Journeys with Autism

In my never-ending quest to find a few safe places to hang out that don’t include my house, I decided to consider (duh!) the library. I used to volunteer there packaging books for inter-library loans, and I left mainly because I was only beginning to understand the impact of autism on my body and soul. When I left, I told the staff I was leaving to take care of my health, and they all signed a really beautiful card to wish me well. Sigh. These kinds of things mean a lot to me. So the people there are very nice and the place feels very safe.

However, I haven’t been back there since. My resistance stems mainly from the fact that they used to know me as this still somewhat passable NT-looking person, and now I’m not. I feel like I’d be walking into an old picture and getting confused about how to navigate.

So, last night, I finally realized (duh!) that I could send them an email and create a new picture. Here’s the note I sent them today via their website:

“Hi—

You might remember me. I used to volunteer at the library packaging ILLs. I’m writing to let you know how I am so that I can get the services that I need at the library.

In the past year and a half, I have been diagnosed with a number of disabilities. I am autistic with extreme auditory and other sensory sensitivities, so much so that I usually have to block sound when I am out in public. When I come into the library, I will probably be wearing a blue noise-blocking headset, a set of earplugs, or both.

Autism is a very inconsistent condition. Sometimes, I’m able to talk for a short time without a lot of effort. At other times, a short conversation is so difficult that it will leave me with severe body aches for days. There may be some days that all I can do is smile and wave, and a smile and wave in return is the perfect response. I would ask that, when I come to the library, you take my lead regarding how I communicate. When I go about my life in public and need something specific, I generally play it safe and communicate in writing. I am looking into assistive communication technology, so I may have an iPad or some other interesting device with me. It’s a work in progress.

Please remember that the changes you will see are superficial. I am still the same person I ever was. I just can’t navigate in typical ways anymore.

I would appreciate it if you would confirm receipt of this note, and especially if you would share it with the staff.

Many thanks, and all the best to everyone,
Rachel Cohen-Rottenberg”

Let’s see what happens, shall we?

© 2010 by Rachel Cohen-Rottenberg

Over the past few days, I’ve become more and more convinced that I am not depressed. If my doctor wants to put “Major Depression” in my chart and offer me more yummy pharmaceutical candy, he is more than welcome to do so. But I am aware that the problem is quite a bit wider and deeper than mere depression, if such a thing even exists at all. The problem is that I carry more grief inside me than a body can bear.

I’ve talked about hitting walls of grief before, but this time, it’s different. It’s as though all the losses that have ever happened in my life are standing out in vivid detail, and all the support systems that I don’t have are showing up as large, gaping, terrifying absences. Let me walk you through the landscape, if you care to travel.

The loss of my entire original extended family. The loss falls into several categories:

a) People who loved me dearly and are now dead: my maternal grandmother and grandfather, and my paternal aunt. Of course, it goes without saying that they were the first to go.
b) People who abused me, hated me, and slandered me and are now dead: my mother and father.
c) People who were nuts and are now dead: too many to name.
d) People who are still alive, loathe me, and treat me as though I’m dead: my brother, my remaining aunts and uncles, all my first cousins, and a host of second cousins.
e) People who are simply uninterested in knowing me: everyone else I’ve looked up that bears any blood relation to me.

There is something deeply, primally terrifying about having no family. It’s unnatural. I feel like a nameless, defenseless wanderer on the earth. What can I have done to deserve this? Why is this my fate? What am I do with this? What lessons am to learn? How I am to channel it? How am I to bear it? How am I to grow old and frail and defenseless with no family? I have no idea anymore. When I have the energy, all I can feel is very pissed off, but most of the time, I don’t have the energy.

Having a mid-life crisis that consists of discovering that I’m autistic. I was prepared for a mid-life crisis: the kid grows up and leaves home, and I have to figure out something else to do than wash her clothes and ask her about her day; the husband grows older and I have to worry which of us will go first; I start to realize that I don’t have a lot of time left and I’d better start doing the things I love before it’s too late; and I have to get right with the fact that I’ll never get to do a lot of things I would have liked to do because of paths I’ve already chosen. I was ready for all that. Truly.

But now I’ve got this autism thing on top of it. Oh my God. Are you kidding me? So now, in addition to never having ten children (menopause), or running a marathon (my knees are shot), or getting back all that time I wasted in graduate school (I can’t make time run backwards, no matter how hard I try), I also have to give up the idea of going back to school to study a second language (too many people in a classroom and whoops, you actually have to talk with them!), becoming a social worker (something about reading nonverbal signals—who knew?), travelling (too many people, too many changes, too much noise, too much everything), going to the local bookstore and making interesting conversation with the locals (the clunky headset, you know), having a social group in 3-D real time (a ten-minute conversation makes me feel like I’m getting the flu)…you get the idea.

The absence of a best friend. This one is laying me low right now. I really, really miss having a best friend. It’s been so, so long. At least 20 years.

The loss of my synagogue community. I thought I was over this one. It happened eight years ago that the synagogue decided that Bob had to either leave me or leave his job as the spiritual leader. When he left his job, everyone blamed me. It was horrendous. The whole place came down on me at the moment of my greatest vulnerability: I was coming out of a failed marriage. I had left my home, my community, and my familiar surroundings to move to the area of the synagogue because I thought I had a community there. I was supporting two households. I had more stress on me than I’d ever had before. And I was in love. And the community’s response was to kick me when I was down. Repeatedly. I realized this week that this experience was the end of innocence for me. I’ve never recovered from it. I’d held onto my innocence for so long, through so much abuse and betrayal, but the cruelty of a group of people trying to destroy the deepest love of my life finally broke it, once and for all.

How proud they must be.

Plans that keep failing. This one is throwing me for a loop. Time was that I could make a plan and implement it. I wanted a job? I’d write up my resume, apply for jobs, and get one. If I didn’t like the job I had, I’d get another one. When I wanted to go to grad school, I studied for the GREs, wrote the application essays, got fellowship offers, and decided where to go. When I wanted to homeschool, I homeschooled, and it was fun, and it worked.

But now? I have all kinds of plans, and they keep falling through. Remember that I was learning ASL so that I could volunteer at the school for the Deaf? Well, after many months of waiting for my paperwork to go through, the woman I’d been corresponding with told me, without warning, that she was taking another job. I haven’t heard from anyone since. Okey dokey.

Then my book designer, who used to be a friend, bailed on me without warning. We’d only talked for a year about her designing my book, but whoops! she was just so very, very busy with other very, very important clients, but she was so very, very sure I’d find just the very, very right person to design my book. I wrote her back and congratulated her on selling our friendship to the very, very highest bidder. (NB: I ended up designing the book myself, and it looks awesome, so that part was cool, but still, it would be nice to be able to depend on people semi-occasionally.)

And now I’ve found that I simply cannot work outside in the world on a schedule. I really wanted to work at the thrift shop on Tuesdays and Thursdays, but I just can’t. My body just isn’t made for it. So that great idea didn’t work out so great after all. I can do the work at home, but the point was to be out in the world, not living in an ever-contracting universe. The autism is such an unpredictable creature that I feel like I can’t make a plan I can depend upon. And people out in the world are such unpredictable creatures that I hear the words they say, and part of me thinks, “Great!” and the other part of me thinks, “Wait and see.”

“Wait and see.” There’s a philosophy of life. I can feel myself becoming one with my easy chair.

Lack of support services. How does one describe an absence? I mean, the medical profession isn’t even remotely in the vicinity of understanding adult autism, especially in adults with heretofore successful NT-looking track records. Where are my peers in the community? Where are the services for other developmentally disabled adults? What happens if I am widowed and alone? How do I meet other people? How do I get help for things I can’t do? How do I find someone to share my house so I don’t go nuts from being alone? How do I get someone to advocate for me when I’m old and frail and at the mercy of the medical profession? Or do I just become another nameless, faceless, useless old person? Am I just another number?

These are all the things that are looming up like the heads of the hydra right now. If I try to dispense with one, two more grow in its place. It’s maddening and frightening to be middle-aged, disabled, with no family, and to live in a society that doesn’t take care of neuro-typical, middle-class people when they get sick, never mind disabled people.

I look out my window these days, and I see the tiny green leaves that mean that winter is finally past. I used to love this time of year. I used to get up every morning and rush out to my garden, just to see the shoots coming out of the ground. It was my favorite time of year. But this year, all this new life is just making me cry. I feel as though I’m looking at a world that isn’t mine anymore. I can’t find a word of advice or philosophy or conventional truth that makes any sense to me at all. This new life will come, and it will bloom, and it will go, over and over and over. I used to wish that the bloomtime would last forever, but I don’t anymore, because I know how quickly it passes. Right now, I wish for the quiet stillness of winter, the warmth of the wood fire, the sense that nothing will ever change, and that I have no need to be afraid.

© 2010 by Rachel Cohen-Rottenberg

This post has been rolling around in my head for awhile, but I didn’t know how to frame it or even how to express the feelings I’ve been having. But lately, I’ve been crying a lot (care of numerous episodes of Buffy, the Vampire Slayer—thank you, Ashlynne!) and crying often brings me to a more basic level of where I need to be and what I need to see.

What this post is not about: This post is not about suicide, thoughts of suicide, plans of suicide, whether suicide is okay, or anything having to do with suicide. I am very superstitious on this subject. I have a great fear that were I to take myself out in a moment of despair, as I though I were the only human being who had ever suffered on the face of the earth, I might live all eternity in the same state of suffering in which I left. I don’t want that. I won’t have that.

This post is also not primarily about basic physical survival, although that’s part of it. I can generally scrape together food and get it into my mouth on a regular basis, and I’m not at any risk of homelessness. While there is always risk in life, I live in as safe a place as you’ll find in America, so I’ve substantially lowered my chances of an early departure.

What I mean when I talk about survival is the exhausting struggle of going through the day. I don’t mean that I wake up depressed every morning. I’m not even sure that there is such a thing as depression any more—at least, not in the way it’s understood by the medical profession. The problem is not a mood disorder. (In fact, I’m coming to hate the word disorder. It sets my teeth on edge.) The problem is the difficulty of bearing up physically, mentally, and emotionally against the onslaught of living in a society in which we are taught that happiness comes in a package or a pill, that we should live in a state of perpetual fear that someone else will get what we want before we get there, that the shelves will be bare, that we will have missed out on whatever-it-is that everyone else has, and that being autistic, we don’t have the currency anyway, so the joke’s on us.

The difficulty of survival is also a problem of finding meaning. There are days that I literally can’t figure out why I should get up in the morning. After awhile, I get hungry, or decide that I really should do last night’s dishes, or brush my teeth, or get dressed. The basics help. Some mornings, of course, I can’t wait to get up. I’ve got a million ideas for projects rolling around in my head. But inevitably, every day, I hit a wall of some kind, usually a sensory wall, and I’m always surprised. I’m almost 52, and I’m still surprised, because that’s not the way I’d imagined it was supposed to be. The surprise itself is enough to stop me in my tracks for hours or days. And the pain of hitting the wall is so discouraging that it seems to take me longer and longer to get up again and keep going.

As I’ve been sitting here at home, wondering about whether to work, or to apply for disability, or both, I’ve started getting lost in circles in my mind. After awhile, I felt as though my feet had left the ground, and I started weeping several times a day, seemingly for no reason. That’s when I realized that my challenge is much more basic than a work schedule. It’s about how to survive this world that overwhelms my senses, my conscience, my sense of justice, my heart, my mind, and increasingly, my sense of purpose. I used to have no problem finding meaning in my life—raising my daughter, loving my husband, feeding the poor, clothing the naked. There is no end to the brokenness of the world, and no end to the project of mending it. But somehow, I find myself less and less able to convince myself that I’m having an impact. Or maybe, better said, I’m having more and more trouble finding the humility to accept the tiny impact that I have. There is a Talmudic dictum that says, “You are not obligated to finish the work, but neither are you allowed to desist from it altogether.” It’s supposed to be both a comfort and an encouragement: You can’t do it all, but don’t quit. At least, that’s how I used to hear it. Now, I hear it as, “You can’t do more than add one tear to all the tears that need to be cried before the world can be mended.” And that just about flattens me.

I was thinking last night about the work I do for the thrift store. I’m mending quilts and other things that will be sold to benefit our local independent hospice. All of the services of the hospice are free, and it receives 65% of its funding from sales at the store. So, last night, I realized that I am helping make it possible for people to die in their homes, surrounded by familiar things and the people they love. It makes me feel good. It’s important that people die loved and cared for. But somehow, that sense of purpose that used to drive me—it just isn’t here anymore. I love doing the work, and I’m not going to stop, but I’m doing the work for a different reason than I used to—I’m doing it because I like working with fabric, color, and texture. The fact that it’s in the context of a non-profit is critical as well; I wouldn’t do this work for a retail store. But it’s not driving me like it once did. And that scares me some, because I used to have Big Plans and Important Purposes that were like fuel in my tank.

I seem to be having an energy crisis. Maybe the old fuel wasn’t sustainable. Maybe I need a cleaner, greener, more efficient fuel. I don’t know what it is, and as I get older, I worry that my energy will lessen rather than grow. I worry that I will find it more and more difficult to get out of bed, to get through the day, to be alone, to find meaning, to get excited about making a difference. Perhaps it’s this worry that’s led me to realize that I have to work on how to survive each day. Without that, I’ll just keep trying to create my life over and over, looking for the magic potion that’s going to finally solve everything. There is no such magic potion. All I can do is to search for a way to survive each day with a modicum of grace and sanity.

Okay, forget about the grace. I’ll take learning to survive each day with a side order of sanity. That’s not too much to ask, is it?

© 2010 by Rachel Cohen-Rottenberg

In the past couple of months, I’ve been approved for services through the Vermont Division of Vocational Rehabilitation. I’ve been working with Will, my counselor, to put together an Individualized Plan for Employment (IPE). I was supposed to go for an intake inteview with another counselor today, but I’m sick with a sore throat and a cold, so I’m taking the rest of the week off to rest my very weary senses.

Working with Will has been a very positive experience. Will is Deaf, so we communicate by writing back and forth. He is very calm and moves very slowly, so my visual field doesn’t feel like it’s filled with lots of gestures and movement while we’re communicating. Going for an hour-long appointment isn’t tiring (when I’m well). I don’t have to talk, I don’t get overloaded, and (not surprisingly) I don’t feel anxious.

My main reason for beginning the Voc Rehab process was to find part-time work outside my home and feel like part of the world again. I didn’t want to work in an office, so Will gave me a vocational assessment test to see what else I might be suited to do. I finally chose to look for employment working with animals, either on a farm or in a shelter. I figured that working with animals would get me out of the house, keep me on my feet, give me something strenuous to do, and allow me to spend some time with sentient beings who don’t talk. I’ve got lots of experience working with dogs, cats, small mammals, chickens, goats, and sheep after living on a farm for six years, so I know what I’d be getting into. In other words, I’m not romanticizing the work.

However, I think I’m being little unrealistic about myself. As time has gone on, I’ve begun to wonder whether I could hold myself to a schedule of getting someplace outside my house at a regular time on a regular basis. I do get to the thrift store regularly, but that’s just two days a week for two hours a day, and it’s a volunteer position, so it’s flexible. They’re perfectly happy to have me repair quilts at home if that works better for me, so I have some good choices there.

But I worry about my ability to get to a paid job at a specific place, at a specific time, from week to week. I’m beginning to grasp that autism is a very inconsistent and unpredictable condition. Some weeks, I love being outside, taking walks, going to the store, and gardening. Other weeks, I just want to stay inside, all week. And some weeks, I’m somewhere in the middle. I used to think that I could pace things—go out one day, stay in two days—but I’ve found that there really isn’t a pattern that matches what my body actually needs. There are far too many variables affecting my senses to be able to predict how I’ll be doing from one day to another. For instance, I could take a long walk one day, and if no one were using power tools, or playing loud music, I’d come home in a far more relaxed state than if the sound of a buzz saw or a rock band found its way through my headphones. Or, if I went outside to garden and the road were relatively quiet, I would have a very different experience than if a lot of loud kids were outside in the street talking. And then there are the variables inside me: my level of energy, my mood, how sensitive I’m feeling, whether the internal abusers are awake, and so on.

Bob has been hinting that maybe, just maybe, looking for a job outside my house is not such a great idea. For a while, I kept thinking, “Gee, way to be supportive, honey!” but I finally got his point. I got his point, oddly enough, after I wrote my post about feeling like a freak. I realized that I was at an impasse. Do I try to hold myself to a schedule, and be conventional in some way? Or do I just embrace my weirditude and accept that some days, I’m like a billiard ball bouncing off the walls, and that some nights, I fall asleep in my clothes, and that often, I do not want to be interrupted from whatever fascinating thing it is that I’m doing?

The issue came up a second time as I began to consider the possibility of applying for disability benefits. Will said that the folks at Voc Rehab could help me with the application process if I wanted to go in that direction. He even said that, during the dreaded personal interview, the Social Security employee and I could communicate in writing, and that Will would be there for support. By no small coincidence, I also received my yearly Social Security statement around that time, which showed how much money I’d get if I were on disability: $1,890 per month. No small change. I worked a lot of years, and made a lot of money, and paid a lot into the system, and there is a part of me that thinks, “Hey, I deserve that money. I worked for it, and I burned myself out to get it!” But really, I find myself at the same impasse I’ve arrived at regarding work. Do I want to try to work with a conventional bureaucracy in a conventional way, or do I want to face the fact that I feel like I’m choking to death just thinking about it?

If money were an issue, I’d probably suck it up and go the disability route. But it’s not an issue. Bob and I are comfortable and our needs are pretty simple. So what do I want to do?

Answer: I want to work. A bit. At home. As a copy editor. For our local paper. Which is edited by a friend of mine. Who would be delighted to have me, if only as a volunteer. At first. I wouldn’t have to work at the computer. I could set my own hours. I could send in my copy with Bob. I’d be appreciated for the good work I do. And somehow, it would allow me to connect to an earlier time in my life, when I was working at home during my first marriage, when my daughter was small and we were homeschooling.

At that time, I felt like my world was so small; my marriage was falling apart, and I was feeling trapped. But really, when it came down to it, the kid, the homeschooling, and the job were all working great. In fact, it was great to work at home, because I could get up and take breaks whenever I wanted, I could start and end whenever I wanted, and I could wear whatever I wanted. Now, at a time when my daughter is getting ready to leave the nest, and I am going through a mid-life crisis to end all mid-life crises, it feels good and right to reach back and find something from my earlier life to bring along with me.

Will thinks that perhaps I could work at home and also work out in the community. He feels that with some training and accommodations, it may be possible for me to hold down a job outside my house. But he’s also willing to follow my lead here, and he can certainly try and help me find other work I can do from home. At this point, everything in me is saying, “Come on, Rachel. Just be eccentric, and inconsistent, and unconventional, and follow your own way. I mean, why stop now, when you’re getting so good at it?”

© 2010 by Rachel Cohen-Rottenberg

Last night, I had a killer migraine. Usually, when I feel a migraine coming on, I take a tablet of Sumatriptan, which stops the migraine in its tracks. It has always worked—until last night. The migraine didn’t respond to medication at all. By 8 pm, I was so nauseous and shaky that I needed Bob to help me navigate to the living room so I could lie down. I couldn’t bear to open my eyes; any kind of light was like torture. I couldn’t even look at the fire in the woodstove. I had the dry heaves, and at one point, I went into shutdown and couldn’t speak or move at all.

But mostly, for about two hours, I stimmed almost constantly—rocking, hand flapping, hitting my head with my fist, over and over. It actually helped—a lot. I’m not sure how much it helped to reduce the pain, but it certainly soothed me in the midst of it. As I went through the whole ordeal, it became clear that a lot of pressure has been building in me. Some of it has to do with Bob’s daughter, and even more of it has to do with my almost continuous anxiety and my drive to figure things out. My poor mind felt so incredibly tired last night, as though I’d overworked it to the point that it was literally screaming at me to stop.

Once my defenses were down, I finally saw what most of the pressure is about: I feel like a freak.

There, I said it. I feel like a freak. I feel like a freak to the point that I don’t want to go outside and be seen with my stupid headset on, or try to talk to anyone, or do anything out there at all. I just want to hide. Watching how naturally the stimming came to me, and how much it helped, brought the issue out into the open. I thought, “Wow, I’m really autistic. Look at what I’m doing—all those things that I’ve been taught are sick and strange and wrong.” Then I realized that I feel sick and strange and wrong, pretty much all of the time, and I’m exhausted by it. It takes so much work to defend against the feeling, to avoid it, to tip-toe around it, to change it. Last night, I hit a wall of exhaustion, and my feelings about myself came pouring out.

I feel like my whole life is strategy. The spring is here, the days are warmer, and I want to go out and enjoy it all. But how do I deal with the neighbors? Do I take off my headset and talk to them? If so, how often? Will they think I’m anti-social if I don’t? Should I have Bob explain the situation to them? All these questions have been circulating through my mind for weeks, and I can’t find any answers. I’m afraid to try anything. I’m completely stuck.

Feeling like a freak puts me in a terrible trap. If people believe that I’m really autistic, I’m afraid that they’ll see my headset and my silence as bizarre, and they’ll just ignore me, which will make me feel even more isolated than I already feel. If they don’t think I’m autistic, or if they think I’m only “mildly” autistic (whatever that means), then they’ll think I’m putting on an act. If they only knew that my whole life up to this point has been an act! I wish there were a third alternative, that went something like: “They will know that the way I am is normal for me, and they will meet me where I am.” But I can’t depend on that response, to put it mildly. At the thrift store, they meet me where I am more often than not, but I’m always afraid that all that will go away.

I’m always afraid, it seems. Sometimes, it lays me low, and sometimes, I just carry it and keep going. Physically and emotionally, I feel things so acutely that it’s hard to feel resilient, and it’s hard to know when something will total me.
 
I still want to be normal, so much. Not because normal is better, but because it’s physically easier. I’d give almost anything for one day in which I could do anything I want without risk of overload. I’d give almost anything for one day in which I could keep a conversation with a neighbor going for as long as I want. I’d give almost anything to be able to go to a restaurant or a movie without needing three days to recuperate.

But that’s not my life, and very little has prepared me for who I really am.

Even as I write this, I know that someone will read it and think, “Wow, so I’m not the only one.” And then I’ll remember that I’m not the only one, either.

© 2010 by Rachel Cohen-Rottenberg

I’m in the midst of blowing another emotional gasket over the way that my stepdaughter treats Bob and me. The pressure has been building in me for a while. I’ve been noticing that I simply don’t want to hear Bob talk about his daughter at all. I’m too angry at her. He wrote her a letter last summer, telling her that she needs to do some work, show us some respect, and deal with her issues, but nothing has changed. She has not even begun the process.

Now, it’s nine months later, and it’s Passover, and Bob’s daughter wasn’t at the table with her brother and stepsister. While Bob has been bemoaning her absence, I’ve found myself digging in my heels deeper and deeper over something she has repeatedly said to Bob. And I quote:

“Rachel has taken away everything in your life that was important to you.”

Yes, she has really said that. More than once. How do I even begin to resolve my feelings about anyone who would say something like that?

The most difficult part is that Bob keeps asking me, “What would it take for my daughter to be welcome in our home again?” I’ve finally realized that it’s an unfair question. I have no idea what it would take. I have given my stepdaughter more love, more trust, and more second chances than I ever should have, and at this point, I don’t know whether I can ever trust her again. Over the course of the past eight years, we have had some good periods, but after every good period comes a backlash that’s worse than the one before.

Her alternately minimizing and denying my autism is bad enough. That’s just plain mind-bending ignorance. But repeatedly telling her father that I’ve ruined his life? That’s malicious. I can’t think of any other word for it. Every time she says it, Bob says, “No, that’s not true. Rachel has given me back my life.”

Does it make a dent? No.

Now, I know that I did not cause this problem, and that I cannot solve it. I know that Bob’s daughter feels guilty over how she devalued her mother when she was alive, and that she wasn’t there to help care for her when she was dying, so how can she show me respect or accept my disability? It brings up too much guilt and pain. So, instead of dealing with her guilt and pain, she flings it all at me, and in the process, she’s built an impenetrable wall between us. It’s intensely painful to Bob that she’s doing this, because when it comes down to it, she’s building pretty decent walls between the two of them as well.

Of course, when she needs something, she feels free to call. In fact, she won’t make any major decision without consulting her father. And yet, oddly enough, she shows no respect for the major decisions he’s made for his life.

It’s mind-boggling. I could almost deal with this from a 20 year old. But she’s nearly 29, and it’s all getting very old. Her mother will be gone nine years next month. I respect my stepdaughter’s grief, but life moves on, and that ain’t my fault.

I don’t know what to do anymore. I have difficulties with trust in the best of times. I tend to trust people too much, and I tend to take them at their word too much, and then I get hurt. It’s happened so much with my stepdaughter that I don’t know that I’ve got another round left in me. For Bob’s sake, I feel like I should have another round left in me, but I’m exhausted.

Life is feeling so very brief these days. The older I get, the more keenly I feel my own mortality. I don’t know how much more life I’ll get to have. Maybe it will be a long life, but I don’t take that for granted. Will my stepdaughter ever come around while her father and I are still here? Doesn’t she realize how much time is passing? Doesn’t she realize how painful this is to her father, who has been there for her at every stage of her life, supporting her, cheering her on, making sure she feels loved? Doesn’t she realize that he won’t be around forever, and that she’s only creating more guilt and regret for herself in the days ahead?

I just don’t get it. I don’t think I ever really will.

© 2010 by Rachel Cohen-Rottenberg

Recently, a friend sent me a link to an article written by a young man named Jacob Artson. Jacob is 17, and describes himself as nonverbal, severely autistic, and developmentally disabled. His article, Encumbered and Blessed, is a very moving, honest, and insightful treatment of his experience of inclusion and exclusion in diverse communities.

Jacob’s father is Rabbi Bradley Shavit Artson, and the article appears on the website for the United Synagogue of Conservative Judaism (USCJ). I have no affiliation with the USCJ, and it is not my intention to proselytize for Judaism by referring you to this article. (I do not allow proselytizing on this blog or in my life.)

I am posting the link only because the article is an absolute gem. I’d be very interested in hearing your responses to it.

© 2010 by Rachel Cohen-Rottenberg

I’m going to talk about my food weirdness. I’ve talked about most of my other forms of weirdness, and it’s time to come clean about my interesting relationship with food. Please know that I do so with the utmost faith that somebody, somewhere has had the same kind of experience. Okay? Ya hear?

I’ll begin with my odd food habits of the past few weeks. Since Saturday, February 27, I have eaten bananas mashed up with soy powder and sprinkled with cacao nibs for every meal. I kid you not. Our compost containers are filled with banana peels. Bob has taken to asking me every other day whether we have enough bananas in the house. I must have an intense need for potassium, because I’m eating an average of eight bananas a day. I can’t get enough of them. For snacks, I eat figs, dates, and nuts. I also eat whatever vegetables Bob happens to cook up: potatoes, parsnips, carrots, and squash. I’m particularly interested in the carrots, which taste awesome to me right now. And yes, I’m taking multivitamins so I shouldn’t die of rickets or anemia.

Why did I start in with the banana mush meals? Well, let’s just say that my recreational eating was starting to get a little out of control. I wasn’t gaining weight, but I was eating too much sugar, too much salt, and too much fat. I knew that at some point, I’d have to clean up my act (since I go through these cycles about once a year), and the magic moment came when I greedily gobbled up some dark chocolate and could hardly even taste it. I thought, wow, if chocolate doesn’t taste good to me, I need to clean up my act in a big way.

So that’s how I got started eating banana mush three times a day. And, truth be told, I can’t imagine ever eating anything else again. I assume that I will, but right now, I love the simplicity of making these strange little meals. I love how satisfying they are to my body. I love the consistency of this thrice-daily routine. And I love the fact that I’ve stopped addictively eating sugar, fat, and salt. Of course, now I’m addictively eating bananas, but so what? Autism is a world of extremes, and a banana addiction is small potatoes (sorry) when it comes to addiction.

Now, I know that the nutrition experts out there are shaking their heads and thinking, “This girl is headed for trouble.” But I assure you, I am not. I know that the experts say we’re supposed to eat a variety of foods every day, yadda, yadda, yadda, but that isn’t what my body is asking for. And besides, there are plenty of people on the planet who don’t get a variety of foods flown in from faraway lands on a regular basis, and yet, the human race survives. Go figure.

So what about my previous history of food weirdness? Let’s see. When I was a child, I didn’t have a lot of food weirdness, mainly because my parents were in charge of the food. Of course, there was the food weirdness of always eating my meals very fast, but that was my father’s doing, not mine.

You see, when I was a child, I used to save my favorite food for last. At dinner time, my favorite food was always a baked potato with lots and lots of melted butter. I would mash up the potato and the butter, and then I would let them sit there, at the top of my plate, while I finished the meat and the other vegetables.

One night, my father took it into his silly head to eat the food off my plate. And what did he go for? My potatoes and butter, of course. When I protested loudly, he said, “What? You’d deny food to your own father?” And then he jabbed the back of my hand with a fork. My father was probably autistic, but this bit of drama had nothing to do with autism. It was just a garden-variety abuse of power. (Don’t you love the way I’m sprinkling food idioms into this post?) Anyway, after that, I took to practically inhaling my food. I have two autistic friends who eat faster than I do, but usually, I leave the competition in the dust.

As a young woman, I became obsessed with being skinny, and I started eating cottage cheese with pineapple every day, topped off with a nice espresso and a cigarette. After my gag reflex started kicking in, I switched to eating soybeans and vegetables three times a day. And I don’t mean tofu or tempeh or any of those lower forms of soy nutrition; I mean cooked soybeans, three times a day. God, it was boring (and I was hungry, like, all the time), but I was saving the planet from rapacious meat producers, so it was worth it.

That is, until I couldn’t stand it anymore and ate yogurt like a madwoman. Now I can’t even look at yogurt without getting sick to my stomach.

I had a rather strange few months in my late 30s in which I started eating matzoh and almost nothing else. It wasn’t a good time in my life. I was a little stressed out, and somehow, the matzoh helped. I don’t know why. Maybe it was the reminder that my ancestors in Egypt were even more stressed than I was? Or felt equally enslaved to their jobs? I don’t know. I quit the matzoh when I got down to 98 pounds and realized that I wasn’t feeling very well.

Since then, I’ve gotten back to a healthy weight, and now I eat bananas all the live-long day. Yum.

Okay, so come clean, y’all. What’s your food weirdness?

© 2010 by Rachel Cohen-Rottenberg

In this month’s issue of The Sun magazine, I found the following quote by Philip Slater:

“Despair is the only cure for illusion. Without despair, we cannot transfer our allegiance to reality—it is a kind of mourning period for our fantasies. Some people do not survive this despair, but no major change within a person can occur without it.”

Those were the perfect words for me to find at this particular moment of my life. I’ll try to explain why.

After I wrote my post about self-worth, I noticed myself living with the emptiness inside, and I saw that it wasn’t going kill me. In fact, I felt like a great burden had been lifted from my shoulders. All my life, I’d struggled with improving my sense of self-worth, and now I felt nothing but relief that I didn’t have to struggle anymore. I could stop going to war about it. I could move on. Or better yet, I could just sit still.

One evening, as I sat knitting, I found myself thinking, “Okay, so I feel no self-worth. I feel empty. Yup. Empty. It’s weird. It’s sad. It’s… Hey, this hat is really coming out well…” I was just sitting there with the homespun yarn in my hands, watching myself knit around and around on circular needles, thinking about Bob spinning the yarn, appreciating the fact that the lanolin was healing the cracked skin on my fingers, and not having the pressure to do or be anything in particular. After all, I was empty of worth. What could I possibly do of any importance? Such freedom!

And then, it came to me: The empty place inside is where my parents’ love should have been. I felt no self-worth because I had never felt any love from them. And then I thought about the sexual abuse and the despair I felt when it started. I was eleven, and that was the day that I started to lose my family forever. That man who abused me was not the same man who had thrown baseballs to me in the backyard. He was not my father. It was as though my father had died, and some other man who looked like him, and talked like him, had taken his place. My mother would never have believed me, and so she was gone, too. My brother was only eight. I wasn’t going to tell him. How could I? I didn’t even have words for it. In that moment, everyone was gone, and I was alone.

Since then, not one of my relatives has expressed any love, any compassion, or any concern for me. Quite the contrary, in fact. And all these years and years of losing people started one night when I was eleven, and somehow, I knew it back then. I sensed what it meant for my life. And I was right.

I accept these losses now, but sometimes, they make me very sad. My friend Ben said that it’s okay to be sad about it all. How could I not be sad? Bob has said many times that the emotion I express most is sadness. Of course it is. How many people have I lost over the course of my life? I can’t even keep count of them all.

And then there was the despair of watching my dreams for my life drift away as my disabilities became more and more apparent. As much as I love the gifts of my autism, I’ve had to grieve for that person I thought I was, and at times, the grief has filled me with despair so deep that I didn’t know whether I’d ever be able to climb out of it.

Last week, I talked these feelings over with the doctor who manages my medication. I see him once a month for an hour. As I described what I was going through, he said that my grieving seemed to be going well. He said you know that your grieving is going well when the sadness wells up inside and you start to cry, and then at some point, you notice that you’re thinking about getting a pizza, or that you’re remembering an afternoon with your best friend when you were ten. You grieve, and you leave room for other things to enter. And then he leaned forward and said, “I’m going to tell you a secret. The grieving never ends. You just learn to carry it differently. Nobody wants to admit it, but it’s true.”

Another piece of relief, of a burden being lifted. You mean, I don’t have to resolve this grief? You mean, I don’t have to go to war against it? You mean, I don’t have to feel like an utter failure because I feel sad? How utterly fantastic is THAT?

After all, life is predicated on loss. Life ends. Jobs end. Friendships end. We end. Everything is fragile and finite. Broken-heartedness is one response to all of it. It’s my response to all of it. I’ve been broken hearted all my life. I live in a culture in which we’re always supposed to be happy and comfortable and thinking positively, while at the same time I’ve a) been assaulted by the very people who were supposed to love and protect me, b) had my senses assaulted by the world around me, and c) had my mind and heart assaulted by the madness of the world. I can’t even read a newspaper anymore. The so-called “healthcare debate” drives me crazy. How can adults in the richest country in the world not agree on how to provide universal healthcare? How can they be so arrogant and so unbearably stupid? How can they strut and accuse and lie and play politics with people’s lives?

It takes a spiritual warrior to be broken hearted in a culture like this one.

In the midst of all these layers of sadness and despair, I’ve been burning away the illusions of who I was supposed to be. I was supposed to be able to do anything I wanted. And what were all of these nebulous, terribly important things waiting for me in my future? I don’t even know. They were someone else’s illusions, I suppose. I just took them on. Now the illusions are gone, and I can feel the relief of being exactly who I am. I walk around town in a big old headset, communicate with people in writing, don’t make much eye contact, and that’s who I am—right now, right here, at this very moment.

The rest is either a dream of who I was supposed to be, or the memory of who I no longer am. I was once the mother of a small child, but no more. I was once married to her father, but no more. Bob and I once led services together, but no more. I used to work full-time, but no more.

If I keep living in what’s past, I’m living in a world of illusion, and my whole life has been about truth, about speaking the truth to my family, about dealing with the consequences, about never being able to do anything other than say what’s real, despite the fact that it rarely gets me what I want—compassion, support, friendship. But it’s who I am, and I love that it’s who I am. My whole life has been about trying to see things as they really are, and about trying to speak about them as they really are. And somehow, the despair I’ve felt has burned through layers and layers of illusion, and left me with the time and the willingness to look at the truth of my life.

At times, I’ve been afraid that my despair would swallow me alive. Some people don’t survive despair. I’ve wondered at times whether I would survive it. But then I remember that I have a fierceness inside me, like an unquenchable flame. Somehow, the despair has taken my fierceness and used it burn through so many illusions that I am left empty and can begin to live.

© 2010 by Rachel Cohen-Rottenberg

As most of you know, I volunteer for a thrift store that benefits the local area hospice. Several weeks ago, I told the store manager that I sew, and since then, I’ve been up to my elbows in different kinds of mending and restoration projects. I even bought a sewing machine to help the process along, although I sew by hand when mending quilts that are hand stitched.

A couple of weeks ago, the store manager showed me some chair cushions that she wanted me to re-cover, so we started with the ugliest ones. They are (or should I say, were) ugly in a kind of 1970s polyester way. At first, I tried replacing the material altogether, but then decided that it made more sense to sew new material onto what was already there. For the front and back of each cover, I used my sewing machine. For the side panels, which had to be sewn around a zippered opening, I sewed by hand. Here is a picture of the two covers. The one on the right is the original, and the one on the left is my beautification of it:

Yes, the border around the original was made of a kind of tinsel-like gold color that should simply be illegal to use in a home furnishing. It’s an affront to the senses. When I wasn’t working on the covers, I had to hide them under other material in my loft so that I couldn’t accidentally catch sight of them.

I brought the finished cushions into the store yesterday, and the manager was so happy with them that she brought the chair up right away to sell. When I went in today to take a picture of it, I learned that it had already been sold, but was being held for pickup downstairs. So I went down and took some photos of it. Here’s the best one:

I love doing this work, and the people at the store are nearly ecstatic about it. Everyone seems to have adjusted to my not talking or hearing, and they are very appreciative of what I do. They write me notes, show me what to do, and treat me with a lot of kindness. I’m getting less and less self-conscious about my headset and my silence, and more and more able to rest easy in the knowledge that I use them to work with my disability (in the same way that I would use a wheelchair if I couldn’t walk).

It’s good to feel part of something again. It’s been a long time coming.

© 2010 by Rachel Cohen-Rottenberg