Wednesday, June 25, 2014

On the Wearing of Wedding Rings {Living with a Spouse in Chronic Pain}

 

I spent this past weekend away, four days of sharing space and words and breath with some of the best and most kindred friends I've ever had the delight of knowing.  We fed each other food and wine and truth, shattered bottles in catharsis, pressed our bodies close. 

We talked about many things, but what stuck with me the most was the concept trying on new things, experimenting.  This is my fearless year, and I have tried on a great many things.  I have taken off perhaps even more.  So this notion is not new to me.  I have become quite practiced.

But what I played with this weekend felt anything but familiar.

This weekend, I took off my wedding ring.

* * *

My husband and I are coming up on seven years of marriage.  How has it been so long?  And yet, not very long at all.  

And regardless of perception of time, those years have been full -- of hard stuff.  Good stuff, too, but the bad stuff has been Very Bad, and Very Big.  Eating disorder, stillbirth, crippling depression and anxiety, a newborn struggling to thrive . . . and those are just the things I've written about here.

My husband has been grappling with his own set of Bad Things.  Mainly, living for years with undiagnosed chronic pain, as well as other undiagnosed health issues.  And I'll be the first to admit that I haven't dealt with this facet of our lives very gracefully.  

I never understood chronic pain until I found myself living with one who lives under that heavy weight.  It is mind-boggling, impossible, and horrible in its invisibility, its lack of external physical markers.  So often those with chronic pain look completely normal, making it hard for those of us who don't struggle to fathom the depths of their challenges.

It is made all the worse in my husband's situation by the fact that he doesn't have a diagnosis.  Fibromyalgia,  chronic fatigue syndrome, Lyme disease, and more -- none of the symptoms line up, nor do any of the treatments work.  He's aching in the dark, and no method or drug can reach him.

* * *

We have also been doing quite a bit of growing this past year, both of us.  No doubt that at least part of that journeying was catalyzed by the above Bad Things: my dark night of the soul, his realization that he had shifted out of a lifetime of evangelical Christian beliefs into atheism.  My husband and I are different people now, exquisitely, terrifyingly, starkly different people from the ones we were seven years ago. 

This is not a bad thing.  To live is to grow, and if you're not growing, changing -- well, I would invite you to consider whether you are truly alive.

But our marriage is struggling as a result of our growth.  We have grown in opposite directions.  And again, this is not a bad thing, but it does bring us to a peculiar place, where we have become strangers to one another.  We need to date one another again, to meet each other anew.

* * *

We promised, on our wedding day, for oneness in sickness and in health.  And I honor that commitment.  

But we also need to rescue our floundering relationship, for each other and for our son.

And -- we can't.  Because of the pain.  Because my husband cannot (or struggles to) do the simplest of bonding activities: a walk around the block, grabbing a bite to eat, snuggling on the couch.  

We are faced with the seemingly impossible task of strengthening our bonds when one of us finds simply sitting a challenge.

Where are we to go from here?

* * *

I am living with a man that I love, but I am alone in our home, all of those needs one can reasonably expect to be met in marriage going achingly unfulfilled.

I rage.  I weep.  I rage again.

How can we rebuild when our hands are tied?

More and more, our conversations have turned toward separation.  Perhaps it would help, we say.  Perhaps it would give him a better chance for healing.  Perhaps it would tell me whether my deepening depression is born from our circumstances, or is sourced solely in my self.  If it's the latter, leaving would do nothing.

Some days I can't imagine leaving my husband.  
Some days I can't imagine not leaving.

* * *

And so this weekend, when I was folded safely into the care of kindred women, I slipped off my wedding ring and tucked it into my bag.  I was trying separation on by taking the ring of my commitment off.

I thought it would feel freeing, delicious.  I thought I would never be able to put my ring back on, that I would go home laughing and sure and determined to separate, and --

I lasted five minutes.  

My naked ring finger screamed, crawled for the familiar titanium band.  My already shredding heart threatened to rend well and truly in half, beyond repair. No amount of snuggling from my soul sisters could distract me.

I fled to my room, chest heaving in relief as I slid that silvery circle back onto its place on my finger

Because it belongs there, whatever the hell that might mean.  


* * *

There is no neat and happy ending to this post.  I came home, glowing from the retreat, to discover a sick man.  He was far more ill than I have ever, ever seen him in all our years together.  

It is now three days since my homecoming and my lips have yet to be kissed.  This is the reality of living with a spouse with [undiagnosed] chronic pain.

I don't know how to navigate All This Shit, only that in spite of our frustration and grief and sense of incapacitation, neither my husband nor I wish to divorce.  

But that doesn't make the staying easy.   It doesn't ease the loneliness, or the fear.  It doesn't dry my almost constantly flowing tears. 

I am here.  That is all I know.  And that is something, I hope, although I have no idea what.



I have been searching for quite some time now for resources on living with a spouse with [undiagnosed] chronic pain.  And -- there is nothing.  Nothing that I can find, anyway (let me know if you have something, I'd love to read it!).  There is quite a bit of support for those who are actually suffering from the pain, but not for their partners. So I am writing this aspect of our/my story, to begin to stitch together the beginnings this very needed kind of resource.  Watch this link for future posts on this topic.

27 comments:

  1. Staying thru all the hard stuff is often an act of courage, an act of faith, and an act of hope. Holding you as you traverse this reality. As you live life married but functioning as if you are single. Remember dear sister that true happiness comes from the inside. Finding that happiness though may mean grieving what you don't have and then coming to a place of peace.

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    1. Those are good words. Hard words, but good words. Thank you, Monica.

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  2. Beth, my heart aches for you. I am keeping you in my thoughts and prayers - not even being trite here. The struggle is fierce, but you sister, are even more fierce. Thank you for sharing your truth today. I love you dearly!

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    1. thank you...I love *your* fierceness, too. *rawr*

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  3. Oh, love. I want to hold you tight again, dear sister. I had to remove my rings for the second half of two of my pregnancies and it was like withdrawal. The insane prickling, itching, shrieking fire of tangible loss- even though my mind said it was temporary. I felt those feelings all over again with you through this post today. You are braver than brave. I love you.

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    1. Thank you, dear, dear one. <3

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    2. (I don't feel braver than brave. Maybe chickener than chicken? But I guess that works since we're working on showing our chickens...) ;)

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    3. haha! chickens indeed. glamorous chickens, at that. ;) so maybe you feel you are not brave enough but you are doing something anyway. and the "anyway" counts, too.

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  4. Beth, my eyes fill with tears reading this. You are very brave and you are doing the right thing while searching for helps. I don't know of anything in particular, but I think Joni and Friends my have some information to help those who are caregivers, or in your situation living with someone in chronic pain. If I come across anything I will send it your way. My heart goes out to you. I will pray for your relationship and that there will one day be a "happy ending".

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    1. Oooh good recommendation. I first ran across Joni after my daughter's stillbirth, but totally forgot! What a great resource...will look into that. Thank you!

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  5. Beth I am so sorry. I have lived both sides of this situation. At both sides of this (hard, hard hard) table, for me/us, finding someone who can Iisten w/o judgment is key. Finding respite care is key. There were other things that helped...forums and books...a lot of stuff written for families in hospice can b helpful even if situation is different. If you want more info msg me.

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  6. I empathize with you dear heart. It is 37 years ago today. I knew it was a mistake when I did it, and have not been proved wrong. Your words say it all:
    "But that doesn't make the staying easy. It doesn't ease the loneliness, or the fear. It doesn't dry my almost constantly flowing tears.

    I am here. That is all I know. And that is something, I hope, although I have no idea what."

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  7. So sorry to hear this, Beth. My husband turned out to be unfaithful and unrepentant in the end, so the separation part turned into a very easy decision for me. But before I knew that? I knew exactly how you feel now. He was living with chronic pain and depression, and it was the loneliest time I have ever known. One thing I had been looking into for him, and now continue with for my own self, were essential oils. I really hope your husband may be willing to look at them. I have seen some absolutely amazing healing done with them, and I have no doubt that they could be very useful in treating his pain. The best story I know, because these people are related to me, is this blog: http://lifeaccordingtothechristians.wordpress.com/2014/01/27/olivias-oil-testimony/

    This particular post is great because it talks about the oils and diet they have used to battle their 3 year old daughter's kidney disease. I hope he and you both find some relief soon. This is not easy to battle, and not easy on you or him. I will be praying for you both.

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  8. Holding you. crying with you. Understanding many parts of this story. with love.

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  9. Went through a very difficult illness with my husband 25 years ago. No definite diagnosis - 63 days in the hospital never knowing whether or not he would survive. He did and we went through some very rough years after that. Our worldview changed - no longer trusting that things would stay ok. He went through a severe depression and it greatly impacted his faith and our marriage. Despite persistent thoughts of ending the marriage, we persevered and stayed together and I have never regretted that decision. Being apart would not have resolved the situation. Our relationship changed and the love of those first years of our marriage has deepened and matured. Some of the changes you are experiencing may have nothing to do with your husband's health. Despite his lack of diagnosis for the chronic pain it will help for him to address the accompanying depression. It will also help you - living with someone who is depressed is difficult. Find support from others, take time away to do "normal" things and lay this whole situation at the feet of Jesus. Even though you may not feel like He hears or cares, He does. You will be in my prayers - it is evident from your posts this year that God is leading you down some steep paths.

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  10. OH Beth ... no words of wisdom. simple stepping up to tell you that I hear your words, I see you. Standing witness to this.

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  11. It's been an honor to witness many facets of your journey these past several years. Your waters run deep, so deep. I'm so proud of you. A friend shared this article today that I believe you will find very interesting with an analogy about dealing with chronic illness: It's been an honor to witness many facets of your journey these past several years. Your waters run deep, so deep. I'm so proud of you. A friend shared this article today that I believe you will find very interesting with an analogy about dealing with chronic illness: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

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    1. ^^^lol, not sure why part of my comment repeated itself ;)

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  12. No words are good enough to leave here--but I see you. I love you.

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  13. Beth your transparency of heart and mind is both beautiful and achingly lugubrious ... My heart felt "tight" as I read your words and I so wish I could reach out and hold you until the power of your ache melts ...

    But as that's impractical can I offer you instead a perspective from a man? And, as you know, a man who does suffer from chronic pain.

    My marriage has been one "marked" with pain. Pain of the whole soul and body. I've swam through raging seas of depression, swallowing me up in hopelessness. I gazed into an abyss of suicide with apparently more reasons to die than to live. I've spent the past three years or so in pain that has varied from "distracting" to "agonising beyond belief".

    I've lain in bed for weeks at a time begging the Lord to give me strength to get up so that I could be a man, a husband, a father. And in all this I continue to find that Papa has accepted me regardless ... Regardless of my capabilities, regardless of my ranting and raging against Him, regardless of my selfishness and self pity, my unbelief and fear ... In all this He has always accepted me just the way I am. He has not given up on me. He has never left me. He has never turned His back against me.

    So I continue to grow in Him knowing that nothing is wasted and believing that He will return to me all that has been stolen from me. In the midst of it all I have discovered that He has taught me about dependancy on Him. In the brokenness of my heart and body He has cultivated humility, a softening of my heart, loving kindness, patience and joy, yes even joy!

    I've made some grave errors along the way which have probably slowed the process of my journey towards Christlikeness, but in His mercy and love He has not been slow with me, angry with me ... instead He has waited patiently with me, held me, cried with me, accepted me and loved me constantly.

    How has He done this? How has He shown this? Through Gail my wife ... She has reflected His mercy, kindness and love when I least deserved it. She has patiently and faithfully been there when I needed to be held or when I needed a kick up the arse! She has laughed with me, cried with me, shouted at me and stood up for me ... in all this I saw her love yes, but more of His.

    We each have the capacity within us to exceed ourselves because it is not ourselves that will succeed. Our ultimate success can be measured in the degree to which we surrender ourselves to Him and to that degree we become more like Him and as we do that our old selves gradually die and we exceed ourselves ...

    I am learning that the enemies voice shouts, "Impossible!" the loudest when we're in the midst of our living hells but that it is an illusion for all things are possible for Him who lives within us and as He's always going ahead of us, who can stand against us? It's been a long journey to get from jingoistic, religious platitudes to "Yes, that's the truth!" But in the journey I've changed ... We need the Journey to be able to change ...

    There's all sorts of scripture running around my head right now that reflects these thoughts of mine but I'll leave it at that as I'd rather live and speak the truth in and through my life ...

    I hope that my words encourage you ... I am for you, I am with you. You are much loved ...

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  14. many hugs- I am on the other end, with chronic, undiagnosed pain and multi system failures, and it is a strain...especially after infertility, then recurrent loss/stillbirth...I don't have many words of advice, other than, advocate for him with DR's...

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  15. Beth, I thought of you on the 25th, the day you posted this, as I drove through Missoula. But to read this is truly a sorrow of soul. I wonder at your persistence and patience. At times, my pain is known and evident, at times it is not. I went off of Chemo Therapy for 3 1/2 months and I look much better, but the cancer is growing and my pain is too - but I look better so I am treated differently by others. My wife, like you, is a saint, although of the Jewish variety. I don't have any wisdom, but I do feel for you. I am glad you had your sisters. Has you husband read this post? Do you say to him what you say to us? Do you want him to read it? I ask myself these questions as well. My wife doesn't usually read my writing. Is that a mistake?
    Praying for you, and feeling for you and your husband and child.

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"I am glad you are here with me."
― J.R.R. Tolkien, The Return of the King