Life with my son Colin brings friends back to me—friends who taught me things it took Colin’s autism to wrench into sharper focus. The roots of preparation run deep. My past, if I let it, comes back to show me things I missed the first time around.
In 1990, my friend Nickle Lauritzen was diagnosed with Motor Neuron Disease, a rare form of Muscular Dystrophy, similar to Lou Gehrig’s Disease, a terminal disease that works inward from the extremities—first the hands, then feet, legs, and arms—muscle strength and control gradually failing until you fight for every breath and finally suffocate. Nickle would describe her predicament in just such harsh terms. She wanted the bare truth out there where she could keep an eye on it. “I know how I’m going to die,” she told me soon after we met, before I really understood her illness or knew her well at all. “I will wake up one moment unable to take another breath,” she said. “And that will be that.”
She would live with the disease ten years, all the time knowing what kind of death approached, before dying on September 11, 2000, a date she would no doubt comment on if she could make an appearance now. “I guess I exited just in time,” she might say. Or, “I was there to greet them, terrorists and all.”
I claim the right, perhaps unfairly, to conjecture such comments, since Nickle and I spent many hours—far too many—talking about death and the afterlife. I told her once, “We really should try to talk about something besides death.”
“I suppose you’re right,” she said. But then ten minutes later we were at it again.
Perhaps because she recognized more than most how her death rushed headlong to meet her, Nickle focused on that simultaneous moment of departure and arrival, when you would move in a breath from one world to another.
I no longer remember who said what or where the ideas came from. We put our heads together and imagined: The moment of dying would be like letting go of a rope, expecting to fall, but then there would be no sensation of falling, only a kind of inner wind, as if you crossed the universe in that instant without moving a muscle, a narcotic drifting relief. And you would ask yourself: Why did I hold tight to that rope for so long?
We imagined that in the next world we could take shape in our bodies at any age or return to any time of our lives. That we could hold our own parents in our arms as infants or set aside everything else for 30 years—once in the whirl of eternity, years may as well be minutes—and grow up with our own children, matching our age to theirs. After all, what’s the rush? Everything can happen in an hour or a thousand years and you can hardly tell the difference.
In the afterlife, which Nickle would say is right now, right here, all around us, you turn right where you have always turned left and you discover a part of town you’ve never seen before, a stretch of buildings with gold columns and towering ceilings, or a residential development built around a blue lake, fish visible under the surface. Or you enter your office building, get on the elevator as you do every day, but the doors open on a floor you’ve never seen before, and you step off into this other world.
The plain truth for me now, right now, a dozen years after her death, is that Nickle does have an afterlife. I think of her every day. In her whirling eternity I doubt she has time to think of me once in a hundred days, or a thousand. I was not her husband or brother or even short-time boyfriend, but I was a friend and she left an indelible impression on me.
So why does Colin’s autism bring her back? One reason is that she is the one person that I would like most to ask about what to do. How can I be more patient? How can I choose to laugh instead of rage against this? How can I give this boy the unconditional regard he deserves? She had some answers back when, and she must know even more now. If only we could talk.
And yet in a way we are.
When I first met Nickle, she was 37, three years into the disease. She was thin, her artist’s hands already crippled, fingers curled to her palms, yet she still walked without braces, and she was beautiful, with a deadly sharp wit, and a broad circle of friends who also became my friends while she lived and for a few years after.
If Nickle were here now, I think more than anything she would keep me laughing and help me enjoy my son’s unfettered joy, his unconscious flaunting of expectation, his lack of self-consciousness. She would say: Celebrate. Laugh. Why not? Nickle was ready to accept people as they were, without the usual masks and pretensions. She wanted things out in the open from the start and this liberated the people around her and was part of what made so many fiercely loyal to her. I’m confident she would have embraced my son’s knocking over of things, his unfiltered outbursts, even his sneezing in her face with tranquil acceptance. So why shouldn’t I?
Nickle had a wicked love for catching people being themselves, not out of meanness, but insatiable curiosity. Like the night she positioned a few of her life-sized puppets in her apartment entryway to scare me, and I let loose a string of cursing before I saw her leaning against the doorframe.
She smiled at me more out of admiration than rebuke: “I didn’t know you had it in you,” she said. She was delighted.
Or the time she hid under the dining room table at her parent’s house, putting her head up through an opening so when the dinner guests lifted the lid off the ham platter, there was Nickle’s head surrounded by caramelized onions and boiled carrots. She even had an apple in her mouth. The guests gasped and leapt up from their chairs, one girl fell over backwards. So the story was told to me, along of dozens of others like it.
Nickle’s disease pursued her implacably, and her strength and capacity steadily declined, but not faster than she was able to adapt. When she could no longer sculpt and paint or write with her hands, she found ways to use computers—speech recognition software, a mouse attached to her arm which she moved by moving her shoulder. Within six months of her death, he had a gallery exhibit of new work, perhaps some of her best.
The later paintings are more primitive, only the most essential lines and shadows, yet full of irony and the stoic humor I remember about her. In one painting, Nickle lampoons her emaciated body and in another shows two very large women in a wild dance.
In an earlier painting before the disease crippled her hands, an angel with rainbow-colored wings appears before an astonished woman who clutches her clothes to her breast, as if she had been caught naked just out of the bath. The angel looms above her, the tips of its wings touching the ceiling of the room. The angel does not float or fly by supernatural means, but stands on a three-legged stool. Classic Nickle.
In another painting the sun, moon, and stars appear in the sky all at once. The sky looks like a river of layered colors, or a woven rug. An angel, who I’ll always think of as Nickle herself, walks effortlessly through the air, the landscape far below. It’s an alternate universe: the clouds are dark red, the stars smaller versions of the sun.
Nickle once visited me at a new apartment and we talked while I unpacked hundreds of books and CDs, these distractions of mine, and I talked on about whatever music had taken me at the moment, Pearl Jam or Peter Gabriel or Joni Mitchell. She listened patiently, sitting there on the hardwood floor next to her wheelchair, but I could soon tell she was ready for some real talk. Not just talk about death, but belief and derailed relationships and spiritual crises, the kind of crushing doubts and mistakes that leave you in the cold black box of yourself. The point is Nickle was not one for small talk or safe talk. Instead of the movies or weather, it was: “Why are we still virgins in our late thirties, you know, and what does that really say about us?” Nickle wanted revelation. She wanted to break through the surface. After all, time was short.
This may be what I miss more than anything is being to talk to her about anything at all, guard down, filters off, no eggshells to step over. Without knowing it, my son Colin has this same disarming gift—driving straight to the heart of things. One time I cut my hand while washing the dishes and swore like a sailor. He called out from the next room, “Hey, Knock it off. What’s all the hollering about?” Never mind the fact that he screams bloody murder when he gets a tiny scrape on his knee. That’s one thing, this is another. I show him my bleeding finger. “So get a Band-Aid,” he says. “You’re thinking with your butt, dad.” Instead of being angry at such moments, the anger drains away, at least when I have my wits about me. There’s no arguing with the straight truth when it’s coming from a nine-year old autist or talented artist dying of Lou Gehrig’s disease.
I visited Nickle just after returning from my honeymoon and found myself confessing to her about how my wife and I had both contracted severe bladder infections and visited the ER three times. I told her about the petty disappointments and flare ups we had in those first days, exhausted by wedding events in Portland, Oregon, Salt Lake City, and Pittsburgh all in the same week, even though we had rarely argued before or since. Nickle took all this in with her familiar look of acceptance, smiling up at me from the hospital bed set up in her living room, which she now called her “dying room.” By this time she was in her last six months, fed from a tube, breathing oxygen through a mask, unable to talk above a whisper.
Nickle’s husband Kent, who took care of her every need and was by her side day and night, had only stepped outside for few minutes because I was there to watch her. And so on I went with the honeymoon war stories, until I caught myself short and said, “I probably shouldn’t be telling you this.”
“Why not?” she said. “Your secret’s safe with me.”
Nickle was never one-sided about such exchanges and it was no different this time. She asked me to lift the oxygen mask away from her face and she told me in labored whispers, taking a breath between each word, how she had expected to be half asleep when she reached this final stage, but instead she was alert to every breath and felt like she was running a marathon. And there were moments in the night when Kent had fallen asleep on the single bed next to the hospital bed when she could feel her heart race in what she thought was panic until she realized it was just what she was waiting for, a door opening to a brave new world.
On the day before Nickle died, I am among a small group of friends at her home. Nickle is in her final hours, emaciated, unable to speak, her face hidden behind the oxygen mask, a young woman made ancient by a rare disease. Nickle has a moment of panic and asks to be alone with her husband Kent. We, the friends, pace in the kitchen utterly helpless, each of us waiting for our moment to say goodbye to her. Soon Kent calms her and one by one we go to the next room. When my turn comes, I sit close to Nickle, pulling the chair right next to her bed. Nickle is struggling for each breath. The time we have talked about so many times has come. She is holding the rope, waiting for the right moment to let go. My throat tight with emotion, I can only whisper: “You’re going to be all right. There is something more, something far better awaits you. I know it. I know it!” And as I say these words, I am overcome, to the point of tears, with a visceral certainty that what I have said is true. Lack of evidence, be damned.
What I learned from Nickle and what I continue to learn from Colin is that I am most certain about the very things many people are quick to say can’t be known. That what happens in this world, no matter how difficult, is not a cruel joke, that ultimate justice prevails, healing for all is in the wings. That there is an afterlife, and that what we do as individuals, no matter how small or unnoticed, matters.