Читать книгу Blazing My Trail: Living and Thriving With Autism - Rachel B. Cohen-Rottenberg - Страница 4

The curious paradox is that when I accept myself just as I am, then I can change.

— Carl Rogers

In November of 2008, at the age of 50, I was diagnosed with Asperger’s Syndrome. This diagnosis led to a process of self-reflection that culminated in the writing of my memoir, The Uncharted Path: My Journey with Late-Diagnosed Autism.

After the book was published in July of 2010, I found myself wanting to believe that I had told my story, once and for all. While I knew that my life was rapidly changing, I wanted my book to incarnate me—to say, in the words of the poet Matthew Arnold, “Time stand still here!” But, of course, time doesn’t stand still, nor do we. The reality is that our lives can, and do, change—sometimes dramatically.

For most of my life, I had been a very high-functioning person, but by early 2009, I felt burned out, overwhelmed, and exhausted. As I watched my memoir make its way in the world, though, I became amazed by the changes that were happening in my life. After finishing the book and sending it off for publication, I began to be able to do a great deal more, and with much more enjoyment, than I had before. And now, as I write these words in mid-2011, my life is happier, more productive, and more fulfilling than ever. I have recovered from the burnout and regained my independence, my self-esteem, my energy, and my sense of purpose.

In The Uncharted Path, I listed the tasks with which I was having difficulty and needed assistance. They included:

•Food shopping

•Sweeping and mopping the floors

•Cooking

•Driving

•Running errands

•Going to appointments

•Being alone

•Planning, executing, and transitioning between tasks

•Working at a job

•Making friends

And here is where things stand now.

Food shopping. Going to the food co-op is no longer the sensory-aversive experience it once was. I now use Sonic Defender earplugs whenever I am there, rather than the noise-blocking headset I once had to wear. The earplugs allow me to block ambient sound while being able to hear a person talking with me directly. With my earplugs, I have been able to put sound in the background for the first time in my life and to attend to a person speaking to me without becoming overwhelmed.

As a result, I’ve experienced a new sense of freedom and power. I can now carry on a conversation at the co-op without needing to resort to writing things down. I love going there, buying my food, choosing flowers to plant, and making friendly conversation with the people I meet. I go several times a week and I always look forward to it.

Keeping house. My main difficulty with housecleaning had been the dizziness that attends my vestibular issues. But over time, I began to learn how to move my body slowly and carefully so as to avoid feeling physically off balance. After a while, I adapted so well that I took over all the cleaning myself and no longer needed assistance. Since then, I’ve been vacuuming, mopping, dusting, cleaning the bathroom, and doing all the other household chores. Because I’m one of those very weird people who actually likes these activities, regaining my ability to do them has been a big plus for me.

Cooking. I have rediscovered the fun of cooking. For a long time, my vestibular issues had kept me from it, because I had found it 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 I did when 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, Curried Tofu, and Lemon-Garlic Chicken.

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 without any difficulty.

I’m fortunate in that I live downtown and much is available to me without driving. I love to walk and I can get to many places on foot. But it’s very helpful to be able to drive when I want to, especially since I was able to attend my daughter’s high school soccer games this past fall and to visit people in other towns, including a young man with cerebral palsy whom I’ve befriended.

One of the reasons that driving has become enjoyable is that I’ve spent the past few years protecting my hearing. Before I started blocking sound, I was spending an inordinate amount of time parsing it and becoming overwhelmed by it. As a result, I did not have the energy for fully attending to my other senses, particularly my visual sense. Driving became difficult because I felt overwhelmed by visual phenomena. Now that I have given myself permission to put sound in the background, my other senses have settled down considerably, and the visual world, far from being overwhelming, gives me great delight.

Keeping track of finances and paying bills. For most of my adult life, I had the responsibility of paying every bill and accounting 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 job. I chose it, because it gave me a sense of control—and because I hugely disliked trusting someone else to get it right.

When I married Bob and quit my job to be a full-time, homeschooling mom in 2003, I let him take over the bill paying and finance tracking, because I trusted him and, frankly, I wanted the break. After a while though, I found that I missed it. So now, in addition to handling the finances for my books, I’ve again taken on the responsibility for paying the bills each week, for keeping track of our expenses from day to day, and for ensuring that there is always sufficient money in our accounts.

Given that these activities combine my love of organizing things, my keen attentiveness to detail, and my innate good sense when it comes to money, I get a lot of satisfaction out of them.

Running errands. I once cringed at the idea of running…an…an…an…errand. The possibility of auditory overload made me very anxious. But now, I look forward to going out and about. 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 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 converse.

Going to appointments. When I have an appointment, 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 take notes and ask for clarification.

One day last year, I went up to the local community college to discuss taking some online courses there. I needed to sit down with an adviser for an hour or so, and before I went, I called the office by means of the text relay service and told the adviser just what I needed. I let her know that if there were too much noise, or if we were too rushed, or if there were too many people in the environment, I’d need to use my text-to-text device.

As it turned out, she was very sensitive to my needs, and we had a very enjoyable verbal conversation in a very quiet place. I decided not to take courses there after all, but I was glad that I was able to explore the option. Six months before, it would have seemed overwhelmingly beyond me.

Being alone. Staying at home while Bob was traveling was my biggest challenge. For a while, I’d go with him on his frequent visits to New York City—partly just to travel out of town once in awhile, partly to see his dad, and partly to avoid being by myself, with all the fear and trembling being alone engendered.

But now, I find myself enjoying the time alone. I love when Bob is here and I also love my solitude when I have the house to myself. I no longer suffer from anxiety and loneliness. In fact, when I am alone and in quiet, I find that I have even greater focus, discipline, and peace than ever before.

What a tremendous change! It was a long time coming.

Planning, executing, and transitioning between tasks. It’s been so long that I’ve had a problem in this area that I barely remember what it felt like. Now, I plan tasks with ease and I look forward to putting them into action—whether it’s putting together a shopping list before going to the co-op, planning and cooking a meal, paying bills, balancing our house accounts, writing, editing, gardening, or any number of other activities.

What seemed like a life-changing difficulty two years ago is now so far in the past that I can see it for what it was—the result of a temporary low point from which I have recovered. With my renewed ability to put my gifts for organizing and planning into play, the quality of my life has improved dramatically.

Working at a job. I’ve had some false starts and stops on the way to figuring out the best fit. Working at the local thrift store didn’t pan out for me, because the crowds and the music tended to overload my hearing. I’ve been making knitted items for the store to sell each winter, but I can’t work in crowded spaces. My auditory sensitivities make that impossible, even with ear protection.

However, I’ve been able to bring all my years of editing experience to my work as a copy editor for our local, award-winning, independent weekly, The Commons. It’s great to be working again, especially for a nonprofit paper, at a job I enjoy.

I am also putting my love of helping people to work in my position as a personal care assistant to a little boy with multiple disabilities. After being thoroughly trained in how to respond to his needs, I care for him both at his home and at my own.

And, in the fall of 2011, I will be pursuing a master’s degree in History and Culture through Union Institute and University, with a concentration in Disability Studies. Union offers a fully online master’s program that will take me three years to complete.

Making friends. Over the past two years, I have begun making new friends, both autistic and non-autistic, and I love my time with them. I have learned that I have to seek out sensitive people, no matter what their neurology. 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.

I’m also incredibly fortunate to live in a very friendly neighborhood. I enjoy chatting and laughing with the neighbors and helping them out. On my walks, I have all kinds of interesting talks with people, much as I did when my daughter was young and it seemed that I knew everyone in town.

So Rachel, what happened? Did your autism get better? No, it didn’t get better—for the simple reason that it had never gotten worse. It only felt as though it had. I’ve since realized that the temporary fluctuation of abilities I was experiencing a couple of years ago wasn’t the result of autism, but of failing to take autism into consideration and live my life accordingly. In other words, because I didn’t know that I had Asperger’s, I couldn’t manage the condition—or my life—properly.

I spent the first 50 years of my life doggedly attempting to eat, work, play, speak, act, and 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 a lifetime of being 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 being autistic that was catching up with me—along with the fact that I’d been put on medication that was wreaking havoc with my sensory and emotional life.

Before my diagnosis, I never rested. I never gave myself a break. I never took care of my sensory needs. I never said “no” to anything. I never understood the impact of medication on my body and mind. 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 struggling.

Two years later, my body and mind have healed from the twin effects of burnout and harmful medication. 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 getting off the medication that had inflamed my sensory and emotional sensitivities has given me back my life.

In learning to take care of myself, I have said goodbye to meltdowns and welcomed a great deal more calm and reason into my everyday experience.

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. The process of learning to self-advocate, which has involved understanding our culture’s attitudes toward disability, has been a healing and empowering endeavor. 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.

Accepting my disabilities and working in harmony 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. But 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.

This book tells the story of how I got there.