the search for a new language

***

In short, we can live inside our fear for the future or we can say to hell with it and run alongside her as she blazes a path that leads us unwittingly to our own self-acceptance as we guide her to hers.

And we can invite everyone with whom we come into contact to join us on that journey. An appealing invitation, I dare say, for it leads to a place that is bathed in hope and love and a true sense of connection with one another and ourselves.

A place so damned happy you can’t help but squeal.

– This Place, Diary, last week

**

We are in the locker room at the pool.

Brooke is naked.

I can’t breathe.

The fluorescent bulbs cast an accusatory light on the cuts and scabs and scars that riddle her body. Inch by inch they bear witness to the darkest side of her daily struggle for comfort in her own skin.

One at a time they are bearable – in isolation each one no more than the typical cost of childhood carelessness. In aggregate, they are overwhelming. Together, they create a cruel dot-to-dot portrait of her most insidious demons.

In this light I cannot help but to see them in concert. And I feel them as if on my own skin. I feel my daughter’s pain and angst and confusion, her frustration and helplessness and lack of control, all treacherously combining with the constant and insatiable yearning for sensory fulfillment and together, their relentless pull on her fingers toward her skin. The dangerous cocktail of fear and need that digs into her flesh, tears at her skin, leaves livid lacerations and, ultimately, the scars of their surrender — and hers — behind.

In the moment, it is almost more than I can bear.

I pull her into a hug.

It’s not enough.

*

This is my journey as a mother.

This is why I wrote this to Andrew Solomon yesterday …

A –

This. A thousand times, this —

“The Nobel Prize- winning physicist Paul Dirac identified how light appears to be a particle if we ask a particle like question, and a wave if we ask a wave like question. A similar duality obtains in this matter of self. Many conditions are both illness and identity, but we can see only one when we obscure the other. Identity politics refutes the idea of illness, while medicine shortchanges identity. Both are diminished by this narrowness. 

Physicists gain certain insights from understanding energy as a wave, and other insights from understanding it as a particle, and use quantum mechanics to reconcile the information they have gleaned. Similarly, we have to examine *illness* and *identity*, understand that observation will usually happen in one domain or the other, and come up with a syncretic mechanics. We need a vocabulary in which the two concepts are not opposites, but compatible aspects of a condition.”

– Andrew Solomon, Far From The Tree

This – the creation of this language, the forging of this middle ground between schools of thought that drive advocacy efforts that appear to be diametrically opposed to one another, at least at their extremes — this. This is what I try so desperately to do.

Yes.

Thank you.

J

This is why.

Because I honor my girl’s differences.

Because I celebrate her joy.

Because I ache for her pain.

All. At. The. Same. Time.

11 thoughts on “the search for a new language

    • So well written, Jess. So well written. This precise contraction held me hostage last week. My son was hurting and had absolutely no way of expressing to me where. I was helpless. I was scared. I was sad. Really, really sad. In my best estimation, my son had three different types of pain upsetting him (including an allergic reaction to a bee sting). But I was guessing at everything, except the physical evidence of the tremendously swollen bug bite. How could I help him if I couldn’t even identify the problem? And what if every single instinct I possessed told me that his pain was serious, but I (the one with expressive language) could not express how I knew this to his doctors? And because he never cried when he was stung or had ANY kind of emotional reaction, how will I know the next time he is stung and what of his reaction is worse? I have never demonized autism. Never. It is a congruent part of my children, not something to be separated out or isolated from what makes them who they are. But there are times like this that is scares me, frustrates me, and makes me feel deeply saddened by its hold on their NEED to reach out to me. And this is where I get stuck.

    • No, ma’am. If a day comes when she wants to, I’ll gleefully hand her the reins.

  1. Beautiful. What a perfect analogy Mr. Solomon uses, and how well you have captured the celebration and the sorrow.

  2. So well written, Jess. So well written. This precise contraction held me hostage last week. My son was hurting and had absolutely no way of expressing to me where. I was helpless. I was scared. I was sad. Really, really sad. In my best estimation, my son had three different types of pain upsetting him (including an allergic reaction to a bee sting). But I was guessing at everything, except the physical evidence of the tremendously swollen bug bite. How could I help him if I couldn’t even identify the problem? And what if every single instinct I possessed told me that his pain was serious, but I (the one with expressive language) could not express how I knew this to his doctors? And because he never cried when he was stung or had ANY kind of emotional reaction, how will I know the next time he is stung and what of his reaction is worse? I have never demonized autism. Never. It is a congruent part of my children, not something to be separated out or isolated from what makes them who they are. But there are times like this that is scares me, frustrates me, and makes me feel deeply saddened by its hold on their NEED to reach out to me. And this is where I get stuck.

  3. Sometimes the “all of it” we need to take in with our hearts and eyes can feel like too much to bear, just plain too much….and then thankfully we refocus on the smile, the gain, the light in the eyes and our hearts light up. I think these dark moments probably have great value too but that doesn’t make it easier to be there. Heartfelt understanding to you ~

  4. Great posting. Iam reading far from the tree right now. Besides the identity issue I think he illustrates in a great way that all adversity faced has them stronger therefore coming to acceptance through compassion and understanding. I think we all can admit that we do get frustrated at times due to communication problems or just plain worn out. In the end we do swallow that frustration and do the best for our kids.

  5. Do you remember when you were a kid, and something happened…maybe you fell off your bike or maybe you lost your very favorite toy or maybe your goldfish died….and you knew that somehow, someway, someone bigger than you could make it better? I actually believed that the grown ups knew exactly what to do. I remember believing, heart and soul, that my parents were god-like in their abilities to control the universe and correct any wrong. I remember the longing to crawl up into someone’s lap, to feel the strength in loving arms wrapped around me…KNOWING that he/she could and would protect me. At all costs. And then I grew up and became the grown up. And I felt woefully inadequate. For the longest time, I thought that I had missed an important step somewhere in the becoming-an-adult process…that somehow the “grown up” magic dust had never been sprinkled on me. It never felt natural or easy. I felt just as afraid, unsure, and scared….but grown ups are not supposed to show weakness or fear. Now, these little bitty humans were dependent on ME. They looked to ME to have all the answers…to scare away the big bad wolf, to make tummy aches better, to explain the mysteries of the universe. Oh, LORD, I felt like the ultimate imposter. Whose idea was it to let me be responsible for these precious little lives? I felt so inadequate to face enormity of my responsibility. So I did the only thing I knew to do. I just gave it my all. All my love, all my energy, all my passion. Despite my efforts, sometimes I fell short of perfection. It took me awhile to I realize that NO parent is God. No one comes to the job knowing exactly what to do. Parenting is a trial and error process. And it is NOT for the faint of heart. And, thank goodness, I realized all of this BEFORE I knew of autism. Before I witnessed the cruel scars on my daughters’ bodies and souls. I never knew, never even comprehended true horror, until I watched my oldest slip into an abyss I could not enter. I am the GROWN UP. I am supposed to KNOW what to do. I am the parent, the first advocate, the fierce protector, and the defeater of monsters seen and unseen. But not this time. This invisible monster called ANXIETY makes Godzilla look like a cute little lizard. This beast attacks my daughter from the inside out and ravages unseen places long before I can see the external damage. The impotence I feel is…well there just aren’t words. What you described in the pool house, that comes close. Simply put: It HURTS. Even as I accept my girls and treasure them and enjoy their gifts and quirks…while I want them to be exactly who they are…I want the power to erase the pain. Childhood isn’t supposed to be hard or painful. It is supposed to be a time of freedom and innocence. I want the God-like ability to fix it for them. I don’t want to take away WHO they are. I just want to take away what torments them. Because, I, too, feel every one of their wounds. It flies in the face of everything I believe about effective parenting. I see those scars as my failure. I have failed to do my job. I have failed to protect her. And, right now, that is where I am. I am struggling to accept that I am doing all I humanly can. I am trying to reframe what feels like a colossal parenting failure. And as selfish or childish as it may sound, I long for a great big lap to crawl into for comfort and for someone else to have all the answers and to make it all better. Some days there is no more fight left in me. Today is one of those days.

    • This is one of the most heart-wrenchingly beautiful things I’ve ever read. And though not as artfully, I could have written every single word.

      I get it. Down to my soul, I get it.

  6. Unfortunately, there is no way to avoid the pain you feel as you experience her struggle. Take heart, however, in knowing that your understanding and unlimited love for her is what is going to get her, and you, through this horror and fear to a better place when she is able to beat back the demons and make her way to her life. It is your energy and your skills that will help her to realize her place in the sun.
    I’m sorry for your pain, and her trials, but that is all part of this difficult road that you must travel to get to the good places she deserves in life.
    Love you,
    Dad

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