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The Intimacy of Loss: Being Together in this Fleeting Moment

“We must embrace pain and burn it as fuel for our journey.” ~Kenji Miyazawa

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 Christmas 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. That’s not what we believe.

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 feeling 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.

Photo by theperplexingparadox

Avatar of Stephen Schettini

About Stephen Schettini

Stephen Schettini is a former Buddhist monk, now a writer, blogger & teacher of Mindful Reflection™ – the most effective way to manage stress, examine personal experience from a deeper context and develop the confidence to fully embrace life. Fnd him on Twitter and at TheNakedMonk.com.

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  • http://www.thenakedmonk.com/ Stephenschettini

    This relationship isn’t good because of our practice. It IS our practice — a big part of it, anyway. Monastic life is one sort of spiritual crucible; this is another.

  • http://www.thenakedmonk.com/ Stephenschettini

    Thanks for reading Rebecca. Encouragement like this keeps me writing.

  • http://www.thenakedmonk.com/ Stephenschettini

    For years I was sure that being alone was the solution. Caroline taught me that everyone needs a support system, and the ones who need it most are the ones who try to deny it. People may not always behave well, but deep down we all want to love and be loved.

  • http://www.thenakedmonk.com/ Stephenschettini

    Marian, you bring tears to my heart. I wish you fine balance always.

  • http://twitter.com/thenakedmonk The Naked Monk

    Keep up the good fight Mel. You’re more than your body.

  • http://twitter.com/thenakedmonk The Naked Monk

    Thank you Di. We’re no saints, though. I’m not sure you should capitalize “true love!”

  • http://twitter.com/thenakedmonk The Naked Monk

    My heart goes with you John. You’ve had direct instruction into the ultimate letting go.

  • http://twitter.com/thenakedmonk The Naked Monk

    Hey thanks Luba. Sometimes I think honesty is all you need. It’s not always easy though.

  • http://twitter.com/thenakedmonk The Naked Monk

    Thanks Kiri. It’s a privilege to connect with so many open-hearted people.

  • http://twitter.com/thenakedmonk The Naked Monk

    Thanks Alison. Truth is beauty indeed.

  • http://twitter.com/thenakedmonk The Naked Monk

    Thanks Jeffrey. Much heartfelt wealth to you too!

  • http://twitter.com/thenakedmonk The Naked Monk

    I wish it for you too, Antparty! Hm, funny name…care to share?

  • http://twitter.com/thenakedmonk The Naked Monk

    Thanks Scilla.

  • http://twitter.com/thenakedmonk The Naked Monk

    It’s good that you say you *have* anorexia and not that you *are* it. May you be free, Tan.

  • http://twitter.com/thenakedmonk The Naked Monk

    On behalf of Caroline, myself and all these wonderful readers and commentators I’d like to say a big THANK YOU to Lori Deschene for creating something so much bigger than herself. Tiny Buddha is a testament to connectedness.

  • http://twitter.com/lori_deschene Lori Deschene

    Hi Jacob,

    I know this comment wasn’t directed at me, but I how you don’t mind if I hop in! My name is Lori and I run this site. I think it’s wonderful you’ve found something that provides you with a sense of peace and purpose in life. Despite the name of this site (Tiny Buddha) this is a place where everyone’s opinions and beliefs are respected.

    That being said, my hope is that we all come together based on our shared humanity instead creating a sense of separation over our differing beliefs. People of all spiritual backgrounds find there way here. Some of them may find comfort in Christianity, like you, some of them may not, like me. Nonetheless, I appreciate your instinct to share what has been comforting to you.

    Much love,
    Lori

  • http://twitter.com/lori_deschene Lori Deschene

    Thank you Stephen. That’s what I love most about running this site–knowing I am part of something much bigger than myself. Thank *you* for also being part of that! =)

  • http://twitter.com/AlannahRose Alannah Rose

    This is such a gorgeously written piece – I could genuinely feel your concern, respect and love for your wife through your words.  I am obviously not the first to tear up reading it, and it really touched me.  What you have with Caroline is what I strive for with all of my close relationships, and it’s so heartening to see how you have succeeded together in building such a wonderful example of partnership.  Thank you for sharing your story here – I will definitely carry it with me.  Best wishes to both of you.

  • Stephenschettini

    Dear Jacob: I respect your commitment to Jesus and am happy you find consolation in him. On my path through Christianity and Buddhism I’ve come to depend upon love as one wing of my journey. The other is the insight that comes from questioning, and so the slogan beneath my banner at The Naked Monk is “Expose yourself to doubt.” I hope that despite the apparent disparity of your way and mine, you’ll see that we’re not so different.

  • Stephenschettini

    Thanks Kelli: Caroline is contacted often by people offering hopeful solutions. Like you, I’m sure they mean well, but I wonder how much this is also about their own fears in facing aging, sickness and death. I can’t say Caroline has conquered her own fears, but she’s certainly willing to grapple with them, and that determination is greater than any faint hope she might glean from anecdotal cures. Thank you for your concern. I hope you can accept that Caroline’s done with both conventional and alternative medicine, and is now focused on acceptance of her unique life.

  • Stephenschettini

    You’ve touched something profound here, Kate. Caroline has a special, built-in reminder to do something we all aspire to but easily forget: to live one day at a time. I’m privileged to share that inescapable imperative. It’s both heartbreaking and enlightening. What I’ve learned above all is that explanations, whether religious or secular, and solutions, whether conventional or alternative, pale in comparison to the quality of our shared life. Letting go of the inner chatter is the key to freedom, even when you’re outwardly trapped. Sometimes I hate this damned disease, but ultimately I feel blessed by the resources we find to face it. Phew! Life really is something, isn’t it?

  • Stephenschettini

    Postscript: The day that Caroline and I first realised we were bonding, her eyes filled with alarm and she blurted out, “Run! Run for your life.” I laughed. Did she think I was crazy? I’d never felt such connection before. I didn’t care about the price. Sometimes I think my whole life was preparation for that one decision that, thank god, I got right.

  • Stephenschettini

    Life is indeed brutal Redhen, but you know what? That’s all right. Simply being sentient trumps both joy and sadness. Hey, it’s more than all right!

  • Stephenschettini

    Irving: Thanks for the Victor Franklin quote. It’s absolutely bloody great!

  • Kilby

    The connection you share, and what you both have given back, is totally behond this realm, such an inspiration, gracious…!

  • devon

    Hi! What a beautiful piece. I am wiping away tears!
    I was wondering if you had by chance seen this Ted talk video about a doctor who cured herself from MS with a very specific, powerful healing diet. It may be worth checking out. http://realfoodblog.com/health/a-brave-woman-and-the-diet-that-cured-her-multiple-sclerosis/ 
    Thank you again for your bravely honest words. 
    It is a valuable reminder for those of us that need to remind ourselves frequently to stay in the beauty and perfection of this moment, right here. 

  • Amber Gray

    This was such an amazing read. This really touched me as I’ve gone through M.S. testing and while I’m “fine” i’m still not completely out of the woods. It gave me hope that I could have a meaningful life with or without this disease and that I owe it to myself to live and be in the moment. I also owe it to myself to find the positive in situations more as im naturally more cynical. Thank you.