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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.

Announcement: Wish you could change your past? Learn to let go and create a life you love with the Tiny Buddha course!
  • Mbw13

    Absolutely inspiring, thank you.

  • http://jzrart.wordpress.com/ Jzr

    Wow! Thanks!

  • Jocelyn

    Hi Stephen…I hope you and your wife have watched this:
    http://www.youtube.com/watch?v=KLjgBLwH3Wc&feature=share
    It’s the amazing story of Dr. Terry Wahls.

  • scilla

    tremendously uplifting.

  • Antparty

    Great post, Stephen. I can hear your commitment to your life with Caroline and hope to experience that same kind of relationship someday. May every moment away from the Present One be short lived. I wish you both peace and joy. 

  • shinigamiPUNCH

    Your post almost made me cry (which is bad because I’m reading this on break at work).  While the autoimmune disease I have is nothing as difficult as MS, I often feel extremely frustrated and frightened with my limitations.  I feel frustrated because I want to be the strong person who’s always there for everyone I love.  I feel frightened because I know I can’t do this alone and I don’t know how my super healthy never-been-really-sick boyfriend can understand what I’m going through. I’ve always thought about letting go as in… if he just can’t support someone with my health limitations, I can let go of him.  But I had never thought about letting go of the fear or frustration or anger.  You and your wife are pretty awesome.  Thank you.

  • Tan

    This post made me cry its so well written and also hits a nerve with me as although its not the same i dont have MS i have anorexia and my fiance feels helpless with not being able to make me better but he is always there for me and without him i dont know what id do i say similar things to him like your wife does to you and it makes me really sad reading it from a different perspective. I wish you and your wife all the best and never give up x

  • http://www.OneMansWonder.com/ Jeffrey Willius

    Hi Stephen — What a beautifully written, inspiring piece! I wish you and Caroline many more such rich moments.

  • Dsprackett

    Stephen, this is so inspiring and obviously written with such honesty from the soul. Yes, I shed a few tears for the physical and emotional struggles with which Caroline and you are living. However, you give us so much food for thought re how we deal with losses, disappointments, challenges etc. in our lives. Thank you so much for taking the time to write and share this!
    Diane

  • Debra

    Bless you

  • DW

    great piece, thank you for sharing.  I cant help but sharing two thoughts on MS….I know, its a separate thought from the premise of your post altogether.  I’m sure you have read and know just about everything about it since you have lived with it for so long, but just for fun, please consider doing two things.  One, if you have not done so please take a LYME test, and be sure you see a Lyme literate Doc (LLMD) and watch the movie “Under Our Skin”.  Second, be sure to watch this short TED video:  http://www.youtube.com/watch?v=KLjgBLwH3Wc.

  • http://ponder-the-pre.posterous.com Kate Britt

    Thanks for sharing your & Caroline’s story. Your insights and ways of being together are amazingly inspirational. Any relationship, with or without such huge physical challenges, can benefit from what you’ve shared with us. My favorite of your insights, the one I’m taking away with me today, is this:
    “Don’t edit out the hard parts. If you have to do that, where’s the partnership?”

  • http://twitter.com/VTFarmGirl Alison K

    speechless. so inspiring. thank you.

  • Rchidiac

    All I can give a person with your intellect, experience and wisdom is empathy and compassion, yet sadly, that is not enough in my books, as frustration is eating at my heart for not being able to offer more, not just for you, but also in an indirect selfish way, for myself as well.
    In such circumstances, I am presuming (as that is how I would feel) that you are angry at God for not existing, angry at yourself for not believing, angry at nature for not caring. Yet, maybe nature does care indirectly, through the individuals on this blog that are as genuine as genuine can be.
    Therefore, even though compassion may not be enough or adequate in these hard times, you HAVE to remain strong and believe that as unfortunate as you may be feeling at this moment, you are also fortunate to have met Caroline that has taken you places you would never have visited on your own, from an emotional and experiential perspective.
    Be strong, live hard, and absorb every conscious moment with Caroline.
     
    From the heart Sir
    Take care and keep us all posted
    Regards
     
    Ralph

  • Rchidiac

    All I can give a person with your intellect, experience and wisdom is empathy and compassion, yet sadly, that is not enough in my books, as frustration is eating at my heart for not being able to offer more, not just for you, but also in an indirect selfish way, for myself as well.
    In such circumstances, I am presuming (as that is how I would feel) that you are angry at God for not existing, angry at yourself for not believing, angry at nature for not caring. Yet, maybe nature does care indirectly, through the individuals on this blog that are as genuine as genuine can be.
    Therefore, even though compassion may not be enough or adequate in these hard times, you HAVE to remain strong and believe that as unfortunate as you may be feeling at this moment, you are also fortunate to have met Caroline that has taken you places you would never have visited on your own, from an emotional and experiential perspective.
    Be strong, live hard, and absorb every conscious moment with Caroline.
     
    From the heart Sir
    Take care and keep us all posted
    Regards
     
    Ralph

  • Rchidiac

    All I can give a person with your intellect, experience and wisdom is empathy and compassion, yet sadly, that is not enough in my books, as frustration is eating at my heart for not being able to offer more, not just for you, but also in an indirect selfish way, for myself as well.
    In such circumstances, I am presuming (as that is how I would feel) that you are angry at God for not existing, angry at yourself for not believing, angry at nature for not caring. Yet, maybe nature does care indirectly, through the individuals on this blog that are as genuine as genuine can be.
    Therefore, even though compassion may not be enough or adequate in these hard times, you HAVE to remain strong and believe that as unfortunate as you may be feeling at this moment, you are also fortunate to have met Caroline that has taken you places you would never have visited on your own, from an emotional and experiential perspective.
    Be strong, live hard, and absorb every conscious moment with Caroline.
     
    From the heart Sir
    Take care and keep us all posted
    Regards
     
    Ralph

  • Sarah

    To 
    Stephen Schettini and to you Lori, for recognizing the value in this post!!!  Sending Love, Light, Peace, Healing Energy, Strength and Great Abundance to you and your wife and to Lori.  Thank you for sharing the story!  :D

  • http://www.alisoncummings.com/ Alison Cummings

    “Don’t edit out the hard parts. If you have to do that, where’s the partnership?”

    So true! Thank you for a post that, while intimately connected to you and Caroline, speaks to all of us as a universal mindful reflection on the beauty of truth (sometimes difficult – and hard, as you say) in relationships.

    Bravo.

  • Stephenschettini

    @shinigiPUNCH: I’m very glad if our story brings you new strategies. Everyone experiences tragedy. We all need to let go, but we also need to stick together!

  • http://www.facebook.com/kiri.speirs1 Kiri Speirs

    Wow. That’s an awesome intimacy. Through an online community I started for families affected by childhood cancer, I am in contact with people who are facing or have faced terrible losses. I’ll be passing this on. 

  • Stephenschettini

    Really … who doesn’t have challenges? We’re blessed to have such a close connection.

  • Stephenschettini

    There’s always something more we can do if we can let go of the mental noise and let ourselves breathe….

  • Stephenschettini

    Thanks so much!

  • Stephenschettini

    Thanks Ralph. Of course your compassion is not inadequate. In the end, what greater gift can we share with one another?

  • Stephenschettini

    Thanks Debra!

  • Lubabradford

    Beautiful shared and honest and true.  Thank you for sharing something so personal and intimate.  The journey of life is so much easier when we all walk it together…be it separate paths, but connected in the true sense.  May each moment of your life together be blessed with wholeness, understanding, patience, deep commitment and contentment. “Here now” is all we have….no more, no less.  Savour the moment.  Love and hugs

  • http://ponder-the-pre.posterous.com Kate Britt

    You’re right, Stephen, we all have challenges. I mentioned “huge physical challenges” though, which not all of us have to deal with. As a senior couple, I and my partner do have things to deal with, but nothing so challenging (touch wood) as you two are working with.

    I think the closeness of your connection with Caroline is perhaps enhanced and broadened through having your specific challenges to work though. I’ve certainly discovered that whenever my partner or I have had physical challenges to work through, those have been opportunities for us to grow closer — and we have.

  • Kelli

    http://articles.mercola.com/sites/articles/archive/2012/01/07/eat-like-a-caveman-to-protect-your-brain-from-shrinking.aspx?e_cid=20120107_DNL_art_2 this is an interesting article I read recently regarding MS and diet–kind of an aside point, but thought you might be interested in it. thanks for this post, it is an inspiring and heart-warming read.

  • John

    I really liked your comment that your wife was afraid of losing her purpose. I lost the love of my life awhile back to ovarian cancer. She was the most wonderful teacher…to both her students and to me. I know that this was one of the hardest parts for her…to let go of this “purpose” and to be in the now. But she did with flying colors and you could see the relief when she realized she didn’t have to “care” for all us.
    Peace and Love to you and your wife…

  • Di Simms

    A beautifully written article. Both of you are an inspiration, honest with each other, brutally so without being sentimental in any way. I’ve been graced by your wife’s beauty and you don’t exaggerate when you call her that at all. Both of you are a lovely couple and you show us in your heartfelt expression that your beauty transcends the superficial. You describe True Love, revealing a deeper beauty that is truly timeless. Thank you.

  • Leadleg Mel

    really inspiring. I’m the one with MS and I can relate to your wife. Thank you for sharing.

  • Marian

    What a beautiful post.  I am a Buddhist who 15 years ago, met and fell madly in love with a man, who, among many other things had M.S.  

    When we first got together he told me that his goal was to not be defined by MS for as long as that was possible and then, when it was no longer possible he asked me if I could join him in facing his end on this earth with, “courage, dignity and grace.”  And he asked me to promise that we would never stop laughing.

    I don’t think either one of us worried too much about the future.  We had such a short time together that we wanted to enjoy every minute of it – in the here and now.  And we did.  And when the time came that he was incapacitated and beginning to forget who I was, he had a friend help him deceive me by saying he was taking his medication, when in fact he wasn’t.

    He left us on his own terms and sooner than he had to so that I would not suffer over much (in his opinion).  

    Our journey together changed my life and my perspective in many profound ways.  I would not trade the experience for anything in this world or the next.  

    I admit that letting go of this man and this love has been incredibly difficult.  I miss him profoundly.  It’s been six years, but step-by-step, day-by-day, I learn to live in a world where he is with me, but not on a physical plane and I am still a part of my own life here even though he is absent.  As with all things, it’s a matter of finding balance.  I make progress all the time.

    Thank you for your beautiful post and enjoy each other.  Every single moment.  I know that you will.

    Namaste,
    Marian

  • Jenny Heenan

    Absolutely beautiful.  Thank you for sharing.

  • Fbrown2

    Thank you for having the courage to share these intimate moments.  I’m alone and I’ve deluded myself into thinking maybe it’ll be easier not to put a loved one through having to experience the discomforts of “when I can no longer care for myself.” Reality is I’m scared to travel the road alone but reality is that’s where I’m at and I am, then reality makes me realize that in any relationship someone ends up being alone so it might as well be me. The universe tells me I’m never alone so I have to trust in that. Staying in the moment helps me keep the fears at bay. I applaud you and Carolyn for making the most of your journey together. Namaste/

  • Anonymous

    Thanks for sharing the link to the TED talk. As usual for these talks, it was enlightening. i passed it on to my friends, The recovery of Dr. Wahl and those in her trial is groundbraking and offers real hope.

  • http://www.offthemat.co.uk/ Rebecca

    That was simply stunning. You have a wonderful way with words. And what a beautiful story you told. It’s inspiring to read your words aboout being together and also letting go. Thank you for sharing.

  • http://hanofharmony.com/ The Vizier

    Hi Stephen,

    Caroline sounds like she is a great source of strength and support for you.  It must be incredibly hard to see the woman you love dealing with something like MS.  

    I think all your years of spiritual practice has given you the strength to cope with this situation.  Maybe in the big cosmic scheme of things it was preparing you for this very moment to be Caroline’s source of strength and anchor in the future.  It is not easy for even the strongest of men who love their wives passionately.  Imagine what it would have been like without your practice.  

    Purpose changes with time.  It is not the circumstances that happens to us that defines us, but what we choose to do about the circumstances that truly matters.  With your support, Caroline will have the strength and courage to press on.  And who knows what kind of inspiration she will bring to others with her courage and determination to make the best of things?  

    Maybe you two will write a book on your experiences with MS to guide others.  Maybe the people who pick it up will gain the guidance and inspiration they need to handle MS or other problems in life.  “What is to give light must endure the burning,” as Viktor Frankl wisely put it.  

    It is not easy to find someone whom we can love deeply and who loves us deeply in return.  No matter what life may bring, once you have found this person, it is best to hold on till the very end.  

    Thank you for sharing this lovely article!  

    Irving the Vizier

  • http://hanofharmony.com/ The Vizier

    Hi Stephen,

    Caroline sounds like she is a great source of strength and support for you.  It must be incredibly hard to see the woman you love dealing with something like MS.  

    I think all your years of spiritual practice has given you the strength to cope with this situation.  Maybe in the big cosmic scheme of things it was preparing you for this very moment to be Caroline’s source of strength and anchor in the future.  It is not easy for even the strongest of men who love their wives passionately.  Imagine what it would have been like without your practice.  

    Purpose changes with time.  It is not the circumstances that happens to us that defines us, but what we choose to do about the circumstances that truly matters.  With your support, Caroline will have the strength and courage to press on.  And who knows what kind of inspiration she will bring to others with her courage and determination to make the best of things?  

    Maybe you two will write a book on your experiences with MS to guide others.  Maybe the people who pick it up will gain the guidance and inspiration they need to handle MS or other problems in life.  “What is to give light must endure the burning,” as Viktor Frankl wisely put it.  

    It is not easy to find someone whom we can love deeply and who loves us deeply in return.  No matter what life may bring, once you have found this person, it is best to hold on till the very end.  

    Thank you for sharing this lovely article!  

    Irving the Vizier

  • Mike

    Wow.

  • http://hanofharmony.com/ The Vizier

    Hi Stephen,

    Caroline sounds like she is a great source of strength and support for you.  It must be incredibly hard to see the woman you love dealing with something like MS.  

    I think all your years of spiritual practice has given you the strength to cope with this situation.  Maybe in the big cosmic scheme of things it was preparing you for this very moment to be Caroline’s source of strength and anchor in the future.  It is not easy for even the strongest of men who love their wives passionately.  Imagine what it would have been like without your practice.  

    Purpose changes with time.  It is not the circumstances that happens to us that defines us, but what we choose to do about the circumstances that truly matters.  With your support, Caroline will have the strength and courage to press on.  And who knows what kind of inspiration she will bring to others with her courage and determination to make the best of things?  

    Maybe you two will write a book on your experiences with MS to guide others.  Maybe the people who pick it up will gain the guidance and inspiration they need to handle MS or other problems in life.  “What is to give light must endure the burning,” as Viktor Frankl wisely put it.  

    It is not easy to find someone whom we can love deeply and who loves us deeply in return.  No matter what life may bring, once you have found this person, it is best to hold on till the very end.  

    Thank you for sharing this lovely article!  

    Irving the Vizier

  • Brittany Mckenzie

    This was an absolutely amazing post.  It brought tears to my eyes, and really opened up my heart.  I recently witnessed this kind of real, unconditional love, and it’s an amazing thing.  Thank you so much for sharing your story.

  • Falk

    Dear Stephen & Caroline,

    Wonderful blog ! Thank you for sharing your intimacy and how to integrate the teachings in such a helpful manner into your daily lives …. especially in facing your fears. It enriches us all. I am lucky to know you both. The Buddha taught that disenchantment was the key in his Fire Sermon.  Your shared moment beautifully illustrates that in a practical sense.

    Falk

  • Redhen45

    Namaste! Thank you for illuminating the beauty that is hidden in the brutal reality and truth of life. 
    love’n'light,
    Patty

  • http://www.facebook.com/people/Sarah-Fischer/725916507 Sarah Fischer

    This made me cry. I have not yet experienced love like this in my life. I only hope someday I have something like the beautiful love you and your wife share. It really stuck with me when you said your wife shared all feelings, the good and the bad. As simple as that sounds, it’s not. Your wife must be one amazing woman!

    Love,
    Sarah

  • Ted

    Beautiful post, Stephen. Love and gratitude to you both.

  • Ted

    Beautiful post, Stephen. Love and gratitude to you both.

  • Jacob

    Hey, I was breezing the internet, I stumbled upon this post. I just want to let you know, there’s a better way… You can let go of your struggles. I know that’s what this blog is all about, but I honestly don’t believe that you even with all your years of buddhist training can face these problems with ease. But, I can promise you there is an easier way. I know you probably don’t believe in God or Jesus, and you’ll probably disregard this comment because of my mentioning of them. But, if you turn it up to them, you can face life without fear. I can promise you that you will still face struggles. And, maybe that’s why you don’t believe in Jesus, maybe someone told you, that you wouldn’t struggle as a Christian. Well, THAT’S NOT TRUE. Jesus came and died around 2000 years ago for us to have the choice. Before then we couldn’t just pray to God. We had to go through preists. But, God LOVES us! He wants to be on a personal level with us. He created us to love us! It was through our mistakes that we created a chasm between us.. Suffering isn’t caused by cravings, it’s caused by our sins. Those cravings to commit sins are caused by the devil. There is NOTHING you can do to stop them. The devil wants you in Hell burning eternally. But, you don’t have to end up there. You just have to accept Jesus! Maybe you were lead to Buddhism due to your parents, or due to being disgusted by other religions. To be honest, I disagree with the dominations of Christianity. I am non-denominational. Why? Because, religion is rules made by humans. Jesus didn’t want us to have to make confessions to pastors, or have holidays made up to “be closer to him”. He just wanted us to go follow him. He is and always will be there for those who accept and believe in him. You just have to say “Jesus, I want You.” That’s really all you have to say, if you truly believe it. If you have doubts about how great Jesus is and why he would come down and die on a cross for us, or just want to see what Christianity is all about, then please read The New Testament in the Bible. You can get it on an app or read it online. The NIV is much easier to read and understand. But, just go to Jesus’ life, and you’ll understand why I can be so passionate about it. Please just give it a shot. I want to one day meet you up in Heaven :)

    Thanks for actually taking the time to read this,
    Jacob B.

    P.S. Just contact me at jacobwins100@yahoo.com if you need any help or want guidance :)

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

    Yes, she’s pretty cool.

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

    Well, the Buddha said the problem was our illusions, which makes me think we can put disillusionment to good use.

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

    Thanks Brittany. I wouldn’t want to romanticize it. We have our fights too, but somehow we work through them to a better place.

  • 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.