T H E F E L D E N K R A I S J O U R N A L N O . 21

A Case Study from Three Perspectives: A life story Eva Scher

Once u p o n a t im e, i n Decem ber 1957, a baby g ir l w as b o r n i n Paris, France. N ot qu ite a beau t ifu l p rincess, bu t I was b o r n w i t h a h ear t an d sou l, a w ish to live an d grow , a th ir s t for n ou r ish m en t an d for ligh t an d love. Those w h o looked at m e cou ld n o t id en t ify w h a t w as w r on g . M y eyes w ere slan ted , m y ears t in y . M y face seem ed u n fin ish ed w i t h n o ch in or bon e stru ctu re. I w as a very strange baby in d eed , b r in g in g tears of d istress to m y bew ild ered m oth er , a d eep d isap p oin tm en t to m y con fu sed father, an d shame an d anger to fam ily an d fr ien d s. O n th e oth er h a n d , I b rou gh t excitem en t to th e h osp ita l m ed ica l staff as th ey searched for a n am e for th is rare d isfigu rem en t . It w as d escr ibed as Franceschetti or Treacher Collin s Synd rom e.

In the m id st of the con fu sion , a k in d ly fa iry ben t over m y cr ib an d w h isp ered i n a silen t langu age that on ly babies can u n d erstan d , "You are a very sp ecial baby, a fou r -leaf clover, a r a r ity . You r p a th w on ' t be easy. Like a ll l iv in g creatu res on th is ear th , y o u v r il l stru ggle, su ffer an d at t im es w ish to give u p . To face th is ch allen gin g jou r n ey th a t w i l l be you r life, I chose for y ou th e m ost d eserving p aren ts in a ll the w o r ld . They w i l l be you r allies an d you r stren gth . They w i l l sh ow y o u a p ath w ay th a t shall becom e you r very ow n . You w i l l be gifted w i t h a hear t th a t cap tu res su btleties of h u m a n em ot ion . You w i l l see th r ou gh you r sou l. Man y w h o cross you r p a th w i l l love y o u an d w a n t to be w i t h y o u . You w i l l learn fa ith an d the ab ility to t ru st life, even i n th e hard est of t im es. You w i l l d esire to learn , grow and m ake the m ost ou t of you r stay o n Ear th an d beyon d ."

So life began . In sp ite of great d ifficu lty eating an d sw allow in g food , an aspect of the syn d rom e, I grew . I loved m u sic an d the lu llabies m y father sang to m e i n Yid d ish . I d id n ' t w a n t h i m to stop singing to m e an d cr ied if he stop p ed . I learn ed to t ru st an d love an im als. I h a d n o fear of dogs tw ice m y size.

For the fir st fou r years of m y life I w as raised by a n an n y an d sp ent a lo t of t im e alone. I becam e aware of m y d ifference at a very early age. I r em em ber vagu ely th e u n kin d n ess of oth er ch ild r en an d m ean com m en ts th at I d id n ' t u n d er stan d . Slow ly, d ay after d ay, I created a sh ell, a p r o tect ion against an aggressive w o r ld . In silen t d ream s, I im ag in ed a kin d er , gend er w o r ld i n w h ich I w as a ju st , r u l in g p rincess. Silence becam e a refu ge. Tau n tin g, teasing boys w ere w a it in g for m e w h e n I star ted goin g to elem en tary school. Before en ter in g th e gate an d facin g m y torm en tor s, I looked at th e statu e of an angel w i t h on ly one a r m , w h o p u t a fin ger to its m o u t h in v it in g m e to be silen t, to en d u re w i t h a sm ile. This k in d angel r em in d ed m e of m y good fa iry an d th e w h isp ered w ord s, "En d u re, sm ile an d keep you r head h igh ." So l d id . N eith er m y p aren ts n or m y fr ien d s saw w h a t I w as goin g th r ou g h . Like a beau t ifu l p rincess, I passed by m y torm en tor s p u t t in g a ll m y energy to p r eten d in g n o t to see or hear th em . I d iscovered an in n er p ow er to en d u re th e w o r ld , a lth ou gh I h a d n o w ord s to express m y feel-ings, m y fears, or m y hop es. N on e of th e books, stories, an d fa iry tales m a tch ed m y exp erience. Yet I w an ted to d iscover the ou tcom e an d the m ean in g of th is very sp ecial jou r n ey of life.

A n d life w en t on : a strange face; a g row in g ch ild ; th e ou tsid e w o r ld , d em and s, exp ectations an d silence. Sound s seem ed to com e fr o m far away because m y h ear in g w as im p a ir ed . I ju ggled w i t h rea l-ity , feeling like a fu n am bu list w a lk in g on a t igh t rop e, t ak in g one step at a t im e an d n o t look in g d o w n . M y face was strange even to m yself. I cou ld u n d er stan d w h y a lit t le boy h i d b eh in d h is m oth er w h en he saw m e. I fr igh ten ed h im . We w ere b o t h scared .

Wh at w as the m ean in g of th is strange w ay of goin g t h r ou g h life? For tu n ately , I w as cu r iou s an d h ad fa ith i n d ream s. I v isu alized a better w o r ld . Som ew here there w as m y t w i n sou l, an old er boy w h o looked ju st like m e an d liv ed far aw ay—a fearless boy w h o w o u ld p rotect an d console m e.

School was d ifficu lt . N ot h ear in g w ell , i t w as a hu ge effor t to be an average stu d en t. I feared m ak-in g m istakes, saying or w r i t in g som eth in g r id icu lou s because I d id n ' t hear correctly. I w as con stan tly on gu ard for some in com in g d anger an d never d ared to take risks th a t m ig h t p u t m e i n t rou ble. I rem em ber th e d ay w e read a story of a lit t le g ir l w h ose m oth er an d father becam e sick an d d ied .

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I cou ld n 't im agin e h ow a lit t le g ir l cou ld su ffer so m u ch an d have so m u ch m isfor tu n e. I w as i n tears and w h en it came m y t u r n to read a lou d I w as u n able to u t ter a w o r d . The class lau gh ed . Maliciou s classmates said th a t I u sed th is strategy to avoid read in g a lou d . Everyone w a ited for m e to begin to cry bu t I cou ld n ot stop th e tears. There w as also d ifficu lty w i t h abstract lea rn in g like m a th . N one of the facts w e m em or ized seem ed to h elp m e u n d er stan d m y w o r ld . It a ll ap p eared a b it useless th ou gh I t r ied very h a r d i n ord er to p lease m y m oth er an d m y teachers. An xiety occu p ied m u ch of m y a t ten t ion an d m ad e i t even m ore d ifficu lt to u n d er stan d abstract calcu lation s. I w as fu n ct ion in g to su rvive. H ow ever, I w as a sensitive ch ild an d I w as lea rn in g .

W h en I was 16 years o ld m y m oth er d iscovered Dr. Tessuier, th e forefather of reconstru ctive sur-gery. I began the fir st o f t e n op erations. It w as scary to en tru st m y face to som eone; i t w as a d ifficu lt m om en t th is le t t in g go. For m y p aren ts i t w as a d ream com e t ru e.

Changing a face every six m on th s is n o p icn ic: There w as th e u n k n o w n of h o w I w o u ld look, the sw ellin g of the fir st w eeks an d , of cou rse, the p a in . Bone grafts w ere taken fr o m m y r ibs an d fr o m m y h ip to m ake m y nose, m y ch in , an d m y cheek bones. I cou ld n ' t w a lk for w eeks. Breath in g w as also very p a in fu l. Resu lts d id n o t ap p ear r igh t away. For m on th s after su rgery, I h ad a ll the m ir r or s h id d en or covered . I d id n ' t d are to look at m y face. Dream s of in v en t in g the life I w o u ld live car r ied m e th rou gh —th e love, th e t ravelin g, th e stu d yin g, an d m ak in g fr ien d s w i t h p eop le fr o m all over the w o r ld . M y objective w as to live an in terest in g life an d to lea rn . The su rgeries th r ou gh ou t th e h ig h school years w ere a p aren thesis i n m y life. They w ere like sw allow in g a b ig b o w l of sou r m ed icin e: You take the b ow l an d close you r eyes, stop brea th in g an d h op e i t is over qu ick ly u n t i l th e exp erience becomes a vague rem em bran ce. I never cr ied before su rgery. I h ad an id ea of h eroism , of bein g cou -rageous. I w o u ld clen ch m y teeth an d have fa ith th a t i t w as a ll for th e best; I believed th a t m y angels w ere a p rotect ion for m e an d th a t every th in g w o u ld be a ll r igh t . Th rou gh ou t those years of m etam or-phosis, I kep t d ream in g an d I d rew m y face. I d rew the im age again an d again o n every p ap er an d i n a ll m y notebooks. W i t h each d raw in g I in v en ted a life, a d estiny, ad ven tu res an d rom an ces—id eal lives. Dream s an d im ag in in g better t im es kep t m e goin g. A sm ile from m y good fa iry assu red m e th a t I was d oin g OK, th at i n sp ite of h ard sh ip an d a feelin g of fa ilu re, I w as creating m y life w i t h every passing year, overcom in g a lot , d o in g great, an d w a lk in g tow ar d a fine p a th .

Changing m y n am ed from Evelyne to Eva m arked th e beg in n in g of an oth er r econ stru ct ion , of tak in g m y d estiny in to m y hand s. I w en t to Israel an d m et an A m er ica n m a n w h o asked m e to m a r r y h im . This too w as the beg in n in g of a n ew life: ch an gin g cou n tr ies, sp eaking a foreign langu age, ad ju stin g to a d ifferen t cu ltu re w ere a ll w ays of sooth in g w ou n d s an d becom in g a n ew p erson , liv in g beyon d bad m em or ies an d the feelings of fa ilu re. A n d ju st as m y face seem ed a separate p a r t of m yself I rejected the rea lity of l iv in g w i t h T C S . It w as taboo, ign ored ; I w o u ld n o t a llow anyone to b r in g u p the su bject. I h id a ll th e p ictu res of m yself as a ch ild an d teenager. I w en t so far as n ot t e llin g m y h u sban d abou t m y past. H e accep ted th e story of a car accid en t. Im m er sed i n a n ew langu age an d cu lm re I liv ed m y you n g ad u lt life refu sin g to add ress m y past, forget t in g a ll th e su rgeries an d the past p a in .

In the U S A I w an ted to m ake u p for m y d ifficu lt sch ool years an d take revenge. I en joyed th e Am er ican u n iversity system an d earned a BA i n La t in Am er ican stu d ies at U C L A , an d th en con t in u ed on for a master's degree i n Special Ed u cat ion . I becam e a teacher an d tau gh t elem en tary school in English an d i n Sp anish w h ile I p u r su ed m y Science of Ed u ca t ion courses. Then , a lth ou gh I d en ied m y past an d never accep ted seeing m yself as a sp ecial p erson , I becam e a Special Ed u ca t ion teacher w or k in g w i t h ch ild r en w i t h lea rn in g d isabilit ies. I never ad d ressed m y h ear in g d isab ility an d always u sed ad ap ta t ion as cam ou flage.

Wh en I w as liv in g i n Los Angeles a d ance friend an d room m ate w en t to Israel for a few m on th s. She en rolled i n an Alexand er Techn iqu e cou rse there. W h en she cam e back I w as star t led to see h o w m u ch she h ad changed . H er p ostu re, her w ay of t a lk in g an d ad d ressing p eop le w ere d ifferen t , m u ch m ore engaging an d easy goin g. I never im ag in ed th at one h ad the ab ility to change so m u ch i n so litd e time. I was in t r ig u ed by her carriage, her bear in g, b u t never in q u ir ed m ore.

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Back to France at age 33, d ivorced , w i t h a m aster 's degree an d an Am er ican p assp ort an d w ay of life. I w an ted to live closer to m y aging p aren ts. I con t in u ed teach in g ch ild r en an d ad u lts, bu t th e retu rn to France w as d ifficu lt . The past w as ju m p in g back at m e an d st ickin g at m e. As p a r t of m y quest for u n d erstan d in g I w as im m ersed i n the search for m y clow n . As a theater clow n , I su blim ated m y past. I was the in it ia tor of lau gh ter an d n o longer its v ict im . It w as i n m y beg in n in g clow n w ork-shop that I d iscovered the Feld enkrais M et h o d [of som atic ed u ca t ion ]. H ein ke Asch em an n , m y clow n professor, was i n th e second year of her Feld enkrais t r a in in g p r ogr am an d w as eager to share all she was learn in g with u s. I w i l l never forget th e fir st Aw areness Th rou gh Movem en t ( A T M ) lesson she tau gh t. I was u n able to raise m y r igh t a r m an d m y left foot or som eth in g like th a t . The m ost s im -p le m ovem ents w ere in cred ib ly com p lica ted . I w as clear ly facin g a lack of coor d in a t ion w h ich h ad always m ad e m e clu m sy—breakin g d ishes an d w hatever w as i n m y w ay.

The d ifficu lty of d oin g th e sim p lest m ovem en ts d id n ' t d iscou rage m e. O n th e con trary , I im m e-d iately kn ew that I h ad som eth in g p reciou s to d iscover w i t h th e M et h o d an d I volu n teered to be Heinke's first p u p i l . The fir st Fu n ct ion a l In tegra t ion (Fl) lesson revelations cam e as m iracles—a gold en d oor op en in g n ew p ossibilit ies, n ew rela t ion sh ip s to m yself an d to others. I cou ld p erceive how one m ay in d eed change an d overcom e negative an d l im it e d feelings of oneself. W h en I fir st felt the con n ect ion betw een m y head an d feet I bu rst in t o lau ghter. That I cou ld feel sou n d an d v ibra t ion th rou gh m y feet or th e m o b il i t y of m y r ibs an d shou ld ers w as m ir a cu lou s—I loved a ll the rocking m ovem ents an d loved d iscover in g p ossibilit ies. H ein ke w as goin g back an d fo r t h to Ger-m any and so I fou n d other Feld enkrais teachers. I ben efited a great d eal fr o m Francois Com beau , lessie Lebovicy, an d An n e Mar ie Berger's teach in g u n t i l I felt read y to ap p ly to M y r ia m Pfeiffer 's p ractitioner 's p rogram .

©Copyright 2008 Eva Scher, used w i t h permission.

The Face Behind the M ask Chava Shelhav-Silberbush

A you n g w om a n of average h eigh t, a p leasant b u i ld , an d fa ir cu r ly h a ir th a t covered her forehead an d p ar t of her face w as at the d oor. She w as sm ilin g . H er face w as scarred an d asym m etr ica l. As I look back at the first Fis I gave Eva, I ask myself, " W h y d id I t ou ch her face r igh t away?"

Du r in g ou r p r e lim in a r y in ter v iew she com p la in ed abou t l im i t e d m ov em en t i n h er chest an d a t i n -g lin g sensation i n the shou ld er. This w as her reason for com in g to m e. I asked h er to take a few steps arou n d the r oom . I n ot iced stiffness i n th e chest an d hesitancy i n w a lk in g , as if she w as w a lk in g o n an u nstable su rface. I asked her to lie o n her sid e, t h in k in g th a t th is p osit ion w o u ld a llow m e to easily check the m ovem en t of th e r ibs an d give h er a m ore com p lete p ictu re of t h em . I cou ld th en m ake the con n ection betw een the r ibs, the p elvis, an d th e legs.

It became ap p arent th a t she h ad an im p la n ted con d u ct ive h ear in g a id . I con sid ered th e lik e lih ood she h ad u nd ergone com p lica ted su rgery to reh abilita te h er h ear in g . If so, th e area w o u ld have been trau m atized by the cu t t in g of tissue an d m u scle, w h ich w o u ld lead to a lessen ing of sensation there. So gentle, p resent tou ch w as r equ ir ed . A lt h ou g h I n o t iced h er facial scars an d asym m etry o n ou r fir st m eeting, I th ou gh t she m igh t have been b u r n t an d I d id n ' t relate to Eva's face as a "p roblem ." In stead , I add ressed her face as p a r t of her w h ole self, like any oth er p a r t of th e self th a t need s to be tou ch ed in ord er to d evelop sensations.

Throu gh tou ch in g , I fir st cla r ified each p ar t of Eva's face i n r ela t ion to th e w h ole . I asked myself, "Wh y do p eop le ten d to keep th eir h a n d o n th eir p a in fu l area?" In d eed , there is an in st in ct ive reac-t io n w e also see i n dogs an d cats w h o con stan tly lick at th eir w o u n d ed p aw . The real p roblem s

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appear w h en one suppresses th is in st in ct ive react ion an d w ip es ou t the in ju r ed p ar t fr o m th e bod y im age an d self-aw areness. In the Feld enkrais M et h o d [of som aatic ed u ca t ion ], w e p u rp osely d on ' t d irect ly address th e p a in fu l or d elicate area. We w o r k a r ou n d i t or far aw ay fr o m i t ; i f th e p a in is d istal, w e w or k p roxim ally an d vice versa. Bu t since Eva h ad n o r ecogn it ion of her face an d sku ll, on ly a d irect tou ch cou ld a llow her to becom e aware of th eir p resence, an d on ly th is d irect ap p roach a llow ed her su ch an am azing change.

The face is a p r im a r y focu s of r ecogn it ion . In in fan cy i t is a sou rce of d iscovery, en joym en t, games, an d secu rity. Babies learn to read th e faces of th eir p aren ts an d others. They react an d act i n response to facial exp ressions; a sm ilin g face is en cou ragin g, a sad face can cause an in fan t to ciy . A n in fan t 's facial exp ression is actu ally reflected i n the en tire self. Just p ictu re h o w a baby's b road sm ile is expressed by a fu l l bod y w iigg le .

A n in fan t p lays w i t h h is hand s, b r in g in g t h em to h is m o u t h , u sin g t h em to exp lore h is face, tou ch -in g objects. This is th e w ay he connects w i t h h is en v iron m en t an d also d ifferen tiates the in ter n a l an d external w o r ld . This exp erience w as a v o id for Eva an d affected m an y layers of her life. To in tegrate her face in to her self im age it w as necessary to take h er th r ou g h a ll th e d evelop m en ta l stages she h ad n ot exp erienced .

Wh en w or k in g w i t h babies, I w i l l p rov id e p rop r iocep t ive in fo r m a t io n if p ar ts of them selves d o n ot resp on d p rop er ly . For exam p le, w h en a baby does n o t su p p or t h im self w i t h h is h an d , I w i l l p u t h is h an d on the floor so th a t he can feel th e su p p or t . By d o in g so I a llow for th e "m a p p in g " of h is h a n d in to h is bod y im age. H ow ever, w i t h babies an d i n Eva's case, I cam e to look at th is strategy fr o m a d ifferen t p ersp ective. I acqu ired in sigh t abou t th e im p or tan ce of ad d ressing th e d elicate area fir st in stead of avoid in g it an d thereby r ein forcin g the in h ib i t io n . In ord er to overcom e a d ram atic p a in situ a t ion , there is a necessity to connect th e p a in fu l sp ot n ot on ly th r ou g h the in ter act ion betw een a ll aspects of the bod y bu t also to con n ect i t w i t h a n ew m ovem en t behaviou r , p ostare, stability, a n ew schem e. The p a in or in h ib i t ed p a r t t h en becom es a step p in g stone.

Babies p lay v n t h th eir h an d s an d m o u t h , exp lore th eir face w i t h th eir toys. They b r in g a toy to th eir face an d the face becom es a p r im a r y focu s of r ecogn it ion , a sou rce of games, d iscovery an d en joy-m en t . In Eva's case, her face w as cu t off fr o m h er awareness. As a baby she sensed it w as stigm atised . She slep t on her belly , the p elvis h ig h u p , her face h id d en i n th e p illow s. H er face w as n o t a sou rce of h ap p y n ew contacts an d d iscoveries. As a consequ ence, she d id n o t b r in g su r r ou n d in g objects close to her face, t ou ch t h em an d b r in g t h em to her m o u t h . H er eyes w ere n o t accu stom ed to seeing objects clearly, to scru tin ize an d investigate t h em .

Eva t o ld m e she felt aw kw ard eating, th at i t w as d ifficu lt to b r in g food to her m o u t h w it h o u t d r op -p in g it an d m ak in g a mess on th e table. Even tod ay she stUl feels a b it nervou s an d self consciou s w h en eating a r ou n d p eop le i n a n ew en v iron m en t . She pays close a t ten t ion to every gestu re so as n o t to sp ill. Thus p r ov in g w h en an in h ib i t ed p a r t becom es clear i t is a p ath w ay to overcom e in h ib i t io n .

Each of ou r facial or ifices has a sp ecific fu n ct ion su ch as seeing, eating, sm ellin g , bu t are n o t p r im a r ily d esigned for m a k in g faces. As I w or k ed vtfith Eva, an d cla r ified th e g lobal facial p ictu re, the kinaesthetic sense w as available an d she w as read y to ap p reh en d h er face i n a d ifferen t w ay. In ch ild d evelop m en t the senses com e first , an d on ly later o r ien ta t ion is con n ected to the m ovem en t . In m y w or k w i t h Eva, I d ifferen t ia ted separate d evelop m en t of h er facial kinaesthetic sense, her sku ll, an d th en brou gh t her to feel r o ta t ion —to feel h o w the fr on t is or ien ted i n op p osit ion to the back.

At th e en d of th e lesson she r ep or ted a n ew sense of stability . She began to t e ll m e her story. She ta lked an d she cr ied . I listen ed . I let her cry. The sp on taneou s cry in g th at took her by su rp rise w as a great relief. W h en a p erson feels m ore p h ysically stable, she can th en take th e r isk of exp osing her feelings, shar ing her sadness or anxiety.

U n t i l n ow her head an d face w ere n o t p ar t of her self im age In the past, h er m ovem en t lessons concen trated on her bod y an d her face r em ain ed ou t of bou n d s, like a m ask. The qu est ion was h ow to in clu d e her face i n th e bod y sensation . I gen tly tou ch ed a ll the facial bones to com m u n ica te the locat ion of bod y p arts to her nervou s system , con n ect in g th e areas tou ch ed to others to m ap the p ar t

2 0 0 8 T H E F E L D E N K R A I S J O U R N A L N O .

in the self im age. I lin gered over each area of her sku ll an d face, an d I verba lly n am ed each bon e. I con tin u ed u sin g d ifferen t types of tou ch p ayin g a t ten t ion to a ll the d etails of her sku ll. I also tou ch ed her neck an d shou ld er, o n one sid e on ly . Con cen tra t ion on one sid e at a t im e allow s a clearer sense of the d ifferences betw een the sides. This n ew rela t ion of the face an d sku ll resem bles the w ay babies learn abou t th eir bod ies an d create th eir self im age. Babies begin th eir d evelop m en ta l jou r n ey th rou gh p rop r iocep tive tou ch an d w h en the p rop r iocep t ive p ictu re is clear, th ey are read y to m ove. So in a su bsequ ent Fl lesson, I ad d ed m ovem en t to th e p rop r iocep t ive con ten t of th e lessons. She stood , tu r n ed to one side, an d rem ain ed i n th e tw isted p osit ion . Then I asked her to te ll m e to w h ich side her face is facin g an d to w h ich sid e is the back of her h ead . She cou ld n o t answ er these qu estions. There was n o d ifferen t ia t ion betw een h er face an d sku ll i n h er self im age. H er or ien ta -t ion was clearer in other p arts of her bod y. Therefore, I t u r n ed to cla r ify in g the sensation i n these p laces: abd om en versus back, p u bic bon e versus sacru m , th e s ter n u m versus betw een sh ou ld er blades, th roat versus the back of neck. Th rou gh these exp lorations an d clar ifica t ion s w e a r r ived at her face—nose, jaw , eyes, u n t i l the loca t ion of th e fr on t an d th e back becam e clear an d coheren t. The id ea was to p resen t a fu n ct ion a l in t r od u ct ion to p ar ts of herself th a t w ere absent fr o m her bod y image. It was a lon g an d em ot ion a l p rocess. This b rou gh t m e to p on d er anew th e im p or tan ce of the w hole self im age Feld enkrais often ta lked abou t.

I u sed verbal qu estions to h elp in tern alize an ad d it ion a l p ersp ective of self-im age. The lessons became a d ia log betw een n on -verbal an d verba l qu estions, asked by tou ch an d u tterance. The w ay she answ ered clar ified for b o th of us w h ere she w as. Over th e last few years, th e im p or tan ce of verba l d ialog an d sensitive, p r ob in g qu estions has becom e clearer to m e. The qu estions m u st be w it h o u t an agenda, qu estions th at d on ' t lead i n a p ar t icu la r d ir ect ion , qu estions th a t leave a vnd e range of choice, qu estions th at a llow a p erson to search for an answ er. There is a great im p or tan ce to the w ord s that are chosen .

As a ch ild , Eva cou ld sense th a t her face w as taboo. It w as a face th a t w as never actu ally tou ch ed . H er ch ild h ood m em or y w as of a low ered h ead . The m o u t h , eyes, ears, n ostr ils w ere u sed on ly for su rvival. H er eyes never becam e accu stom ed to exam in in g objects at close range. Ou r jou r n ey started as an Fl for a shou ld er com p la in t . A n u n an t icip a ted p rocess u n fo ld ed . W h en a rep ression becomes clear the rep er toire of everyd ay life op ens to p e r m it d iscovery of th e collabora t ion of m ove-m en t, feeling an d th ou gh t . It was m u ch m ore im p o r t a n t to leave m yself available to th e as yet u n d is-covered th an to resp on d to the or ig in a l com p la in t . W h en I m eet a p er son i t is h a r d to guess w h a t is h id in g u n d er the sk in .

©Copyright 2008 Chava Shelhav-Silberbush, used w i t h permission.

Eva's Responses Two Lessons with Chava Thank you for yesterday's Fl . For a m o m en t I cou ld actu ally feel m y face breathe. It w as an extraord i-n ar ily n ew an d u nexp ected feeling for m e. I w en t h om e feelin g com p lete—like a ch ild w h o has a new toy. For the very fir st t im e I star ted tou ch in g m y face, feelin g cu r iou s an d p lay fu l. Can th e sku ll be as m obile as the other p arts of the skeleton? Can in d eed th e nose, th e cheeks, th e eyebrow s, th e jaw be d ifferen tiated one fr o m an oth er an d m ove i n op p osite d irect ion s ju st as M y r ia m tau gh t us to d o w i t h ou r toes? H o w does brea th in g affect the m o b il i t y of th e face? Wh at is th e am p litu d e of th is m obility? Besides th e jaw , is there su ch a t h in g as d ista l an d p r oxim a l m ovem en ts of th e nose, ear, etc.?

I am look in g forw ard to con tin u e th is exp lora t ion w i t h y o u next Tuesd ay. I k n ow th a t th is w o r k w i l l enable m e to b r in g sign ifican t gu id ance to m y fellow fr ien d s w i t h TCS.

T H E F E L D E N K R A I S J O U R N A L N O . 21 2 0 0 8

The last F l w as am azingly im p or t a n t an d st r u ctu r in g for m e. I t took m e a few days to be able to verbalize w h a t h ap p en ed . I felt for th e fir st t im e the rela t ion sh ip betw een m y FA C E an d m y r ibs, m y torso. Th rou gh ou t m y t r a in in g , I h a d in tegrated th e rela t ion sh ip betw een th e h ead th e torso, the p elvis. Bu t as I n ow k n ow the h ead is n o t d issociated fr o m th e face. Up u n t i l you r lesson , Chava, I h ad the p ercep t ion of the h ead an d face bein g like a N o theater m ask:

M A S K - A face cover ing. Usu ally it is som eth in g w o r n o n the face, vw th op en ings for the eyes, to conceal one's id en t ity , either for p a r ty in g (as at a m asqu erad e ba ll), to fr igh ten or am u se (as at H allow een ), for r it u a l, or for p er fom an ce (as by d ancers, or by actors i n Greek, Rom an , an d Japanese theatre.) It m ay be w o r n p r in cip a lly to p rotect th e face (as a gas m ask, or a hockey m ask, or a p hysician 's m ask, etc.) It m ay also be any t w o - or th r ee-d im en sion a l rep resen tation of a face — as i n the cover ing of an Egyp tian m u m m y 's face d ep ict in g the face of the d eceased . A m ask can be a m o ld of a p erson 's face — a d eath m ask if m ad e after d eath , a hfe m ask i f m ad e before i t . It m ay be u sed as a verb: to cover i n ord er to conceal, p rotect , or d isgu ise.

Japan, N o m ask of a y ou n g w o m a n , iSth -ig th cen tu ry , carved an d p a in ted w o o d . The w h it e p a in t com p osed of cru sh ed egg-shells i n a bind er , Br it ish Mu seu m , Lon d on . N o (also called N oh ) is th e classical d ram a of Japan, w i t h m u sic an d d ance p er fo r m ed i n a h ig h ly stylized m an n er by m asked an d elaborately d ressed p er form ers on an alm ost bare stage. A sk ilfu lly carved m ask w i l l ap p ear to have su btle changes of exp ression d ep en d in g o n the w ay i n w h ich th e w earer tu rn s h is head an d th e angle at w h ich it is h e ld . This is one of several var ia t ion s of a y ou n g -w om an m ask based o n an or ig in a l d esign by Zeam i, knovrai a sZo-on n a .'

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H ow can I d escribe the su rp rise w h en I cou ld feel m y cheeks, m y eye sockets, d ifferen t p ar ts of m y forehead an d m y ch in r u b b in g th e tow el u n d er m y h ead as y o u w ere tw is t in g m y ribs? The sensation was so deep th at I feel th at I w as like a p ot ter a r t fu lly m o ld in g m y ov m face, d ecid in g o n th e p ressu re, the heat I w an ted fr o m the su p p or t in g table. I w as becom in g th e creator of m y face. As I w r it e a n ew association clarifies. Most of m y facial bones d o in d eed com e fr o m m y floa t in g r ibs an d h ip jo in t grafts so it 's n o w on d er th is m ovem en t h ad su ch an extraord in ary im p act . It freed m e, i t libera ted m e. M y face w as b o r n . A t h om e I exp lored the m ov em en t of t u r n in g the h ip s an d feelin g th e face fo llow -in g the m ovem en t m an y t im es as w e l l as the op p osite m ovem en t of th e face in v it in g th e ver tebra an d r ibs, p elvis an d h ip s to t u r n . I p ract iced m an y t im es to recap tu re th e am azin g sensation w h e n y o u d id it.

I felt sad an d d estabilized at the en d of th e fir st su m m er t r a in in g . I h a d learn ed to feel the m ove-m ents of the r ibs, the h ip s. I cou ld feel each of m y vertebrae an d h o w each one w as related to m y breath in g an d yet, th is n ew awareness m ad e m y face even m ore of a m ystery an d m ore isola ted from the rest of the bod y.

Since th is Fl , m y face is p resen t to m e at every m om en t . I can feel m y sm ile, m y eyebrow s, m y cheeks, m y breath in g , th e w i n d an d the su n , th e state of m y m u scles. M y face is becom in g th ree d im en sion al w i t h d ifferen t volu m es, ju st like m y r ibs. I have alw ays h ad d ifficu lty recogn iz in g an d rem em ber in g peop le's facial featu res Since the Fl , I p ay m ore a t ten t ion to p eop le's faces. As I feel th e volu m es of m y o w n face I can also p ay a t ten t ion to oth er faces. I can see m ore th a n ju st tw o eyes, a nose, a m o u t h , an d h air color an d len gth .

1. http://en.wikipedia.0rg/wiki/image:Masque-no-p1000705.jpg

2 0 0 8 T H E F E L D E N K R A I S J O U R N A L N O .

The last bu t n ot the least effect is h ow clear ly I can n ow d ist in gu ish betw een the fr on t an d th e back of myself. Before it w as an in tellectu a l abstraction bu t n o t k in esth et ica lly in tegra ted . As I can n ow d ifferen tiate betw een the back of m y h ead an d m y face a n d p ay a t ten t ion to every bon e, m u scle an d feel the skin of m y face, I can fin a lly clearly d ist in gu ish betw een m y back an d m y fron t . It gives m e a new stability an d sense of d ir ect ion i n m y life.

This lesson is a t u r n in g p o in t i n m y ev olu t ion an d as a fu tu re p ract it ion er . I can see h o w each les-son has b u il t u p to th e next. I felt y ou w ere gen u in ely in terested i n m y situ a t ion an d in en ablin g m e to d iscover an d feel m y face. It felt an echo to m y qu estions an d it w as reassu ring. I kn ew th a t I cou ld let go of m y fears, to let go of the w alls an d u nnecessary barr iers, to accep t an d express a ll th e sadness. A ll th is was necessary to aw aken m y a t ten t ion , m y read iness to learn , to feel an d to d iscover m y face.

In 2 0 0 6 1 was in v ited to p ar t icip ate i n a T C S p an el for fam ilies an d others con cern ed w i t h th is rare genetic d isease. A geneticist fr o m N ecker H osp ita l i n Paris exp la in ed i n allegoric term s th e genetic origins of TCS. H e com p ared the gene cau sing T C S to a sp ellin g m istake i n a single w o r d fr o m a book of the D N A libra ry . I w as the fin a l speaker. I p laced m y notes on th e table an d took a b ig brea th i n order to speak in a clear voice.

The sp elling m istake w ishes to speak an d to be h eard . A sp ellin g m istake can n ot be erased an d corrected w ith ou t leaving a sm u d ge or a scar. A ch ild th a t is b o r n w i t h T C S carries scars th a t can -not be erased . They leave a sm u d ge th a t w i l l never en t irely d isap p ear. I a m asking a ll p ar t icip an ts in th is conference to becom e aware of th e w ord s th ey use to ta lk abou t u s; because w ord s w i l l d eterm ine h ow w e accep t an d p erceive ou r self, ou r d ifference. Word s can sooth an d h elp u s grow and overcom e ou r d ifficu lt ies bu t w ord s can also h a r m , cause everlasting scars, an d d estroy ou r self-esteem. A single cop y of a u n iqu e book w i t h a "d efau lt" is called a rare book an d is w o r t h a form n e. In a green m ead ow a fou r -leaf clover is consid ered as a lu cky ta lism an . I therefore in v ite a ll of you to p erceive us w i t h T C S as in valu able rare books, as u n iq u e as fou r -leaf clovers i n a green m ead ow . You w i l l see th is br in gs n ew p ersp ectives an d p ossibilit ies to ou r lives.

D u r in g th is p an el I have h eard abou t fixing, r ep a ir in g an d op era t in g as early as p ossible. I have benefited greatly from science, b u t I believe there are m ore sim p le an d efficien t w ays of m a k in g m ean in gfu l im p rovem en t in you r ch ild 's life. It is ca lled en h an cin g self esteem an d self im age. Self image w i l l end u re d esp ite a ll the su rgeries i n the w o r ld . H o w m an y gorgeous p eop le feel u gly an d u n w or th y of love, w h ile the n o t so p ret ty w o m e n will feel con fid en t? I a m su re th a t som e fam ou s m ovie stars have never been loved th e w ay th a t som e w o m en w h o I m et th is w eek v n t h T C S are cherished by th eir com p an ion s.

H ere are some th ou gh ts based o n m y exp erience an d m y t r a in in g as a Special Ed u ca t ion teacher to m ed itate on an d to ap p ly w it h o u t m od er a t ion . I p rom ise th is w i l l n o t cost y o u a d im e and w i l l foster g row th an d joy i n the w h ole fam ily .

Parents, accep t you r ch ild as he or she is. If i t is d ifficu lt to d o so, w o r k o n you r self, seek p rofes-sional h elp to overcom e th e feelin g of gu ilt an d a sense th at y o u m u st rep air you r m istakes.

You m ay be concerned th at you r ch ild vwU suffer. This enhances gu ilt an d uneasiness with you r ch ild 's d ifference. Th in k of it i n th is w ay: W h o d oesn 't su ffer o n th is earth? D o n ' t w e a ll lea rn fr o m ou r su fferings an d hard ship s? Th in k of a ll th e ch ild r en o n ear th w h o su ffer fr o m p over ty , racial d iscr im in a t ion an d w ars. The id ea of hap p iness is a m o d er n concep t. In form er cen tu r ies ch ild r en w ere forced to w or k u n d er h or r ib le con d it ion s. We sh ou ld therefore rejoice at th e freedom an d happ iness of ou r d aily lives.

A ch ild w i t h a d ifference w i l l lea rn to ad ap t to h is or h er h an d icap , com p en satin g for th e d i ff i -cu lty. Observing an d ta lk in g to ch ild r en , teens an d y ou n g ad u lts w h o have d ifficu lt ies I see th a t w e

T H E F E L D E N K R A I S J O U R N A L N O . 21 2 0 0 8

d evelop ed better social skills an d find w ays to com p ensate for ou r facia l d ifference. I saw lit t le kid s d evelop ing su rv ival skills at a very y ou n g age. The m ore y o u overp rotect you r ch ild , th e less he or she w i l l be able to d evelop h is or h er o w n su rv iva l d evice. That is a m u ch m ore severe h an d icap en su r in g i t w i l l be h ard er to in tegrate a grou p , change schools, m eet n ew p eop le.

Make you r ch ild an actor i n th e su rgical p rocess. Exp la in to h i m or h er w h a t w i l l be d on e. D on ' t d o an yth in g against h is or her w i l l . After a ll, i t is you r ch ild 's bod y y ou are t a lk in g abou t. You r ch ild m u st feel the ow n er of h is or h er bod y. Even d ecid in g on th e d ay of the su rgery is im p or t a n t . I suf-fered a lo t from bein g d ep r ived of th a t d ecision p ow er.

You r ch ild 's sense of t im e is n ot th e same as you rs. As p aren ts y o u are p roject in g years ahead , h ow you r ch ild w i l l be able to w or k , stu d y, m ar r y , have n o r m a l ch ild r en : a ll of these are p er t in en t qu estions an d v a lid concerns bu t you r ch ild 's p reoccu p a t ion lies i n the p resen t—in facin g a grou p of tou gh kid s w h o w i l l cer ta in ly lau gh , or tease, sta r t in g a n ew school year w i t h a n ew teacher an d n ew classmates; w on d er in g abou t h ow p a in fu l th e d en tist session w i l l be, or w o r r y in g abou t n o t bein g abou t to hear the teacher w e l l en ou gh to u n d er stan d th e assignm ent.

Parents sh ou ld be atten tive to w h a t th eir ch ild is facin g i n everyd ay life. It is n ot easy to d evelop a h ap p y balance betw een overp rotect in g you r ch ild an d le t t in g h i m or her battle w it h o u t you r em ot ion a l su p p or t . Com m u n ica t ion is a key factor i n accom p an yin g you r ch ild i n a h e lp fu l w ay. Listen to w h a t they are saying, h is bod y langu age, h is exp ression of stress an d fear. Bear i n m i n d that you r ch ild is d o in g the best he can , given th e circu m stances. Do n o t ask h i m to com p ete w i t h kid s h is age, to ob ta in th e same sch ool resu lts. You r ch ild w i t h TCS w i l l n eed tw ice as m u ch effort to ob ta in th e same resu lts of average kid s. They w i l l n eed to face h ear in g im p a ir m en t , a n d a h igher level of stress w h en th e rela t ion sh ip s w i t h the classmates or th e teachers is d ifficu lt . The p sychologist Maslow d em on stra ted th a t i n ord er to lea rn an d reach a h igh er level of t h in k in g an d d evelop m en t one m u st have the basic need s fu lfi l led : food , a d w ellin g an d basic secu rity, an d grou p belon gin g. W h en su ffer in g from a facial d ifference one often feels i n a state of im m in en t danger, w h ich slow s the lea rn in g p rocess.

An oth er factor th a t p aren ts t en d to forget i n th eir ru sh to fix th in gs is h ow m u ch the ch ild is h elp in g y ou . M y p aren ts h ad n o id ea h o w m u ch I kep t to m yself so as n o t to w o r r y t h em , n o t to bu r d en t h em fu r ther . If y ou accep t th e ch ild as an actor i n th e p rocess, i t w i l l becom e a lo t easier to find solu tion s. If th e ch ild is regard ed as a t h in g to be m a n ip u la ted th e ch ild w i l l feel like a v ict im in stead of a p a r t icip an t .

©Copyright 2008 Eva Scher, used w i t h permission.