Whole Life Times: Lean In

November 2005 | BackWords

Lean In

Sometimes the best way to deal with pain is to allow it to engulf you

By Terri Mandell-Campfield

I’m the mother of a terminally ill teenage boy. Over my last five years as round-the-clock caregiver, meditation student and leader of a worldwide support group for families with disabled children, my days have been filled with the heartbreak and exhaustion one would expect from the experience of slowly losing a child—but they also have been infused with wonder, gratitude and beauty. It’s impossible to have an experience like this without waking up to a whole new way of understanding life, death and disability. Among other things, it asks the question: “Are the disabled and their caregivers merely ill-fated victims of circumstance, or is their path a more noble one, an opportunity to learn—and to teach—acceptance, peace and unconditional love?”

My son Danny began showing an array of baffling physical and cognitive symptoms at the age of eight. Prior to that he’d been a perfectly normal kid who loved to ride bikes, play video games, swim and ski. At age 10 he was diagnosed with a rare, incurable disorder called Metachromatic Leuko- dystrophy (MLD), a progressively degenerative disease that would slowly cause him to lose all of his physical abilities, ultimately leading to death after five to 10 years. We are now at the six-year mark, and he’s in a wheelchair, requiring total care with feeding, dressing, bathing and positioning. He can no longer talk, and he’s been incontinent since he was nine. We’ve chosen not to follow an aggressive life-extension course, and we expect he’ll live perhaps another year.

Your response to this is, no doubt, to feel unimaginable sadness and great compassion. You’re probably thinking, “It’s tragic, it’s unthinkably horrible. It’s annihilating. It’s unfair.” And yes, all of the above is true. But that’s not the only truth. There is another level of truth, a level at which this experience is a miracle, a gift and a path to enlightenment. My worst fears have already come true—anything after this is a piece of cake. I am left with nothing but acceptance of what is, and free choice as to how I want to experience it. Imagine living as if the worst possible things have already happened and there’s nothing left to dread. And realizing that there are no good or bad experiences, no good or bad people, no good, no bad, period. Everything that happens just happens. Every action is part of a series of related actions, all for a purpose, a million purposes, filled with lessons for growth and possibilities for expanding our views and shedding our limitations as we move toward gentle acceptance that these experiences are tools to teach us how to live in a state of love.

My spiritual outlook is, in essence, Buddhist, and here I will quote from one of my favorite Buddhist teachers, Pema Chodron. She makes four points that speak so clearly to me that I quote them frequently and have them taped to the wall above my desk. These points describe an enlightened view of tragedy and loss and give guidelines for making the most of our experience here on earth:

1. We use our painful situations to wake us rather than put us to sleep.
2. We invite in what we would usually try to avoid.
3. We realize that only to the extent to which we expose ourselves to annihilation can that which is indestructible be found in us.
4. We learn that bad news, pain, fear, loss and tragedy are actually very clear moments that teach us to lean in and feel rather than to back away from feeling and experiencing. And in that sense, tragedy can be seen as good news, not bad.

Lean in. What a beautiful expression. You lean into what torments you and ask it to engulf you. You receive it in all of its terrible entirety. And you find that it leads you to a whole set of amazing possibilities, things you might never have imagined. Even the worst imaginable scenario—you lose your job and your house, or your teenage daughter dies of a drug overdose, or your only child gets diagnosed with a degenerative illness and won’t live past the age of 15—you lean into these things and you are ultimately led to that place of fearlessness. And in that place there is no bad news. There are no tragedies. Change—whether subtle or catastrophic—is what leads us to the next step.

My son is my greatest gift and the most important teacher I’ve ever had. He’s taught me how to love in a way that most parents will never experience. I don’t care about his achievements, his social status or his future endeavors. There will be no future endeavors, at least not in the physical world. So what I’m left with is a relationship with another entity who is totally in the present, and that is the greatest honor imaginable. I’m not the parent; he’s not the child. We are two beings incarnated on earth together and we are on a path. Identities such as mother or son don’t matter. He’s given me an opportunity to live purely on a soul level with another human being, egoless, without conflict, without expectation, without attachment.

And ultimately, he is teaching me how to love our relationship deeply and then to let go, knowing that the connection never truly ends, it only changes form.

Terri Mandell-Campfield has been a travel journalist since 1987, shifting from the honeymoon market to the family market after the birth of her son. When his life-threatening illness was diagnosed at age 9, Terri began writing exclusively about disability and has published several articles about travel for disabled children.

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