Stroke of Intuition: A Daughter's Perspective on Her Mother's Stroke Recovery

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A Daughter’s Perspective on Her Mother’s Stroke Recovery By Melissa A. Rosati, CPCC A STROKE OF INTUITION October 29, 2014 | #worldstrokeday

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WORLD STROKE AWARENESS DAY is October 29th. In the United States, stroke causes one death every four minutes. When Melissa A. Rosati had a precognitive dream of an older woman in an intensive care unit, she did not consider the woman might be her mother. But her mother, an indomitable prima ballerina of dance instructors, was a ticking time bomb for a stroke. Each family member missed the symptoms. Days after the dream, Melissa's mother suffered a massive stroke. This mother and daughter relationship, by no means an easy one, faced the ultimate test of resourcefulness in the stroke’s aftermath of partial paralysis, speech impairment, and vision loss. Describing her mother's hospital room as a "hellfire pit of helplessness and loss," Melissa realizes her mother's best chance for survival is not in medical intervention alone. Her mother was a stroke patient by circumstances. She was a dancer in her heart and soul. In the United States, where 45 million adult caregivers provide care for someone over the age of fifty, there is growing interest in using creative arts in approaches to caregiving. In this presentation, Melissa shares how a hospital bed transformed into a dance studio, reclaiming her mother's identity, her will to live, and surprising her medical team.

Transcript of Stroke of Intuition: A Daughter's Perspective on Her Mother's Stroke Recovery

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A  Daughter’s  Perspective  on  Her  Mother’s  Stroke  Recovery  By  Melissa  A.  Rosati,  CPCC    

A  STROKE  OF  INTUITION  

October  29,  2014  |  #worldstrokeday  

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Key  Points    • Missed  symptoms  • The  Dixie  Cup  Test  • Intuition:  Focus  on  the  dancer    • Dancing  with  muscle  memories  • The  outcome  of  Mom’s  stroke  recovery  • Mom’s  return  to  dance  • Lessons  learned  • Resources  • About  the  Author  

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Missed  Symptom  #1:  The  Coffeemaker  It’s  early  morning.  Mom  is  standing  in  front  of  the  coffeemaker  and  cannot  make  the  mental  connection  required  to  insert  the  plug  into  the  wall  socket.      My  father  thinks  she’s  having  a  ‘senior  moment’  and  plugs  it  in  for  her.  Leaving  the  house,  he  suggests  she  rests.    

A  transient  ischemic  attack  (TIA)  is  an  event,  sometimes  called  a  mini-­‐stroke,  with  stroke  symptoms  that  last  less  than  24  hours  before  disappearing.—National  Stroke  Association  

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Missed  Symptom  #2:  TV  Remote  Control  At  11  pm.  on  the  following  evening,  Mom  calls  her  son  and  asks  for  help  turning  off  the  television.  She  can’t  remember  how  to  use  the  remote  control.      My  brother,  who  lives  close  by,  drives  to  the  house.  He  turns  off  the  television.  He  also  thinks  the  problem  is  her  memory.    He  bids  her  goodnight  and  returns  to  his  home.        

Up  to  40  percent  of  all  people  who  have  experienced  a  TIA  will  go  on  to  have  an  actual  stroke.  Most  studies  

show  that  nearly  half  of  all  strokes  occur  within  the  first  two  days  after  a  TIA.–  National  Stroke  Association  

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Day  3:  The  Big  Stroke  A  ballet  dance  instructor,  Mom  collapses  while  teaching  a  class.      Paramedics  rush  her  to  a  local  community  hospital.  After  the  initial  assessment,  she  is  airlifted  to  a  major  university  hospital  and  placed  in  ICU  (intensive  care  unit).        

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The  Big  Stroke’s  Impact  • Partial  paralysis  all  along  the  left  side  from  her  eye,  her  face,  side,  leg,  down  to  her  toes  • Difficulty  speaking  • Difficulty  swallowing  • Partial  blindness  in  the  left  eye  • Complete  shattering  of  her  sense  of  self  

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What  the  Doctor  Says  &  the  Backstory  He  Doesn’t  Know    

• Mom  has  high  blood  pressure.  • Mom  has  Arterial  Fibrillation  (A-­‐fib).  •  If  she  does  not  take  her  high  blood  pressure  medicine  consistently  and  monitor  the  A-­‐fib,  she  will  most  likely  have  another  stroke  within  one  year.    •  It  is  interesting  that  she  is  a  dancer,  but  she  is  69  years  old.  Recovery  is  tough;  she  needs  a  stomach  peg  tube.  It’s  unlikely  that  she’ll  return  to  teaching  dance.  Rehab  to  start  immediately  to  recover  basic  motor  skills.  Prepare  her  home  for  physical  accommodations.    

•  She’s  had  high  blood  pressure  for  years  and  did  nothing  about  it.  “I’m  in  great  shape.”  •  Since  she  believed  her  strong  physical  conditioning  made  doctor  visits  unnecessary,  the  A-­‐fib  went  undetected.    • Mom  is  a  tough  competitor.  •  She’s  dedicated  her  life  to  dance  education.  •  By  implying  that  a  return  to  teaching  is  unlikely,  Mom  will  interpret  that  to  mean  she  has  no  reason  to  live.  

Doctor’s  assessment     The  backstory  he  doesn’t  know  

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The  Dixie  Cup  Test:  Failure  and  Fear  of  Death  • The  physical  therapist  instructs  Mom  to  pass  a  Dixie  cup  from  her  right  hand  to  her  left.  •  It  slips  from  her  fingers  and  falls  dead  in  her  lap.  • Mom  unleashes  an  ear-­‐piercing  wail.  Her  face  is  beet  red.  She’s  drooling.    • The  hospital  room  is  now  a  hellfire  pit  of  helplessness  and  loss.  • The  young  physical  therapist  is  visibly  shaken.  I  ask  her  to  leave  us  alone  for  a  few  minutes.    • Mom  is  so  angry  and  frustrated  that  she  is  a  patient.  How  can  I  reach  her?  • Massaging  her  feet  to  soothe  her,  I  have  an  idea  to  try  something.      

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A  Stroke  of  Intuition  She  is  a  stroke  patient  by  circumstances.    She  is  a  dancer  in  her  heart  and  soul.      Holding  her  feet  in  my  hands,  I  choose  to  coach  the  dancer.      “Mom,  look  at  me,”  I  command.  Look-­‐at-­‐me.  Let’s  breathe.”  “No,  dy,  dy,  dying.”    

Danseuse  en  Blanc,  1877.  Edgar  Degas  

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“Mom,  God’s  big  test  for  life  or  death  is  not  ‘pass  the  Dixie  cup.’”    

(Although,  the  family  fears  death  could  well  be  around  the  corner.)    

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We  start  with  leg  positions.  I  tell  her  to  put  her  feet  in  ballet’s  first  position.    Show  me.  As  if  she  is  on  stage  opening  Swan  Lake,  Mom  snaps  her  heels  into  place—knees  straight,  legs  rotated  out  from  the  both  hip  sockets.    

We  are  both  astounded.  No  longer  in  a  hospital  room,  we  are  in  a  dance  studio.  Her  bed  is  the  stage.  I  coach  her  on  through  the  next  four  positions  with  her  legs  and  feet.    

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Quip  per  Quo  

“Not  bad,”  I  tease.  “  But,  I’ve  seen  you  do  better.”      (I  wish  I  had  a  dime  for  every  time  I  heard  that  one  growing  up.)      Now,  there  is  a  glint  of  a  smile  coming  from  her  right  eye:  “very  funny.”    

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Arms  &  Legs  Together  After  we  finish  the  leg  positions,  I  challenge  her  to  do  all  five  arm  positions.  While  the  partially-­‐paralyzed  left  arm  is  far  from  graceful,  her  range  of  motion  is  impressive.      Next,  I  challenge  her  to  do  arms  and  legs  together  in  all  five  positions.    She’s  100%  focused  on  her  body  as  an  instrument  and  does  each  position  on  my  command.         Drawings,  1870s.  Edgar  Degas  

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So,  why  can’t  she  pass  the  Dixie  Cup  from  one  hand  to  the  other?    

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The  answer  involves  muscle  memory.    Our  brains  record  and  store  all  of  our  repeated  actions.    With  this  procedural  memory,  we  become  very  good  (or  very  bad)  at  something  the  more  we  repeat  the  action.    Mom  had  unconscious  competence  and  excellence  for  dance  moments.    Passing  the  Dixie  cup,  on  the  other  hand,  was  asking  her  to  make  a  conscious  effort  to  complete  the  task.  Damaged  by  the  stroke,  her  brain  had  difficulty  processing  that  movement,  just  like  plugging  in  the  coffeemaker  and  turning  off  the  TV  remote.  

Series:  Dancers  in  Green,  1870s.  Edgar  Degas  

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Dancing  with  muscle  memories  • Tapping  into  her  competitive  nature,  I  tell  her  the  doctor  doesn’t  think  she’ll  be  able  to  go  back  to  teaching.  “Shall  I  ask  him  to  come  see  what  you  can  do?”  • She  slurs  a  definitive  “yes.”  •  I  lead  Mom  through  her  routine.  The  doctor  is  surprised.  She’s  still  in  serious  condition  but  she  is  transformed  in  her  demeanor.    • The  doctor  explains  her  muscle  memory  is  outstanding  for  ballet  movements,  and  perhaps  the  stroke  did  not  do  complete  damage  to  the  area  of  her  brain  that  controls  dance  movements.    • She  is  now  more  than  his  stroke  patient  who  needs  a  stomach  peg  tube.  She  is  a  dancer  who  wants  to  heal  after  suffering  from  a  severe  stroke.    

 

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Curtain  Call  Mom  has  now  regained  a  crucial  aspect  of  her  identity.    But  before  the  doctor  leaves,  I  place  the  Dixie  cup  on  the  tray  in  front  of  her.      “Focus  on  position  three  with  your  arms,”  I  tell  her.  “Now,  pass  the  cup  to  your  left  hand.”      Not  a  fluid  motion,  but  she’s  determined.  Very  slowly,  she  does  it.    Applause.      

The  Star  of  the  Ballet,  1878.  Edgar  Degas  

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The  Following  Day…  • Mom  is  exhausted,  ashen,  and  looks  far  worse  than  the  day  before.  • The  physical  therapist  returns.  • Mom  does  pass  the  Dixie  cup  and  two  more  exercises  by  struggling  hard.    • Her  outlook  is  slipping  back  into  the  hellfire  pit.    • How  do  I  keep  the  dance  metaphor  alive  for  her?  •   Is  it  going  to  make  a  long-­‐term  difference?  

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Visualization:  Powerful  Medicine  What  Mom  and  I  create  together  in  her  hospital  room  heals  our  difficult  relationship.    

No  regrets.    

However,  I  recognize  the  difference  between  strength  and  stamina.  She  cannot  do  her  dance  movements  every  day.  

But  she  could  dance  entire  ballets  in  her  imagination!  I  bought  for  her  a  CD-­‐Player  with  large  buttons  and  headphones,  Swan  Lake  and  Sleeping  Beauty.    

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The  Rehabilitation  Process  • The  CD  player  did  the  trick.  Mom  loves  listening  to  music.  Her  feet  and  hands  sway  in  time.  She  begins  to  imagine  going  back  to  her  studio.    •  I  talk  to  the  physical  therapist  and  suggest  to  her  to  put  Mom’s    exercises  into  a  dance  context.  Explain  what  she  wants  Mom  to  do.  Then,  ask  her  to  perform  it.    • When  she  is  transferred  from  the  hospital  to  a  rehabilitation  facility,  Mom  doesn’t  like  it.  By  being  uncooperative,  she  thinks  she  can  force  the  doctor’s  hand  to  send  her  straight  home.    • Drawing  comparisons  between  rehabilitation  and  rehearsals,  I  help  her  see  that  rehabilitation  is  a  series  of  steps  leading  up  to  going  home.    • Six  weeks  later,  she’s  passed  all  of  her  physical  and  occupational  therapy  assignments  and  is  released  to  return  home.    

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Mom’s  Return  to  Dance  Sitting  in  a  chair,  Mom  directs  her  class  with  help  from  the  advanced  students.    

She  has  the  stamina  for  one,  sometimes  two  classes  each  week.  

One  year  after  the  stroke,  she  teaches  several  classes  almost  every  day.  

Two  years  later,  she  retires  and  takes  up  gardening.    Seven  years  later,  she’s  still  gardening  and  teaching  the  occasional  private  lesson.     Rehearsal  of  the  Scenes,  1872.  Edgar  Degas  

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Lessons  from  this  experience  • Mom  learns  to  accept  help  and  that  her  medical  team  is  on  her  side.  She  follows  their  instructions  for  medication,  sticks  to  her  check-­‐up  schedule,  and  asks  for  help  when  she  needs  it.    • The  family  learned  the  FAST  formula  for  signs  of  a  stroke.  • A  diagnosis  is  not  a  definition  of  who  the  patient  is  as  a  human  being.    • Tapping  into  a  patient’s  passion  for  life  can  open  the  channel  for  regaining  identity,  self-­‐respect,  and  motivation  for  going  forward.  • Visualization  is  an  empowering  practice  for  helping  a  patient  construct  her/his  future.  

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Resources  The  personal  essay  provides  the  full  story  and  twenty-­‐two  links.  For  World  Stroke  Awareness  Day,  it  is  FREE.  October  29,  2014.  Click  on  the  image.          Selected  highlights  include  the  following.      1.  Know  the  Signs  of  Stroke  2.  Remember  Who  I  Am  3.  Narrative  Medicine:  Honoring  the  Stories  of  Illness  by  Dr.  Rita  Charon  4.  Dance  Therapy  Using  Video  Technology  5.  The  Science  of  Dreaming  

Note:  This  presentation  and    personal  essay  are  intended  for  general  information  only.  For  health  concerns,  always  consult  a  medical  professional.    

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About  Melissa  A.  Rosati,  CPCC  

Melissa  A.  Rosati  writes  about  hopes,  fears,  and  the  mysteries  of  Awe  in  everyday  life.    She  is  the  Founder  &  President  of  Melissa’s  Coaching  Studio,  LLC.  Working  with  clients,    Melissa  puts  ‘who  you  are’  first.  Then,  she  helps  her  clients  bring  ‘what  you  do’  and  ‘how  you  do  it’  into  balance.  Learning,  sharing  knowledge,  and  finding  relationship  pathways  through  writing  and  the  arts  are  the  cornerstones  of  her  coaching  practice.      A  frequent  speaker  and  workshop  director,  Melissa  has  presented  at  writing,  wellness,  and  creativity  conferences  held  at  Memorial  Sloan  Kettering  Cancer  Center,  Montefiore  Medical  Center,  the  Leukemia  &  Lymphoma  Society  in  New  York  City,  Yale  University,  Skidmore  College,  the  University  of  Maryland,  and  the  Geneva  Writers’  Group,  in  Geneva,  Switzerland.    Melissa  is  a  graduate  of  The  Coaches  Training  Institute,  San  Rafael,  CA.  She  lives  in    New  York  City  with  her  husband  and  their  cat,  Social  Media  Max.      P:  917-­‐628-­‐4547  |  E:  [email protected]  |  T:  @melissarosati  |  L:  /in/melissarosati