Matter-Matters

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When we face loss and grief or fragility and weakness, we miss out on redemption’s invitation if we go straight to mind over matter (though mind matters a great deal).

Here’s how I know... I was queen of mind over matter. And my matter broke under the pressure of my mind’s willful insistence to ignore everything life was saying to me. Now I think it’s something more like Be mindful of the matter.

Even now, three years since everything fell apart (or fell to ground, fell to heart) I sometimes feel scared when my body starts struggling again. It catches me by surprise after all of the lessons and learning...

After the acceptance and changing.

After all of the life-giving words I’ve written (mostly for myself) about the gifts and gains of illness.

After all of the life I’ve found in the midst of things dying off.

After finding a rhythm of resting when I am weakening or doing and giving when I am able...

After all of this, I still feel moments of panic that I might end up back at the very bottom. That bottom is a chaotic, desperate place with all of its uncertainty. I’ll never forget. And though order formed and is forming out of that chaos and births very good things in my life, I don’t want to go back. I want to think serenely, contentedly, confidently, unwaveringly. I want to have stoic certainty about the growth I’ve had along the dis-ease journey and live with stepford-wives-ignorance about how things might play out. But instead, sometimes, I feel afraid of what I cannot know or control. 

It shouldn’t catch me by surprise.
This is the human experience. This is what it means to live inside of our actual lives and not just inside of our head or our armor. This is what it means to live life, to be human and admit that control and self-determinism is an arrogant and fearful illusion we love. The sorrows and joys are inseparable. To grow into love and joy is to grow into sorrow. Likewise, to grow with trust, into sorrow is to grow into love and joy. They grow intertwined. (We actually have some good science to prove it.)

Living inside my life, inside my skin, teaches me with a deeper Wisdom than anything I’ve done with just my mind. (And I’m a fan of the mind. I've always been a thinker and always will be. But my mind... well, sometimes it gets jumbled and confused with everything. But my body... she always tells me the truth if I will really listen.)

When the panic sets in and my mind is racing, instead of clamping down and telling my mind what to do and how to feel (good luck with that), I need to stop and pay attention to the mattered things and to the things that matter.

The fear comes from what my body feels and what my mind does with it, yes, but you can’t just beat information top-down into the body to soothe her or remind her of what is real.

I need to hike or watch the sunset or listen to the birds in my backyard or water my garden. I need to cook something or create something. I need to play with the kids or ask Jason for comfort. I need silence. I need the companionship of a friend, sometimes even a dinner party (though not as often since I’m an introvert :).  I need a good cup of tea, a hot bath with candles. I need sleep or I need to sit by the river and wait. I need to say I need help. And while Wisdom comes near in prayerful silence, or serious study, or a long-ago-memorized passage or verse – she comes nearest to me these days enfleshed – the real, the tangible made alive and healing by the Spirit. It is in the mattered that I hear the Spirit clearest. And why not? From the beginning, matter and spirit came together -  it was blessed and it was good.

Sometimes, if we’re lucky and unlucky at the exact same time, the body catches our attention in such a way that denial is no longer useful or possible. It can be a wake-up call to life. A broken body can take you into despair and fear and/or it can capture our heart’s imagination and open a deep abiding well of healing. For me, it is both. I think it’s a wake-up call the able-bodied can’t hear. (I definitely couldn’t.) Or at least, their snooze button still works. But sometimes all of the buttons break and you can’t shut it off and you have to get up and start walking into life differently.  

In the middle of chaos, it’s a chance for me to come back to the beginning. Back to the place where the Spirit hovers over what seems dark and unknown and brings order out of it, blessing it.  For me, the chaos becoming order now takes shape in very tangible, very real, very embodied ways not just in the realm of ideas or doctrines about life, God, healing or anything else. It is experienced. Being mindful of the matter is the most whole way I have found to hear the still small voice leading me forward in love and mercy and grace. 

How about you? What are your spiritual practices of paying attention to the matter/to the body?

Soup

I had a set-back this week. I just came off two weeks of feeling really good. I was feeling happy and peaceful about my treatment, my competency and accomplishments. I dare say even proud (that little stinker of a besetting sin rears its head quite regularly at me). But the start of this week brought something weaker, dependent, frail. And it has brought me back to a question I’ve been thinking about for awhile.

I have been thinking about frail things – in the world, in me, in nature.  

(I like the word delicate but that’s for another time…)

Our culture shields itself from all things frail. We value strength and power. I hate feeling weak.
Maybe it reminds us just a bit too much of our own smallness. Maybe we’re afraid of hurting.

Maybe it makes us face dependency, impermanence, or our need for and responsibility toward others and the Other.

I have been noticing the difference between when I feel frail and when I think I am strong and I had to wonder…

Could it be that my past, present and future would truly be worse off without Lyme?

When I ask myself the question, What is saving my life right now? I am caught off guard but each time the answer is the same: Lyme.   

“Things that happen in my body break the illusion that I am in control of life…The body makes theologians of us all.” Barbara Brown Taylor

Lyme.

Otherwise known as

The undoing of my willful-weaving to create a life that gave me a sense of value, control, power, purpose.

God’s mercy comes in this spiral-shaped unravelling that says, Come away with me. It’ll be a mess for awhile. Some of it might even feel like breaking… And it will take the rest of your life to learn… But come away with me and learn the unforced, reoriented, rhythms of grace…

Of genuine faith

Of delight

Of humility

Of contentment

Of gentle living accompanied by chutzpah

Of valor

Of dependency

Of mutuality

Of simplicity

Of stillness

Of nature

Of giving, serving and loving without binding the other

Of being loved without being bound

Of joy

Of truthful words and truthful living

Of seeing and telling the truth about myself and what I know

Of having the courage to see past what is unreal to what is real

Of facing my addiction and compulsions for the sake of approval, validation, being special

Of trading work to be loved for I loved you first, before any of it

Of experiencing deeply the first Love who stitched and stitches me back together with beloved, enough, good

Of a willingness to live counter to my culture (church and society)

Of a growing desire to stop building up my “kingdom” and embrace what is more whole, more human, more ordinary, more uncertain, less tidy, more honest, more faithful, more loving, more holy.

*****

Could it really be that this twisted Lyme journey is healing me?

We can be healed without being cured. We are offered healing, never promised a cure.

Enter homemade soup.

“To eat is to acknowledge our dependence—both on food and on each other.” Frederick Buechner

There is something inexplicably comforting about the nourishment of soup. I have been trying to figure out what it is about the soups you made that heals and humbles.

Each time I open my freezer, I notice your soups.

Each night, I set out a soup I will eat at lunch the next day.

Each time I gulp down the warm broth, I feel nourished and grateful.

Sometimes as I eat, I even wonder if dependency in community can really taste this good.  I think of you and say a prayer of thanks for you, your efforts and your love displayed in this very practical way. The soups have made a huge difference in giving me more energy for our family needs. 

Eve Ensler writes about her journey through cancer, “The thing that really heals is to know we have not been forgotten.”

When I blogged the request for soup, I did so aware of a very practical, tangible need to help me conserve energy so I could put it toward healing and caring for other basic needs in our family.

In hindsight, I wonder if at some deeper place I was also hoping to be reminded that I am not forgotten, that I am supported, that we are not alone as we live out this hard place.

Your soup is nourishing my body and my soul. I think I can even say it is healing me.  

I shouldn’t be surprised. It seems to be the way of God to use the tangible, material to convey and accomplish the holy and healing.  

“Matter, matters to God…this is embedded in both testaments of the Bible…” Barbara Brown Taylor

Over and over we see symbols – touchable, smell-able, see-able symbols conveying a Mystery we can just barely understand if we are lucky. It allows us to know and to experience the sacred here and now in our human skin and senses, to let the Mystery enter us and change us. (Incarnation, Eucharist…) It’s real matter/material that brings to human reality the Mystery. Another example of this is the sacrament of “anointing the sick”.

Rachel Held Evans in her new book, Searching for Sunday, beautifully articulates the deep significance in this sometimes weird-sounding sacrament.  And because a theology of suffering and healing are typically shallow, dismissive and entitled in north american churches, I was encouraged and comforted by her way with words.

“The slow and biblical work of healing is to enter into one another’s pain, anoint it as holy and stick around no matter what. (Anointing the sick) is an acknowledgement. It’s a way to speak to someone who is suffering without words, platitudes or empty solutions. It says, This is a big deal. This matters. I’m here. Anointing is really a commission, a sending out on a special mission. How significant is it that (for centuries) Christians anoint suffering? Healing is a slow, relational, meandering path. It requires patience, presence, and willingness to take the scenic route [with one another]."  

I have thought about your soup and how it has been an outward sign of an inward grace, much like this idea of anointing the sick. This is how we define sacraments – outward signs of inward grace. The root of the word means “sacred, holy, to consecrate”.  

Seeing your soup sitting in my freezer has felt like you commissioning me to live within this hard place. To make it required your attention, your money, your time, your care, your hands. These are your prayers. In chopping and simmering and delivering you gave me your presence that says, This is a big deal. This matters. You're not alone.

In many ways, the soup has been the best our community has done to see our “suffering” and bless it. No platitudes, no scripturizing (though well-intended), no judgments, no covert advice on how we should be living this out. Just a lot of grace healing me bowl-by-bowl.

So I am healing. I have high doubts about ever being cured (though I do have hopes for becoming physically well).

Not because I don’t have faith it is possible but because I know I have stumbled upon a more faithful life in this weak place. I may never get back what I had before. And in light of all I have just written, you’ll understand why I sometimes wonder if a cure would even be the best thing for my life – the one where it seems to require my frailty and weakness to see and receive the gifts of the unforced rhythms of grace. I do, however, have complete confidence in my healing. For the rest of my life I want to be healed. And what I am learning is that healing is not a single or solitary instance. It is ongoing. It is not about regaining the life I used to live. It is not even just me and God. It is relational, communal. It comes when we enter one another’s suffering and help redeem it by blessing it, carrying it, staying present and patient with a faith-filled heart that trusts in the Mystery of God when healing sometimes looks like dying. I am learning that suffering ceases to be suffering when we are able to find its meaning in the story of redemption. And your soup is one of the ways we've been accompanied and the best way our pain has been acknowledged, blessed, carried. It helps me see and tell our story with a theme of redemption.

With heartfelt thanks!

Choosing the Fragile Side of Life (Starting Treatment)

I start treatment on Tuesday.

I have all of my pills and medicines lined up waiting.

Photo Credit

I am scared. I’m so glad I feel scared.

I am also ready. I am ready to begin this winding, crooked road.

I used to think I was unafraid, tough enough to handle the hardest things. But in truth, I was so disconnected from my body that when it told me I was afraid, I refused to hear the message. If you do this enough times, you’ll cut off from your very own self. I was good at it.

I don’t recommend it. It’s a long, hard journey back.

Once, I watched literally paralyzed as my brother was dog-piled and beaten by a group of young men none too pleased with the cocky white kid dunking on them. I felt pure terror, helplessness and then I felt … nothing. I was so afraid my beloved brother would die that I cut off from the fear and the terror. The fury with which they attacked him was matchless and twelve-on-one is hardly a fair fight. I disconnected from my body as it sent all kinds of terrified, horrified, panicked messages about the threat I was helpless to stop. I had already developed this skill throughout my life in much less terrifying situations. It was a literal miracle that saved Ryan that night. And there have been many small miracles since that have saved me from this disembodied way of doing life.

Having a baby was one of the first things that broke open my disconnected way of being human. You cannot ignore the very embodied experience of pregnancy and birth. Giving birth, partnering in creating life, broke me wide open to life - to really feeling things in life. And there have been many other openings since; some as blissful as a baby and others much uglier, more difficult. Two sides of the same coin.

Lyme is one of those, I think.

So I am ready to start treatment. I am also scared. And I am glad to feel these things. I am glad to be living grounded into the human experience I have been gifted.

It is not much of a secret that I had given up on life in the spring. I kept going through the motions but Jason already knew it, even before I did. I felt nothing and I didn’t care. (This is called depression.) I gave up on my fight, my life. Maybe I only gave up on my fight with life – to order it, control it, to get my way with it. It felt like the same thing even though I know they aren’t. I gave up on my will to live. Under the weight of the uncertainty for the future, of all of my fears and guilt, I just quit.

Salvation came for me in that dark place. Sozo (to be saved; salvation) to be kept from danger, restored, made well (whole), preserved. He reached down and pulled me from the mire (sinkhole). Psalm 40:2

I was pulled out, pulled into the heart of God where I knew with certainty the whisper to choose Life. The whisper in my soul spoke of God’s will for me. I heard this question over and over again. Will you be so vulnerable and brave to choose this fragile, beautiful, uncertain gift of life?  

Sometimes choosing life, showing up for life, is an act of vulnerable courage.

In loving kindness, God whispered and waited for me and ultimately let me choose – life or death. I still believe the Spirit of God grew hope so deep and raw in me so that I could choose life that day. And every day since.

It was a turning point being met by Life on the bluff at King’s Fold. The point where I chose consolation of God’s presence instead of life on my terms, in spite of the desolation and darkness I felt in overwhelming circumstances. I chose the consolation of recognizing the tiniest flickers oflight in the darkness and knowing it was enough for contentment and life.

I chose life. In the act of saying yes to Life, without realizing it, I gave my broken heart back into the hands of a loving God who keeps on healing it. Sozo.

I am ready for treatment.

I am also scared.

I feel a constant anxiousness in me vibrating just below the surface. There in the anxious buzzing are the unanswerable questions.

How sick will treatment make me?
Will I be able to care for my family? For myself?

Will there be pain? Agony?

As the spirochetes die off in my brain, how out of my mind will I be?

Can I handle the pain?

Can my children handle me in the pain?

What can I do to keep this process from harming their sense of security?

What if I cannot function at all?

What if nothing happens?
What if it doesn’t work?

Maybe these are only worst case scenarios and I’ll be tired and nauseous but able to hobble around attending to the basic needs of our life.

Can Jason bear the weight of all the extra responsibilities when I cannot?

How much help can I really ask for?

When and who will I know to ask?

How do I plan for all of these possibilities?

Question after question keep coming all with the same answer…

I cannot know. We won’t know until we get there. There is no certainty.

Instead, I have decided to focus on different questions. Questions to guide my new year and this uncertain treatment process. And these bring a sense of peace. They lead me to a still place where the anxious buzzing quiets a little and I see a bigger picture. (And also make some plans around the most basic needs.)

(Questions taken from one of my heroes and teachers – Parker Palmer)

1) How can I let go of my need for fixed answers in favor of aliveness?

2) What is my next challenge in daring to be human?

3) What is waiting to be birthed in and through me during this time?

I continue to ponder these questions and am learning to live into them. But one thing has become clearer to me as I consider these.

My next challenge in daring to be human and to be alive, to choose life is this: 

To accept and companionably live into the fragile side of life. I feel sure there are real treasures to be found in this fragile place. 

Advent, Hope & Our Lyme Update

It is past time for an update on my October appointment with the Lyme Guy.

A few people have expressed concern about my silence. It is less about distress and more about discernment. It takes time to listen for wisdom. It takes time and quiet to discern a way forward. For me, it takes time to discover what I want to share and what I don’t want to share. And that what I don’t want to share is a-ok. Our retreattoward rest has looked like withdrawal on many fronts – some intended and some unintended (like this blog). This has not been about isolation but about healing and growth.

****

Advent seems the perfect season to pull all of the pieces together and reflect on where we’ve been with Lyme and where to from here.

Painful and hard are not the same thing. But I have used these words interchangeably for so long I didn’t notice when they stopped being one and the same for me.

Lyme. It is hard and it has been painful and likely it will be again. But the heart-shattering, suffocating, pain of Lyme and all the ways it has changed us has passed for now. It is still hard but it is not breaking my heart. I think this is because of the deep, dependent, life-giving relationship between faith, Hope and love.

I believe faith is a gift. I cannot conjure more of it up. I cannot work harder to get more of it in my hands or heart. It is a gift I receive and a gift I participate in when I remember and trust in the God I have come to know and the ways I see him at work mending the world. It is this faith that often keeps me from giving up on Hope. Hope is sometimes the tiniest seed, a trust or a sudden knowing that light is always there in the dark places even if it is only unseeable flecks of light moving through the darkness. 

Hope is the presence of God breaking through suddenly and unexpectedly in the most desperate places. Before the hope comes fully alive in me, I usually experience it as Hope hoping for me. The power and presence of God that is Hope. Christ our Hope or Come Lord Jesus are common prayers during advent. But they are prayers that have become more real to me in this season of sorting through Lyme, longings, what is growing and what is dying while I listen, watch, and wait for light to break through.

This is why I love advent. (And also because I'm typically melancholy.) :) 

Recently, I was talking with a spiritual mentor about all of the threads of hard and beauty running through our lives. I told her of places where I felt like giving up. I told her I sensed these were the same places that could connect me to a deeper experience of advent this year but I couldn’t see it since advent is supposed to be about hope and I was all out.  As we talked about hope she said,

Places of hopelessness are the places for advent.  

In advent, we are actively waiting, repenting, looking, listening for Hope. But it hasn't made itself known yet. Christ our Hope bursts on the scene in the powerless places. Incarnation is Eternity, the Eternal One, always being born into the manure places of our lives. 

I have been and am still wrestling and discovering how I understand and how I explain to my children why advent matters. Evan already asked me the question, If Jesus already came, what is there to wait for? It’s really the question for all of us. If you believe Jesus already came and that it matters, what are you waiting for now? Why does it matter now?

To me, the promise of my Christian faith is not that a life with God means the lights never go out or that we’re never hopeless in the dark or that it is only at the end of our lives that we will get a golden ticket out of this mess. Rather, I am convinced that in the dark, barren, painful, broken, fearful messes of our life the soil is primed and ready for Hope to break through; for Immanuel – God with us to be known and experienced again.

In suffering, in places where we realize we are not in control of our lives (sometimes called rock-bottom), Hope breaks through. The excitement and anticipation in advent for me is that the Incarnation happens  not just 2000 years ago in the birth of Jesus, but that it keeps happening over and over again in the hopeless, isolated, betrayed, broken, sick, dying places of our lives if we will open our hearts and lives to see and participate in it. It is not self-sufficient demanding disguised as hope expecting the certainty that if I put my money into the candy machine and select A5, I will get exactly that (I would choose skittlesJ). It is the love and light of God that breaks in like a flame in the darkness warming and nourishing what looks dead.

This is not hope in a particular outcome that fits my script. But Hope in the divine creative presence of Immanuel – of Love with us, accompanying us, comforting us, shaping us, coming near to us. To bring my longings and fears and questions and the experienced knowing that it is really all we need. Contentment in this Hope of God with us. To trust and know that to be accompanied in all of it is enough.

****

My appointment in October clarified several things. Lyme Guy is very knowledgable about Lyme. He answered several very pressing questions we had. He ordered tests that will help guide the treatment process. But he is also 1300 miles away. For a controversial and uncertain treatment process, this does not seem wise to me.

For some time, I have been leaning toward a natural (herbal) antibiotic protocol to treat the borellia (lyme bacteria) and other co-infections in my body. In September, I met with a naturopath here in Calgary with eight years experience treating Lyme disease. One thing I realized from meeting with Lyme Guy is that most Lyme treatment is a crap shoot. It’s not a perfect science. It will never be a perfect science. Its just the best thing up to now they’ve discovered has the possibility of working. But the pharmaceutical antibiotic treatment route has significant risks. Treating any disease is a cost-benefit analysis. So we have carefully, with a grounded patience and waiting, attended to our own cost-benefit analysis.

While we have weighed our options and the cost-benefit analysis of treatment, we have had the heart-breaking, impossible difficulty of considering every member of our family. I used to think this was more than I can bear. But Hope. Hope breaks through and gives us just what we need for the present inch. Hope. A flicker of light where before there was only dark. There is nothing bleaker for me than knowing I have passed on this disease to Jason and our kids. In advent this year, I am welcoming the flickers of light that keep growing into a brighter light, breaking through what seemed like the most oppressive dark.   

Seeking treatment options for our kids solidified my growing intuition that the natural approach is the best next step.  

We are tag-teaming our treatment because well, someone needs to take care of things around here. So Cara and I (Team Shepherd Girls) will begin treatment at the end of January. Team Shepherd Boys will be gearing up for treatment at a time still to be determined.

Our naturopath emphasized that we should not be fooled by the term “natural” and the treatment process will still be very difficult. Whether it is a pharmaceutical or herbal approach, the goal is to clear enough of the infections that our immune systems are able to take over and keep/send the disease into remission. This essentially overloads the body with toxins your body is often unable to clear easily or on its own.

Lyme is not cured. It is managed. So the question then becomes how do we equip and strengthen our bodies, our immune systems, to deal with the borellia for the long haul? What do we do to keep it in remission? What do we do when it decides to rear its ugly head sometimes? These are questions for which the Lyme community has many good answers. But there are other questions it cannot answer. Questions like, What kind of ongoing damage is the bacteria doing to organs, the nervous system? How much does this bacteria leave our bodies vulnerable to other diseases? (It is very likely that the amount of abnormal moles I have had since I was 19 is related to my body dealing with borellia.) How much does treatment really change the course of the illness in the long view? What is normal childhood ache and pain and what is Lyme kicking in? How do we help our kids listen to their bodies but not be defined by this label? Will we ever get better? What does better even look like?

Multiply these questions with a just-now-growing recognition in the medical community that Lyme can be passed congenitally and there you have heartache, sadness, worry, hope, anxiety and so much more. There are many questions and no answers when it comes to the kids. And yet, despite all of my fears about telling them and helping them process it – faith, hope and love have been at work to make it a very tender, raw, gentle place of moving toward each other.

Perhaps you see why placing hope in treatment and its faux-certainty will never be the answer. Perhaps you can see why getting sick has been one of the most difficult and necessary gifts toward living a life of surrender. 

It has been the soil for Hope in my life, for experiencing the gift of God’s presence coming near when we have run out of certainty and answers and ways of ordering and demanding the desired outcome for life. The deal with life that if I am good, it will be good to me simply hasn’t paid off. And so I have begun learning about a different economy of unconditional love, of God’s goodness and presence. An economy that takes hard places and moves us out of pity and desolation and into connection and contentment. I am learning of a deeper, bigger and wider faith that promises in our desolate, fearful, broken places we will be held and Hope will sprout to become faith and they will live co-mingled so that love is the only thing that blooms out of it. Its about contentment in all things.  

I am certain of very little these days.

But for a girl who has lived with a lot of fear, I am certain of this …

Perfect Love is the only thing strong enough to overcome fear. And it often happens in the most unexpected ways and places.

I am noticing and nurturing faith, hope and love in my spiritual practices in advent. Faith, hope and love at work in me, with me, for me, in you, for you, with you. The greatest of these is love. But I’m not sure we get to love without the first two.  

****

We will keep you posted as the start of treatment comes closer. I am terrible at asking for what I need. But I am learning. So we will ask.

For now, I hope advent opens space for you to bring your own uncertain, dark, maybe even hopeless places and wait for Hope.

Check out this link that offers some great questions for advent reflection and also ideas for families.

The questions that are staying with me…

When I wake up on Christmas morning, how will I be different? How do I hope the meditations and practices of the season will shape me?

Have I left enough space in the season to pay attention, to listen, to wait and to be surprised? What practical ways can I take to guard those quiet moments but also embrace divine interruptions?

Consider the effects of light. It can warm and it can guide, but it also exposes and surprises. What does light in the darkness mean for the world? What does it mean for my life in this season? 

The Appointment

As a traveller - Don't be gazing at that mountain or river in the distance saying,

"How shall I get over them?"

But keep to the present little inch that is before you and

accomplish in the moment that which belongs to it. The mountain and the river can only be passed in the same way; 

and when you come to them you will come to the light and strength that belong to them. 

Tomorrow morning at 6am, I will have my long-anticipated appointment with the Lyme Guy (affectionately dubbed).

I have tried to contain my hopes and expectations for this one appointment. It's called foreboding joy, avoiding disappointment and heartache. And I am tired of Lyme breaking my heart. It feels like so much is riding on finally talking with someone knowledgable and experienced in working with late stage Lyme. We have so many questions. 

The night before I left to come to the States, I was laying on my yoga mat listening to our instructor talk about letting go. She encouraged us, with each slow breath out to release tension and tightness and say LET.IT.GO. 

As I did this, I almost starting weeping. I realized my body along with everything else is holding many questions, expectations, fears and hopes for this appointment and how we move into treatment. 

Your prayers are appreciated as I go tomorrow. I am praying for discernment, peace in our decision-making, trust despite the many unknowns that will undoubtedly remain and a few solid answers to help us find our way. 

Trust, peace and hope seem to be more abundant when I humbly attend to the inch in front of me, recognizing that when I get to the mountain, I will be given what is needed to make the climb. 

Angels in Disguise

When its coming apart, you had it all

It wasn't enough, no its not enough

They tell you its not worth the price

So just let it go

But you know you can't, you know you won't

Its not easy, no, finding the words to say

When you're feeling lost

You'll find your way

The world is so broken and sometimes it leaves you cold

And at times you can’t feel the fire to guide you home

The demons will haunt you and try to steal what you know

But the angels, they brought you and they’re gonna hold you up.

They see fear in your eyes, heart sinks like a stone

‘Cause when you’re afraid, it weighs on your soul

(Hold You Up by Shane Harper)

******

I am not sure what I believe about angels or demons. I know what I learned in church or seminary but what I have actually experienced or believe is probably a different matter. I know I have plenty of “demons” of my own without blaming what’s wrong on forces outside of me.

Recently my spiritual director said something that has stuck with me though. She spoke of places in our life marked by an unusual intensity, struggle, or maybe even evil. She said something like this, Where there is a spiritual battle, the Kingdom is always waiting to break through.

Just before summer, I confided things to Jason I never thought would live in my soul let alone come out of my mouth - really sad things, tired things, things that scared me. We were pressed on every side and some of the information that came our way about this Lyme journey completely broke my heart and left me gasping for air. It was a breaking point. Who can live with this? I wondered.
I was too heartbroken and tired to care about the sinkhole and suffocating in it.

A Call for Honest Conversations about the Hard Places (Celebrating 11 Years of Marriage)

It has been a rough season in our marriage because it has been a very rough season for our family. We felt caught in the eye of the storm that roared through our lives.

When it was clear the clouds were moving in, we did what we do best. We got prepared. We gathered our metaphorical umbrellas and pulled out rain boots. We worked together. Jason and I are at our very best when we have a project and need to get.something.done because we both like creating order in our life and we work hard and diligently together with a goal. I think we appreciate each other more when we can tangibly see the other contributing.

When the rain came hard with frightening winds, we battened down the hatches and huddled together to wait out the storm. But by June of this year, it was every man/woman/child for themselves because from inside our life, it felt like we were being tossed like rag dolls in the waves. Everything was flying everywhere; our words, our desperation, our fears, our future, our money, our energy, our parenting, our losses, our grief, our anger … We were hanging on for dear life.

And I blamed it all on Lyme.

I am coming to see that isn’t quite right. 

The winds and rains have died down and there is room for reflection as we step out and survey the damage and talk about how, where and what we need to rebuild.

It might be that the Lyme diagnosis (storm) brought some buried things to the surface. Pressed on every side, things that were minor became major. Some of what was revealed was good stuff and some of what came up was old junk that we had sort of buried and left to harden and corrode. The minors were easy enough to ignore before they became what we needed to survive the storm. 

In the height of it, I was reminded (perhaps a God-whisper) that this could be a refining, transforming, place brought on by things outside of our control we would rather do without but that also were immeasurably worthwhile.

I was reminded that our marriage is not deeply flawed because we are struggling to find any stable ground to stand on together. Our life is experiencing a trauma in very difficult, heart-breaking ways. When the storm stopped flinging us around, it did not set us back where we used to be. We can clutch to our old dreams, our old selves, our old life and watch them die or we can do the pruning, planning, preparing, planting and wait for a new season, new seeds, new growth and new life.

It is always hard to lose the life you planned. The one you dreamed about, worked toward, hoped for. It’s why it is so hard for me to follow Jesus and lose my life to find true life. Because, really, it is so deeply painful to have the layers I built to protect myself and get my way in life, peeled away.

It’s hard to start over. It’s hard to feel weak. It is hard and humbling (and freeing – but that comes after the hard and humbling) to recognize we are not in control of our lives. Because the mercy of God that breathes life into these broken places looks different than the sweet, feel-good kind we really pray for.

But I have always been thirsty for real life with God. Mostly, I don’t want it to cost me any of the things I have built or think I need. I don’t want it to wound me in the process. This is why it is a loving, severe mercy that God gives me what I most deeply need and desire but would rarely agree to if I knew the cost.

Here is the beautiful and hard grace of this place we are in. We are cultivating new ground. We are working out what is lodged between us when it would have been much easier to ignore it or walk away from each other. I know with absolute certainty that it leads to more intimacy, a deeper life together. We are doing the work of cultivating the soil and planting new seeds. What life will bloom still remains to be seen but I know there will be new growth after a very hard, devastating season. This is Hope. This is Trust. This is Love.

We have been coming back to each other and finding firmer (and at the same time, gentler) ground. We have begun holding on to each other again.

Those of you with long marriages that have survived storms, been battered in storms, but found the courage , vulnerability, grace and hope to rebuild, you have something of immense value to offer the rest of us earlier in our journey of  cultivating a real marriage.

There seems to be this skewed view that only those with trauma-free, scar free, marriages can speak about the success of their marriage. I don’t agree. Every marriage has rough seasons and we need those who have found their way through them to offer us wisdom, guidance, and hope by their vulnerability. Your vulnerability helps us to know that just because we experience hard places in our marriages does not mean we should give up or even that our marriages are deeply flawed. Frankly, I cannot relate to people who portray a perfect marriage. (Though this may be what others need so if your marriage is wrinkle free, maybe just don’t tell me about it J but encourage others who have wrinkle-free marriages. For the record, I do not know any of these couples.)

The silence of the wise people that could speak honestly and deeply to young marriages gives the impression that the 30, 40 and 50 year marriages we see got there scot-free. Once we’ve been married for more than five minutes, we know this isn’t true. But we need your stories – your honest, vulnerable stories of your own severe mercies. We will not judge you. You will give us hope and comfort and direction. Tell us about the joys and delights of marriage. Talk about your friendship. But don’t just speak of hard places with humor, or a wink or a roll of the eyes. Tell us your stories of how you step/stepped on each other. Or talk about the hurts that lodged between you and kept you from loving each other fully. Speak about the isolation in hard places, the pain of it. Tell us of your uncertainties or doubts or anger or fears when you were in the middle of the hard times. Tell us how you nearly broke – or maybe you did break – and then tell us how you trusted each other again, how you recovered and found your way back to each other. It doesn’t have to be perfect but it needs to be real. My generation cringes at preachy and pretending but soaks up authenticity. So share your stories with authenticity and vulnerability. We will be better for it. You will be better for it too. You will offer comfort, peace, and wisdom. You will give us perspective to see beyond painful experience of our marriages. Maybe we will tuck away your story for the future or maybe it will be exactly what we need to hear for the hard place we are living in. In your stories, we can be comforted and challenged and cheered on at the same time.  

Real marriage is not smooth sailing for years on end (though there are lots of periods of smooth sailing – we’ve had those too). It seems to me it’s really about holding on to each other, coming back to each other, listening to each other, cultivating new soil, planting new seeds and rebuilding together over and over when storms of life rock the boat.

PS. Remember how I said we would not judge you? Maybe don’t share it with engaged couples. The chances of judgment are high. When I was engaged, I knew my marriage would be perfect and would have seriously judged you. ;) 

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A favorite song by Dave Barnes.

I Choose Life

Funny how the same word can hold completely different meanings.

Take for example, RETREAT!! or Retreat

RETREAT!!

Retreat

(For the record, this is just a random pic from the internet not where I was actually staying)

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When I told my troops to “RETREAT!!”  I meant from the battlefield. But because God always seems to have gentler metaphors for me to live out than my own painful, fear-prone ones, I actually went on a retreat.(Insert spa-like music here.) I literally went to a retreat centre. It’s pretty much the gentlest, most hospitable, place on earth. I dare say the exact opposite of a battlefield. I did not get the irony until day five of my stay. Instead of crawling back to my trench to find ways to re-gather our life, I left the battle altogether and sat on the side of a bluff with the mountains and big Alberta skies, hummingbirds, blue jays and lots of mosquitoes too. I was cared for with homemade (gluten free) food, early bedtimes, afternoon naps, a lot of solitude and even more silence – basically all of it was tangible Grace for six days straight.

I feel hesitant to say I’ve been pulled out of the battle or pulled out of our sinkhole (cross my fingers) but it kind of feels like it. Since we tend to live into our metaphors, I am feeling grateful for the Grace that reached down and rescued me. (Many of you were givers of this grace but that is another post.) I’m sure it will take some time to make meaning of what I have sensed and realized from my time away. The last couple of days of my trip, I kept trying to write some of it down and it was/has been hard. It is hard because it comes out of a very deep place. A place where Spirits meet and it’s hard to find words for that kind of Mystery. But here is what I know… 

I choose Life.

I choose life.

I choose life.

And I choose this life.
Yes, this life with Lyme.

I choose life so that my kids have a mom who participates with them in life, leading and showing them how to live with courage and joy in the face of hard stuff. I choose life so that I can keep on loving my God, so I can listen for his voice, and hold fast to his love. I choose life so I do no waste the tremendous gift I have been given. I choose life.

Choosing life also means I acknowledge that life is organic. During my week away, I was intently reminded that life is like ‘the eternal cycle of the seasons’. We live in a society that manufactures stuff. This view of manufacturing even our lives is common in our culture. The problem is, manufactured stuff breaks (easily). The way we make and construct our lives leaves them vulnerable to breaking or shattering. But when we see life through the metaphor of the seasons, even in the barest, bleakest seasons we can wait with hope knowing growth and life is always happening even when we cannot see it.

Now to figure out what season we are actually in. It is quite possible this is (only) autumn (even though it has felt like a harsh winter). Things are dying off and turning brown and we are making new seeds for our next growing season even while everything in view is dying off. If so, I want to make sure our seeds can survive a harsh winter.

Me, North Korea & Time to Retreat

I think I have been using a page from North Korea's play book. I have poured all of my resources into showing the world my strength while everything and everyone inside my borders suffers and knows we are not what everyone else sees. We are much weaker than we show.

As I try to figure out how to balance what I want to do, what I can do and what I must do, I am reminded that I still have such a striking ability to be a faker. Especially with myself.

I fake it because I can't believe a teeny tiny tick could wreak this much havoc.

I fake it because when people look at me, they don’t believe I can possibly be so sick.

It is one of the weirdest things about chronic Lyme disease - it destroys everything inside but leaves you mostly looking the same on the outside. I look mostly normal. Except when I don’t and I’m obviously not posting my picture to Instagram that day. There have been days when I see my reflection in my bathroom mirror or in the worried face of my mother-in-law and realize my outsides match my insides that day.

Exhibit A

I am ashamed to say I used to look at pictures of other folks with Lyme and see their posed smiles and think there's no way they could actually be feeling as sick as they claimed and still take a picture like that. Karma! 

I was in a lot of pain and trying to keep myself held together to attend Cara's little graduation. I went down hill for the rest of the day and ended up in bed. But none of that would be obvious from this picture.  

I fake it because I’m hoping the “fake it till you make it” philosophy will actually pan out for once.

I fake it because I’ve felt I don’t have a choice.  

We have bills to pay and kids who need to eat and get dropped off at school and have a normal life.

I fake it because I don’t want to be a whiner or a burden or have people’s pity.

I fake it because I don’t like depending on others.

I fake it because I want to pretend I haven’t lost things I really liked about myself.

I fake it because I don’t want to accept that many dreams for our family and life are shriveling up.

I fake it because my job requires that I put aside my own stuff to hold space for the stuff of others.

I fake it because I am really scared of having this mess up our kids or make them grow up too early.

I fake it because I actually do have good days and they trick me into thinking that maybe I can just make bad days good days if I try hard enough.

I fake it because it soothes my ego to pretend I am still strong.

I fake it because when I stop moving and doing, I start shaking and tremor-ing and twitching and it freaks me out.

I fake it because I am afraid if I slow down I might never be able to get up and go again. Ever. I am hugely afraid of this.

As the Dust Settles

Her life came apart at the seams in ways she had never agreed to. 

Anne Lamott

As the dust is settling on my Lyme diagnosis, I am scared. I wish I felt braver.

As we get information a little at a time about this long, crooked road in front of us I am just trying to keep track of the pieces that seem to be coming apart left and right so that we have them when it’s time for mending. Who really ever agrees to the ways our lives come apart at the seams? None of us. It’s not usually our choice. I suppose what is our choice is what we do with the pieces and how we mend them.

Fear has lost so much ground in my life. As a young girl, I bought into the lie that control can manage fear. I ordered my heart for control. But now I know there is only one thing bigger than fear: Love.

Still, fear has a cozy little familiar spot in me where it can get in and grow. Fear left untended grows much like the bacteria that is crippling me. It invades every tissue, every nerve, every joint, every vital organ. It can drill through my healthy places and burrow deep.

My Wasteland: Lyme Disease

In this wasteland

Where I’m living

There is a crack in the door filled with light

And it’s all that I need to get by

In this wastleland where I’m living

There is a crack in the door filled with light

And it’s all that I need to shine

(Need to Breathe, Wasteland)

Last week, we were plunged into a wasteland. It was like a sinkhole that opened up and swallowed me whole.

I’ve been hiding ever since. I’m not hiding because I don’t want people to know. I think I’ve been hiding because when the sinkhole collapsed around me, I realized I could barely breathe. I needed to breathe slow and steady. I could not afford to lose any oxygen screaming or panicking. Or fending off constant advice, misinformation, or well-intended minimizing of how serious this is for us. There is only so much air down here and we need all of it.

Tremors, Bike Rides & Learning to Leave

I live in the most beautiful country in the world, I thought. I seriously gulp in the air and my whole body does a sigh of longing and contentment. 

I was riding in response to the way my illness is changing my body.

The tremor set in again today. Sometimes it stays all day and sometimes a few hours. It disarms me. My head wobbles and bobbles unnoticed to others. But because its my head, I notice every movement.

I rode to remind my body, soul and mind of strength.

I rode to retrain my motor memory. Body, you are strong. Remember this. Don’t forget it.

I rode so not to lose the strength and mobility my body has now. I rode in response to fear of losing more.

I rode to delight in the day.

I rode to notice beauty rather than dwell on weakness and fear.

I rode to pretend I am who I always was.

I rode to distract myself from the shaking and the unwelcome firework show my nerves were putting on.

But I finally stopped riding and pretending and distracting. I sat on the rocks and watched the water and canoes float by on the river.

My body trembled and I didn’t try to stop it.

I thought about how I have always been a stay-er. In relationships, churches, jobs, with cell phone companies and difficult tasks. I have stayed way past when I wanted to leave. Maybe this is good for character. Maybe I should’ve learned leaving before now. Who can say? It doesn’t much matter to me now.

My illness is teaching me many things. Gentling me. It is also teaching me that this might be a season of realizing I have learned to stay. This is not a gap in my formation. I’ve been a stay-er. I am now learning about leaving and letting go. Maybe this is precisely because I have learned to stay. Richard Rohr talks about something similar here.
Its teaching me to live more open-handed perhaps. Sometimes I’m too weak for grasping.

But in this beautiful home, neighborhood, city, bike path, country – I’d like to keep on being a stay-er. You, beautiful places, give me somewhere to stay as I’m learning to leave.

PS. It was also fun to be a rebel :) and ride without a helmet. So much more relaxing and peaceful.