There is Always Hope, Sometimes It’s Hard To Find

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

22 responses to “There is Always Hope, Sometimes It’s Hard To Find

  1. aman too
    love it

  2. I know you’ve “outed” yourself to varying degrees here about your bulimia, alcoholism etc. And while these are anonymous programs (i.e. no one else there is supposed to “out” you), you have a very bright light to shine for others who have either been there, or are still trapped in that despair and hopelessness. I’ve spilled a lot of personal beans on my own blog as you know. Sometimes I worry it will embarrass you or the kids or the family, but the truth is the truth and maybe the truth will help other people get more honest about their warts and all. For the record, I admire you more than anyone I’ve ever known. After spending almost 14 years together I’ve seen you push yourself over and over to be as honest as you possibly can be, regardless of whether that puts you in an unflattering light. Frankly, I think it always puts you in a flattering light because honesty matters a lot more than pride. Honesty takes courage. You have this in abundance. The bravest hearts are usually the most compassionate. You share this daily. You are my greatest hero. You knew that, but maybe “they” didn’t.
    Oops. Just outed myself again.

    • You are MY hero! The post was already getting to an epic length so I didn’t mention the whole anonymous aspect, but it’s an important point and a good one and it’s there for good reason. None of us gets to be a leader in these programs, “we are, but trusted servants” yet power, ego and greed get in the way of that. You and I have talked about this before, but what an amazing world we would live in if all of us adhered to the principles of the 12-step program.

  3. Ariane,
    The honesty, content and eloquence of your message is beautifully stunning. I will use no more of my words as they are inadequate, but instead, I would like to share two of the many passages I have underlined in Alcoholics Anonymous’ Big Book…

    “The feeling of having shared in a common peril is one element of the powerful cement which binds us.”

    “But in those days I had no one to whom I might take my troubles. Today I have. Today I have Someone who will always hear me; I have a warm fellowship among men who understand my problems; I have tasks to do and am glad to do them, to see others who are alcoholics and to help them in any way I can to become sober men.”

    It is a privilege to be in autism fellowship with you.

    Charlotte

    • Charlotte! I feel the same. Thank you for that passage. Think of a world where we gave to one another in fellowship, where each of us was respected as a human being, not for our gender, skin color or neurology. Think of a world where we had no leaders, but instead each person in a role of leadership were trusted servants, servants to the earth and mankind. Think if all of us helped one another with no expectation of reward, but did so because that was what we, as human beings do, because it’s right, because we are all part of a larger effort, because it is important and none of us should ever feel a part from or alone. Because to do otherwise is not a life any of us want to live.

  4. You are preaching to the choir my friend. And sometimes I physically hurt when I see, when I feel, just how far this world is from the one you just described. Sometimes all I see is madness and I have to shut down to make it stop. To quiet my head. How do we get mankind to stop drinking the power and greed laced kool aid? I don’t know. I just try to stay away from the stuff and, as Gandi said, “Be the change you wish to see in the world.”

  5. Ariane – ok, I’m bawling. And if even a tiny part of you wrote this with me in mind, thank you – because I really needed to read it.

    As you know, I’m having a very difficult time coping. I am seeking help. I am seeing a psychiatrist. They are trying to figure out a good medication regime for me. Right now, I’m having panic attacks daily, and have been for a few months.

    One day after therapy a few months ago, Risa had been having a really bad time, being violent, etc. When we left, I just lost it. I screamed at her – horrible things I don’t even want to repeat. Things I know she’ll never forget. Things I can’t take back. Three days later, I went to the ER with tachycardia and palpitations. It’s been downhill ever since.

    I am trying, trying so hard. The last nine years of dealing with severe autism, and losing my hair, has just unraveled me. I’m not suicidal. I lost my brother that way and could never put my family through something like that. But I do need help, and I know it, and am trying to get it. We have no health insurance currently, or money. So yeah, it’s hard. But I am trying, and will continue to try.

    I got a book from the library today called Cutting Edge Treatments for Autism, 2011-2012. Just *skimming* through it gave me a panic attack.

    The only thing I want out of life is to be calm, and functional. It’s been so many years since I’ve been in a good place, I’ve forgotten what it’s like. 😦

    Thank you for letting me reach out to you. It means the world to me.

    • “Dear Angie” – that was the way I started the post, but then deleted that because I didn’t know how you might feel. But since you’ve written this I can tell you. This post was written for you. Because, Angie when you write me I remember. When you write about your despair and your feelings, I remember what it felt like to feel that way. That feeling that you can’t get up in the morning because you don’t know how you’re going to move or hold your head up or make small talk or smile or even say hello. That feeling of self loathing because everything that came out of my mouth was somehow wrong, or should have been said differently or better. That feeling that not only were my actions wrong, but my thinking was wrong. That voice of almost relentless criticism that was never silent, that nothing I could do would ever quell it, that feeling that nothing would ever change, that it would just go on and on like this and what was the point?
      When I started writing this morning, I wrote, “Sometimes people reach out to me and their words haunt me…” It was all to you, Angie, and your words make me think and they make me remember. I know it’s hard when you feel so completely overwhelmed, I know it’s hard to believe that anyone could really understand, and while our circumstances are different, I do understand the feelings you’ve described. I do. I have. In reaching out you help me, you help me remember and you help me see how far I’ve come. By remembering I am given even more hope, so you see, you help me and I can only hope I, in turn, help you.

      • I knew…I somehow knew this post was directed at me. I’m honored you would take the time out of your life to help someone like me. It gives me hope knowing someone like YOU could have been, at some point, a complete mess like me! You’re amazing. I look up to you, I truly do. And I hope to one day be in the happy place that you are at – because right now, it truly looks like I may never get there. But my promise is to keep trying.

        I have alot of things in life that I either need to accept, or it will simply destroy me. Marisa might not get better. You’re right, I don’t KNOW that. I hope that she does. More than anything in the world. But I have to be prepared if she doesn’t. I have to be prepared for the day I might not be able to care for her.

        I need to accept the fact that despite my best efforts, my hair isn’t any better and I need to start looking into alternatives. Whether that means bonding, wigs, I don’t know…it has to be something. Every time I look in the mirror, it damn near destroys me. Did you know there aren’t any pictures of me with my kids? Hardly any at all? That when I’m gone someday, they’ll have nothing to remember me by because of my effin HAIR? Because it’s destroyed my self esteem this much?

        I need to accept the toll this has all taken on my seven year old. I need to BE HIS MOTHER, because for the longest time now, I haven’t been. I need to cherish him, love him, and not put his needs on the back burner because of his sister. I need to not expect him to always behave, and be
        the “good” one, because I have my hands full. I’ve done this his entire life. His childhood is passing by and I’m MISSING OUT because of all this.

        I need to accept the fact that my husband loves me for who I am, is a wonderful man, and I’m amazingly lucky to have him. He has put up with SO MUCH from me throughout the years. If I were him, I’d have left a long time ago.

        I need to accept that maybe I should try working again, or find some identity outside the house. But hell, I can barely LEAVE the house, so where the hell does that leave me?

        So, so just don’t know what to do anymore!

  6. First to Angie T…..I wish I had some magical, poetic, positive words to write to you but I am not that talented with words so I will say to you…..we are with you in spirit and I will pray for your healing and for you to find the peace you are searching for. I WILL!!! I have been in that dark spot and it is hard there! Somedays I still re-visit it. Just know you are not alone!!!!

    Ariane- I would like to be offered one of the first lots of land you sell in your new land!!! 🙂 I would be there in a heart beat. I just told my husband the other day after all the shootings etc…that I never thought I would leave our current home but there are many times lately that I dream of being in some very remote area that hardly anyone knows about where we can exist with one another in peace and harmony. The world we live in now scares me….I fear for my children. I hate to have that in my heart…that fear but I do. Like “Life and Ink” said, sometimes it gets to be so overwhelming it hurts. I hurt thinking of the what ifs….the danger we could face…the violence. It is sad when a person feels that they can’t walk out of their door anymore with 100% confidence that no violence will come to them while they are out. Heck, you can’t even feel that way IN your house. Working in law enforcement, I feel I am always on edge that way. It sucks! Your honestly made me feel secure though….secure knowing that there are others out there in the world that DO feel the same way I do….it gives me hope to not lose my faith as well! Thank you for that! You always amaze me!

  7. Ariane, it is miraculous to me that I open your blog every day and read . . . and find myself therein. I have no child with autism. But you write of humanity and truth and courage, and I feel less alone. These are priceless gifts you give with each keystroke. Thank you.

  8. Dear Ariane and Angie,

    For years I listened to both that voice in my head and even someone I thought was a friend, tell me all the things that I am not. I don’t know why that voice is so easy to listen to. It’s like it lulls you in with its seductive song or something. But when you listen to it there isn’t anything seductive at all. It told me I wasn’t good enough, that I had nothing to offer the world, that I was crazy to think I did. Why would I listen to that? But I did. I too know depression and panic attacks. I know struggling to breath feeling like there is an elephant sitting on my chest. I know the feeling of thinking I am worthless. And every once in a while that voice tries to speak to me again. It wants to now, it is whispering to me saying that I am crazy for writing this, but I am ignoring it because that voice is a liar. Angie, you are NOT worthless. You are beautiful, you are in this world to be you and the world needs you. You are getting help and by doing so you are shining a light on your challenges and by doing so you have taken the first step in overcoming them. Because of YOU and Ariane you have created yet another dialog we need in this world. We need to stop acting like we are all perfect, we need to stop pretending and be honest and open with each other.

    If we could be open about our very real personal challenges I think we could be more supportive of each other rather than spending our energy being protective of ourselves.

    We are gifts to each other. Angie, you are a gitt to me because you have helped me be honest about my depression. YOU are helping me put positive energy into the world. Angie that is AWESOME and it’s because of YOU. I am so glad you have friends like Ariane and a supportive husband and also the gift of honesty. They will serve you well and help you through this. You will find the acceptance you need and with that acceptance you will feel peace. It is in you now and you will get to it.

    Giant ((((( ))))))

    Thank you Ariane for letting me take up so much of your space.

    • Just so you know, Charlotte, you NEVER take up space. Unless it’s in my heart (how corny did that sound?) but so true!! Thank you for writing this comment. I’m so glad you did. There’s too much stigma in this world, period. ((((Charlotte)))))

    • Those words were beyond wonderful to read. They truly lifted my spirits. Who knew words could have ao much power. All the more reason we need to stick around, and be supportive…..even when we dont realize thats what we are doing.

  9. Great post!! And very honest. I really can relate to the first paragraph of this post, and parts of the second paragraph too. I always wonder what my life would have been like if I had grown up in an indigenous tribe. I think about the time in history I was born in and wonder if I would have been happier living in ancient Egypt or some other time period. I wonder if I would have been happier as a hunter and gatherer. I never felt like I fit into American culture. I don’t want to be a member of the master race anymore. This country that arrogantly thinks that the whole world envies our messed up society so much that they fly airplanes into our buildings. I have spent huge amounts of time in my life dreaming about what it would have been like to have been born a different species. A redwood tree growing in the coastal range of northern California would be perfect for me. I’ve also wanted to be a squirrel or an eagle or a hawk or an owl. Cats are cool too. Large cats and small ones. Most other species don’t oppress their own members. It makes me wonder if human beings are the meanest of all species, or just the dumbest. What is worse? Wanting to oppress your own kind, or collectively allowing it to happen? Are we really the smartest species on earth? Or do we just delude ourselves into thinking we are the smartest because we define intelligence based on the way we think? We’re one of the most violent species of primates, and one of the youngest species on the planet, most likely doomed for extinction. Just a bunch of stupid lazy apes beating the crap out of each other over nothing. For what? To see who gets to rule the dust? To kick up a bunch of dirt just to prove we can? To test the bounds of human suffering?

    I’m rambling, “stream of consciousness” style. Your social commentary and admission that you don’t believe in God reminds me of a short poem I wrote in the winter of 2005, one of the few poems I’ve ever written. I will share it with you.

    Money is God.
    Wealth is heaven.
    Poverty is penance.
    Dissent is heresy.
    Matrimony is a merger.
    Corporations are churches.
    A suit and tie is a robe and collar.
    Consumer confidence is a Profession of Faith.
    Securities fraud is the molestation of helpless victims.
    Imperialism is a Crusade.
    War is wrath.

    • I always love your comments. My husband is constantly on the look out for UFO sightings and I often joke with him that I hope we do have an alien invasion as it will be the only thing that saves our planet from us!

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