Another View of Narcolepsy

Narcolepsy is a complex condition with biomedical, psychological, social and, I believe, important spiritual dimensions. An integrative approach invites us to reconsider narcolepsy from a broader perspective. It encourages us incorporate key biomedical knowledge into a larger psychosocial and even mythic framework. Since narcolepsy is a lifelong condition, it also calls upon us to consider questions of deeper, personal meaning we might attribute to our condition.

Among the key symptoms people with narcolepsy encounter are chronic insomnia, cataplexy and intensified dreaming. Fortunately, our understanding of insomnia and techniques for managing it has been expanding dramatically. I believe that overexposure to light at night is the single most important overlooked environmental factor in the contemporary insomnia epidemic. Newly emerging “blue blocking” technology that can facilitate natural increases in melatonin open new avenues for addressing poor nighttime sleep. Likewise, I feel that the psychospiritual process of surrender or letting go into sleep and dreams is a most critical overlooked personal factor in treating insomnia.

Cataplexy is one of the most challenging symptoms of narcolepsy. Because managing the symptoms of cataplexy is essential to living a normal life, our most common treatment response involves symptom suppressive medication. I have long felt, however, that it is also useful to be open to a more mindful understanding of the subjective experiences associated with cataplexy. It is helpful to understand that cataplexy is not so much a “sleep attack” as it is an intrusion of features of REM/dreaming into waking consciousness. Cataplexy, then, is more a dream attack. But even seeing it as an attack introduces a prejudice that may obscure our deeper understanding. Cataplexy, ultimately represents a heightened permeability between the waking world and the world of dreams. If we recognize the creative and spiritual potential of dreaming, we may be able to draw something positive even from cataplexy.

I would like to encourage a greater mindfulness of these experiences and a sharing of what we find. To do this, we must begin by depathologizing cataplexy. What might we discover if we kept our spirits strong when our muscles weaken? What might we learn about where cataplexy takes us if we were a bit less concerned about what it removes us from? In the past, I have looked at cataplexy in terms of “reluctant shamanism.” Shamanic practices involve intentional access of the dream world while awake to facilitate healing.

I am interested in continuing the exploration of the interface of narcolepsy and spirituality. The renowned Sufi poet, Rumi, for example, emphasizes night, sleep and deep surrender in his work. When Rumi’s translator Coleman Barks was asked to describe the poet’s concept of the divine, he said it was “the impulse to laugh.” Laughter, of course, is one of the most common triggers of cataplexy. What has been referred to as “holy laughter” in certain evangelical movements results in a spontaneous loss of muscle tone that looks much like cataplexy. Finally, the contemporary myth of the Superman might offer some teaching about cataplexy, as well. This idealized image of super human power has a dark, powerless side. When exposed to kryptonite, of course, Superman’s strength is suddenly sapped, he buckles and drops to the ground. Sound familiar? Superman’s reaction to kryptonite—an element from his planet of origin— is very reminiscent of cataplexy.

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