Tag Archives: Compare and Despair

Finding That Sticky, Messy Area Between Perfection and Despair

“Compare Emma to Emma.  Don’t ever compare her to another child.”  This was said to me years ago by someone whose name and face elude me.  I was reminded of their suggestion this morning as I rode the subway to my studio and read the chapter by Lucy Blackman from Douglas Biklen’s terrific, must-read book, Autism and the Myth of the Person Alone  - “That is  best illustrated by asking each reader to describe the cultural or emotional characteristics of their own sex, whether man or woman, without any reference to the opposite, not even by implication, as if you were completely unaware that there is another set of options available.”

As the subway careened along beneath the streets of Manhattan, I reflected on this idea of not comparing Emma to anyone else or even to an abstract idea of anyone else.  What if I didn’t compare her at all?   “…without any reference to the opposite, not even by implication…”  What if I saw Emma purely as Emma?  ”..as if you were completely unaware that there is another set of options available.”  What if I pushed out of my mind all those evaluations, the reams of “reports” the specialist’s conclusions, the pages and pages of “information” gathered over the last eight years?  What if all of it, every last word was meaningless?  What if I emptied our file cabinet of all that and started anew?

We live in a culture of comparing.  We look to our neighbor and envy their garden or, as happens in Manhattan, how many square feet their apartment is. We salivate over other’s imagined life, we covet that which we do not have and may never have, we pore over the lugubrious details of fallen celebrities and the train wreck of their lives, we gawk at the photos of dimpled hips, bellies, thighs occupying pages upon pages in magazines we may never purchase while in line at the supermarket, relieved that we are not the only ones whose bodies are not the chiseled, polished, perfection obtained through that impossible combination of genetics and a willingness to give over hours of our lives to a gym.  Yet we still feel embarrassment and shame when we go to the beach and uncover ourselves.

I spent a great many years perfecting just this sort of thinking.  I spent far too many years feeling alternately “less than” and “better than”.  Oddly there was equal measure of shame in both and yet I couldn’t figure out how to extricate myself.  It was one or the other, that sticky, messy area between those two points was much harder to occupy.  But it is that area I long to find my place in.  It is exactly that middle ground I now find myself reaching for.  ”…as if you were completely unaware that there is another set of options available.”  That is what I strive for, when I think about and interact with Emma, but also in every area of my life.

“Compare and despair” is something I have heard people say.  I can illustrate this saying with countless examples from my life and yet, even now, knowing what I know, the temptation to compare is seductive.  How does it serve me?  This is the question I know to ask.  And I have the answer to this.  It doesn’t, but it is a habit.  Thankfully I am learning to stop myself when I catch myself comparing.  What I am coming to realize is, comparing is my knee jerk response to stress.  It is where I go when I’m tired.  It’s my default setting for when I’m overwhelmed, hungry, sad or just confused.  Repetition is how we acquire skill.  Repetition is how we undo learned behavior.  When I compare Emma to Emma I see tremendous progress, I see possibilities, I see limitlessness, I see the beauty in the small steps taken, I see a kind of poetry in her growth.  Challenge becomes subjective, goals are no longer solid lines but instead shimmery bands of light, something one moves in and out of, no longer a mountain to climb, but rather a place to visit and then move on.

How do I stop comparing my child?  By seeing her through a lens of wonder and curiosity.  When I am able to accomplish this, I have found true bliss.  A blissfulness Emma innately occupies and patiently awaits me.

Emma running through sprinklers outside the Museum of Natural History

Fear = Feel Everything And Remain

Fear.  It creeps up on me, seemingly without warning.  Sometimes I get hit with it while brushing my teeth or waiting with my son, Nic, for his school bus or when I am walking to my studio.  Like a person suddenly appearing in front of me, it startles me every time.

There are phrases using fear as an acronym, such as:  F*ck Everything And Run, or False Evidence Appearing Real, or Failure Expected And Received, or Frantic Effort to Appear Real.  I like some of those, but the thing that I’ve found helps the most is to admit I’m feeling fearful out loud.  To “out” it.  To not allow it to sit, twisting and turning in my gut, while pretending it isn’t there.  Pretending it isn’t there rarely helps.  On the other hand, allowing myself to go into intricate detail about it often makes it worse, like feeding a dragon, or adding fuel to a fire, (pick a cliche) so it seems there’s a balance needed.  Feeling the fear, acknowledging it, and then trying to trudge along anyway, or do as my favorite saying regarding fear – feel the fear and do it anyway.  The “it” is often a moving target, particularly as this morning’s fear is all around future thinking involving Emma.

Which leads me to the two most detrimental things that lead me to despair faster than anything else when it comes to my daughter – future thinking and comparing her to others.  Compare and despair, they say.  Deadly.  It is deadly and it doesn’t matter whether I am comparing her to another autistic child or a neuro-typical, it is deadly.  I try to cut that one off at the pass.  If I see it coming I try to turn my back.  ”Don’t go there,” I tell myself.  Sometimes it’s impossible, large gatherings with other children are the worst and sometimes it’s impossible  to avoid.  Sometimes I have to sit and hope it just washes over me and leaves.  I hope there will only be a few waves of it.  I hope I’ll be able to stay upright.  I hope that I’ll be strong enough not to cave under the weight.

That’s the thing about fear, it can be so all encompassing, so random, so…  sprawling.

Make a list.  This is an action step I take when I feel as though I can’t breathe.  Make a list.  Prioritize.  What needs to be done?  This past month I have not been as diligent with Emma’s “study room” and she has not been progressing as rapidly as she had been, so I’ll need to figure out how to manage my time better to get back to that.  Emma’s literacy program is one that continues to fill me with hope and gives me energy.  Seeing her progress with her reading and writing has been the single most helpful thing in keeping the fear at bay.  When Emma was stalled out, not moving forward, those were the darkest times.  As long as she continues to progress, her self-portrait, her letter, her writing about going to the zoo, are examples and the things I cling to like so many scraps of wood in the middle of an ocean of fear.  Just keep my head above the water, just hold on, keep treading, keep breathing, it will be okay.  It will be okay.

Make a list.  Check.

Don’t pretend I’m not feeling the fear.  Out it.  Check.

Feel it.  Check.

Keep moving forward.  Check.

I know these things won’t remove the fear, I know they won’t completely eradicate it, but they are the things I know to do that will help, even if not in this next moment, but in the next few hours, the next few days, the fear will dissipate.  It always does.  Take a deep breath.

FEAR = Feel Everything And Remain

To read my most recent Huffington Post, click ‘here.’

To read my guest post on Special Needs.com, click ‘here