bringing her a meal, she would not have eaten that night.) In another facility she witnessed horrible screams, neglect and abuse. In such a place, water and ice were precious commodities and had to be requested with care, so as not to offend those upon whom she depended. Because of these indignities, and the lack of understanding, there is much terror with illness: great isolation in a society that feels that such matters are too expensive, a personal responsibility or (blame the victim) the result of negative thinking, hypochondria or personal choice.
Her employer, the Los Angeles Unified School District, was no better; withholding her salary and donated sick leave on technicalities that took weeks to sort out, applying stressors to a situation in which they were clearly contraindicated. LAUSD has a horrid track record when it comes to the human rights of its employees with disabilities and illness, often forcing dedicated educators into retirement rather than providing support and accommodations. I was relieved when she opted to retire; an inevitable decision under the circumstances, though I believe for her it was, as it is for many, a harbinger of defeat.
For someone so ill, the smallest tasks take courage: making a phone call, going out to lunch, telling someone “now isn’t a good time.” Lying in bed is tedious, solitary work. To have to measure life in such small accomplishments; such glaring simplicities, can be daunting. I never saw her fall into bitterness or resentment for what was being taken from her. Though we did visit despair together and we were both overwhelmed with the reactions our respective illnesses evoked: many of the same people who have resented my disability, pitied her. Two sides of the same coin: the expectations of behavior, the obligation of the one afflicted to make the rest of society comfortable, the insistence of others that they know what is best –without consideration or consultation-- the loneliness that comes when one is reduced to one’s experience without the opportunity to define it for oneself. Always compassionate; on her deathbed, racked with pain and gasping for breath, she said she thought it had been worse for me. Under the circumstances, her empathy was exceedingly generous. But such comparisons are useless. Hierarchies of suffering only serve to divide. It is what we share that binds us.
A few weeks before she died she told me “I’m alive today, that’s what matters.” And while I do believe that in her final hours she came to make peace with death’s impending inevitability, if she could have stayed with us, she would have, regardless of the terms. On one visit, only days before Barbara died, Melissa, one of her closest friends, offered to bring food from a local deli. At every suggestion: macaroni and cheese, Asian chicken salad, mixed sliced fruit, gelato, green bean soup, Barbara became more animated with the anticipation of simple sensory pleasure.
She didn’t want to leave us. She was waiting for her miracle, and like so many, blamed herself when it did not materialize, that perhaps she had not being positive enough. There is a huge burden placed on people who are ill, to will themselves to wellness. And while this may be possible for some, it is an unfair, cruel expectation for most; a spiritual tyranny, an enforced façade. One cannot be positive about harsh realities and still be honest.
In many cases, it is not the soul that leaves the body but the body that leaves the soul. A strong six-foot tall woman, she couldn’t have weighed more than 80 pounds when she died. The cancer had metastasized to many of her organs. She was in constant, systemic pain.
Barbara had a softness, often concealing her deeper qualities. While to many she was “sweet Barbara” to those of us who loved her, this accolade negated her depth, vision and power. It was her courage and wisdom that allowed for our friendship. “I’m so grateful that Andy connected us,” she said to me, one of the last times we spoke, the week she died.
We try to comfort ourselves in platitudes -- “it was her time. “ – “She was ready to go.” But the truth is that she held on to life fiercely, and we have lost her. Barbara was love and work and art and passion. And she’s gone.
We meet so few people in our lives with whom we can share our journeys. I admire so profoundly, her integrity, her hope, her ability to love. I wish we had had more time. I will miss her very, very much.