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.
See more of Nickle’s paintings from various stages in her career on a web site her niece Rachel created with her before she died.
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.
What an amazing gift you received from your friend, Nickle. She taught you things you could learn in no other way. Such insight is rare in a human being and the ability to communicate it to another person is rarer still.
If your interaction with Colin has some of the same effects on your way of thinking as your friendship with Nickle provided, you are truly blessed to have him as a son.
We love you and Colin deeply and rejoice that you have each other.
With Love to both of you,
Yes. Blessed on both counts. Thank you for your kind words.
I believe that your friend, Nickle’s spirit lives on. Such a nice tribute to both Nickle and Colin. I know that Nickle is looking at you and so proud of you and your reaching out to other’s with this awesome blog and pictures. So colorful and warm. Thank you for sharing.
Nickle was one of a kind. Even when she was having early trouble with her hands, she would still steer her old yellow convertable with her wrists. (Don’t tell the Motor Vehicles Division.) She’d usually have on some kind of knit hat and scarf (even in the summer) and one of those whirlygigs spinning on the dashboard. The more sideways looks she got, the happier she was.
Thanks for awesome informative posting, god bless !
So glad you enjoyed it.
overwhelming! some person she was..wow..what a spirited soul.
your writing made me teary yet left me with some trace of your courage.
I appreciate your comment. I saw your post about the loss of a close friend. We’re all having these experiences. So difficult, but there is healing.
thank you and yes, there is always healing.
Likely THE best Freshly Pressed article I have or will ever read. (Congrats on that!)
Thank you for this beautiful piece. My uncle died of Lou Gehrig’s disease. He did not have the assurances or perspective of life and death you and Nickle shared. Sad to know so many do not.
Much of what you said about life and death resonates with me. I have had some similar thoughts about time in the afterlife – I often wonder if we will get to walk beside ourselves growing up, but knowing the secrets we couldn’t know then. Your other speculations opened up new avenues of thinking for me, making me realize how linear I still am in my thoughts. Truly forward, linear time is a curse we all live under and learning to let go of the rope the greatest blessing.
Thanks again for a wonderful read. I cannot wait to meet Nickle someday!
You’ll love Nickle when you meet her. I like your idea of returning to times in your life, having a chance to relive it with all the perspective you gain over a lifetime. I have dreams quite often when I get a chance to do that. Even the dreams help. Take care.
My dad taught “Human Growth and Development,” and the running joke/truth that our family repeats in certain moments is his famous quote from that class, “You are most likely normal, you just might not be average.” There is a difference between average and normal. If only the candid frank beauty that Nickle showed you could be the average. But at least you can take comfort in that Colin’s comments and outbursts are definitely normal. Peace
I agree with you. The idea of “normal” gets pretty confusing. Sometimes it seems like the last thing you would want to be. Colin does keep us on our toes. His straight talk usually gets right to the heart of things. One night he was still awake when I get home at 11 p.m. He said, “Sorry dad. I didn’t want to be caught sleeping.” Or once when I started to lose patience, he said: “The only thing that will make dad happy is if I move to Timbuktu.” I wouldn’t want him to move for the world, but there’s no hiding your frustration from one of these kids. They just know. Nothing but the real thing–real calm is this case–will do the trick.
If only we could all be so open, transparent and honest ourselves- then this wide open straight-n-narrow manner of your child would feel more comfortable than the typical “beating-around-the-bush” manner most of us practice. 😀 You and your son are lucky.
Thank you. For writing with such beauty and raw honesty. I will be carrying this story with me today, and I know that it will make everything around me look a little different.
I’m glad you found a story here to carry with you. I like the honesty of your blog as well. I will also admit to “writing about myself in the third-person” at times to get a fresh perspective. It can get scary at times, right?
It can, and that’s when I’m grateful for the friends in my life who know how to kick ass in a loving way.
beautiful paintings! and what an amazing woman. straight talking people are the best – they don’t paint things with rose-tinted colours (although with her talent, she surely could paint like that 🙂 ) and it’s refreshing to exchange with those individuals. they brighten life. I certainly believe there is more to life than just what we experience in the human form – sometimes, or maybe anytime, all you need is the proof inside yourself as to how your truth feels.
Agreed. How we know what we know is usually pretty mysterious. And as you say, it usually comes from inside.
What a moving and powerful story. You son is lucky to have you as his dad.
I’m so lucky to have him. I’m glad you enjoyed the story.
Thank goodness for Freshly Pressed. This is an amazing piece of writing and I am so glad I got to read it.
Thank you for your kind words. I don’t know how Freshly Pressed found me. But many thanks to them, too.
Reblogged this on New American Gospel! and commented:
J.W. Thanks for reblogging on New American Gospel!
Steve, I’m so glad I checked the Freshly Pressed section. I am bipolar/PTSD with a daughter who has Asperger’s Sydrome (high-functioning autism, but some of the same directness Colin has) and my husband’s dad died of ALS years before I met Lex.
That creeping, relentless quality of ALS does give rise to pondering the best and worst of life. I do believe in an afterlife, but I lay no claim to describing it, other than an infinite mass of love you get to glom onto = sort of like the Borg, “resistance is futile.”
I wish you the best raising Colin. He sounds like a pistol, and I’ll bet there’s at least a Nickle (or two) in his makeup. Saroyan said you live on in the stories people tell about you, so your friend is assured of all KINDS of “afterlife.” Peace, Amy Barlow Liberatore
Amy, I like the way you describe the afterlife: “an infinite mass of love you get to glom onto.” That’s what it must be like. We’ll all find out one day. You have really been through it with such close ties with both ALS and autism. I wish you all the best. And yes we’ll keep telling Nickle stories.
Beautiful writing. She prepared you for your son, you know…How wonderful.
Yes. I think she did prepare me, whether she realized or not. I think she prepared a lot of others as well.
Amazing story – thank you for your honest sharing of yourself, your great friend, and your son. I am touched.
I, too, found you through Freshly Pressed, and am so glad for it.
I admire your courage. Taking care of Neil.
Nickle has an afterlife, indeed. I’m grateful that you shared your story even as it put tears in my eyes.
Nickle is alive and well in the long view. I’m sorry about the tears. I hope they were the good kind.
Better to feel strong emotions than to feel nothing
I’ve never read a post with the word “afterlife” in it that I liked. But this was beautiful. Kudos for making an old cynic smile.
Granted, the word “afterlife” is a bit suspicious. Happy you liked it this time. There are some friendly weirdos out there, as you say on your blog. True indeed.
Great Post. Thanks for sharing, definitely an interesting read.
Thanks for sharing this.
Thank you. Also, thank good your neurons are itching! So nice posts on your site.
This has absolutely touched me! Amazing story…. Your son is a very lucky!
My wife and I are so lucky to have him.
Thanks for this powerful and moving testament to an extraordinary woman. Her paintings are lovely and your ongoing love for her moves me to tears. Great great post.
Caitlin, I’m happy you enjoyed Nickle’s story. She is remarkable. By the way, my wife has also been captured by an “unintentional life in retail.” Good luck with your new book.
Thanks! She might enjoy Malled….It’s all pretty much all the same.
awesome. amazing. thank you.
Reblogged this on The baby aspirin years and commented:
My friend’s blog post–this one here–was just Freshly Pressed by WordPress. It’s a beautiful read and that’s why I’m sharing it here.
Lisa. Thanks so much for reblogging. You’re generous indeed!
what a touching and well written story, I really loved every minute of it. I am extremely glad it got freshly pressed so I was able to find it. Isn’t it amazing, the lessons we learn, from the connections to the people around us.
Yes. Connections in the past and all around. Thank you for your words. I like your blog and what it has to say about the art of living.
Thank you so much 🙂
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Your final statement, “. . . that what we do as individuals, no matter how small or unnoticed, matters,” captures the sense of hope felt throughout your story, slcantwell25. It is important to believe as you do, and I believe with you. 🙂 All the best!//mm
Always wonderful to find a fellow traveler who believes the small things matter and add up to the big things that matter most of all.
Thank you for sharing this. You’re blessed to have known someone like her.
I do feel blessed for knowing her and so many others. Thanks for your comment.
P.S. I think too much, too.
I think, therefore, I am late.
thank you for sharing that about your friend Nickle… so much about how we live life is about how we allow ourselves to live it
what an amazing person
I’m glad you liked the piece on Nicke Lauritzen. She was a wonder! Enjoy your blog theme, “Live. Love. Laugh.” Appreciate your honesty about dealing with loss. Poetry is precious medicine.
sometimes I’m not sure to comment more than click the ‘like’ button. but this was beautiful. powerful. gut wrenching, reflective, provoking, meaningful. Your story and the words you convey brought me to tears. just, thank you for sharing you.
Thank you for your kind words.
What an incredible story. I needed this right now – thank you!
Enjoy your blog. Your piece on “Fear” rings true. That’s the way most of us experience these tragedies–from a distance, but whether it is one mile away or three thousand we’re changed by it.
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First off I would like to say terrific blog! I had a quick question in which I’d like to ask if you do not mind. I was curious to know how you center yourself and clear your mind before writing. I’ve had
difficulty clearing my thoughts in getting my ideas out.
I do enjoy writing however it just seems like
the first 10 to 15 minutes are generally lost just trying to figure
out how to begin. Any recommendations or tips? Appreciate it!
Full Moon. I think I struggle just as you do. All I can say is I take writer Ron Carlson’s advice and just “stay in my chair” and keep writing until something happens. It may be that what happens in the first 15 minutes (or two hours) isn’t worth much. But almost every time I come away with something that I didn’t understand before. It’s well worth the trouble. Keep at it.
Steve, I just read this post and it is wonderful to know your testimony of things unknown and your connecting Colin and Nickle in a special way. They probably know each other.
I’m so glad you enjoyed it. I love the idea of Colin and Nickle having a little chat before he came down to the crazy place. She might have said, “Keep an eye on that dad of yours!” Thanks for you kind words. Love you.
Friends are friends forever! Love reading your blog. you’re inspiring, you’re a strong woman! I’m nominating you for the versatile blogger’s award, you don’t have to accept, but I hope you do. Here’s a link for more info about the award: http://sheilamariegrimes.com/versatile-blogger-award/
Thank you for your generosity.
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Steve, I’m Nickle’s sister, Harmony and my sister Joy shared this article on Facebook on 4/17/20 (Nickle’s birthday — she would have been 64!). Even though it has been 20 years since my sister died, reading your article breathed life back into her. I could envision her leaning against the door frame of her apartment, I could see her countenance, hear her laugh and the inflection of her voice. Your words poignantly captured the essence of her spirit. And even though it has been nearly 20 years since she died, I wept as I read, as if it was yesterday. I miss my sister – so deeply that it’s impossible to express it in human words. You were such an amazing friend to her and I know it gave her immense comfort to have you there during her final hours. Thank you for reaching into your soul, and sharing my sister with the world. I am deeply touched, and grateful. Take care.
Nickle was my husbands aunt. She passed one year before he and I met. I have seen all of these pictures you posted for the last 20 years and I have heard stories of her from her nieces and nephews who loved her dearly. But I have never felt such a connection to someone I knew only in stories until I read this. Thank you for your beautiful words.
Olivia. Thank you so much for your kind words! Nickle was an amazing person and I think about her very often. When I run into a tough problem and don’t know what to do, I always wish I could talk to her. She wouldn’t pretend to have all the answers but she would talk to me straight. If the problem was caused by me, she would let me know. “Well, Steve, you better take a close look in mirror to sort out that one.” I can just hear her saying it.