Archive for Depression

When Medications Do Harm

November 10, 2011 Rachel Anxiety, Depression, Medications, Sensory Processing Issues

S-O-S Best of the Best (BoB) is a collection of bloggers who come together once a month to write on one topic pertaining to “invisible” special needs, including ADHD, autism, anxiety, sensory processing disorder, and mental illness. I was asked to contribute a post for this month’s topic on the use of medications. The following excerpt from my new book, Blazing My Trail: Living and Thriving with Autism, discusses my experience of taking Lorazepam, a benzodiazepine, and the healing I’ve found since withdrawing from the medication.


My Experience with Lorazepam

“The biggest drug-addiction problem in the world doesn’t involve heroin, cocaine, or marijuana. In fact, it doesn’t involve an illegal drug at all. The world’s biggest drug-addiction problem is posed by a group of drugs, the benzodiazepines, which are widely prescribed by doctors and taken by countless millions of perfectly ordinary people around the world.”   — Vernon Coleman

In February of 2005, to treat an increase in my level of anxiety, my primary care doctor prescribed a medication called Lorazepam. Little did I know that taking this drug would send me on a years-long journey of coping with ever-increasing depression, fear, loss of functioning, and social isolation.

Fortunately, in 2010, I changed course and began walking a new road. I engaged in the process of learning about how the medication had affected my life, and I went through the ordeal of weaning off it. As a result, my high level of functioning, my independence, and my zest for life have all returned.

Medication Withdrawal and Other Delights
From early 2005 until early 2009, I took one 0.5 mg tablet of Lorazepam upon awakening in the morning and another before going to sleep at night. After I had been on the medication for four years, another doctor increased the dosage to 0.5 mg in the morning and 1.0 mg at night. By early 2010, I was taking 2.0 mg per day. A third doctor also put me on Zoloft (an SSRI) and Topamax (for migraine prevention), in addition to Lorazepam and Amitriptyline (a tricyclic antidepressant).

By the spring of 2010, I had begun to realize that the medications, far from helping me, were making it increasingly difficult to manage my life. I was crying almost every day and I was nearly housebound. So I began the process of weaning off all of them — without medical supervision. My primary care doctor had fired me from her practice after I asked for accommodations for my disability, and it took me over a month to find another doctor who would accommodate me and guide me through the weaning process.

Meanwhile, I was on my own.

Tapering off Zoloft, Topamax, and Amitriptyline posed no problem whatsoever. Quitting Lorazepam, however, was another story. After attempting to withdraw from Lorazepam by decreasing my dosage by 0.5 mg per week, I suffered an acute reaction. I began to
have a tremendous amount of anxiety, and my sleep worsened. After I stopped taking the medication altogether, I hardly slept for two nights. I was sweating through my clothes. I was crying and frightened. I was in so much physical pain that it was almost unbearable. I felt as though my body and mind were coming apart. I found myself pacing up and down the floors of our house saying, “Misery, misery, misery.” Without a physician to consult, I couldn’t understand why the withdrawal was having this impact.

With nowhere else to turn, I went online and looked up information on how to taper off Lorazepam without pushing myself to the edge of sanity. When I did, I found out that it’s a benzodiazepine and a tranquilizer. In other words, it’s in the same category as Valium and Librium, and it’s highly addictive. In fact, in 1975, the U.S. Department of Justice demanded that benzodiazepines be classified as schedule IV drugs under the Controlled Substances Act.

And yet, this medication had been prescribed for me by three different doctors — even after I had told them, in no uncertain terms, that I absolutely did not want to take anything narcotic or addictive. What part of that statement did they not understand? Or did they just not know what Lorazepam does?

As I soon found out, I was not alone in suffering acute withdrawal symptoms. According to Professor Malcolm Lader, member of the UK Committee on the Review of Medicines, Lorazepam is a particularly difficult drug to withdraw from. “When somebody comes into my office and says that they’ve been trying to stop their Lorazepam,” he said, “my heart sinks, because I know I shall have twice as much of a problem as getting them off, say, Valium. The symptoms are more severe, they’re more persistent, more bizarre, and people are much more distressed by them.” (Ashton, “A Problem”)

In my online travels, I found a support site for people seeking to withdraw safely from benzodiazepines — and I learned that, when done properly, the process takes six to 12 months. So, in early May of 2010, I put myself on a stabilization dose of 1.5 mg per day, and I found myself able to sleep and to tolerate being in my body again. After three weeks, I began tapering very slowly, cutting my dosage by very small decrements, until I finally finished my taper, under the care of a new primary care doctor, eight months later.

Suffice it to say that, even over the course of a slow taper, the withdrawal process was brutal. Every time I made a cut in my dosage, I experienced extreme amounts of muscle pain, insomnia, anxiety, depression, and exhaustion. I was determined to rid Lorazepam from my body, though, and by the grace of God, I have.

But the havoc this medication wrought over the years I took it is, unfortunately, an all-too-common effect of benzodiazepines.

Daily Interdose Withdrawals
Lorazepam is a short half-life benzodiazepine. On average, the dose reaches its peak blood levels in about seven to eight hours. As I came to understand how quickly the concentration of the drug in my bloodstream was falling each day, my experience of the previous four years started to come into focus. Because I had been taking the medication only in the morning and in the evening, I had been going through interdose withdrawals on a daily basis, with all the same symptoms that would attend my eight-month taper.

That’s right: I had been having withdrawal symptoms every single day for four years. No one had ever warned me about how the medication worked, so I couldn’t figure out why I was on such a physical and emotional rollercoaster ride. Nothing in my life seemed to account for it, and the only response from my prescribing doctors was to increase my dosage.

These increases did not work. In addition to the impact of falling blood concentrations, daily withdrawal symptoms occur because of the tolerance that the body develops, very quickly, to the drug itself. As Dr. C. Heather Ashton writes in Benzodiazepines: How They Work and How to Withdraw, these drugs “lose much of their efficacy because of the development of tolerance. When tolerance develops, ‘withdrawal’ symptoms can appear even though the user continues to take the drug.” (Chapter II)

Because they quickly become ineffective and trigger daily withdrawal symptoms, benzodiazepines cause a host of problems, many of which they were intended to manage. In early 2009, after four years of benzodiazepine use, I exhibited difficulties common to benzodiazepine users. I was crying on a regular basis. I was falling into a depression unlike anything I had ever experienced. My anxiety was nearly paralyzing. And I had become almost housebound. The outside world felt overwhelming, and going out triggered both fear and exhaustion.

All of these symptoms amount to a textbook case of the impact of benzodiazepines. In her research, Dr. Ashton determined that people who use these drugs become ill with a number of psychiatric conditions. “Many patients,” she writes, “find that anxiety symptoms gradually increase over the years despite continuous benzodiazepine use, and panic attacks and agoraphobia may appear for the first time after years of chronic use.” She adds that long-term benzodiazepine use can cause depression in people with no history of it and can aggravate depression in people already suffering from it. (ibid, Chapter I)

Heightened Sensory Sensitivity
As a person with autism, I found that all of the symptoms that attend benzodiazepine use were exacerbated by the impact of interdose withdrawals on my sensory functioning.

By early 2009, I was more sensory sensitive than I had ever been in my life. Sometimes, my skin felt like tissue paper; at other times, loud noises were enough to send me into physical pain that took me days to recover from. Light seemed very bright, and I began wearing sunglasses, even on winter days. I became overwhelmed by this sudden severe spike in sensitivity, and every foray into the outside world took all the courage and energy I could muster. My level of functioning decreased significantly. Most days, I just stayed home. I couldn’t figure out what was happening.

Then, I read Dr. Ashton’s findings on benzodiazepine withdrawal and sensory sensitivity. She notes that “a characteristic feature of benzodiazepine withdrawal is a heightened sensitivity to all sensations — hearing, sight, touch, taste and smell. When extreme, these sensations can be disturbing.” She describes one woman needing to stop all the clocks in her house because their ticking seemed unbearably loud. Others have had to wear dark glasses because ordinary light seemed “dazzlingly bright.” (ibid, Chapter III) I’d finally found an answer to the question of why my sensory sensitivities had increased so dramatically in a relatively short period of time: the daily interdose withdrawals were sending my already acutely sensitive system into overdrive.

After four years of benzodiazepine use, I could barely socialize at all. I felt very isolated and I suffered from severe levels of stress that were lowering my levels of functioning. As I learned about the havoc that these drugs wreak, I considered myself lucky to be tapering off them before they stole any more years from my life.

Recovering from Benzodiazepines
The good news is that my functioning and my quality of life have improved dramatically since withdrawing from Lorazepam. Just halfway through a difficult taper, I found my mind becoming clearer and my mood lifting. I felt more physically and emotionally resilient than I had in years.

As my taper progressed, I began to feel alive again. I still had my sensory-sensitive “I don’t want to go anywhere” days, but even on those days, I forced myself to go out for a walk, just to keep intact my connection to the world. In so doing, to my great surprise, I found my connection to the world not limited to human beings, but to all of creation. I began to walk and appreciate the trees, the colors, the breeze blowing — even the humid weather of a New England summer. I carried my camera with me everywhere and I took pictures that enabled me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world became a fascinating place. Ultimately, I entered three of my best photos in a local contest, won second prize, and had the pleasure of seeing my work displayed in town with that of other photographers.

Since I’ve withdrawn from the medication entirely, the positive effects have only increased, and my sensory sensitivities have quieted down appreciably. I go out every day, in any weather, even in winter. I’ve made new friends and rekindled relationships with old ones. The depression and agoraphobia are both entirely gone, and my high levels of functioning and independence have returned.

My experience is not unique. In 1991, Karl Rickels, a researcher at the University of Pennsylvania School of Medicine, reported that patients who had gotten off benzodiazepines were doing “significantly” better than those who had failed to do so. A few years later, he found that after long-term users withdrew from benzodiazepines, they “became more alert, more relaxed, and less anxious, and this change was accompanied by improved psychomotor functions.” (Whitaker, 136-137)

As for Dr. Ashton, she found that agoraphobia in her patients disappeared within a year of withdrawal, even in patients who had been housebound. Furthermore, most users experienced a dramatic increase in quality of life after withdrawal:

“Clinical experience shows that most long-term benzodiazepine users actually feel better after coming off the drugs. Many users have remarked that it was not until they came off their drugs that they realised they had been operating below par for all the years they had been taking them. It was as though a net curtain or veil had been lifted from their eyes: slowly, sometimes suddenly, colours became brighter, grass greener, mind clearer, fears vanished, mood lifted, and physical vigour returned.” (ibid, Chapter II)

When I was on benzodiazepines, my emotions were scattered, my sensory sensitivities were through the roof, and I found it difficult to think clearly. Since I’ve stopped taking them, my emotions have become much more moderate, positive, and under my control; my sensory sensitivities have become much more manageable; my thoughts have become sharper by the day; and, best of all, my passion for living has returned.

References

Ashton, C. Heather. “Benzodiazepines: How They Work and How to Withdraw.” benzo.org.uk. August 2002, revised. Accessed 21 June 2011. http://www.benzo.org.uk/manual/

—-. “A Problem with Lorazepam?” benzo.org.uk. 1988. Accessed 21 June 2011. http://www.benzo.org.uk/ashloraz.htm

Coleman, Vernon. Life without Tranquillisers. Large print ed. Bath, England: Chivers, 1990.

Whitaker, Robert. Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America. New York, NY: Crown Publishers, 2010.

© 2011 by Rachel Cohen-Rottenberg

20 comments

On Doubt and the Doubters

January 15, 2011 Rachel Ableism, Depression, Diagnosis, Disabilities

First, they ignore you.
Then, they laugh at you.
Then, they fight you.
Then, you win.
—-Mohandas Ghandi

Most of us who discover our place on the spectrum later in life go through a period of self-doubt. We think “Well, I fit the criteria, and I identify with the experience of other Autistic people, and it explains just about everything about my life, but…but…but…Really? Me?” If you’ve gone decades without a diagnosis, and then you discover that everything fits, the result can be a combination of euphoria (“At last! I’ve found my kin! And a Unified Theory of Me!”) and extreme self-doubt (“But if I passed for typical this long, can I really be Autistic? Maybe everyone was right, and I’m just plain freakin’ nuts.”)

We Autistics are not the only ones who have to deal with this sort of doubt. Lots of autism parents have to deal with it as well, especially when their children do not fit a narrow stereotype. Parents may feel, at first, that they are overreacting to their children’s atypical behavior (“Hey, I was an awkward, quiet, geeky, early reader, too! What’s the big deal?”) even as they see their children struggling in ways that they themselves did not (“Yeah, but I don’t remember scratching my face in paralyzing anxiety over going to grandma’s house”).

So it’s a process for all of us.

It would be a lovely world if people would just leave us alone to deal with our doubts in peace, wouldn’t it? But, of course, that would be asking too much. To make a life-changing moment in our lives even more fun, enter the doubters. You know who they are. Sometimes, they’re well-intentioned people who are just trying to cheer us up. They say things to parents like, “Your kids are not Autistic. They’re just quirky and shy!” Sometimes, they’re otherwise respectable professionals who, for reasons I can’t yet fathom, say things to parents like, “Your kids are not Autistic. They’re just quirky and shy. So, please stop bilking the school systems of $50,000 a year on behalf of your weird but otherwise neurotypical children. Take a chill pill, and return that money to the outgoing, conventional kids who rightfully deserve it.”

Needless to say, many of us Autistics put up with the same sort of thing. There are the people who try to make us feel good by telling us that we don’t seem so, you know, weird. They say things like, “But you seem so normal! You can’t possibly be Autistic.” Apparently (and please correct me if I’m wrong), this is supposed to be a compliment. (NB: It’s not.) If they’re being slightly more diplomatic, they might say things like, “Are you sure? After all, you’re happily married. With children. And you can write. And speak. And have insights!”

It gets real tiring, real fast. After all, the only way to convince such people that what you’re saying is true is to take out a laundry list of everything that’s “wrong” with you or your kid. What a great topic of conversation! Doesn’t everyone want to talk about what they can’t do rather than what they’re actually good at? Don’t all parents want to keep repeating the list of their children’s difficulties, ad nauseum? Don’t we all want to blow our privacy to hell, just to convince people that we’re not lying, stupid, or unable to see what’s in front of us? And it especially sucks that we have to defend ourselves when we’re just a wee bit tired from coping with the disability itself, if you know what I mean.

And then, of course, there are the real nasties out there—the ones who call anyone who can write, speak, choose their friends, carry on a relationship, work a job, make a video, raise children, or live independently “fake Autistics.” I find the ignorance and meanness of these kinds of statements appalling. I understand that people are angry, stressed, sad, and overwhelmed for any number of reasons, but get a grip. How can anyone make such pronouncements? The criteria they’re using are not a reasonable basis for a diagnosis, to put it mildly, and carrying out diagnostic assessments on complete strangers over the Internet is not exactly a responsible practice.

One of the ways that many of us try to resolve our doubts—and get other people to please shut up now—is by getting an “official” diagnosis. And, I know for certain that an “official” diagnosis goes a long, long way. I got diagnosed very early in the process of discovering Asperger’s, and it was very liberating to have a third party listen to me and validate my perceptions. In fact, when I tried to thank the specialist who diagnosed me, he said, “You really don’t need to thank me. You’d already used your insight to figure it out before you walked in the door.”

I know that without an “official” diagnosis, we can feel a lot of nagging doubt. And so, people often look to a specialist to remove these doubts. And sometimes, I think, it works. For me, it didn’t. It went a long way, but it didn’t erase all doubt immediately. Certainty took awhile to arrive. I needed to integrate my new understanding into my sense of myself before I really felt sure. I had way too many stereotypes of autism in my head to root out, and I had to recover from way too many years of minimizing my difficulties. It was a process.

What worked for me was writing my book. I was able to go over my whole life—everything I’d gone through, everything I’d felt, every way I’d coped, all the ways I’d faked it, all the things I’ve done so well—and in the process, everything came together in such a way that the question of “Really?” was laid to rest. And even better, I was able to be honest and proud of being who I am. I don’t mean proud of my accomplishments. I mean proud of who I am.

But even with a diagnosis, the doubts expressed by others often refuse to go away. There are people who call autism the “diagnosis du jour.” There are people who think that because we can do some things, we can do all things. There are people who will never understand that some things cannot be overcome by willpower. There are people who think that a child in the middle of a meltdown is just being a bad kid. There’s really no end to the things that people will say to any of us, and having an “invisible” disability just compounds the problem. After all, for the most part, many of us look for all the world like typically able-bodied people. We look just like the people doing the doubting. If we look like them, they think, how could we not be like them, think like them, experience the world like them? After all, it just takes a little effort, and clearly, we’re not rising to the task.

They think that what they literally see before their eyes is the whole picture. Apparently, we Autistics aren’t the only ones who get hung up on visuals—not by a long shot.

Unfortunately, there are no proven treatments for this kind of denial. There are only coping mechanisms for those of us who are the objects of it. Here’s how I’m working on the problem:

1) I am getting increasingly clear on the fact that, unless it’s in the context of official paperwork, it’s ethically wrong to ask a disabled person to prove a disability. I’m also coming to understand that it’s equally wrong to go about explaining myself. It feeds the monster, and it gives away my power, big time, when I need to conserve my energy for more productive things, like enjoying my life.

So how to answer back? A while ago, I read a piece by a disabled woman about how she responds to people staring her down when she parks in a handicapped space. When they see her walk out of her car and say to her, “But you don’t look disabled,” she says, “And you don’t look like a doctor!” Then she moves on. I think we would do well to answer the doubt and denial that come our way with a similar response.

2) When I encounter doubt from anyone, I’ve started imaginatively referring the doubter to the specialist who diagnosed me. That is, for those who want to question whether I’m Autistic (and, by implication, whether everyone like me is Autistic), I have at the ready the following statement: “You know, if you don’t believe me, take it up with the specialist who diagnosed me, because I really don’t need to spend any time on this subject.” Being able to mentally offload the question onto the diagnostician has been a major, unexpected benefit of having an “official” diagnosis.

3) I’ve begun to understand why the doubt can settle in and feel so upsetting, especially to Autistic people. Many of us, because we’ve lived with a lot of bullying and social rejection over a number of years, can develop something called “reactive depression.” One of the hallmarks of this kind of depression is a tendency to be extremely self-critical and apologetic. So when someone says, “You’re not really Autistic,” it can set off a chain reaction in which our first response can be “Oh, wow, I didn’t mean to take up too much space, or to ask for too much attention, or to take myself too seriously, and maybe I really ought to examine this whole thing again, and oh my, I’m so sorry to have bothered you with it at all.” Then, we get back into another loop of “Am I, or am I not?”

The doubts of others don’t inflame doubts in me anymore, mainly because I can tell the difference between a question that triggers an old, unhealthy response, and a question that signals that I seriously ought to look at something. Questions about whether I am who I say I am don’t fall into the category of friendly questions, and so I’m always aware that they’re simply triggering.

At this point, the ethics of doubting a disabled person’s self-identification come in again: It’s absolutely unethical, in the extreme, to inflame self-doubt in a person who has already been bullied and rejected enough to have self-doubt be an habitual, destructive response. Some people don’t know they’re triggering this response, and these people need to be gently told to end their line of questioning. Others are simply lashing out and are only too happy to trigger a whole series of unhappy responses. These people need to be told, in no uncertain terms, to STFU—and that can mean simply walking away and refusing to engage.

We don’t have to let the chain reaction of self-doubt and apology happen, over and over. It’s just a habit. Habits can be broken, especially when you have the support of a community that understands what’s going on.

Clearly, the whole question of how to talk back to doubt and denial is still a work in progress for me, and I’m very much at the beginning. Describing the problem and starting to brainstorm solutions has been very strengthening, though. I’ve moved out of the mode of explaining, and into the mode of strategizing about how to deflect and keep moving on.

How do you feel about the kinds of doubt and denial you’ve encountered? And what are the strategies you’ve used to deal with them?

© 2011 by Rachel Cohen-Rottenberg

49 comments

Autism, Insomnia, and Pharmaceuticals

May 16, 2010 Rachel Childhood, Depression, Happiness, Medications, Sleep

Disclaimer: In this post, I’m going to describe my ongoing experience with pharmaceuticals and my process of weaning off them. I speak only for myself, in the knowledge that each medication affects each person differently, and that the process of weaning off medications is unique to each individual. In other words, everything I write here is descriptive of my own experience and is not intended in any way as a form of advice.

Despite the severe symptoms that accompanied my abortive attempt at Lorazepam withdrawal, my progress with weaning off my other meds has been going very well. In fact, except for the Lorazepam, I have stopped taking all of them. In April, I went cold turkey off Amitriptyline (which I’d been taking for over 20 years) and weaned off Topamax (which I took for a truly horrible six weeks). On May 1, I began the process of weaning off Zoloft, and took my last 25 mg dose on the evening of May 14. Last night was my first Zoloft-free night in seven months, and wow, do I feel better! On May 4, I began stabilizing on 1.5 mg of Lorazepam per day in three .5 mg doses, and that seems to be going well.

When I was taking both Zoloft and Lorazepam, I was sleeping about 6-7 hours/night. Last night, with no Zoloft (and only Lorazepam), I slept for 8 hours and had a series of very powerful and vivid dreams. And I woke up happy! And energetic! Without an anti-depressant! Can you imagine? In researching the side effects of various medications, I learned that Zoloft can cause insomnia (!), so it wasn’t exactly the best thing for me to take, given that my main challenge is, um, insomnia.

Isn’t it amazing that I’ve figured this stuff out in the absence of a medical degree? It’s astonishing what you can do with an Internet search engine and the ability to read.

I’ve also found that weaning off Zoloft (and other SSRIs) can cause “discontinuation syndrome” (which sounds suspiciously like a euphemism for “withdrawal” to me). This “syndrome” can start 1-3 days after the last dose and can include irritability, agitation, anxiety, insomnia, dizziness, vertigo, lack of coordination, nausea and vomiting, and flulike symptoms such as fatigue, lethargy, muscle pain, and chills. You’ll notice that the subtle side effects of acute Lorazepam withdrawal (seizures, acute suicidal ideation, and death) do not appear on the Zoloft withdrawal list, so I feel confident that I can weather the Zoloft discontinuation for however long it lasts (and may it not last long).

As for weaning carefully off Lorazepam, I’m going to wait until the Zoloft withdrawal is over. Otherwise, I won’t know how much is due to the Zoloft withdrawal and how much is due to an overly confident Lorazepam taper. The good news is that my regular doctor has been a gem about this whole process. I sent her information about how I can very, very gradually taper off Lorazepam, and she’s completely supportive of what I want to do. She’s going to do her homework so that she makes sure I’m tapering slowly enough and at the right doses. And she also plans to stay in regular contact with me as I go through the process, which will take several months. She knows that weaning off benzodiazepines is no fun. At all.

Of course, at some point, I will get to so low a dose of Lorazepam that I’ll start to experience insomnia. This is the part of the whole process that scares the living shit out of me. My insomnia (first controlled by Amitryptiline in 1987 and now by Lorazepam) began in early childhood and was induced by protracted trauma that included consistent sleep interruption and deprivation. Very, very bad stuff. Coping strategies aren’t enough. I have many coping strategies, but the only thing that has ever helped me overcome the insomnia is medication. Fortunately, the other doctor at the family practice is very keen on homeopathic and other natural remedies, so he is going to help me try a non-pharmaceutical alternative when the time comes. If the natural remedies don’t work, however, I am going to get a prescription for a new medication called Silenor, which treats insomnia and is not addictive. It seems to be based on a tricyclic anti-depressant (similar to the Amitriptyline I used to take, but without many of its side effects).

I’ve come to realize that the goal here is not to be medication-free. The goal is to be able to sleep. Of course, if I can do that without pharmaceuticals, all the better, but I can’t be a purist. Without sleep, I have no quality of life at all.

Which leaves me wondering: how much of my insomnia is due to autism and how much is due to trauma? I’d like very much to hear what your sleep patterns are like and what your challenges have been—whether or not you have a trauma component thrown into the mix. Hearing from other autistic people about sleep will help me start to get more clarity on how to separate the effects of trauma from the effects of autism. Of course, to some extent, I can’t separate them. The trauma was even more acutely damaging given my autistic sensory and emotional sensitivities, and given how acutely the ordinary world affects me, the autism itself can cause my system to feel very traumatized. Nonetheless, I would like to understand the origins of the insomnia as well as I can, and hearing about your experiences would be very helpful.

© 2010 by Rachel Cohen-Rottenberg

9 comments

Okay, So I Really Am Disabled. Now What?

February 11, 2010 Rachel ASL, Communication, Depression, Diagnosis, Disabilities

Two weeks ago, I had an experience that was life-changing. It was so intense that I haven’t been able to write about it until now.

It was a Thursday afternoon, and I had spent two hours working at the nice, spacious, quiet new thrift store. I like working there, and the staff gives me good, tactile, straightforward things to do—like tagging items, stamping bags, pricing books, and so forth. Now that I’ve told them that I sew, they’ve been sending me home with quilts in need of repair, and I’ve been having a wonderful time bringing them back to life. For example, here are before and after photos of my latest quilt renovation project:


























So, anyway, back to the day in question. That day, I decided to wear only my earplugs to the store, and to take them out when I wanted to talk with people. For awhile there, the Zoloft seemed to be helping my sensory sensitivities and language processing issues, so I was feeling confident. Unfortunately, moderation is very hard for me. When my power switch is turned to “On,” it gets stuck, and it takes something rather harrowing to get it turned to “Off.” As a result, on this particular day, I had a 5-10 minute conversation with one person, and listened to another 5-10 minute conversation between two other people, and talked with my friend Tom (who has auditory sensitivities similar to mine, though not as severe). In other words, I was chatty.

Then I came home and felt like I was getting the flu. I mean, everything hurt. Everything. My joints. My muscles. My skin. My stomach. My head. I told Bob how I felt, and he thought I was getting the flu, but I knew it wasn’t the flu. It was the stress of talking, listening, translating, falling behind, talking, listening, translating, falling behind, talking, listening, translating, falling behind, over and over and over and over and over until I couldn’t think straight anymore. It’s as though the stress were radiating to every part of my body. I’ve felt so often over the past year as though I were getting the flu, but then I take a day or two to myself, and I feel better. So I finally figured out why I was getting sick.

Once my nervous system calmed down, I decided that I had to grasp the bull by the horns before it gored me to death, so I wrote the following email to the lovely managers and volunteer coordinator at the store (titled “Working Around My Disabilities”):

Hi all–

I plan to be working at the store this coming Wednesday and Thursday, and then to switch to Tuesdays and Thursdays in the following weeks. I will need to come in from noon-2pm (rather than 11 am -1 pm), because I’m needing my mornings for better self-care. Please let me know whether those hours will work for you.

When I come to the store, I’d like to communicate with written notes as much as possible. Don’t get me wrong—I absolutely love talking with all of you—but talking and listening are getting more and more difficult. Everything in me just wants to be “normal” and chat it up with everyone, but I overdid it last week and came home with muscle pain and body aches. My body seems relentlessly committed to reminding me that my autism and sensory processing issues are disabilities (even though I look pretty typical, even to myself) and that I need to take care.

See you on Wednesday…

Love,
Rachel

When I got back to the store the following week, I wore my earplugs and my headphones, and I knew that I could not remove them for any reason. The store managers were totally cool about it and communicated with me via notes. They love the work I’m doing on the quilts, they’re glad to have me at the store, and all is well with that part of the world.

Except, of course, that my last piece of denial is in shreds—the piece of denial that says, “Oh, come on. You can talk. You can listen. How hard can it be?” It’s hard. Unless it’s a one-to-one conversation with a close friend, a fellow Aspie, or a family member, it’s a non-starter. Completely. I know it. And knowing it makes me feel both incredibly relieved and very depressed.

The thing about being autistic and not finding out about it for 50 years is that I’ve had a lot of practice at looking around at all the things that interest me and thinking about how much fun they would be to do. Despite the fact that the world is quite overwhelming to my senses much of the time, I find the things that people do quite interesting. In fact, except for accounting and flipping burgers, there is very little in life that I don’t find interesting. I’d love to know how to cut people’s hair. I’d love to know how to repair a car engine. I’d like to know how to play soccer. I’d like to speak five different languages. I’d like to walk into a situation with people and talk to them. My brain looks at things and thinks, “That looks like fun.” And then I try to do them and find that they involve extended interactions with other people, and that’s all she wrote.

So, I now understand that I’ve got a serious disability going here, and I realize that I must tell people what I need without feeling ashamed or apologetic. I have no choice. I must advocate for myself and ask for the accommodations I need. With this reality in mind, I went to my appointment at VocRehab yesterday, and had a very good conversation (in writing and a bit of ASL) with my counselor Will, who is Deaf. I filled out a bunch of paperwork, and we discussed the kinds of jobs I might be interested in. I still have to have my application for VocRehab services approved, but I don’t think I’ll have any problem there. [UPDATE: I'm approved! In response to an email I sent asking how long the approval process would take, Will wrote, "You are eligible for VR services based on the medical information that I already got from you. Clients who are interested in work and have a documented disability/employment barrier qualify for our services."]

All in all, it was very helpful to be working with Will and seeing how comfortable he is with himself and how empowered he feels. It gave me a lot of strength. Plus, the office is so spacious and quiet, and the people there are so friendly, that I felt pretty good by the time I left (taking into account, of course, how tired I felt from interacting with people in general).

So, there you have it. I’m seeing the reality of my life more and more clearly, but I’m not seeing what lies ahead. It’s a hard place to be standing. I’m hoping that I can get a clearer sense of how to shape the next part of my life.

© 2010 by Rachel Cohen-Rottenberg

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