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.

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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.

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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.  

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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)

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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.

Ryan, Grief, & Love Batting Last

There is something about the capacity to love 
that is as connected to sorrow as it is to joy. 

Jane Herring

On Saturday, in the middle of her grief and mine, a friend and I talked about the strangeness of grief, and how gifts and losses live co-mingled in it. It is hard to wrap your heart around this when you are in it. She spoke of the strange, beautiful, comfort in a funeral where steel drums and weeping shared the space. It struck me that it was the perfect way of expressing the juxtaposition of grief and hope that somehow wrap around one another in mourning. The sounds of sorrow and hope, the weeping and the drumming, were more than enough to hold space for both the enormous heartache of the mourners as well as their seeds of hope. 

Time passed after his death. Her heart had softened, and she has grown strong. She will always be lonely here without him, but she loves her life again. That’s proof enough for me that love is sovereign, that most of the time, love bats last. And this is what we have to offer from our grief: a promise that we do endure, and that out of the wreckage something surprising will rise.  

Taken from Stitches by Anne Lamott

My brother died 12 years ago today. I miss him. Always. I miss his space in our world.
But I have also grown strong and gentle at the same time because of it. I have no doubt now that Love always bats last.