Archive for May 31, 2010

In Celebration

May 31, 2010 Rachel Aging, Communication, Spectrum Pride

When I gave birth to my daughter, I was 34 years old. I remember quite clearly watching the nurses weigh and measure her. I remember how loudly she was yelling when they bathed and swaddled her. I remember how calm and quiet she became when they put her into my arms for the first time, because she could once again hear the familiar sound of my heart.

And I remember thinking, “She’s brand new. We’re at the beginning. When she’s 18 and ready to leave home, I’ll be 52. I’ll be so old! That’s forever away.”

And this year, I’m 52, and my daughter is talking about going to California after she graduates high school.

Please be assured that this post is not another meditation on how fast the time goes, or how brief it all is, or how hard it is to let go, even though all of those things are true.

This post is about reaching a crossroads, about making a commitment, about finding the strength to face what comes. It’s about doing all the same things I did on that day that my daughter was born, except that now I do them in celebration of my own birth and my own life.

It used to be that I hated thinking about my birth. It reminded me of my parents. It wove me back into the fabric of who they were, because I had to remember who gave me my body, my eyes, my face, my DNA, my life.

But now, suddenly, I want to celebrate by giving myself the only gift worth having: the gift of myself.

Yeah, I know that sounds hokey, but I am not in a hokey mood. Far from it. I’m not talking about a kind of New Age “love and embrace the special soul that you are” moment. I’m not talking about a kind of religious “I, too, am a child of God” moment. And I’m definitely not talking about a psychotherapeutic “I am lovable and worthy of love” moment.

No, I’m talking about something much more fierce and powerful than that. I am making a commitment to take myself back. Here is my declaration of intention, toward which I will strive with all of my ability:

I will no longer do anything that hurts my body, whether other people understand or not. If speaking hurts, I will not speak. If hearing hurts, I will not hear. If being touched is beyond my ability to tolerate, I will not be touched.

I will not attempt to shoehorn myself into some model of non-autistic consistency, in which if I can speak sometimes, I must speak always, and if I can hear sometimes, I must listen always, and if I can be touched sometimes, I must accept touch always. Those days are done.

Sometimes, I will speak and I will listen with my ears, only because sometimes, in specific situations, with specific people, at specific moments, when I’m calm and rested, and a million other factors that I can’t define come into play, everything comes together and it doesn’t hurt. I can’t always predict those moments, but I will recognize them when they arrive, I will choose to engage them with integrity, and I will not be pressured into doing otherwise, by anyone.

I will protect my health by communicating with others in a way that works for me, even if it takes time and other people would like me to go faster. When doing business out in the world—at the grocery store, at the bank, at a tag sale, anywhere—I will use my iPod Touch and any other appropriate assistive technology at my disposal.

I will no longer be a victim, living in fear, apologizing for who I am, and meekly asking other people to accept me.

I will live with all the fierceness and fighting spirit I’ve had from the day of my birth, and I will not turn them over to anyone.

I will insist upon my right to be treated as a complete human being, in all times and in all places, and I will not back down.

© 2010 by Rachel Cohen-Rottenberg

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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

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Disabled Like Me: An Autistic Woman in Search of Kindred Souls

May 11, 2010 Rachel Communication, Community, Disabilities, Friendship, Self-Advocacy, Spectrum Pride

Last night, I wrote the following article for submission to my local weekly paper. I’d like to get your comments, feedback, and constructive criticism before I send it in. Please let me know what you think.

Disabled Like Me: An Autistic Woman In Search of Kindred Souls
by Rachel Cohen-Rottenberg

If you are a typically abled person, you and I may have a great deal in common. I am married to a wonderful man. I have a teenage daughter getting ready to spread her wings. I love taking long walks in quiet places. I lose myself in creating things of beauty. I knit, I quilt, I sing, and I write. I try to eat healthy food, to exercise every day, to treat people with kindness, and to give a friendly hello to my neighbors.

Sometimes, I succeed. Sometimes, I don’t. In this regard, I am no different from you.

And yet, if you are a typically abled person, we live worlds apart. You see, I am autistic, and there are many things that I cannot do. I cannot go to parties or to restaurants; when too many people talk at once, I can’t distinguish one voice from another, and I become overwhelmed. I can’t go into stores with music playing and talk with others, because I can’t filter out background noise. In fact, there are stores in town that I cannot enter at all. The music is so loud that it assaults my nervous system and literally renders me incapable of thought.

I am able to speak, but sometimes, I have difficulty following the words that other people say. For this reason, talking on the telephone is an experience that I avoid at all costs. I have an extensive written vocabulary, but initiating and maintaining a typical social conversation is often beyond my grasp. Sometimes, I can’t find the words at all; at other times, I can’t find them quickly enough. Even when I find the words, I sometimes need to rest for hours or days afterward in order to recover from the effort.

Then again, there are people with whom I “click,” with whom talking is not a particularly difficult challenge at all. And then there are people with whom I am quite comfortable being almost entirely silent.

Despite my challenges, I do not consider myself a collection of deficits. In fact, I consider my autism my greatest strength. I am acutely empathetic and highly sensitive to all things emotional. I experience the visual world quite vividly and intensely. I have a childlike innocence that I value deeply. I am very direct and honest. I do not understand deception or cruelty. I think associatively and visually, and I arrive at insights and solutions impossible to locate with linear logic. I’m creative, intellectually curious, and fascinated by the diversity of the world. Much goes on beneath the surface.

Unfortunately for all of us—for you and for me—the word autism carries a stigma. I can’t count the number of times I’ve told someone I’m autistic and received a response along the lines of “Oh, I am so shocked and so sorry.” I’ve had friends back away. I’ve had potential allies in the community drop out of sight. I’ve seen people stare rudely at the noise-blocking headset I sometimes wear in public, and then I’ve seen them look away quickly, without a smile, without a wave, without acknowledgment that I am just like them, as though my disability has trumped my humanity.

In the year and a half since my autism diagnosis, I’ve learned firsthand what it means to be disabled. I’ve learned what it means to be invisible, to be marginalized, to be apart, to not be able to keep up, to not be understood, to not be seen as a person of equal value. I’ve known deep loneliness and isolation, and I’ve learned that these experiences are shared by many disabled people, whether our disabilities are visible or not.

I am fortunate in having a husband and a daughter who love me, friends spread throughout the country who support me, and places in the local community in which people welcome me as I am. And yet, I long for the friendship of other developmentally atypical people. I see other disabled people around me, and yet, I have not found a way to reach out directly. My sensory and communicative differences make reaching out problematic. And then, of course, there are people in the community with invisible disabilities, who look “typical” but experience the world in atypical ways. How are we to find each other?

I don’t know a better way than to write, so I am reaching out now, in the best way that I can. It matters not how old you are, what your disability is, or at what “severity” level a medical professional has diagnosed you. I am reaching out to say that I am here, that I would like to find you, and that I would like to affirm and celebrate who we are.

If you would like to connect, you can reach me by email at rachel@journeyswithautism.com. And if you see me around town, feel free to give me a friendly smile and say hello. It will mean the world to me.

Rachel Cohen-Rottenberg is a writer living in Brattleboro. Her memoir The Uncharted Path: My Journey with Late-Diagnosed Autism will be published later this year.

© 2010 by Rachel Cohen-Rottenberg

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Oh, Hell: A Cautionary Tale about Meds

May 2, 2010 Rachel Doctors, Medications, Survival

I was going to write a post about just one of my medication horror stories, but I now have two medication horror stories, and the second story is even more troubling than the first. I’m writing about these experiences partly to vent, but mainly to provide information about how some of the meds my doctors have prescribed have caused some very serious problems.

Topamax
I’ve written about my terrible experience with Topamax in a previous post, but I left out the scariest part of the whole ordeal. To recap, here are the side effects I experienced when taking Topamax to prevent migraine headaches:

Nausea 24/7
Complete loss of appetite
Sudden and unwelcome weight loss
Loss of balance and motor coordination
Falling asleep in the middle of the day
Feeling like a toxic mess inside

In the middle of all these side effects, something happened that was potentially life-threatening. We were in New York City, and I was taking a shower, when I turned to reach for the soap and slipped. I fell in the tub, and then I fell out of the tub. I had never slipped in a bathtub in my entire life, and I realized only later, as I watched my balance and motor coordination deteriorate, that the Topamax had caused it. The one thing that saved me from serious injury was that I had studied karate for several years and had learned how to fall safely. So, I instinctively kept my head up and my hands up, and rolled my torso onto solid ground. I was left with sore hips and shoulders for a few days, but given that I could have sustained a serious head injury or broken bones, I consider myself very lucky.

I have now weaned off Topamax and will never, ever take it again. I’d rather have the migraines, and that’s saying a lot.

Lorazepam
WARNING! WARNING! WARNING!
Don’t ever take Lorazepam unless you are dying, it helps with the anxiety, and you will never need to withdraw from it.

I have taken 1-2 mg/day of Lorazepam for about 5 years now, and had no idea that it created physical dependency until last week. Yup, that’s what I said: physical dependency. In fact, it’s been prescribed by three different doctors, and each time, I told them directly that I absolutely could not take anything narcotic or addictive. What part of that statement did they not understand? Or did they just not know what Lorazepam does?

After attempting to withdraw from Lorazepam myself, I suffered an acute reaction that was far worse than any withdrawal reaction I’ve ever had from any other med. I hardly slept for two nights. I was sweating through my clothes. I was crying and frightened and in so much pain that it was mentally and physically unendurable. I felt like my body was coming apart. I found myself pacing up and down the floors of our house saying “Misery, misery, misery.” I couldn’t imagine why it was having this impact. Then, I looked up information on how to taper off the Lorazepam in order to avoid pushing myself to the edge of sanity, and I found out that it’s a benzodiazepine and a tranquilizer. In other words, it’s in the same category as Valium and Librium. It’s addictive. There are many people who want to get off benzos, who know that they’re having no positive effect, but who can’t because the physical withdrawal is so unbearable.

Because I highly value my sanity, I’m back on about 1 mg/day now and can finally sleep and tolerate being in my body. I found a great support site for people withdrawing from benzos, with instructions for how to withdraw from Lorazepam using (ugh) Valium. My next step will be to try to find someone who knows what they’re doing to monitor me. Wish me luck, because I’m not feeling a great deal of trust in medical professionals at present.

My Future with Meds
After the hellish insomnia of last week, I remembered the constant, intractable, trauma-induced insomnia of the first 29 years of my life. It was awful, and I never want go back to that. I used to take a non-addictive tricyclic anti-depressant to help me sleep, but it stopped working. Decades of psychotherapy did nothing to help the insomnia; the tricyclics really gave me my life back. The benzos help me sleep, but obviously, they’re not a long-term solution. I’m beginning to feel that the insomnia is really at the root of my anxiety and depression. When I sleep well, my anxiety and depression start to fade. I’m starting to accept that I might need to take medication for insomnia for the rest of my life, but I have to find a non-addictive alternative.

If, in fact, a prescription medication is the only alternative, I’m not going to another doctor and saying, “So, what can you prescribe for me that won’t be addictive?” I’ve tried that. It didn’t work. Instead, I’m going to research alternatives, find the one I want, walk into my doctor’s office, and say, “Write me a prescription for this one.”

From now on, I’m doing my homework.

© 2010 by Rachel Cohen-Rottenberg

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