Be Honest And Why That Often Hurts

Every morning I sit down to write a post for Emma’s Hope Book on this computer in my studio and look at the traffic speeding to and from Manhattan on the 59th Street bridge.  Sometimes I already know what I want to write about.  Often  I thought of something the night before, or if Emma did something I feel compelled to write about, I do.  But there are other mornings when I have a number of things I want to write about, but none seem ready to be put on the page.

Be honest.  I repeat to myself each morning before I begin.  But there are some mornings I don’t want to be honest, because honesty can be painful.  Some mornings I just want to write some other version of my life, a fantasy that doesn’t require me to dig down into the darkness.

Cover of "Boy Alone: A Brother's Memoir"

Cover of Boy Alone: A Brother’s Memoir

I read a memoir a few years ago, by Karl Greenfeld called A Boy Alone.  Karl’s father, Josh Greenfeld wrote a memoir about his son, Karl’s brother, A Child Called Noah  several decades earlier.  I didn’t love Josh’s memoir, but I was enthralled with Karl’s as he writes beautifully.

(Spoiler alert – do not read the next 2 paragraphs if you have any intention of reading A Boy Alone as I am going to give away the entire ending.)

Toward the end of the book, Karl writes about moving away from home and how over time, as he struggled with addiction and other challenges, his autistic brother seemed to find himself and eventually could not only live independently, but seemed to have a maturity and wisdom Karl was still struggling to obtain.  As I read these pages I began to read more quickly, trying to figure out how this could have happened, what therapy helped Noah, what exactly was it that propelled him forward, allowing him to become verbal and freeing him from a  life of institutionalization?  But Karl was not forthcoming with this information.

Karl ends the book with doctor’s reports from the various institutions Noah was placed in. The reports are horrifying, the drugs, the restraints, the “therapies,” sadly commonplace in such places are all documented in the dry, hollow tone of doctors and caregivers who have completely separated themselves from the human beings they are administering to.  As I read, I began to reluctantly realize that these reports were the truth, not the previous pages of Noah’s miraculous progress from institution to independence and I wept.  I hated the book.  I felt betrayed.  I felt manipulated.  That book, A Boy Alone has haunted me ever since.  Even now years later I cry when I think of it.

I’m nine-years old home sick with the flu.  My father comes in to read me a story before he goes out horseback riding.  He says to me before he leaves, “I’ll finish the story when I come home.”

“When will that be?” I ask him, turning away from the bright sunlight pouring in through my bedroom window.  

“Soon,” he promises.

Only he never came back to finish that story.  That afternoon he went over a jump with his horse where there was a low hanging tree branch from a massive oak.  His horse cleared the jump, but in doing so my father was crushed by that branch.  He fell to the ground, his back broken.  Paramedics were called and sped him off to the hospital where it was determined he might not live.  Later we were informed he would likely be paralyzed for the rest of his life.  He spent many months in the hospital.  Every few weeks the doctors would gravely give us their opinions.  They were almost always wrong.  Eventually he came home, over the years of physical therapy, exercises, sheer force of will and determination, my father was able to walk and even got back on a horse.   But the nerve damage to his legs was extensive and as he aged he lost more and more of his strength.  The last decade of his life was spent in a wheelchair. 

I write this because, though I didn’t know it at the time, his accident changed everything and has informed my life today in ways I could not have imagined.  I saw how people treated him.  I saw how a wheelchair had the power to change the conversation.  Often it was a subtle change, but there was no mistaking the looks of pity, the attempts to disguise their discomfort, the undisguised irritation strangers would display if his wheelchair caused them to slow down, move out of the way or forced them to accommodate him.  My father was a proud man, athletic, capable and prided himself in never depending on anyone for anything.  And yet, in the end he had to and he hated it.

Be honest.

I am.

16 responses to “Be Honest And Why That Often Hurts

  1. Yes, it hurts to be honest sometimes. In the long run, dishonesty hurts a lot more. We live in a world filled with so much deceit. Practically anyone in any significant position of authority lies constantly. These days they even have a dishonest word for lying — spin. It’s no mystery why. People want to be respected, admired, loved — and the truth can get in the way of that. Personally, I’ll take honesty every time. Someone asks you a question and you don’t know the answer — say, “I don’t know.” Simple, but difficult, especially when you want to be seen as an “expert”.

    Ariane, your honesty — and your relentless drive to become more and more honest, more and more vulnerable — it’s such an inspiration to me. You’ve always been my hero that way. Your courage and compassion are a shining light. Thanks you.

    • It was you who first suggested to me one day when I wasn’t sure what to write about, or more accurately which of the dozens of things I was thinking about writing. “Be honest,” you said. So that’s how I start the day now, thanks to you.
      And yes, I love your point about honesty in a world that’s not very interested in that idea. “Spin” never thought about it that way, but so true. There’s a little love button Ibby told me how to do on Facebook, but it doesn’t seem to work on blog comments. But if it did, that’s what I’d put – right here.

  2. And your father would have been proud of you too. He often couldn’t or wouldn’t express himself, but he actually survived those thirty years after his fall living his life with a sense of humor, of purpose and dignity. Yes, he was a difficult father/husband/man to get along with, probably mostly because of the accident, but sheer will power to keep on going and never give up, characteristics which you share with him, made our lives together more than good, more than memorable. When he was still in the hospital there was another spinal cord accident patient there who was the exact opposite. She was a real downer, and after six weeks, she didn’t show any improvement, whereas Pop was able to walk on his own. In fact both his doctors termed it a “miracle”. But to me it was who he was. And that’s what got him through all those years. He believed in himself, that he could do it, and so he did.

    So go on being honest and believe in yourself and in Emma, and in Richard and in Nic. The four of you work together as a family that I not only love, but admire. You four are my miracle!

    • I like to think that tenacious streak is one she’s inherited. After all she inherited the compulsive and obsessiveness from me, why not tenacity too? It will serve her well.
      Thanks for writing this Mom. It means so much to me. (Love button.)

  3. I have chosen to believe that what we put out to the world is what we receive back from the world and you my dear, give your honesty and so I believe that is what comes to you.

    Our stories parallel in a striking fashion, for my father was diagnosed with the disease that eventually killed him when I was 10 and a dozen years later he too lost his legs, only by amputation. This happened after he also lost both hands. I understand what it is like to watch my father deal with his own frailty.

    One of the most significant moments of my life was a fall day, thousands of miles from my childhood home in Ft. Lauderdale. I was in Minneapolis, with my family, my father had come to U. of Minnesota hospital for a treatment he never received because his health failed upon arrival. The particular moment I referred happened while I was standing outside his hospital room waiting for him to return from the double leg amputation surgery and my thoughts were about not knowing how my legs would hold me and how I could smile for him. I wanted nothing more than a smile. A smile. A simple smile seemed like the most impossible, unimaginable thing to be able to do. I stood there in that hallway and asked the universe to give my legs the strength to carry me and a smile. Then, after he returned to his room and it was time to visit him, my legs, without wavering, carried me to his side and that smile I wanted so badly came, along with the words, “Hi Daddy, I love you.”

    I share this because, like you, it shaped me and is part of who I am today. Even my 22 year old self, as this was happening, could grasp that. I saw frailty and complete submission in a man who was used to being in charge, being the boss. I saw how life doesn’t always go as we think it should. And when we are honest, we get what we need, so since then I have seen no reason to be any other way.

    Thank you for being an honest person.

    • Another little weird twist of synchronicity – as you were writing this comment, I was writing a comment on your blog. Thanks for sharing about your dad. I am sorry. These single events, each so profound, create such cataclysmic shifts in our lives, pushing us in ways we can’t anticipate.

  4. I hated that book for the same reason…and I remember thinking those exact words.

  5. It’s only when we’re really honest with our feelings, our reality, that we can move past and let go of the baggage, or at least share the carrying of that baggage. It takes courage to be honest, especially out here on the internet where people roam just looking for a reason to tear others apart. Kudos to you for having that courage.

    • And I know you are saying this with some experience on the subject!
      For those of you who haven’t spent time on Kim’s blog – here’s the link –
      She’s also one of the masterminds behind the Autism Directory, the little yellow flower badge I have featured to the right of these words on this blog. It has a wealth of information, blogs, books, posts etc. in other words a community. Thanks for all you do, Kim.

      • Thank you, Ariane. I appreciate it. 🙂

        • So weird to see the strange man’s face–don’t know what’s going on with that!

        • Who is that man?! You mean you really don’t know him? I’m sorry to laugh, has this ever happened before?
          And here’s another strange thing, on my iPhone, I couldn’t see this photo at all, but saw one of the monster avatars next to your comment. Which is why I replied below the way I did. You must have thought I was hallucinating. Now I’ll have to look on my iPad and see what that’s showing!

  6. You mean the monster avatar next to your name? I think WordPress and blogspot have comment issues. I can never comment on a blog using blogspot with my WordPress photo but have to sign on with this blog’s URL and then am given some arbitrary avatar. These avatars are random monsters assigned to anyone who doesn’t use their own, or bloggers on blogspot. It’s like we’re being penalized for using a different platform. Lydia Brown over at Autistic Hoya even set up a separate site for commenters using WordPress!

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