Archive for June 29, 2010

My Father and Selective Deafness

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

Happiness

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

Medication Withdrawal and Other Delights

My withdrawal from the anti-anxiety medication Lorazepam continues, and it’s been a bumpy ride, to say the least. I am doing a slow taper, so no more near-cold-turkey attempts. Since May 4, when I began a stabilization dose of 1.5 mg/day, I’ve reduced to 1.375 mg/day and to 1.25 mg/day. Today is my third day at 1.25 mg, spread out over five .25 mg doses per day.

I’ve decided not to cross over to Valium and taper from there. Introducing a new drug into my body, with its sensitive neurology, does not seem like a wise idea. It’s very difficult to directly taper off a short half-life benzodiazepine like Lorazepam, but I am determined. On average, the dose reaches its peak in about 10 hours (though, in my body, it seems like it happens in about 7 to 8 hours), so if you don’t take small doses several times a day while tapering, you go through interdose withdrawals, which are not fun. I know, because I was taking .5 mg twice a day (once in the morning and once in the evening, as directed by a physician) for several years, so I was going through interdose withdrawals every day. Now that I’m keeping the amount of medication in my blood stable, my mind is clearer and I’m not descending into anxiety every eight hours. I call that progress.

Of course, I had to learn everything about this medication myself. Here is what none of three prescribing doctors ever told me:

1) The medication is addictive (after I had told each of them that I never wanted to take an addictive drug).
2) The medication is ten times more powerful than Valium.
3) The medication has a short half life and the doses should not be taken too many hours apart.
4) The medication is hell to withdraw from, even on a slow taper.
5) Attempting to withdraw from the medication too quickly can cause seizures, psychosis, acute suicidal ideation, and…oh, there’s that other little possibility of death.

This whole process is very hard, and it’s taking more patience than I knew I had. I’m feeling more medicated than I’d like to be, and yet I know that this withdrawal has to be slow and steady over a period of months. Every time I reduce the dosage, I have a couple of days of pretty intense adjustment. Yesterday was terrible. I was in pain throughout my body, I felt almost completely exhausted, and I wasn’t able to get much sleep last night. Hopefully, today will be better.

Medication withdrawal is not fun. However, in the midst of it, I am determined to do at least one thing every day that I enjoy: weaving bracelets, taking photographs, gardening, writing, going for long walks, and eating dark chocolate (for medicinal purposes, of course).

Send out some good thoughts to me. I sure could use them.

© 2010 by Rachel Cohen-Rottenberg