Sometimes I feel completely inadequate in the face of our society’s insanity. Sometimes I wish I weren’t a part of the human race. Sometimes I feel so much rage at all that’s WRONG with the world, with the mess we’ve made of our planet and each other. Sometimes I just want to go live in a cave in some part of the world that isn’t inhabited by other people, just me, my husband, my children and a few select others. I want to build a new world, a new community, a new set of societal rules where minority doesn’t equal less. Where prejudices weren’t tolerated, where people helped each other without expectations of what they would get in return. A place where people understood that the reward in helping and being of service to our fellow human beings was in the act of doing and not in the form of monetary gain, gold medals, our names engraved on plaques or statues carved in our likeness.
I spent most of my twenties and half of my thirties in hiding. I hid inside my eating disorder. I drank more alcohol than my body could cope with, I smoked cigarettes, I took drugs, I did anything I could NOT to be present. Even in those moments when I did manage to show up, I wasn’t really present. Not completely. Not really. I was angry and hated how angry I was. I was depressed and hated how depressed I was. I couldn’t face any of it, for so many years, I just couldn’t. Eventually I became suicidal. I couldn’t stand the feelings any more. I was filled with so much rage, I turned it inward and thought the answer was to kill myself. I remember I fantasized about driving to a state where I could buy a gun. That was how I wanted it all to end. I would blow my brains out. I was seeing a therapist and when I admitted this to him he said, “You have to go to a 12 step program. You have to find people who are struggling with an eating disorder just as you are.” When I told him all the reasons why this was not a possibility he leaned forward and said, “What have you got to lose?” I will never forget that. I will never forget how he looked at me. I will never forget the feeling I had when he said those words – “What have you got to lose?”
So I went. And I hated it. A bunch of obese people, a couple of anorexics and an assortment of others sitting around talking about how they couldn’t stop eating or starving or obsessing. I was horrified. How had I ended up here? Wasn’t I different? Wasn’t I better than this? I remember I looked around that circle of people in that dingy room lit with strands of donated christmas lights, despite the fact that it was March, and the signs with various slogans plastered on the wall – “We came for the vanity and stayed for the sanity” and “One Day At a Time” and “Progress not perfection” and I thought to myself, I have entered hell. This is not what I want. This is not where I want to be. I am not one of these people. I am BETTER than them. I don’t NEED to be here.
But I stayed. Because really, where else was I going to go? I knew what lay outside the door of those rooms. I knew, left to my own devices, I would binge and puke and rage and cry and binge and puke. I knew the cycle, I’d been doing it for more than twenty years. So I kept going to the “meetings” and I bought the literature and people gave me little notes with their phone numbers and hearts on them that I’d promptly throw away, but they kept giving me more notes with more little hearts and more phone numbers and eventually, eventually I called one of these people and they took the time to talk to me. There were the steps, each one mapped out a way of behaving that was different from the way I lived my life, so I began doing them, never once thinking that those “steps” would become a way to live my life more than a decade later. There was a great deal of talk about taking the next right action, staying in the present, taking things slowly, changing ingrained behaviors and being of service. There was talk of “god” and again I felt there was no hope for me. How could there be? I didn’t believe.
I have never believed in god, I’ve tried, I just don’t, but I do have faith. I have faith in human being’s ability to do great things if we are shown how. Some of us need more help than others. I’m one of them. I needed a great deal of patience, support and help. I needed to have my hand held by those who had once been where I was. I needed others to show me the way. I needed to hear about their struggles, I needed to know that I wasn’t alone.
When Emma was diagnosed, I had a road map, instructing me, helping me. All those meetings spent in dingy basements without heat in the winter or air conditioning in the summer had shown me another way. I knew, if nothing else, I had to keep showing up. There were days I didn’t want to. I’ve done a great number of things I wish I could take back. I’ve made countless mistakes. But I know, I know with all my being that hiding, that not showing up, isn’t an option. So I research, I read, I reach out to Autistics, I listen, I ask questions and I try to learn everything I can so that I can better understand and help my daughter. In helping my daughter, I am helping myself. I am helping myself become a better human being. There are mornings when I wake up and think, What the hell am I doing? I don’t know how to do this. I don’t know what the right decision is. Is this the right school? Is this the best therapy? Does she understand? What would she say if she could communicate her thoughts? What would she tell me?
Much of the time I don’t know. What I do know is that the basic principles and actions that got me free from the grip of my eating disorder are the same actions and principles that help me parent both my children. Be honest. Find safe people to talk to. Have the willingness to show up. Be present. Reach out to others. Ask questions. Listen. Really listen. If I’m overwhelmed, acknowledge that. Take a break. Sometimes doing nothing is better than doing something. But the thing that helps me more than anything else (I know I’ve said this so many times) is to be in conversation with Autistics. When I am feeling sad or confused, or overwhelmed, or have questions, I reach out to my Autistic friends. And even when they don’t know the answer to my question, they remind me of what’s possible. They remind me that my neurotypical take on my daughter is often incorrect. They remind me of all the misinformation out there. They remind me of what is important.
So for any of you reading this who are despairing, who feel it’s hopeless, that the divide between your child and you is too great, know this: There are hundreds and hundreds of verbal and nonverbal Autistic adults who are blogging, on Facebook, on Twitter, they are talking, they are asking to be heard, they are asking to be respected, they are asking for the same rights as any other human being, they are asking to be treated as you would want to be treated. Reach out to them. Google, read books, read blogs, get on Twitter and Facebook, do the research, ask questions, make comments. If you’re suicidal or feeling you can no longer cope, get help. Get support. There are a great many organizations like 12-step programs that do not cost anything, but rely solely on donations given voluntarily. Find the people whose voices resonate and then find more. Because really, what have you got to lose?
2002 – Me with Em and Nic
Emma's Hope Book 