Is Purpose the Missing Piece?Assembling Puzzles as Recreation and Therapy in an ALS Patient Esther-Lee Marcus, Arkadiy Sheynkman, Shlomit Glick, Sharon Karni Chronic Ventilation Unit, Herzog Hospital, Jerusalem, Israel
“He who has a ‘Why’ to live for can bear almost any ‘How’.” Nietzsche
Purpose in LifeOne particularly important component ofhuman flourishing has been defined as ‘asense of purpose in life’.This concept is taken from humanisticpsychology; it is demonstrated in thephilosophical writing of Viktor Frankl. Boyle PA et al. Psychosomatic Medicine 2009; 71:574.
Viktor FranklThe survivor of a concentration camp, ViktorFrankl noted that even when subjected toinhuman suffering, people can find lifemeaningful: what aided them in survivingwas having a purpose in life.
“Life is never unbearable bycircumstances, only by lack of meaning and purpose.” Viktor Frankl Man’s Search for Meaning
“We must never forget that we may also findmeaning in life even when confronted with ahopeless situation, when facing a fate thatcannot be changed. For what then matters isto bear witness to the uniquely humanpotential at its best, which is to transform apersonal tragedy into a triumph, to turnones predicament into a humanachievement. When we are no longer able tochange a situation - just think of an incurabledisease such as inoperable cancer - we arechallenged to change.” Viktor Frankl Man’s Search for Meaning
Purpose in LifeIn various studies, purpose of life has beenassociated with:– Happiness– Satisfaction– Self-esteem– Less disability1– Less cognitive decline2– Lower mortality rate3 1 Boyle PA et al. Am J Geriatr Psychiatry 2010:18:1093; 2 Boyle PA et al. Arch Gen Psychiatry 2010;67:304; 3 Boyle PA et al. Psychosomatic Medicine 2009; 71:574.
Purpose in LifePurpose in life may play an important role insurviving a chronic debilitating disease.One may influence purpose in life by variousinterventions.
Aims of PresentationTo present a case of a patient with severeprogressive disability due to amyotrophiclateral sclerosis - ALS - in whom we believerecreational therapy by assembling puzzlesgave her meaning and purpose in life.To review the role of recreational therapy inmaintaining quality of life and palliative careof ALS patients.
Case reporto A 68 year-old widowo Her hobbies included handicrafts and jewelry-making.o She immigrated to Israel at the age of 60.o Two years later she was diagnosed with amyotrophic lateral sclerosis (ALS).
Case reporto Despite progressive weakness and whilst still at home, she began to take an interest in working puzzles of 500-1000 pieces, since the fine motor ability in her hands was preserved.o At the age of 65, she came to need mechanical ventilation and was transferred to the chronic ventilation unit at Herzog Hospital.
Case reporto In the ward she needed mechanical ventilation most hours of the day, and with progression of the disease, was connected to the respirator 24 hours a day.o Initially she was partially mobile, but within a short time she was confined to bed or chair.
Case reporto In addition to problems related to coping with her mounting disability, she had to cope with problems of communication because she spoke neither Hebrew nor English.o A single staff member became attentive to her and became her interpreter to the medical staff.
Case reporto The patient occupied herself many long hours of the day putting together puzzles on a wooden board on her bed.o Sometimes staff members accidentally knocked the board over, and she had to start a part of the puzzle over again.
Case reporto After she almost completed a particularly difficult puzzle and was about to reach the climax to insert the last piece this piece could not be found.
Case reporto An email to the manufacturer of the puzzle elicited a positive response, and they sent a new identical puzzle.
Case reporto In order to find the missing piece, the patient had to put the same puzzle together from the beginning.o In response to the company’s gesture, she sent a thank-you note and told them her story, and the company sent 10 new puzzles as a gift !o Despite the decline in her fine motor skills, she did not give up assembling puzzles and continued to work, using a toothbrush and other aids to help her.
Case reporto Some of the completed puzzles have been hung in various places in the hospital and were a source of pride and joy of herself and her family.
Case reporto Unfortunately, last year there was a gradual worsening in her general condition, and she has been unable to work on the puzzles.o Since then, her spark of life has dimmed; she barely responds and is receiving life-support and palliative treatment.
DiscussionWe hypothesize that having a purpose in life gaveher a goal and motivation, arising in the morningand feeling fulfillment upon completing a puzzle.It might have preoccupied her, thereby reducingstress and anxiety.Puzzle assembly empowered the patient byenhancing her previous interest and capabilities inhandicraft skills.The loss of her final capacity to function might havebeen the “coupe de grace” for her cognitive abilitiesas well.
Recreational Activities in ALS Patients Case Studies
Rahamim Melamed Coheno An educator, living in Jerusalem. He was diagnosed with ALS in 1994 at the age of 57, but his condition has deteriorated so much so that he has become totally paralyzed and communicates only by using his eyelids.o Throughout the years of his illness, Rahamim has written nine books in fields such as poetry, literature, education, counseling, Judais m, and philosophy. http://www.melamed.org.il/paintings.html
Rahamim Melamed Coheno In the year 2007, Rahamim began painting, using a computerized program which follows his eye movements. He works mainly with Photoshop. Choosing the theme such as “With a Blink of an Eye" reflects the significance Rahamim attributes to the eyes, which are at the moment the center of his life.o The amazing paintings, the genuine ideas, the varied styles, and the control over the different painting tools leave the spectator agape.
Then the eyes of both of them were opened and they realized that they were naked and they sewed together a fig leaf, and made coverings for themselves. Genesis 3:7
Now the manna was likecoriander seed, and itscolor like the color ofbdellium.Numbers 11:7
“I feel as if my entire body is sunk in sand, and only my head appears above the ground, and my eyes look around as if saying: What a beautiful world.”
“Most people paint with their hands, some use their toes, others use their mouths but I paint with my eyes.” Rachamim Melamed Cohenhttp://www.reuters.com/article/2008/06/04/us-israel-disability-artist-idUSL0170689620080604
Margaret McCament Alexandero Alexander, a 64-year-old artist, was diagnosed with ALS.o Alexander describes the disease as “Hell. It’s awful, it is a continuous, ongoing loss of yourself.”o As she wages her fight against the disease, she finds relief in something she’s known most of her life: art.o Her original technique differed greatly from the thick stroke paintings she developed after ALS symptoms first presented.• Run Until Tackled: ALS and Me. Art Therapy http://alsandme.blogspot.co.il/2010/11/art-therapy.html• Walsh J. Painting through pain. http://www.record- bee.com/ci_20430145/painting-through-pain
Margaret McCament Alexandero Initially, she relied on both hands to complete her art work but with disease progression, shifted to left handed only and when she lost the ability to grip steadily with either hand, used a wrist brace to hold the brush in place.o Her work has been exhibited in the ‘ALS and Me” exhibition including: o Self-portraits depicting reaction to the disease o Bucket list – “Places I want to go or that I have gone, of things that I have done or want to do.”
“It allows me to face a challenge andsucceed.. The disease says, You can’tdo this, and I say Oh, yes I can, justwatch me.”
Self-portrait SeriesSelf-portrait: Diagnosis Self-Portrait with Hands
Bucket List Self-Portrait with GlacierSelf-portrait with Race Bucket List #3 Day Hat Bucket List #1
“The very best thing about thesepaintings, fun or serious, art or not, lies inthe doing. Pushing paint around, playingwith color, … even cleaning my brushesprovides great physical therapy. Andtrying to give voice to my chaoticthoughts is turning out to be the bestpsychological and spiritual therapy…”
Michael Boughero Michael Bougher, a former project control systems designer, received the diagnosis of ALS in July 1998.o With progression of disease, he became completely paralyzed from the neck down, and was connected to the ventilator.o After being inspired by the Digital Photo-Realist Artist Bert Monroy, he started occupying himself with digital painting. • http://mikebougher.com/ • Bougher M. Reasons why I am grateful to ALS. http://www.alsusa.org/publications/als/als13_10.html. • Quitero A. http://alsn.mda.org/article/equipment-corner-june- 2007
Michael Boughero The paintings have taken from 8-200 hours a piece to complete.o Initially with the aid of computer advanced technology, he used his shoulder and arms and later on, the paintings were created by movements of the head.
“..I’ve learned that even something as devastating as ALS can’t crush the human spirit unless you let it.”
“…It occurred to me that an ALS diagnosis wasnot the end of my life. I realized that if I got afeeding tube and a ventilator, I could live a lotlonger, but quality of life would be an issue. Imust surrender to that which I had no control(my body’s deterioration) and begin to build onthat which still had great growth potential (mymind and spirituality). I could spiral downwardinto misery, or use my circumstances as acatalyst for mental and spiritual expansion. Ihad a choice !”
Ben Coheno Ben Cohen was a 46 year-old American citizen, living in Japan.o He was a distinguished potter.o In 1989 he was diagnosed as suffering from ALS.o Since he could move only his eyes and mouth, he designed his artwork on the computer and his wife, Reiko served as his hands.o After his death, Reiko was determined to continue her husband’s legacy and continued with his artwork, making pottery. Norris FH, Mitsumoto H. (1991) Amyotrophic Lateral Sclerosis: A Comprehensive Guide to Management. New York: Demos Publications
Tony Quan Tempt Oneo Tony Quan, tag name Tempt One or Tempt1, is an American graffiti artist who began creating in Los Angeles in the early 1980s.o In 2003, at the age of 34 he was diagnosed with ALS and by 2005, he was fully paralyzed and bedridden.o With a special computer software which detects eye movements, he continued with his art with the aim of raising awareness of the disease.o His work was displayed in various exhibitions, and the proceeds from the sales go directly to an ALS foundation. http://estria.blogspot.co.il/2009/10/tempt-one-creates-art-with-only-his.html
Erin Brady Worshamo Erin Brady Worsham is a 44-year-old artist was diagnosed with ALS in 1994.o She creates digital paintings by the eye movements.o Every piece of art takes about 250 hours to create.o In her paintings, she depicts her reactions and feelings regarding her new situation. http://www.incrediblepeople.com/cover_story.htm
Erin Worsham’s “Breathtaking Metamorphosis” depicts her new life with a ventilator.Worsham’s “BigWheels Keep onTurning” treats us to asurprising perspective.
In Worsham’s “Mind, Body, Spirit” her wheelchairnearly fades away into a vibrant background of colorand form – just as it should.
“Because I can no longer spontaneously talk to people, my artwork has become a means of communicating my thoughts and feelings” “In addition, it identifies me as an artist, rather than an ALS patient. Many people look at my paralyzed body and think there’s nothing going on inside. My art shouts to the world that I am very much alive and kicking within! Most of all, art gives my life focus and purpose.”Kathy Wechsler K. The artist inside. http://alsn.mda.org/article/artist-inside
Working with Arts as Personal Metaphors in ALS patients Expressive Arts TherapyWhalen D. Meeting your metaphor: The use of the arts and theimagination with dying persons. In: RCP Magniant . Art Therapywith Older Adults: A Sourcebook. Springfield: Charles C ThomasPublishers
Person Creating his Own Metaphoro Norm, a painter and sculptor all his life, was diagnosed with ALS.o He directed a group of artist friends to cut down a living apple tree from his backyard, strip off the bark, and lay it down on the floor of the studio.o The recumbent shape was decorated with plaster models of motor neurons that were breaking apart.o In this installation, he and his family and fellow artists mourned their collective losses.
Rita - Flamingoo Rita, who in a state government, was diagnosed with ALS.o During a group expressive arts session, Rita chose the flamingo as an animal she felt attracted to.o She liked how flamingos could stand in the mud and yet at the same time be high above everything, an image of being immersed in the “mud” of ALS, yet able to maintain a healthy distance, a longer view that helped put things into perspective.
o Rita maintained the “flamingo essence” until her death.o Rita’s metaphor - the flamingo - became a window into her “way” of copying with the disease.o A way that was both realistic, manifested by her early decision to have a feeding tube and accepting adaptive technology, and at the same time imaginative, a touch of riding high above on the long legs of the fairy tale.
The House as a Metaphoro Eileen, a 52 years-old woman with ALS, was treated in a hospice.o During an art therapy session she drew a house, a square with a triangular roof and three windows: two upstairs and one downstairs. Near the house she drew a garden.o She spoke to the therapist about the house she had to leave, explaining that she felt that the house was now empty and cold, and that the garden was not taken care of. She then drew curtains in the downstairs window so that people on the outside would think that life inside was continuing as usual. Coote J. (1998). Getting started, Introducing the art therapy service and the individual’s first experiences. In: M. Pratt & M.J.M. Wood Art therapy in Palliative Care. The Creative Response. London: Routlege.
The House as a Metaphoro This picture was a metaphor of Eileen herself. She told the therapist that none of her family was able to acknowledge her illness and imminent death and refused to talk about it. Like the house with the curtains drawn, she had been unable to let anyone outside know what was going on inside.
Rosemaryo Rosemary, who had recently been diagnosed with ALS, had expressed a wish to “paint her feelings”o She communicated by an electronic writer.o During art therapy sessions she painted various images expressing her thoughts and reactions to the changes in her life.o Since she had lost the ability to speak, her paintings became her “voice”. Wood M.J.M. (2010)The contribution of art therapy to palliative medicine. In: Hanks G et al.(Eds). Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press,pp.243-9.
Rosemary• Soon afterward, she began painting alone in her room. The paintings depicted gardens resembling images from the “Arabian Nights”.• Those pictures were a source of pride, and staff and other patients would come to see them.• With disease progression and deterioration in her functioning, fear, grief, anger, and despair appeared in the images.• Expressing her feelings through art helped her cope with the disease.
Working with an artist-client at the end of lifeo Lisa Schaewe, an artist and art therapist, describes the case of Roland, an artist who had been diagnosed with ALS.o Lisa met Roland near the end of his life.o Roland had previously declined most of the assistance and services offered to him.o Lisa conducted with him an in-depth dialogue about art and the role and meaning of art in an artist’s life.o Lisa describes how providing an opportunity to make contact with art materials can open a door to communication. Schaewe L. Some kind of artist. Art Therapy: Journal of the American Art Therapy Association 2011;28:37-8.
“He once mentioned the modeling clay he used in the earlystages of developing a sculpture. I brought a lump of theclay……..I held it close to his face so he could take in thefamiliar scent. I pressed the clay firmly into his palm andwrapped his finger about it tightly……It was the last time I sawhim. When I returned a few days later, the nurse told me thathe had passed away that night, the clay still in his hand.”
Quality of life of patients with ALSSeveral studies have demonstrated the quality of lifein patients with ALS does not correlate with measuresof physical function, and does not decline over timedespite progression of the disease.Psychological, existential, religious, and spiritualfactors and social support systems play a major role.Some patients with ALS, despite being connected tothe ventilator and dependent on others, report a highquality of life.Family members and other caregivers frequentlyunderestimate the quality of life of the patients. Simmons Z. The Neurologist 2005;5:257. Lule D et al. Dtsch Arztebl Int 2008; 105(23): 397–403
In conclusionVisual art therapy can be used in ALS patients alongthe continuum of disease.Therapy can apply either “Low Tech-High Touch”modalities or sophisticated technology-assisteddevices.It may be combined with other forms of arttherapy, such as creative writing and music therapy.The form and content of therapy should be tailored tothe specific patient according to his previous andcurrent interests and the stage of the disease.Increasing the quality of life of patients should be themajor goal.
Purpose in Life FineMotor MeaningSkills Art Therapy in ALS Assistive Cognition Technology