Mirror, Mirror on the Wall – Who’s the Biggest ‘Neb’ of All?
By Tziri Frank
Once upon a time, in the Land of Utopia, there lived a benevolent queen who only wanted to do good for her subjects.
“How,” she often wondered to herself, “could I improve the lives of my people?”
“You could make dieting a severe offense, punishable with death,” suggested the Royal Chef as he placed a hearty breakfast before her.
“You could make every second Tuesday a National Day of Joy,” recommended the Royal Secretary, who needed the next Tuesday off for his child’s Pre-1-A Siddur Party, “and give everyone a day off so they could do what makes them most happy.”
“You could ban the color black from the kingdom,” said the Royal Dresser as she disdainfully pinched the hem of the Royal Secretary’s usual black skirt, “and make everyone look skinny in bright colors.”
“Those are all good ideas,” said the Queen, nodding her head in judicious agreement, “and ones that I will look into further. But I feel the need to improve the lives of those individuals are the most downtrodden, the folks who have real life-issues that need improvement, the poor people who best fit the description of the word nebach case.”
And with that she took out her pocket mirror to powder her nose.
“Mirror, mirror on the wall, who is the biggest nerd of all?” she sang out.
And the mirror answered her.
“Over in the next town, there lives a man who cannot afford an S.U.V., and must drive a minivan!”
Gasps of horror filled the room at the thought of the pitiful individual who was forced to drive a vehicle that did not guzzle gas like it was rare bon-bons.
“No, no,” said the wonderful queen, “I want to know who truly needs some real help! The kind of help that can make the difference in a life of difficulty,” and she turned to the mirror again, “Mirror, mirror on the wall, who is the biggest neb of all?”
“Why, you are,” said the mirror.
Again gasps of horror filled the chamber, and all eyes swiveled to observe how the monarch would handle this proclamation.
“Oops,” said the mirror, “wrong story. Let me try again.”
And the mirror carefully reported the name of an individual in the realm who suffered with the heartache and grief of tending to a loved one that was ill. Day after day, the queen would ask the mirror the same question, and time and again the mirror would supply the names of those in the vast kingdom who were undergoing real difficulties with health, and sickness, and life situations that truly deserved the label, “oy vay!”
So the queen spent the rest of her days, doing what she could to make the lives of these people a little bit better.
And they all lived happily ever after.
But that was then, and this is now. And the only connection between fairy tale and real life is the never-ending interest people always show in who is the Official Nebach Case (a.k.a. Thank Goodness He/She is Not Me, and I Don’t Have Those Troubles).
And it always makes me smile.
“No way!” is the inevitable response when someone finds out for the first time that I am the mother of a special needs child, “But, you don’t look it!”
The first time I heard this, way back when my severely mentally and physically handicapped son was about a year old, I promptly ran home, slammed the bathroom door, and planted myself in front of the medicine cabinet. For the next hour or so, I twisted and turned, I poked and I pinched, I preened and I postured. But I could not figure out how I, as the mother of a special needs child, was supposed to look.
Since then, I have frequently heard the comment from numerous individuals, and I now realize that it is intended as a positive reinforcement. What the individuals, who are complimenting me are trying to say is that, given the obvious challenges I face in my life, they are truly most impressed that I can manage to get dressed in the morning. The fact that I also try to look somewhat presentable, and slightly fashionable is a pleasant surprise, and one that deserves acknowledgement.
But, people take heart, it was not always so.
A long time ago, my son Yossi spent one entire year in the hospital. After numerous surgeries, rehabilitations, and experimental procedures, it was deemed time, by those who had the power to decide such things, that the time had come for Yossi to be discharged back into the World.
“It’s time to take Yossi home,” proclaimed the Head Nurse one fine day when I showed up to feed Yossi lunch.
“Now?” I asked in confusion, staring at the numerous wires and tubes connecting Yossi to various machines and monitors.
At this the nurse peered over at the child, who was completely bedridden, and then she looked at me. Her gaze encompassed the maternity tent that passed for my attire as I waited for the expected arrival of a second child.
“Perhaps not,” she murmured, “I think we better come up with a plan of action that would be best for you, and Yossi.”
And she disappeared. But within the hour, a social worker, a life coach, and several curious onlookers had crowded into the bedside cubicle I inhabited with Yossi.
“Hmm” said the social worker when I asked her if she knew of any services available to feed my son, for the hour or so it took for each meal to be ingested.
“Oh dear,” said the life coach when I asked her if she had any practical advice for how I could lift my immobile, and yet surprisingly heavy, child into and out of the bathtub for his daily washings.
“Like, are you going to have a baby this minute,” said one curious onlooker gazing in fascination at the wild print of my maternity tent.
“Like, don’t be silly,” said the other onlooker as she bopped the first one over the head with her purse, “like, she has to make arrangements first for her son.”
“Cool!” cooed both onlookers, giggling ingeniously.
“Hmm,” continued the social worker, trying thumbing through volumes of information searching for services that could be available to a mother who was about to have a baby and needed full-time care for a severely mentally and physically handicapped child.
“Oh dear,” panted the life coach as she pantomimed trying to lift a large heavy object from the floor, and succeeding only in hurting her back.
“Like, really cool!” said the onlookers with their high-pitched giggles.
“Out!” I said, “Go! And don’t come back until you have some answers for me!”
Something about the sight of a short, rotund, and very determined woman pointing her finger at the door got through to them and within minutes I was left alone. I turned, to discuss the situation with my favorite advisor, Yossi.
“Yossi,” I said, “what should we do?”
Yossi smiled. And suddenly it was clear to me. The bottom line, and irrefutable fact, was crystal clear. Yossi must be kept happy and comfortable at all costs. And it didn’t look like I was going to be able to manage that, on my own, for the next few months.
“How do I go about getting Yossi into respite care?” I asked the social worker, life coach, and curious onlookers when I found them clustered outside my cubicle, comparing notes on my physical appearance.
“Hmm,” said the social worker, and furiously began searching through her numerous “How To” books.
“Oh dear,” said the life coach, but since she was looking at her watch at the time, I wasn’t sure what she was referring to.
“Like, I heard it takes months, or even years,” said Curious Onlooker #1, who managed to say the whole sentence without a giggle.
“Unless….” Said Curious Onlooker #2 in a surprisingly sober tone, “you can prove how very desperate and needy and incapable you are.”
“You mean,” I said slowly, “act like I am a nebach case.”
“Cool!” said the Curious Onlookers together. They giggled for good measure.
“Hmmmm,” said the social worker, “that just may work.”
“Oh. Dear,” said the life coach as she put her arm around me, “you can do it. You just need to prove to a panel of Important People that you absolutely, positively cannot manage to care for your child at home right now. Then, they will have to place Yossi in an environment where he will get the physical care that he needs.”
“After days, months, and years of learning how to be strong to deal with a special needs child, you now want me to behave as if I am completely incapable and utterly “nebachdik’,” I elucidated slowly.
“Yes!” shouted everyone together, “cool!”
And within a couple of days I found myself preparing for a meeting that consisted of the all the Powers That Be, when you spend your life in a hospital setting. The Head Nurse was invited to this monumental decision making moment, as well as physical, occupational, and musical therapists. The social worker and life coach (but not the giggling onlookers) were included in the guest list, as well as the hospital liaison (what do they do?), the Head of Neurology, Psychology, Physiology, Pharmacology and any other “ology” that wanted to partake of a tasty Breakfast meeting. The Hospital Vice President in Charge of Making Important Decisions, and of course the Insurance Guy Who Needs to Pay the Bills were asked to attend as well. Once everyone had RSVP’s and given his or her coffee preferences to the Hospital Chef, my husband and I were allowed to make our Grand Entrance.
All eyes turned toward us as the door to the boardroom swung open to allow us entrance. I was first to enter. Gasps of surprise greeted the sight that was me, and I knew why.
My preparations for this summit involved soliciting advice from Those That Know (a.k.a. Been There, Done That) who repeatedly told me that I would have to go against my grain and present myself as a person who could not cope at all. Since I would not have much opportunity to speak, I was told to rely heavily on how most people form opinions on others, the way I looked. Therefore, I had spent more time on my appearance that morning than I had ever had in my life, and the results showed a frightening sight. Odd patches of brightly colored makeup complemented my oldest unwashed, unset, and unstyled sheitel, which showed off the largest polka dotted maternity tent I was able to borrow. My feet were encased in mismatched slippers and I was carefully biting all my nails. Slowly I made my way to my seat, but every couple of feet I paused.
“Ahh!” I would say holding my back and groaning in agony.
Next, came my husband pushing Yossi, who was still attached to various tubes, in a wheelchair. The cumbersome chair and IV pole could not maneuver around the table and chairs.
“Excuse us,” said my husband politely again and again, “we need to get through.”
It was only after all members of the meeting stood up and moved their chairs that father and son were able to get to their designated spot. This drama was accomplished in silence, and eventually all were seated. The meeting was ready to begin.
The social worker cleared her throat and looked nervously at the various therapists who were all shaking their heads sadly. The different “ologists” were eyeing each other in horror, and the hospital liaison and life coach were clutching their hearts in anguish. Only the Insurance Guy spoke up.
“I think,” he said, “that we must do whatever we can to help these people. We will pay any price, just please, please, help them!”
“Agreed!” shouted the hospital staff at once. And then, they all fled.
My husband looked at Yossi in wonder. “After all our preparations, they didn’t even ask us any questions,” he said in confusion, “why do you think they made up their minds so quickly?”
I didn’t answer, I was too busy admiring my reflection in my pocket mirror, and smiling. I might not know understand why going through a challenging situation meant that people expected me to look a certain way, but I now understood that sometimes we need to work with peoples expectations to accomplish what was most important for those who we were entrusted to care for.
“Mirror, mirror on the wall, who’s the biggest ‘neb” of all,” I whispered confidently to my exaggerated likeness, “not me!”