“Locked-in syndrome” revisited

Three years ago I posted a series of reflections — The Eye of the Beholder, Paralysis, and Father Figures —  on The Diving Bell and The Butterfly, an autobiographical work by Jean-Dominique Bauby, a victim of locked-in syndrome.  At 43 years of age, Bauby suffered a stroke which left him completely and permanently paralyzed; the only motor function he retained was the ability to blink his left eye in response to questions posed by his therapist.  Bauby succumbed to his illness shortly after his book was published.

My poem “Locked-in Syndrome,” a tribute to Jean-Dominique Bauby, appeared in the April/May 2008 issue of the American Journal of Hospice and Palliative Medicine.

Today the British Medical Journal published a new study which validates the quality of life experienced by a significant number of patients with locked-in syndrome.

In this study a group of locked-in syndrome patients were asked to assess their global subjective well-being using a comparative scale to rate the best period in their lives before developing LIS with their worst period ever.  Forty-seven patients expressed overall happiness, while 18 expressed unhappiness.  A longer time in LIS correlated with happiness.

Investigators conclude that “recently affected LIS patients who wish to die should be assured that there is a high chance they will regain a happy meaningful life. End-of-life decisions, including euthanasia, should not be avoided, but a moratorium to allow a steady state to be reached should be proposed.”

The authors stress the need for additional therapeutic interventions directed at mobility, recreational activities and anxiolytic therapy in LIS patients.

It appears that even when our physical state is compromised, many of us are capable of enjoying a rich and extensive life of the mind.

Readers interested in accessing my poem “Locked-in Syndrome” may do so by clicking on the link below.

Locked-in Syndrome 151


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