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The Intimacy of Loss

I love my wife, so it stung the other day when she said, “Hmm … You’re going to have trouble letting me go, aren’t you?”

She’s not walking out on me. You see, she has multiple sclerosis (MS), and she’s referring to the day she can’t walk any more. She’s convinced herself that she can’t handle the guilt of ruining my life, and expects me to leave when she says so.

I knew Caroline had MS when I married her. I also knew I loved her. And I knew from experience what it was to live in a loveless marriage, hoping against hope that if you work hard enough at it, things will turn around. Of course, there is an element of work in marriage, but it’s got to start with chemistry.

I fell in love because of our chemistry. Yes, physical chemistry—she’s a real beauty—but I’m not talking about that, either. We care about the same things, like honesty and depth and clear insight. And we don’t give a damn about the same things, like having loads of money or achieving great, big visible success.

Still, we live well, eat well and enjoy fine wines. However, Caroline’s turning into a bit of a homebody as her legs grow less reliable. Her car’s being fitted for a hand-operated brake. She had a bit of a scare recently, so it’s time.

They say you don’t die from MS, you live with it. Well, they can say what they like. Those are words; we live with the reality. Most of the time Caroline’s full of life, charged up by her work as a personal life coach and filled with the satisfaction of seeing eye-popping changes in her clients’ lives. Still, MS is a chronic, degenerative illness. She’s gone through all the scary attacks of temporary blindness, vertigo, and electrical storms in her body, weakness, profound fatigue and inexplicable pain.

She avoids medications. They’re no cure and the side effects suck. Her mood is usually good, amazing actually. She has a bright outlook on life, and is a great wife and mother.

When I say she inspires the hell out of me, I’m not just being polite. Being with her has changed my life. Caroline’s commitment to honesty isn’t just a matter of telling the truth to others, it’s about telling it to herself, about uncovering fear and the denial that follows hard on its heels. She’s never afraid to scrape away the shiny surfaces to see what’s underneath—like my hollow silence when she tells me to let go.

We had that conversation the other night because I, not she, was down. I was feeling bad for her, and for us. She was stuck in bed and our holiday wasn’t going to happen as we planned.

She’d had a cold for a week, meaning that on top of the regular symptoms, she gets fever, extreme fatigue, and other complications. With MS, the tiniest bug can throw the immune system into a tailspin and make symptoms last much longer. You can only imagine how frustrated, depressed, and cranky that makes you.

She hates feeling weak, mostly because she wants to “be there” all the time, in the best way possible for the rest of us, especially me. She loves me. Actually, we’re pretty goofy when it comes to our affection for one another.

I ask her what she means by letting her go. She looks me coolly in the eye and says, “I mean, when I can’t function any more, of course. I want you to move on.”

What the hell am I supposed to say to that? What would you say?

I almost blubber, but that’s no way to be there for her—or is it? I tell her she can’t possibly know what awaits her. She raises an eyebrow. She knows all right.

I recognize the moment of indecision. I pause, breathe, and return to the present.

Funny, after eight years as a Buddhist monk with the finest Tibetan teachers and forty years of practice, I sometimes feel I should have a leg up on life’s sufferings. To be floored by a moment like this disables all I learned—the meditative techniques, the philosophy, the calm sense of stability.

We fall back on the only thing we ever have—any of us, any time, anywhere. This moment. And in this moment we’re together, even when it’s painful. We broaden each other’s bandwidth.

People cling to belief systems, religions, and fantasies escape moments like this. But I’m not about to tell Caroline that we’ll meet again in paradise and experience eternal youth in some flowery meadow. So in this moment, I explain to Caroline that I’m already letting go—not of her but of the feelings we get stuck in.

My knee-jerk tendency is to wrap myself up in negativity, to indulge in the guilt of being healthy and the powerlessness of standing by helplessly—to suffer intently out of dumb solidarity. Thankfully, my training gets me past that. I can let go. She sees it in my eyes and lets go too, not of me, but of fear and sadness. Acknowledging those feelings enables us to recognize they’re not permanent, that they’ll pass. Once you’re there, letting go is just another step.

Can the sadness return? Yes of course, but we can still take this moment, and we’re better primed next time to let go of the negativity again. It’s special and tangible. The heart opens, and out of it flows the immense presence of this moment. It brings one more shared insight into inexplicable life. This is as intimate as it gets.

I remind her of what she means to me, not lovey-dovey clichés, but real wake-up calls. I tell her that when she gets down on herself for being unable to cook or do chores, she forgets what purpose she’s brought to my life—all the focus, the encouragement, and frankness.

Caroline coaxed me out of my isolation and brought me down to earth. She raised four fine children and has given her clients a sort of attention they never experienced before. None of this is trivial.

It’s not as if she doesn’t already know this. The real fear isn’t losing her body; it’s losing her purpose.

That fear of what she can’t do traps her in the illusion that she’s facing up to reality. But in fact she’s turning away from the reality of here and now. By reminding her of that I break the spell; she recalls where that negativity comes from, wakes up to the presence of fear, and finds the moment once more.

From the day I came into the picture she’s expressed all her feelings, good and bad. From her example I’ve learned not to keep them in. A partner’s there to share your life with, to listen to how you’re feeling, preferably without judgments or abstract solutions.

Don’t edit out the hard parts. If you have to do that, where’s the partnership? It’s off her chest. She’s back, and here we are sharing one more moment together. What else do any of us ever have? The challenge is to make it real.

This post first appeared on the Tiny Buddha website in January 2012

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8 responses to “The Intimacy of Loss”

  1. Frankens

    Thank you. I get stuck in self-hatred (SH) at the end of the day if it was a day that I was unable to carrythrough what I had planned–a day when executive function failed me. It’s as if I want to hold my spirit under water and try to kill it bc what good is having ideas that I can’t be counted on to carry out? Kill the spirit, kill the ideas, then no frustration. I know this path is ruinous, and I believe that you point to a different way, and I want to respond differently to unpredictable bouts of disability, so I’ll start on this new (neuronal) path by re-reading your moving story. I’ll plant a response in my brain that is a new choice.

  2. Beth

    I am reminded of time with my chronically ill husband. It has been 10 years since he passed. We did work on facing the day to day truths. I remember his going to emergency. It looked like he might really not make it this time. I was awash with the realization of my arrogance thinking that I was ‘prepared.’ I still wasn’t when he actually did pass beyond me several years later. He was a great teacher: worked his path every day, was the most kind and gentle person I ever knew, his adjustments to being able to do less and less…. including having to give up the work he so loved. But you are right – it is all worth the daily work. We learn and experience so much when we achieve being here now – which includes the pain of now … and moving from the pain of then.

  3. Sue

    Thank you for the re-posting Stephen, I needed to read this today. I’d lost sight of each moment through getting stuck in a reactive, fearful loop as my husband isn’t well.

  4. Tony

    You’re awesome Stephen. And your wife seems like one helluva fine person as well! Your both in my prayers. I got more out of our talk the other day than my lousy posture might have let on. Sticking with it… Tony

  5. Paul (in Munich)

    Deeply touching, and deeply reminding of my late friend Mark who lived to 50 with Duchenne Muscular Dystrophy, unable for many years to move more than his mouth and one thumb (with which he controlled his computer by a single switch to read and write) and taught me, by his mere being, a most profound (obvious, but indescribable) lesson for which he is one of very few (3, I think) whose feet I have (literally) touched in respect and gratitude after years of ~bi-weekly visits.
    Perhaps my asking him if he was willing to give up the intense attention demanded by his barely audible, much less understandable, whisper, along with his knowledge of the paralyzed Superman-actor’s success, contributed to Mark’s regaining his voice by clever modification of his tracheal tube. I’d like to think so…or maybe the years-long interest and discussions of how this might be achieved. Doesn’t matter. His father’s consternation when Mark phoned him and spoke clearly for the first time in decades …. that matters. It still does, to me. That and the transformation of Mark’s annual temple fundraising phone-a-thon from a painful burden to a joyous celebration when my (2nd ex) wife and I took on the leadership responsibility. Such pride is no sin. May you and your wife serve and inspire others as did practically motionless Mark.

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