Magazine article Tikkun

Living with Illness in America

Magazine article Tikkun

Living with Illness in America

Article excerpt

I'm sick, chronically sick, recovering (I hope) from a long-time prescription drug addiction that I didn't know I had. To even write these words for publication makes me hesitate: Am I facing disgrace by doing so?

Will my sense of power in the world or my charisma or sex appeal or worthiness of recognition as still in community be fatally compromised? In saying publicly that I'm sick, I am stating a truth that I am afraid will lead others to feel sorry for me, pity me, subtly withdraw from me, "wonder how I'm doing" but no longer engage with me as a vital participant in their lives, or in life.

This is the secret of living with chronic illness, and it's worse than the illness. It leads us, unnecessarily, to lead two lives: one drawn into the self and preoccupied with the illness and its effects, the other presenting a good face to the "outside world"-faking as much normalcy and strength as possible so as not to face a hemorrhage of identity. Was I strong enough this morning to have been a good father for my seven-year old son Sam or was I a subtle disappointment? Should I tell him I need to lie down this afternoon and hope so much that he'll just playfully join me, or should I pull it together and play catch in the park like a real father is supposed to do, and put that spring in my step whether it wants to be there or not? If my fatigue or anxiety shows in my speech, will the listeners to my talk be unmoved by my words or otherwise disappointed by my surprising inadequacy? Or can I "summon the strength" to be the me they expect and shut down the voice inside that so resists that summoning of outer power, objecting to my splitting the self that I actually am?

Yet both sides of this split are unnecessary. The preoccupation with inner symptoms results mainly (if you're not facing death or severe pain) from how it may affect carrying forward the outer self to meet and satisfy the expectations of others that you are well. The false lifting-up of the outer self does not reflect a true inability to engage and participate fully in the world but reflects our fear that revealing the effects of the illness will lead others to think that we are not already so engaged.

So instead of teaching with my illness, whose effects are unpredictable from day to day, I cancelled my contract law class for the fall. This would have been completely unnecessary if I could have taught as a sick person, openly revealing the effects of insomnia, anxiety, adrenaline imbalances and other symptoms, instead of feeling I had to teach in spite of being sick and cover the symptoms to the extent that they might arise. …

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