My father has Alzheimer's. It keeps him from saying everything he thinks, sometimes in mid-sentence, but we still get occasional puns and stories that our hearts gobble like truffles. Often his deepest communication, though, is non-verbal: the smile that says, "I know you" from across the room. It is enough.
My three-year-old has Down syndrome. When the rest of the world hears, "Ahhh. Rahh!" I know it means, "the dogs next door should come out so I can bark at them." Jumping up and down at the end of the driveway is his way of saying, "the bus is late and I want to go to school." Most of his communication is non-verbal; his actual words strike the heart. He says "IRUVYOU" at bedtime. He nods his head when we repeat it. It may never get clearer, but it's there and he means it with his whole heart. It is enough.
My mother walks the via dolorosa with my dad, playing the role of Veronica and sometimes Simon the Cyrene as she protects his dignity, provides the care he needs, and seeks to keep up his spirit, and hers. It is harder than hard to watch as the Harvard Law School alum she loves struggles with reading. The whole of this disease is a scourge. He still ends every day with "I love you," but the day is coming when those three words won't be spoken. Alzheimer's is an ever-present and silent cross of knowing that what is today, might not be tomorrow.
My son will one day reach his "plateau" as the experts call it. And then, what? Sometimes, my worries about Trisomy 21 bite at my heart. Will he speak so that others can understand? Graduate with a G.E.D? Get a job? Questions about an uncertain future can crowd out the joy of noticing that Paul dances to every song on the radio with equal vigor. It is a silent cross of "what ifs."
The walk to the cross is one giant lesson on how to love well. We discover how truly fallen we are by discerning how many ways we've put limitations on others, for the sake of our hearts. Our bodies change and grow and get sick and tired. This shouldn't matter, but absent love, it does. This world places much too much value on the condition of the body as proof of the value of the individual; it considers people like my father (now that his condition has worsened) and my son (since before birth) as unnecessary drains on society—as less worthy of attention, medical care, or love. Some even write about mercy-killing and euthanasia with nary a quibble about the reality of what the casual disposal of human beings does to society and the soul. If we can only love when it demands no sacrifice, then we do not love. What a hell on Earth we face if people only matter for what they can do—a society of takers, angry that no one and nothing can fill our voids.
Because Alzheimer's can make my father absent, we are forced to be more present. When he sings snips of "The Wild Rover" and other favorites, those songs take on greater meaning. Watching him remember the rosary, the rhythms of the mass even as his brain is forgetting, these things stay in our hearts. While it is a long hard process, this dying, if we were impatient with death, we would forfeit time loving him, time we could be singing.
Similarly, at mass no one sings the Alleluia like my son. When the cantor begins, he chimes in. Sometimes he doesn't finish when she does and the church echoes with his joy. He's singing the Alleluia the way we're supposed to pray. His song-shy siblings sometimes join his choir. In his absence, fewer Alleluias would ring out.
The world wants to sell us life without suffering. Our culture worships the perfect, the sterile, the eternally flawless unreal vision of beauty and youth, power and riches; a world joyless and song free. In utopia, where there are no burdens, there are also no triumphs of love breaking over and soothing the hardness of life; where there are no challenges, there is no learning, no growing; there are no victories.
Suffering is always an opportunity for grace but only after it has been picked up and embraced. The real goal of life is to keep expanding the heart, to grow it outward, for the life of the world.
Most of us need to wrestle with the cross to remember that we are called to love others for their simple being, not for what they can bring us. In caring for the dying and suffering, we begin to understand our own capacities for love.
When we try to eliminate suffering by eliminating those who suffer, we thwart our own potential to be surprised by the depths of love and how profoundly well we swim in them.
5/9/2012 4:00:00 AM