stroke of intuition: a daughter's perspective on her mother's stroke recovery
DESCRIPTION
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
A Daughter’s Perspective on Her Mother’s Stroke Recovery By Melissa A. Rosati, CPCC
A STROKE OF INTUITION
October 29, 2014 | #worldstrokeday
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
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
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
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).
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
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
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.
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
“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.)
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.
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.”
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
So, why can’t she pass the Dixie Cup from one hand to the other?
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
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.
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
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?
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.
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.
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
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.
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.
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