t been able to hear me before. I became fascinated by the contradiction, but I really didn’t know how to explain it.

These days, though, it makes perfect sense to me. After all, when I go out into the world, I often block my hearing—with earplugs, a Peltor headset, or both. Today, I’ve been able to wear just my earplugs, and hear people as though they’re at a distance, and say a few words in order to get my errands done. But tomorrow, when I go to my Voc Rehab appointment, I will have to wear the headset in order to block out ambient noise and allow myself to concentrate. In other words, I render myself more or less able to hear as needed.

I’m now realizing that my father must have had the same amount of auditory sensitivity and processing difficulty that I have, and that he intuitively came up with a survival strategy. Somehow, he selectively rendered himself deaf. It’s as though he just shut down his attention and literally couldn’t hear, and his saying “What?” was his signal to bring his attention back up. This strategy also provided him with a way to cushion himself against having to hear everything loud and clear the first time, and thus avoid becoming overloaded by it. It really was quite a brilliant strategy, and I’m in awe that he was able to pull it off. As for me—I simply cannot let my auditory attention wane. It’s always on alert, unless I block my ears. Then, even if I can hear somewhat, the person talking feels further away and the sound of his or her voice doesn’t penetrate my nervous system with anything like the same intensity. Somehow, my father was able to give himself the same experience without having to explain why he was wearing a lawnmower headset to go shopping.

My father is now gone, and even if he were still alive, he would not for a moment accept anything that I’m saying. He wouldn’t accept that we were both on the spectrum, he wouldn’t accept that we both had extraordinary sensory sensitivity, and he wouldn’t accept that I couldn’t overcome all of it by sheer force of will. In fact, he’d laugh me right out of the room for even broaching the subject.

So I’m just left with a new understanding of my dad, and it makes me feel closer to him. It consoles me to understand him better now.

© 2010 by Rachel Cohen-Rottenberg

I am happy. Why? Well, let me tell you!

I am halfway through my medication taper, and while it’s been a rough road, I am feeling better and better every day. Just the knowledge that I am getting these benzodiazepines out of my system makes me feel good. My mind is clearer, my mood is better, and I feel more resilient. The benzos were literally depressing the hell out of me. They caused me no end of problems, some of which they had originally been prescribed to treat. I’ve learned that there are thousands upon thousands of others who have discovered the same thing, and who are now working hard to say good-bye to these medications forever.

I am going out for long walks every day, whether I feel like it or not, whether it’s raining or not, whether I feel like a train wreck or not. I’ve taken my stationary bike out of my loft and stored it in the garage, because cycling indoors just symbolizes isolation to me. I have to get outside everyday and feel part of the world, and I will continue doing so even when it’s cold out. I’ve done it before, and I will do it again.

I’ve started cooking delicious, healthy meals. I can now make a great tofu curry dish and today, I’m going to make a Mexican-style meal. It’s amazing to enjoy cooking again. I’ve discovered that what overwhelmed me was not the cooking per se, but the feeling that I had to come up with a new dish every other day, instead of just building up my repertoire, one dish at a time, over a more manageable period of time. I’m still learning the concept of “slow and steady.”

I have started using the library, and it feels so calming. It sure is nice to go into a building without piped-in music.

I’m continuing to experiment with alternative communication technology, and I’m studying ASL again. I’m realizing that it’s time to get serious about giving myself alternatives to speech when I need them.

I have met some new autistic people in town! It happened in the oddest way: A local guy named Jesse emailed an ASAN board member in Oregon, looking for an ASAN chapter in Vermont. It just so happens that this ASAN board member in Oregon is also a friend of mine (Hi Elesia!), and told him that I was starting up an ASAN chapter in southern Vermont. (I had corresponded with Elesia some time ago about being the chapter leader here, but hadn’t done much to move it forward.) So, she put us in touch with each other. As it turned out, Jesse is on the spectrum, and works with autistic middle schoolers and high schoolers! He was putting together an event for Autistic Pride Day on June 18, so I showed up for that, and met some new people. Since then, he and I have been emailing and discussing all kinds of things, including ideas for getting an ASAN chapter off the ground here. He and I are both very interested in self-created autistic community and he plans to introduce me to others.

And, last but not least, I have finally remembered what I learned long ago: creating happiness is up to me. For reasons having nothing to do with me, people will not always come through, and I have to be able to maintain my self respect, my dignity, my individuality, and my sense of self. In other words, whatever happens, I have to hold onto my power and use it for my own good and for the good of others. It’s not always easy, but it’s always necessary.

It’s tough to keep learning the same things over and over, but I think that’s what we humans do. We get lost, and then we have to find the way back, again and again.

© 2010 by Rachel Cohen-Rottenberg

At the same time that I was spinning my wheels with previous prescribers, Bob and I were working together to find a new doctor. While we thought that starting out with a clean slate would make the situation easier, we were wrong. In fact, we exited the world of the maddening only to wander into the realm of the absurd.

June 3, 2010
Bob called Another Local Family Practice. Carla, the receptionist, said that the practice was accepting new patients and offered to give me an appointment with NP Charles on June 14 at 11:20 am. All I needed to do was to confirm the appointment. When Bob explained my communication needs, Carla said that they would supply an interpreter. When Bob explained that I don’t sign, Carla said that I could write notes back and forth with a provider.

Initially, I felt optimistic. Fool that I am, I always feel optimistic when people say the things I need to hear. As the day wore on, however, my optimism began to wane.

I installed TTY software on my computer in the late morning and called Another Local Family Practice using the TTY relay service. After a few technical glitches, I was able to reach Carla. I told her that because of my medication needs, it might be more appropriate for me to see a doctor than a nurse practitioner. Carla then gave me an appointment to see Dr. Mary. She asked me the name of my present doctor, and asked that I get the records transferred to them.

When I explained the situation with Dr. Fred and that I had requested that the records be sent directly to me, the situation began to change. Carla that Dr. Mary could not see me until the office received my medical records and she could look at my treatment history. She suggested that I try to expedite the situation by going to Dr. Fred’s office and getting the records in person.

Here are the relevant parts of the conversation from the TTY transcript of the call:

Me: You suggested that I make an appointment with NP Charles on June 14 at 11:20. I’m not sure he’s the right person, though, because I have some serious medication issues I’m dealing with and don’t know whether he’d be able to write prescriptions, guide me on this, etc.

Carla: ok in that case why dont u let me schedule u with Dr. Mary, she can see u on Wed the 16th at 10:15.

Me: Would she have any later appointment that day? I can do 10:15 but later would be better.

Carla: can u do 1:30?

Me: Yes, that would be perfect!

…………………………

Carla: Ok Rachel umm tell me who was ur Dr. before​​?

Me: My previous doctor was Dr. Fred….I no longer go to that practice. I asked for them to communicate by email because of my disabilities, and the next day they sent me a letter discharging me from the practice (with no reason stated)…. They know that I’m weaning off Loraz and yet they will not communicate in a way that works for me, so I am in a very bad situation…
…………………………

Carla: ok Rachel umm the big thing is right now is to get ur records…from Dr. Fred’s office…why dont u get a hold of them and see if u can come pick them up and bring
them over here, what I will do is get a message to Dr. Mary, letting her know they are coming and get u on her schedule asap…Dr. Mary will need to see them before she can see you so she knows the course of your situation.

Me: If you can get the situation expedited that would be great. I can’t stress enough what a terrible situation I’m in. I’m withdrawing from medication without a safety net here.

Carla: ok rachel ill do what I can….

Given that Dr. Mary now had to get me “on her schedule,” I began to wonder whether I still had an appointment at all.

Later, Bob called to ask, and Carla said that no, I couldn’t have an appointment until they received my records. At this point, the reason for the delay had changed: I couldn’t have an appointment because they wouldn’t know which doctor to assign me. So, first I had an appointment, but after I told them about the situation with Dr. Fred, I got two different stories:

a) I could not have an appointment yet, because Dr. Mary didn’t have my full medical history.

b) I could not have an appointment yet, because without my full medical history, they wouldn’t know what doctor to assign me.

These contradictions didn’t feel right. After my experience with Dr. Fred’s office, my trust was low, and I had the uneasy feeling that something was awry. It was becoming harder and harder to trust people to treat me well. I felt very, very alone.

June 4, 2010
Bob went to Dr. Fred’s office to request my medical records. At first, he was told that we could have the copies in two weeks. When he told the receptionist that I needed them much sooner, she told him to call the office manager after 3 pm. He did so, and the office manager promised to copy the records over the weekend and have them ready by Monday morning.

June 5, 2010
I got a patient registration form and a medical history form from the website of Another Local Family Practice, printed them out, and filled them out carefully and completely.

June 7, 2010
Bob picked up my medical records from Dr. Fred’s office.

June 8, 2010
Bob dropped off my medical records, patient registration form, and medical history form at Another Local Family Practice, but he was unable to make an appointment for me. The receptionist said that Laura, the person in charge, would decide “what to do.” She would be back tomorrow and would call him then.

Neither Bob nor I understood the meaning of “what to do.” I was hoping against hope that they were just deciding on the right doctor, and not deciding whether or not they wanted to treat me, but I knew that the story was changing yet again, and that did not feel good.

By this point, my worry and my sense of powerlessness were crushing. Bob was fighting the good fight by phone. I was at the point of exhaustion. Being refused by one doctor after another was increasing my sense of isolation, and my withdrawal symptoms were worsening. By this point, they included anxiety, depression, moodiness, sadness, anger, crying in the middle of each day, physical pain, and continuing insomnia.

June 9, 2010
Another Local Family Practice had my medical file, my insurance information, and my entire health history, and they still wouldn’t give me an appointment. Laura told Bob that it was up to Dr. Mary whether she would accept me as a patient, and that Laura would call back tomorrow with her decision. When Bob pointed out that, just last week, Carla had told him that the office was accepting new patients and that they had given me an appointment with Dr. Mary, the story changed again: Laura said that the office is accepting patients only on a very limited basis and that the decision to give me an appointment belonged to the doctor.

Just in case you’re having trouble keeping track of all the ways in which the story changed, here’s a recap:

1. The office was accepting new patients and the receptionist gave me an appointment with Dr. Mary.
2. I could not have an appointment with Dr. Mary until she saw my medical chart.
3. I could not have an appointment with anyone until someone saw my medical chart and decided on the best doctor for me to see.
4. I could not have an appointment until Laura, the person in charge, decided “what to do.”
5. It was the doctor, not Laura, who would decide what to do.
6. The practice was accepting patients only on a very limited basis and only the doctor could decide whether I could have an appointment.

At this point, I was beginning to wonder why I had to beg a doctor to see me, especially with a disability, and especially in the midst of a medication withdrawal. The situation was becoming unbearable, and I was at the point of despair.

June 10, 2010
Still no decision from Another Local Family Practice. Bob called at 2:30 pm and left a message for Laura. She never called back.

June 11, 2010
At 8:36 am EDT, the other shoe finally dropped. Laura left the following message on Bob’s voicemail:

“Hi, this is Laura from Another Local Family Practice. I’m just calling to let you know that the doctor does not want to take on a new patient at this time, um…so, unfortunately, we won’t be able to accommodate you. We’ll leave your medical records so that you can pick them up…um…at the front desk…um…uh…Thank you. Bye Bye.”

Yes, the woman used the word “accommodate” (as in “won’t be able to”) with reference to a disabled person. Bob called the practice four times, and left a message for Laura each time, asking what was going on and why I had not been accepted as a patient. She ducked all of his messages and never called us back.

I was beyond scared. I could hardly see straight. I went over my taper schedule with Bob, and I began to panic when I realized that as I got down to lower doses, I might have to slow down, and might run out of medication, and might not have a doctor to help me. I couldn’t figure out how to get anyone to hear the seriousness of the situation, even though my very personable and persuasive husband was doing a very good job of stating my case.

I had never been so terrified.

Fortunately, on Sunday, June 13, Bob called another doctor—the wife of one of his colleagues. He had called just to ask for advice on how to navigate the labyrinth of locating a new provider, but when she heard what had happened, she gave me an appointment for Thursday (even though she was not officially seeing new patients). I went to the appointment, and she was great. She completely supports my tapering process, and we now have a couple of follow-up appointments.

The only drawback? Dr. Fred is the on-call person when she is unavailable. I was very depressed to hear this news, but Bob pointed out the irony: The man discharged me from his own practice, but if I call my new doctor and I need assistance, he has to provide it. It’s unlikely that the situation will transpire, but the irony is rather just.

© 2010 by Rachel Cohen-Rottenberg

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

I’ve been keeping track of the whole process I’ve gone through since first contacting my primary care doctor about weaning off my medication. Here are portions of notes, letters, voicemails, and emails that describe what happened during the very eventful and not-so-merry month of May.

May 4, 2010: Writing in advance of my appointment with my doctor
Dr. Fred became aware of my Asperger’s diagnosis shortly after I received it in November of 2008. My medical file also contained my full sensory assessment from January of 2009, and a letter in which I discussed the challenges of my autism with regard to a medical procedure that he wanted me to undergo. On May 4, I wrote another letter, this time in preparation for an appointment to discuss weaning off Lorazepam. Although I had been taking 2 mg/day of Lorazepam in the late winter, I was currently on a stabilization dose of 1.5 mg/day after attempting a near-cold-turkey withdrawal. In the letter, I described the impact of my withdrawal attempt, and I provided detailed information about benzodiazepines, how to do a Lorazepam-to-Diazepam crossover, and why. I also explicitly mentioned the potentially life-threatening consequences of a cold-turkey withdrawal or improper taper.

May 13, 2010: My appointment with my doctor
By the time I saw Dr. Fred for my May 13 appointment, I had changed my mind about doing a Lorazepam-to-Diazepam crossover. I had learned that I could safely do a direct taper using liquid Lorazepam, with the option of switching to Diazepam if it didn’t work. At my appointment, I gave Dr. Fred written information about using the liquid form of the medication. Bob was present at the appointment and helped communicate my needs to the doctor.

During the appointment, Dr. Fred stated that he was supportive of my original plan. When I gave him the information about the direct Lorazepam taper, he read it and asked me a number of questions about it. He then said that he would support this method as well, and that he was going to have to do some research about how the weaning schedule and dosages would work so that I could taper off safely.

We spoke about my concerns regarding the taper, especially my worry that I might experience a high degree of insomnia at some point during the process. I told him that being insomniatic was my greatest fear. When I spoke of my parents having consciously deprived me of sleep as a child, the doctor likened it to torture. Torture was the word he used. He understood why I was so traumatized regarding sleep, and we agreed that the goal was not necessarily for me to become entirely medication-free, but to wean off Lorazepam and still have relief from insomnia.

He also understood that my anxiety and depression tend to lift when I have deep, restful sleep. He assured me that he would not let me get anywhere near the point of being awake for days on end, and he said that he would prescribe anti-insomnia medication if that were my only alternative. I mentioned Silenor, a non-addictive anti-insomnia medication that had just come on the market. He said he’d never heard of it, but he wrote it down as an option for me. I said that I would do some research on it and see whether I thought it would work for me. I assumed that he would do the same.

From everything Dr. Fred said, it was apparent to both Bob and me that he understood the seriousness of my medication withdrawal, of my history of insomnia, and of my trauma issues. Talking to Dr. Fred during the appointment had been exhausting, but I left feeling that I had my doctor’s support. He told me that he wanted me to stay in regular contact with him during the Lorazepam taper so that he knew it was going safely for me. He also suggested that I make a follow-up appointment with him, and I made one for June 24.

May 24, 2010: Potential insomnia and my first request for email communication
As I thought about Dr. Fred’s concern that we stay in regular contact during the Lorazepam taper, I realized that I needed to request some way to communicate other than using the telephone. I no longer use the telephone because, cognitively speaking, I’m confused and exhausted by the whole experience, and my auditory processing system screams No! every time I even think about it.

So, I wrote a letter to Dr. Fred, which my husband hand-delivered to his office the same day. My letter covered the following two topics:

a) I requested a prescription for Silenor to have on hand during the Lorazepam taper in case the insomnia hit sooner rather than later.

b) I requested that if the office had email, I be able to use it for the purpose of making appointments, requesting prescription refills, contacting the doctor with questions, and so forth. I let Dr. Fred know that I had severe difficulties with using the phone, and that my medical care would improve if I had direct access to the office and could explain my own experience, without constantly using my husband as an intermediary. I asked Dr. Fred to respond by email (if he had email) or by leaving a message with my husband (if he didn’t have email). I supplied my email address in the letter.

When I wrote the letter, I figured that if Dr. Fred had Internet access in the office, it wouldn’t be a big deal to set up a free Yahoo or Gmail account so that I could reach him. If he didn’t have Internet access at all, I didn’t see any other choice at that moment than to have him send a message through my husband.

May 25, 2010: My doctor’s voicemail messages
Dr. Fred responded to my letter by calling my husband’s cell phone and leaving two voicemail messages. Here are the relevant portions:

Voicemail #1: Hi Bob. It’s Dr. Fred calling back. I just got a letter from Rachel and I was reading it. So…she talks about email and wanting to communicate that way. I know it’s rather stone age, but I don’t do emails with patients at this point. I’m going to ask if there’s any provision, if we have an office email that we might be able to use for that, but I will have to let you know about that part of it…Okay, and I’ll talk to you soon about the email. Thanks.

Voicemail #2: Hi Bob, Dr. Fred calling back…and again regarding the email: We do have an email address that Rachel can use. However, it is not checked regularly, and we have no other patients using it to communicate with us, so we do not check it on a regular basis. You know, in order to accommodate her request, she can write to us on it, but if she could also send a fax note or have you call or somehow call after hours and leave a message on our answering machine letting us know that yes, there’s an email there, we will check it. But it’s just not part of our routine to check on it, so she will need to give us an alert when she has something on the email for us to look at. All right, the address is ****, so again, she can use it, but again, the onus will be on her to alert us that there’s something for us to look at there. All right, thanks Bob, I hope that helps… Note that, at this point, Dr. Fred had my email address and declined to use it to communicate with me directly, even though I was the patient who had contacted him. Note that he also suggests that a) I use the phone when the point was not to use the phone, and b) I use my husband as an intermediary, when the point was to stop using my husband as an intermediary. His suggestion that I leave a message after hours meant that I would not have any access to him when he was actually in the office—something of a necessity in the middle of a medication withdrawal.

Wednesday, May 26: Real insomnia and my second request for email communication
I sent an email to Dr. Fred and, despite my complete opposition to the idea, had my husband call to alert him that it was there. In the email, I explained that the Lorazepam withdrawal process was speeding up because my body was becoming tolerant to the stabilization dose. I also let him know that I was already suffering from the effects of increasing insomnia, that my body desperately needed deep, restful sleep, and that I was attaching three pages of information about Silenor, for which I needed a prescription. I then took care to clarify my need for email communication:

Regarding using email…As I said in my letter, this is a disability and accessibility issue. I do not want to continue making Bob my intermediary to pick up messages or leave them for you, even if it’s just to inform you that I’ve sent an email. I’m capable of advocating for my own care given the right means of communication, and doing so is crucial to my sense of empowerment, my sense of dignity, and my sense of being a full and equal citizen. I do not have access to a land line or a fax machine, so I can’t signal you by fax that I’ve sent an email. And using the phone to call and let you know that I’ve sent an email really defeats the whole purpose, which is to stay off the phone! I know that to most people, it’s a small thing to call and leave a message on an answering machine, but it is not a small thing to me. It is very difficult and very stressful–rather in the same way that it would be difficult and stressful for a person in a wheelchair to drag themselves by the hands up a couple of steps and knock on the door to let you know they’re there.

All the best to you,
RachelMay 27, 2010: A letter from my doctor, sent by certified mail
On the day following my May 26 email message, Dr. Fred sent me a letter by certified mail. The letter was mailed exactly two weeks to the day that Dr. Fred had promised to stay in regular contact with me during my Lorazepam taper, to make sure that it was going safely, and to not let me get to the point of protracted insomnia:

Dear Mrs. Cohen-Rottenberg:

Yours sincerely,
Dr. Fred and His Office My husband, who had been a patient at the same practice for exactly the same amount of time I had, did not receive a discharge letter. My husband has since discharged himself from Dr. Fred’s care.

May 28, 2010: My receipt of the letter from my doctor
I received Dr. Fred’s letter on May 28, and when I read it, I felt like I’d been kicked in the head. By a doctor. In the middle of a medication withdrawal. From a drug he had prescribed. And did I mention I’d been sleeping badly? I’d been sleeping badly. It probably won’t surprise you to hear that both my sleep and my withdrawal symptoms got much worse very quickly. When I first received the letter, though, I just cried and cried and cried. I was shaking, terrified, and in shock.

Thoughts on patients’ rights and who makes the rules
From what I understand, guidance provided by the Vermont Board of Medical Practice stipulates that physicians give 30 days’ notice of termination and provide only emergency care during that time. There are no U.S. state or federal laws that require a physician to provide a reason for discharging a patient, nor is any physician required to continue a course of treatment, so long as the physician terminates the doctor-patient relationship “properly” (and in Vermont, “properly” appears to mean giving 30 days’ notice and 30 days of emergency care). In other words, being a patient in a doctor’s office is rather like engaging in at-will employment: there is no implied contract and the relationship can be terminated at any time. I’m not sure where the Hippocratic oath fits in here, but all this is news to me, and the news comes at a very bad moment.

In my opinion, only a typically abled person would think that 30 days is sufficient time in which to find a new primary care doctor. In fact, I think that such a typically abled person would probably also be living in a place in which there are many available doctors. In other words, I’d bet a bottle full of nickels that the Vermont Board of Medical Practice consists of typically abled people living in places with ready access to healthcare.

Unfortunately, I live in a small rural town in which most doctors’ practices are full. I also have communicative, cognitive, and auditory disabilities that keep me from being able to call one doctor after another, and I’m also in the middle of an exhausting medication withdrawal, which means that my stamina is very low. I am extremely fortunate to have my husband to help me, because without him, I don’t know how I’d even begin to find a doctor in 30 days. Even with his help, the process has been almost unbearably frustrating and painful.

Next in this series: Part 2, Turning to Previous Prescribers for Help

© 2010 by Rachel Cohen-Rottenberg