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Archive for Happiness
Miscellaneous and Sundry
My life has been very busy of late — in very good ways. I thought I’d bring you all up to date.
Since coming through the long Vermont winter, I’ve been spending a great deal of time outdoors, much of it spent gardening. Over the past couple of years, Bob and I have been preparing some garden space on the north side of our house. We let the fall leaves remain on the beds to suffocate the weeds, and we added a lot of goat manure as fertilizer. This spring, I decided that it was time to start planting, so we went out and got mountain laurel and dogwood bushes; raspberry, gooseberry, and honeyberry plants; and an apple tree with four different varieties grafted together. Everything is thriving! Plus, I’ve been planting new flowers, keeping everything weeded, adding more herbs to our herb garden, and tending the vegetables that Bob planted on the south side of the house.
There are very few things I love better than going to a garden store and coming home with new flowers to plant, and I’ve been having a great time with it. I love being outside, and I’m determined to spend as much time at it as possible before it gets too cold to be enjoyable.
I’ve been feeling so good of late that I decided to go back to work part-time. So, in addition to serving as the copy editor for The Commons, I’ve started training to work as a personal care assistant for a little boy with multiple disabilities who lives right in my neighborhood. I did an online search for personal care assistant positions in Brattleboro and Keene, and I ran across the listing for the job on the Keene State College website. It was amazing to find it, because it turns out that his parents used to live in our house before us! As soon as I saw the listing, I recognized the name. And even more incredible? The little boy was born right here in our front room — where I’m sitting right now! Once I’m trained, I’ll be able to care for him at his house and at mine. He’s a sweet little boy, his moms are friendly, down-to-earth people, and his younger brother has a smile to melt your heart.
In addition to my jobs, I’m hard at work on two new books. One is a sequel to The Uncharted Path; it will cover all the ways that my life has improved over the past two years and will tell the story of how I got there. The other is an anthology of poetry and prose by autistics over 35, which I’m working on editing. I’m hoping to make a lot of headway on both before the fall, because I’ll be starting a part-time Master’s program in History and Culture at Union Institute and University. It’s a fully online program that will take me three years to complete. I’ll be putting together a curriculum in Disability Studies.
I love the fact that the program is online for many reasons, not the least of which is that I’ll be able to continue it when I go out to visit Ashlynne in Santa Cruz next year. I’m planning on an extended stay from late January to late March, which will have the dual effect of allowing me to see Ashlynne on the west coast and making it possible for me to escape the winter on the east coast. When I get back, it will be spring!
So that’s the news from here. Life is good. I hope all of you are well and thriving.
© 2011 by Rachel Cohen-Rottenberg
Look!
I saw some weird stuff outside today.
Can you see it? Look carefully.
No, it’s not the snow at the upper edge. What’s weird about that? It’s been here for-goddamned-freaking-ever for months. I’m talking the brown stuff. That’s called earth. It’s in my garden. It’s been under the snow. Now I can see it. I’d almost forgotten what it looked like.
These days, when I take my walks, I see this earth stuff everywhere. Sometimes, it’s mostly surrounded by snow, and sometimes, I just see whole swaths of it. It’s bizarre.
And then, I saw some even weirder stuff.
No, I’m not referring to the yucky wet leaves and decayed vegetation. I’m talking the light green thingies. Coming up out of the earth. Green growing things. New life. I saw some today, right outside my door.
It seems impossible. I keep running outside to check and make sure I’m not dreaming.
And then, oh my God, there’s this other weird thing happening.
It’s called sunlight. I know, because I was so confused by its appearance that I googled it, just to remind myself what in God’s name I was looking at.
You know what all this weirdness means, right?
Yup. Winter is OVER!
Yeah, yeah, yeah, I know. It’s not March 21st yet, and it can snow here all the way till May 1st, but as long as I can see brown stuff appearing, and green growing thingies coming up, and sun shining without casting long shadows by one in the afternoon, I know that winter is on the run.
I don’t mind winter, in the beginning. It’s always kind of fun to see the snow. And to bring in the wood and kindling. And to light the wood stove every morning. And to get out the warm winter clothes.
And then it gets to be around mid-January, and I am so done. Oh, God in heaven, I am so done. The cold. The darkness. The wind. The ice. The piles and piles of snow getting sooty from car exhaust.
Last year wasn’t so bad. This year, by January 15, I started seriously pining for the Bay Area.
My daughter, wise young person that she is, has determined that she will only go to college in a warm climate. And I, wise old woman that I am, find myself giving serious consideration to making an extended visit to see my daughter between January 15 and March 15 of next year. I figure, I can go to wherever she is, catch a glimpse of her occasionally, and then spend the other 99% of my time defrosting.
Sounds like a plan to me.
© 2011 by Rachel Cohen-Rottenberg
Holding the Space for Others
I’ve been having a crisis, of late, about my place in world. Kind of a big, high-flying topic, I know, but I seem to have somehow brought it down to earth today.
Whenever I try to explain the crisis, I have difficulty finding words that don’t make me look like a total schmuck. So I’ll just say it outright: I don’t feel particularly important in the world.
Now, before y’all start telling me that I am important, let me just stop you in your tracks and say, I know I am. We all are. We all have a purpose in life that no one else can fulfill. But it’s the definition of important that’s changed drastically for me, and the difficulty of letting go of the old definition is a measure of how completely bankrupt it really was.
The old definition had to do with achievement and recognition. For me, it was never one or the other, but both. I’m sorely tempted to list out all my achievements for you, and all the ways I’ve been recognized for them, but that’s the problem. I want to list them out, to be impressive, to say, “Look at me! Look at me! See how important I was…I mean, am!” But I won’t. Let’s just summarize and say that it has to do with my education and my work life, and leave it at that.
And all that is largely in the past. I want to get another master’s degree, partly for the sense of accomplishment, but mainly because there are a lot of things I’d like to study, and a master’s program would be a good structure in which to study them. But recognition? What’s it going to buy me, exactly? What do I really want?
What I want is some peace in the midst of all of the storms. I want to be able to have my outrage, speak my piece, and then have my peace. I want to fight the good fight and, whether I win or lose, know that I’ve won, because I did what was right. And I want to just live my life, and not worry about how I’ll deal with whatever the next storm happens to be.
Some time ago, I went to see a healer who told me that every soul brings into this life an error in perception that must be healed. I’m not so sure about that—I mean, how can one be sure about spiritual matters?—but I was willing to listen and see whether there might be a truth in there for me to pursue. She then proceeded to tell me that my soul’s error was to believe that I could not handle whatever came my way.
She nailed it. She absolutely nailed it. I don’t know whether I’ve accumulated this error over several lifetimes, or I just inherited this fear from my parents, or what, but I really don’t care. Somehow, I’ve gone after achievement and recognition all my life because I thought that it would protect me against all those difficulties that other people have to go through.
Not me. Oh, no, no. I’ve had enough difficulty for one life, thanks. Other people can take it from here. Not too much entitlement in my thinking there, eh?
I seem to have gotten past that foolish idea. Or, better said, life has seen to it that I get past that foolish idea. I’ve been through a lot of difficulty over the past 10 years. I feel like I’ve been stripped down to my essentials. It wasn’t anything I could have avoided. I didn’t cause it, and I couldn’t cure it. It all just happened. It’s as though life said, “Welcome to the human race, Rachel. Nice to see you’ve finally arrived.”
So here I am, needing to find another way to have peace. I know that part of having peace is to walk a spiritual path, and it’s been a long time since I’ve done that mindfully. But for me, having peace means more than that. It means finding purpose, and in the absence of all the Big Important Things I used to do in the world, I’ve been wondering what on earth that purpose could be. And then I started tripping over it, again and again, until I couldn’t miss it.
It started this past Thanksgiving. My husband was spending the day with his kids in Colrain, and I was spending the day with a friend. The plan was to get together at my house, have some food, and watch a show. I wasn’t planning anything grand, but I offered to make us dinner. My friend has a number of sensory sensitivities regarding smell and taste, and she warned me that, whatever I might make, she might very well not be able to to eat it. She said that she’s used to having to bring her own food, and that I shouldn’t feel badly if she couldn’t eat mine.
She clearly felt worried that I’d be feel insulted or annoyed, so I let her know that it was totally fine, and that since I was going to make myself a nice dinner, I’d just make double, and she could have some if she wanted to. So, Thanksgiving came, and I made some chicken and potatoes. I fixed it in a way that she liked, and we watched a movie while it was cooking. When it was time to eat, we came down to the kitchen, and I brought the food into the dining room. I was yacking about something or other, when I looked up and saw my friend frozen at the threshold of the dining room, looking really scared and upset.
I asked what was wrong, and she said she felt embarrassed, but somehow, she just couldn’t look at the piece of chicken on the bone; the thought of it having been a bird was freaking her out. She started to cry. Now, I know for a fact that your average person would have said, “Oh, for goodness’ sake. Don’t be ridiculous! It is a bird. Deal with it!” But I have had people say just those kinds of dismissive, insensitive things to me too many times, and it just isn’t in me to go there.
So I just went over and gave her a hug, and asked what I could do to make the situation work for her. She asked me to take the chicken off the bone and cut up the chicken into small pieces, so I did just that. And while we ate, I blocked her view of my chicken pieces so that she could enjoy her meal. And she was happy. I mean, really, really happy, in a way that only those of us who feel uncomfortable in most places in the world can truly understand. It was a small thing, but no small thing. After all, what’s more important than people feeling safe and respected?
And then I really saw it: This is what I do. I hold safe space for other people. I deserve no credit for it, any more than I deserve credit for being 5’1″, because it’s just instinctive. I know that it’s not in any job description or degree program on the face of the planet, but it’s what I do, and I do it well. It’s the reason that during my daughter’s growing-up years, all the children having difficulties at home ended up gravitating to our house. It’s the reason that my daughter’s best friend is now living with us. Yes, I now have two teenagers, born a little over two weeks apart, living in my house, sharing a room. And I’m ecstatic to be able to do it.
It’s not that there won’t be challenges. Any time you get people living in a house together, there are challenges, but I have a better sense of how to approach them now than I’ve ever had before. Some time ago, on Diane’s blog, we had a discussion about the difficulties we have when our kids go through tough times and we can’t solve things for them. So many of us who are “fix-it” moms have just this problem, and in responding, I realized that I’d already come upon the solution. Here’s what I wrote:
I know that feeling of “needing to be needed” and being the fix-it person. It probably accounts for why my daughter’s entrance into the teenage years provoked such a crisis in me. It’s not as though I had to let go all at once, but at some point, it hit me very hard that she was going through things that either she didn’t want to tell me about, or that I couldn’t fix even when she did. After all those years of intense child-raising and homeschooling, adjusting to her being at school all day and entering that phase of life in which she just didn’t depend on me so much was really hard.
The thing I figured out, which might help here, is that I’m still very much needed, but it’s more like “need in waiting.” I’ve joked for a long time that my job has become to knock on Ash’s door, say “Hi, hon. Need anything? No? Okay. Going now.” And if I just concentrate on those few seconds, it’s awful. I feel obsolete. But then I realized that what I’m really doing is holding the space in the house for her to walk into when she needs support, or wants to talk something out, or wants to share something. It’s a critical job. I think our kids really need us to hold that space in order to feel secure, and it’s pretty much a full-time job, since it entails taking care of ourselves and being present to what’s going on.
It sounds like you and I both need to know what our “job” is at any given time, and sometimes the job is just to create the mother space, you know?
I had no idea when I wrote that how much holding the mother space was just one iteration of what I do, but now it’s clear. The other night, when I met up with some fellow autistics in town, I offered my art studio space to a guy who wants to do some programs with kids on the spectrum. I let him know that the space would be there, and that he didn’t need to feel hesitant about asking for it. I was also able to articulate that, while I can’t do all the face-to-face things in the world I once did, I am very good at organizing things and supporting other people as they find their way. Later on, he told me that a lot of the anxiety he’s been dealing with for awhile began to dissipate after sitting with us and getting that kind of support.
It was music to my ears.
Truth be told, though, it’s kind of a strange job, holding the space. I mean, I keep thinking, I should be engaging more. I should be more assertive. I should, somehow, demand a place in the center, at least some of the time. But that’s all nonsense. I do have a place in the center. We’re all in the center. I don’t need to keep fighting for space with people. When I feel the need to compete for space, I’ve stopped creating spaciousness, and that’s what I need to do.
I don’t need to have a big physical space to do it, either. It can happen anywhere, and it does.
But I worry, sometimes, about who will hold the space for me when I need it. And then I think, I will. And my husband will. And my daughter will. And my friends will. And you all will, because you all do.
© 2011 by Rachel Cohen-Rottenberg
Happy Chanuka!
Tonight is the first night of Chanuka, and I’ve been busy making latkes nearly all day long. We’ll be lighting the candles and stuffing ourselves silly in a little while, so I just want to leave a quick note to wish everyone who celebrates it a very happy Chanuka. And all my best to everyone for a safe and enjoyable holiday season!
© 2010 by Rachel Cohen-Rottenberg
My Daughter, The Goalie
My daughter Ashlynne is a senior in high school and the goalie for her school’s varsity soccer team. Her school requires that all students play a team sport, which is a very good thing, or Ashlynne would never have gotten onto the field. When she started soccer in the seventh grade, she was under five feet tall, and she usually ran away from the ball.
Then, one day, in the ninth grade, Ashlynne began practice by volunteering to guard the goal while other players practiced their shots. One of the coaches noticed that she was playing in a focused and fearless way. In fact, the coach had never seen a kid guard the goal so aggressively. After a little bit of convincing, Ashlynne became a goalie. Now, in the twelth grade, she’s 5’7″ and a team leader. Here are some photos from her first two games this season. (Ashlynne is the one in the black shirt.)
Fun times!
© 2010 by Rachel Cohen-Rottenberg
Working in Harmony with Myself
As I watch my book make its way into the larger world, I find myself looking back over the changes that have happened since I finished writing it this winter, and I’m amazed. I’m able to do a great deal more than I thought possible back then. Many of the things I can now do are very humble according to the values of the world we live in, but they mean a great deal to me, because I’ve always enjoyed doing the little things in life. In addition to doing the laundry and washing the dishes (two activities that have always stayed with me), I can do the following things once again:
Food shopping: Going to the co-op is no longer the aversive experience it once was. As I’ve mentioned before, I go in with my earplugs, I communicate in writing, and I enjoy the whole thing. I would love to be able to take out my earplugs there and just talk, but it’s far too crowded and noisy, even during a slow time, and I know that it would cost me too much energy, so I conserve. I love being able to go and buy my own food, though. Since my life, now and always, is a triumph of organization, I try to plan things so that neither Bob nor I needs to go to the store more than a couple of times a week. On the other hand, if we’re missing a few things, I don’t mind popping down to the store to pick up what’s needed on an ongoing basis. I enjoy it. Go figure!
Housecleaning: A couple of months ago, our housecleaner shattered her wrist playing softball. (Ouch!) While she’s recovering, Bob and I have been cleaning the house ourselves, and it’s been okay for me. My main difficulty has always been the dizziness that comes with my vestibular issues, but I’ve learned how to move my body slowly and carefully so as to avoid a lot of it. I’ve been sweeping, mopping, cleaning the bathroom, and straightening the house. I’m one of those very weird people who actually likes housecleaning, so this is a big plus for me.
Cooking: I have rediscovered the fun of cooking. For a long time, those vestibular issues kept me from it, because it was difficult to lean down to get pots and pans out of lower cabinets, and to reach up for bowls and dishes in upper cabinets. But, as with housecleaning, I’ve learned to move my body slowly and carefully to avoid dizziness as much as possible. As a result, among other things, I now make a great Mexican Mole and Curried Tofu; the latter is simmering on the stove as I write. I’ve also been making gluten-free, dairy-free peach crisp (courtesy of our peach tree that gave us fruit in abundance this year) and having it for breakfast every morning.
Driving: I’m driving again. I’m not commuting 50 miles every day, mind you, but when I need to get somewhere, I can get in the car and go. For instance, I have a friend who doesn’t drive. When she comes over to watch a movie, I pick her up, bring her here, and then drive her home afterward. I’m fortunate in that I live downtown and much is available to me without driving. I love to walk and I can get just about anywhere on foot. But it’s very nice to be able to drive when I want to. I’m planning on driving to my daughter’s outdoor soccer games this fall.
Keeping track of finances and paying bills: For most of my adult life, I paid every bill and accounted for every penny. I was the primary (and for several years, the only) breadwinner in my first marriage, and keeping track of the finances was always my responsibility. I chose it, because it gave me a sense of competence and control—and because I hugely disliked trusting someone else to get it right. When I married Bob and quit my job, I let him take over the bill paying and finance tracking, because I trusted him and wanted the break. Lately, though, I’ve missed it. So now, in addition to handling the finances for my book, I’ve again taken on the responsibility for paying the bills, for keeping track of our expenses from day to day, and for ensuring that there is always sufficient money in our accounts.
Running errands: Remember when I cringed at the idea of running…an…an…an…errand? Now, I look forward to it. I don’t try to do too much in one day, but I like going to the post office, the bank, the art supplies store, the hardware store, and any other place without loud music cranked up. I use my earplugs much of the time for running errands, mainly to keep out competing sounds that my auditory system has to work too hard to process and manage. But if I have a question, or need to pay for my items, I can take out my earplugs and talk a bit. Of course, if I sense that any ambient noise is going to become aversive, I put my earplugs back in and let the person know why.
Staying at home while Bob is travelling: This task used to be my biggest challenge. For instance, I’d been going down to New York City partly because I liked travelling out of town once in awhile, partly to see Bob’s dad, and partly to avoid being by myself. But now, I find myself really enjoying the time alone. The last time Bob was out of town, I painted the door and baseboards in the hallway, cooked up a storm, ran a few errands, did artwork, and slept well, without any fear and trembling at all. What a tremendous change! It’s been a long time coming. Glad I got there.
Going to appointments in which I need to talk and listen for extended periods: Now, sometimes talking works, and sometimes, it doesn’t. Everything depends upon the level of ambient noise, whether the other person is in a rush and talking quickly, how many people are in the room and participating in the conversation, and whether I have time to write things down and ask for clarification. The last time Bob was away, I went up to the local community college to discuss taking some online courses there. I needed to sit down with an advisor for an hour or so, and before I went, I called the office (via TTY) and told the advisor just what I needed. I told her that if there were too much noise or too much rush or too many people, I’d need to use my UbiDuo text-to-text device. As it turned out, she was very sensitive to my needs and we had a very enjoyable conversation in a very quiet place. Unbelievable. I decided not to take courses this fall after all, but I was glad that I was able to explore the option. Six months ago, it would have seemed overwhelmingly beyond me.
Doing community work: I’ve had some false starts and stops on the way to figuring out what works for me. Working at the thrift store really can’t work, because of the crowds and the music, and I’ve been able to let go of that. I’ve been making knitted items for the store to sell this winter, and I’ll continue to do mending work as needed, but I can’t put myself out into the community by working in crowded spaces. However, I’ve begun to find my stride since becoming the Chapter Leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). In this role, I’ve been working to find a space to create a sensory-friendly art studio and gallery in town for people on the spectrum. I went over and looked at a place last week, and loved it, but it wasn’t wheelchair accessible; since full inclusion is the name of the game here, I am continuing to look. As anxiety-producing as it is to talk with people I don’t know, I am getting out there and doing it, making contact with people about possible spaces, and beginning to get more comfortable with the whole process.
In addition, I’ve made contact with the people who run The Vermont Partnership for Fairness and Diversity, a civil rights organization based in Brattleboro that has disability rights as part of its larger charter of supporting a culturally diverse, safe, and respectful community. We are beginning a conversation about the ways that ASAN-VT can work with the organization to further our mutual goals. I’ve also begun to work on putting myself out there as a speaker on issues related to autism and disability rights. So all that is very positive.
Making friends: Yes, Virginia, autistic people can have friends. I have begun making new friends, both autistic and non-autistic, and I really enjoy my time with them. I have learned that I have to seek out sensitive people, no matter what their basic wiring. Sensitive people will respect my experience and listen to what I need, and I can offer exactly the same to them. I am a highly sensitive person, so it makes sense that I would be most compatible with other highly sensitive people.
So Rachel, what happened? Did your autism get better? No, my autism didn’t get better. And, as I understand it now, it hadn’t gotten worse before. It’s becoming clear that the loss of abilities I was experiencing for a few years wasn’t the result of autism, but of failing to take autism into consideration and live my life accordingly.
As I’ve mentioned before, I spent the first 50 years of my life doggedly attempting to eat, work, play, speak, act, and drive myself to achieve like a typical person, and then some. I didn’t just go full steam ahead like a person with a typical neurology. I went beyond even that, probably in an attempt to compensate for what was different about me. Even if I had had typical wiring all those years, I could have easily driven myself into the ground. As it was, I was like a person with mobility issues trying to run a marathon every day and keep up with people whose bodies worked differently from mine. Burnout was inevitable.
In a few short years, I seemed to go from super-functional to struggling with basic things, like going food shopping. I thought it was the autism catching up with me. It wasn’t. It was my lifelong ignorance of my being autistic that was catching up with me. For 50 years, I didn’t know that I was autistic, so I couldn’t take care of myself properly. I never rested. I never gave myself a break. I never took care of my sensory needs. I never said “I can’t” when I couldn’t do something. I just drove myself, and drove myself, and drove myself, thinking that with just a little more effort, everything would work out. And then, when the burnout hit, I had to stop, and suddenly, I found myself unable to do a great deal.
And now, nearly two years later, I can feel how much my body and mind have healed from the effects of burnout. Now that I understand how I work, taking care of myself has become a reflex. Taking breaks has become integrated into the fabric of my life. Making my needs clear has become a necessity. Being open about the adaptations I need to make has become a source of pride. And acknowledging what I cannot do has become an enormous relief. And what are the things I cannot do? I cannot tolerate noise, so I wear earplugs. I cannot talk with people with a lot of ambient noise, so I ask for quiet. I cannot follow a constant stream of speech, so I ask people to slow down. I cannot afford to burn up energy by going into auditory overload, so if I feel that it might happen, I bring my text-to-text device and let people know that we may need to use it. I am unable to focus in the midst of crowds of people, so I find other ways to be with people, and I feel free to excuse myself from situations that push me past my sensory limits. I cannot schmooze, make small talk, be indirect, or do social networking, so I do not try. I socialize my own way: I talk about substantive things, I listen to people’s problems and attempt to come up with solutions, and when no solutions are possible, I do my best to be friendly, compassionate, and present.
And yes, the world is not exactly set up to make my way of being easy, and so I have to advocate for myself as well as I can. Self-advocacy has been the single most healing, empowering endeavor of the past two years, and I am actually getting pretty good at it. Being a woman and disabled, I’ve got a double set of messages to overcome about sitting down and shutting up, but I am overcoming them just fine, day by day, and I am committed to doing so.
And, just to give credit where credit is due, I have to mention the fact that the process of getting off the Lorazepam has been one of the most healing things I’ve ever done for myself. I’m down to .35 mg per day, and if all goes according to schedule, my last drop of Lorazepam will be on January 9, 2011. And what a difference it’s making! When I was taking 1.5 mg/day of the stuff, my emotions were all over the place, my sensory sensitivities were through the roof, and my brain was so fogged that I couldn’t think straight. My husband has been noticing that my emotions are much more moderate, positive, and under my control. I’m becoming increasingly aware that my sensory sensitivities have become more manageable. And my thoughts only become sharper by the day.
Accepting my disabilities and working with them have been the key to healing the burnout and enjoying the things that are meaningful to me. The first 50 years of my life were about surviving. I’m no longer just surviving. I’m living and thriving, and I intend to continue doing so every day for the rest of my life.
© 2010 by Rachel Cohen-Rottenberg
A Strangely Ordinary Life
Something extraordinary has happened: my life feels ordinary. And I mean that in a good way.
Part of the reason is that my withdrawal from the evil benzo continues to go well—not always easily, but well. I’m now down to .4 mg per day. On Monday, I started using the liquid version of the medication, so I don’t have to split my teeny tiny pills into quarters anymore. I am so relieved. I take just one drop in a bit of applesauce, four times a day, and instead of cutting my dose every week, I’m now cutting my dose every three weeks. From what I understand, I need to go slowly from .5 mg to zero because my brain is waking up, and it’s important that it wake up gradually, rather than all at once. So, I’ve made myself a reasonable schedule, my doctor is supportive, and I should be off the meds by the end of the year. Can’t wait…but I have to.
Having tapered off the medication by more than 1.5 mg, I feel alive again. I still have my sensory-sensitive “I don’t-want-to-go-anywhere” days, but even on those days, I force myself to go out for a walk in a quiet place, just to keep my connection to the world intact. I’ve finally figured out that my connection to the world is not limited to the world of human beings, but to all of creation, so I walk and appreciate the trees, and the colors, and the breeze blowing, and even the incredibly humid weather. I carry my camera with me everywhere, and I’ve been taking lots of pictures, which helps me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world has become one amazingly interesting place. I’ve also started drawing and painting, so my eye is growing keener by the day.
But the med withdrawal only explains part of it. Mostly, I’m having an experience that I can only describe as an ever-deepening sense of being fine just as I am. I don’t feel inclined to explain myself, to justify my earplugs, to overcome my lack of small talk, or to pathologize my fascination with the visual world. I don’t feel that I have to stay anywhere any longer than it works for me, or apologize for what I can’t do, because after all, who can do everything anyway? No one I know. Far from it.
Above all, I seem to have made a surprising amount of peace with my essential aloneness. I’ve been reading a book called The Wounded Healer by Henri J.M. Nouwen, and it’s been giving voice to many things I’ve been feeling for a long time. The book is written from a Christian point of view, which makes parts of it very hard going for me, but there are moments in which the author’s theology falls away and the book just sings to me. For example, Nouwen writes that the condition of every human being is to be lonely, and that if we don’t accept our loneliness, we make all kinds of demands of the world that leave us wrecked. From his perspective, the only thing to do is to embrace this loneliness, knowing that it is the experience of all people, and to let others know that they are not the only ones. This task, in and of itself, is a terribly lonely one. Like the bodhisattva who cannot share his experience with many and yet allies himself with all, the person who embraces her loneliness knows that, most of the time, most people are trying desperately to flee their own.
This insight echoes what I’ve long felt: that being autistic, I am no more lonely than anyone else, but that others have many more social opportunities to run from their loneliness than I do. I have to face my aloneness, whether I want to or not. When the day is done, though, and the darkness comes, and people return home to empty houses and the privacy of their own souls, we share a common experience. In describing the life of the minister, Nouwen could very easily be describing our lives as autistic people:
“The painful irony is that the minister, who wants to touch the center of men’s lives, finds himself on the periphery, often pleading in vain for admission. He never seems to be where the action is, where the plans are made, and the strategies discussed. He always seems to arrive at the wrong places at the wrong times with the wrong people, outside the walls of the city when the feast is over…The wound of our loneliness is indeed deep. Maybe we had forgotten it, since there were so many distractions. But our failure to change the world with our good intentions and sincere actions and our undesired displacement to the edges of life have made us aware that the wound is still there…When someone comes with his loneliness to the minister, he can only expect that his loneliness will be understood and felt, so that he no longer has to run away from it but can accept it as an expression of his basic human condition.” (86-92)
These words just knocked me out, in the same way that discovering my autism knocked me out. In both cases, my life suddenly came into focus, and I found a mirror in which I could recognize myself. Now, I no longer go about my daily life looking for the magic key, or the decoder ring, or the person who will unlock the mysteries of the world so that I can enter. I’ve already entered. I’m here. The world belongs to me, as it belongs to every other creature that exists, and I experience things essential to being human. So now, I enjoy my forays into the world. I go to the co-op to buy a few items of food, and I no longer dread it. It’s still not easy to go food shopping. I still have to block my hearing, communicate with my “I can’t hear you” cards, and limit my time and energy so that I don’t overdo it. But somehow, all of that is all right. I look forward to buying food that nourishes me, being kind to people, and enjoying the walk.
I’ve also been going to the art store to buy supplies, and it’s fun. Yes, fun! Yesterday, I ran into two autistic friends there. It felt so good to know others, and to be known. I took out my earplugs a bit and talked. We didn’t talk for a long bit. I know when I’m reaching my limit, and I respect that, and lo and behold, other people do, too. And later on, after I’d looked at every mat and picture frame in the store, I made a bit of conversation with the lovely woman at the cash register, who looked at everything I was purchasing and said, “It looks like you’re going to go home and have fun!” And she was right. I said, “I love coming here because it’s fun to see everything you have, it’s fun to pick out what I want, and then it’s fun to go home and use it!” She seemed pleased. And then I went home, and I rested a bit, and then I got to work framing some photos.
How did I feel? Was I tired? Was I overloaded? Probably. But it was okay anyway.
What’s come into focus for me is that my challenges, my tiredness, my loneliness, my sadness, my confusion, and my fear are nothing extraordinary. When I was measuring myself against an ever-elusive norm of “happiness,” I kept rebelling against all of my so-called “negative” feelings, waiting for them to just go away so that I could be happy. And now I’m happy, precisely because I don’t want them to go away. When they come, I accept them. I even embrace them from time to time, because everything I feel is human, and everything I feel is the lot of every person. And when they go, I accept whatever replaces them. As Nouwen writes so beautifully:
“Many people suffer because of the false supposition on which they have based their lives. That supposition is that there should be no fear or loneliness, no confusion or doubt. But these sufferings can only be dealt with creatively when they are understood as wounds integral to our human condition…No minister can save anyone. He can only offer himself as a guide to fearful people. Yet, paradoxically, it is precisely in this guidance that the first signs of hope become visible. This is so because a shared pain is no longer paralyzing but mobilizing, when understood as a way to liberation. When we become aware that we do not have to escape our pains, but that we can mobilize them into a common search for life, those very pains are transformed from expressions of despair into signs of hope.” (93)
Somehow, his words have had this mobilizing effect on me. Hopefully, as autistic people, we can search for life together, in all its fullness, knowing that we each walk alone, and we all walk together.
© 2010 by Rachel Cohen-Rottenberg
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
Autism, Insomnia, and Pharmaceuticals
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
