A friend asked me recently how I would cope if the disabling effects of my illness were permanent. The question threw me because I'd assumed I would get better and walk again. I considered it for a while. Then I told her, "I'll adjust and move on."
Accepting the hand we're dealt -- and playing it -- sounds trite. Some people are bound to want to fold. Others are likely to demand a new hand or at least to retrieve the old one. But the savagery of catastrophic illness is in how it acts like an earthquake in your life. There is the sudden shattering realization that death is no longer an abstract (as in "we all die someday"), but a very real and oppressively near probability. And there are the terrifying aftershocks: Illness, disability, dependency, pain. How can we maintain a sense of hope with such tectonic shifts in our daily mooring? How do we cope with life in the face of death?
Despite the fact that people have been dying throughout history, the science of death and dying is relatively new. In the early '70s, Dr. Elizabeth Kübler-Ross offered a pioneering explanation of what we all understand implicity: Dying is a process. Kübler-Ross described the psychological responses to a death-sentence diagnosis ("you have less than a year to live" as opposed to "we all die someday"), prescribing the healthiest as a movement from denial to anger to acceptance.
How do we make such a movement? How to stay sane when death is shadowing us? How to keep fear and, worse, despair, at bay? How do we make the time we have left more rich and full?
None of us will ever forget figure skater Nancy Kerrigan crying, "Why me?" after Tonya Harding's paid thugs kneecapped her. Yet that scene, replayed time and again, became wearing. Our sympathy diminished; soon her raw pain and fear became the stuff of jokes and sniggering. "Get over it. Move on," we said. On the other hand, we admire the struggle of actor Christopher Reeve, paralyzed from the neck down in a 1995 riding accident. He has fought to relearn to breathe on his own in order to speak out publicly about the need for resources to help those facing disabling illness, including AIDS. His is a heroic example of the denial-anger-acceptance movement. Yet can there be any doubt that Reeve, the former Superman, wakes every day wishing it were all a bad dream? That he replays the moment of his fall in his mind, imagining: If only... ?
Replaying the catastrophe leads to madness. We cannot take back our actions, the actions of others or any insidious thing (DDT at the beach resort of our childhood, toxic waste in our backyard, a drunk driver, mutant genes hiding in a chromosome) that has come, unbidden, to fell us, to steal away the extra time we always thought we had. We cannot linger over "If only... " We must pass on to "Now what?"
Now that I have been told death is shadowing me, what do I do?
First, pray. To God, to the universe, to yourself. Pray for healing, for strength and, most important, for hope. The key to coping with catastrophic illness or imminent death is to stay in the present: This day, this hour, this minute. Reliving the past devastates, and contemplating the future only terrifies. Consider who you are now. I know I will never again be the vital woman who worked 18 hours a day and could still go out dancing (I may never dance -- or walk -- again, period).
What I have learned from staring death in the face is not how much I've lost, but how much I still have. Death puts life into acute focus. I choose my battles more carefully, use my limited energy more wisely, give of myself more freely than when I believed I had all the time in the world. I have little time for pettiness and self-pity -- my own or anyone else's. As life has narrowed, it has become more special.
Think about the present in which you are still alive, not the past in which you weren't sick or the future in which you may not exist at all. Recognize that living in the moment is not about recklessness, but about redemption; about living the end of your life (whether it's a few months or a few years) with joy and care.
There are many ways of dying. We can leave this life cursing our fate and everyone around us, or we can leave with our hearts full of the love our bodies can no longer sustain. Part of who we are is what lives after us. A serene spirit sends a message of hope to everyone struggling to live and die with grace.