Treatment Update

May is Lyme Disease Awareness Month.

We joined with many in the Lyme community and tied a ribbon (not-so-much lime green:) around our tree and porch post. We also took the kids downtown on May 1st to watch the Calgary Tower and the Langevin Bridge light up green for Lyme disease. We topped it off with milkshakes from Peter's Drive-In. A good night! 

We made lime green rainbow looms. Others had our idea too because a young girl was passing out rainbow looms she made for those who attended the light-up. The kids thought that was pretty cool.

*****

Treatment Update

The Lyme Guy in the States called borellia (lyme bacteria) a sci-fi bug. The bacteria can hide, trick, and evade the immune system. It can morph when needed, it can learn to protect itself from the meds and it can go into a sort of hibernation shell to wait-out medications and then re-emerge when the coast is clear and you think you've killed it all. It is very patient, doing its work slowly but surely. I give it huge props for being smart and resourceful but this just means we need smart, knowledgable, patient, resourceful doctors to outwit, outlast, outplay the borellia. (I do love a good Survivor reference!)

All of this to say, I am happy and nervous about moving into a new phase of treatment. This is my fourth round, fifth month, of herbal abx and supplements. Aside from the first round, I have coped amazingly well. My doc feels confident my body is strong enough to handle the next, more intense, phase of treatment. 

In addition to continuing treatment of borellia and co-infections, this new phase will begin treating the bio-film. Click here for a good explanation of biofilm and why its essential in treatment of Lyme disease. In a sentence, antibiotics can only kill a bacteria when its exposed. If borellia is hiding/living within a biofilm, antibiotics cannot penetrate it and therefore cannot kill it off. Many LLMDs (lyme docs) suspect this is the reason why long-term antibiotics are ineffective for many patients. 

Treating the biofilm can intensify symptoms because the biofilm at least keeps the infection in one place (within the cyst/biofilm) but in treating it, the toxins are released throughout the body. The goal is to release them and then kill them off with the complementary abx. Treating the biofilm is also the first step in treating the cyst form of the disease which can hibernate and wait until treatments are finished then re-emerge, potentially becoming resistant to medications. So biofilm, then cysts. This feels like getting to the nitty-gritty. It feels like progress, forward movement, and this makes me happy and ready. 

I am upbeat and optimistic, hopeful and patient. I also have moments of huge discouragement. Sometimes fear sneaks in too. Discouragement quickly becomes my companion when my memory and mental abilities make me feel like I'm 90. Or when I am not as able-bodied as I want to be. Mostly discouragement becomes fear when I wonder if this is just a little set-back or of I'm on my way downhill again.  

I don't take for granted the ability to show up for Cara's mother-daughter school tea, or volunteer in Evan's class, or streamline my energy to give our girl a special birthday party. I am grateful for good days strung together in a week. But the truth is, I still wear ear plugs around my house a lot. I still can't handle too much touch or bright lights or loud noises. I still lose my cool when too many people (read: 2)  need things from me at the same time. I am still surprised by how exhausted one activity can make me. My memory is worse than ever. And this scares me the most. Our ability to remember, to know feels like such a crucial part of who we are. It seems important for efficacy, consciousness even. My forgetfulness is alzheimer-ish and this scares me and it worries Jason. I have a zillion alarms on my phone reminding me when to pick-up the kids or make a phone call or meet a repair man at the house. The kids bank on me forgetting a consequences (I write these down too). I have lots of lists. I've left a burner on a time or two. I have to be more careful and respond less defensively when Jason calls to check-in or make sure I haven't forgotten this-or-that. 

My doctor seems optimistic that this is not permanent damage to my brain and will improve by the end of treatment. I'm not as confident but trust her experience. Dr. T has needed to remind me more than once that I am still at the beginning. Slow and steady wins the race. 

But in all honesty, it doesn't feel like the beginning. 

For me, the beginning is when I started walking into walls and laying in bed unable to cope with any light or sound or movement. The beginning is when I called my sister and said I wasn't sure what was wrong with me but that I couldn't take care of the kids anymore and would she please come help me? (For me, asking for this kind of help was the ultimate wake-up call that I was not okay.) The beginning is tremors and no strength to use my arms. The beginning is not being able to read books, grocery shop or put articulate sentences together. The beginning is wondering if whatever was wrong with me meant I was crazy or was going to kill me. That's the beginning. I feel so far from that place even though there are moments of these things still. I feel so far from the fear and despair of those days.

When I hear of others dealing with Lyme (and you'd be surprised to know how many people have emailed/talked with me in the past month wanting to connect about their new diagnosis of lyme), I feel very grateful. 

I am grateful my road to diagnosis was nowhere near as long or painful as many others. 

I am grateful for a strong body that has, for most of my life, kept borellia under control. 

I am grateful for a strong body, even now, that allows me to get better.

I am grateful that we have not been alone with the financial and practical burdens of trying to deal with this illness - The soups, the groceries, fruit, the babysitting, the Thursday night dinners that give me a night off every week, the thoughtful notes, conversations, the GF recipes and cooking... These make this mountain look a little smaller. They help me attend to the present inch. 

And perhaps most of all, I am grateful that my parents have made it possible for us to attend to the present inch - to rest and pour our energy into recovery instead of worrying about how we will pay for treatment. One of the biggest hurdles for treatment to almost all Lyme patients is financial. All treatment is costly and out-of-pocket, even here in a socialized system like Canada. While the choice to stop working brought some financial stresses, I have never had to worry about how we will pay for my/our treatment. I owe this indescribable peace of mind to my parents who have not hesitated for a single second when the medical bills come due. It is impossible for me to articulate how much this has helped us turn our focus toward recovery without the additional, enormous, financial stresses. Its the key piece that allows everything else to fall into place for recovery. I know I would not have the same optimism, patience and hopefulness without it.   

That's where we are right now - still at the beginning that doesn't feel like the beginning. :) Attending to our present inch. Moving forward and making progress, sometimes discouraged and scared but equally (and sometimes simultaneously) optimistic and grateful. 

Ryan & Resurrection: Grief's Container (13 Years)

Easter and I have had mixed reviews since my brother died. I have not always liked this "happy holiday" landing at the same time as his death day. But this year, I am struck again by the possibilities of resurrection to be grief's container. In out of control places and out of control emotions, we often need a containing space, person, place to ground us in the storm that swirls around us. I think resurrection can do all of this and more.

We have these moments of meaning, these moments of substance

these moments when we think "yes, there is a point to this"

And then there are the other moments

The moments of despair

the moments when it doesn't go well

There are the long cold silences

There is that thing that happens when the alarm goes off in this morning and you think "another day"

There is that thing that happens when you are driving to work and you think "why? what's the point?"

There is that small habit that grew and grew until now it's like a destructive pattern

you don't know what to do with it

And so what happens ever so gradually 

if we do not guard our hearts

is that we come to be gradually overtaken 

by this pervasive sense that there might not be a point to it underneath it all it actually is random and pointless

And so what happens is those good, beautiful, true, moving, inspiring moments

the lump in the throat

the tear in the eye

that sense when you embrace somebody and it feels like you're holding the Universe in your hands

Those moments start to feel like they're just little detours

and escapes from how it really is

Which is cold, dark, lonely, and pointless

Resurrection is the opposite

Resurrection says oh, no, no, no, no, no. Those glimpses, those are actually the real thing

They're the thing that undergird the whole thing

Just that moment when that person said that kind word and it ignited a whole new world in your heart

That was just an aberration from how things are

That was a sign, a symbol, a glimpse, a glance of how it actually is

Resurrection says that this is our home and that our home is good

Resurrection says that not only is our home good

but everything about our home that is wrong, twisted, broken, destructive, flawed, and failed

everything about it

whether it may hurt and whether it may be something like cancer that is real

and however big the bruise is

and however much blood there is on the floor

whatever it is

however real it is

and however much it broke your heart

it is, in the end, in some really, really hard to describe way

temporary

That in fact, there is a new creation bursting forth

right here in the middle of this one

and there is a new heaven and a new earth coming together

and that this Jesus, in his resurrection insists that in the conquering of death

he has brought about something new

something you can trust

that whatever is holding you down

whatever feels like it's drowning you

whatever feels like it's a weight chained to your ankle

does not have the last word

That is resurrection

Now, a guy rising from the dead 2,000 years ago

can I prove that happened?

No, no one can

and be very suspicious of anybody who says they can prove that

and be especially suspicious of sermons where people spend 45 minutes proving to you that a man actually rose from the dead

Nobody knows

What we know is there has been a community of people for several thousand years

who insist that something happened

that a tomb is empty

and that when you trust this story something will be unleashed

and unlocked in your heart

and in your life

So yes, it's history

but it's a bigger, better, wider, more expansive understanding of history

So for those who think "What? Come on. How far fetched is that?"

Try it

Try living in this story

Try trusting that all those little glimpses and glances of hope and beauty and truth and light

That they weren't aberrations

They weren't mistakes

They weren't some blip in the system

They were actually showing you what it's really like

That this new life is as close as the breath you just took

and the breath you're about to take

(Taken from The Liturgists - Sunday)

*****

When we experience grief and loss in our lives, we need faith and hope to say more than life goes on. I cannot even count how many times I have heard people shrug off the thing that is strangling their life and say life goes on, not much I can do about it. 

If we are people who believe in resurrection we must learn to offer and trust something deeper, truer, hopeful. But tread carefully. Christians are not known for being safe places for pain be it grief or forgiveness or doubt or... We are too quick with advice, too quick with fixes, too quick with platitudes (see: life goes on, give it to God, you must move on, God's ways are not our ways...). 

Though I usually find it hard to wrap my mind around the possibility of a resurrected God-man and I struggle to see how that impacts my life in a real, human way - Loss and grief make this possible. They are my micro view to understand a macro mystery that really is beyond my understanding. 

Resurrection people must be willing to remain present, conscious of the deaths, the losses, the Fridays in our lives and those around us. The dying places are not a lack of faith, they are the way to new life. Resurrection means life goes on is not what we know or offer. Instead we know that because of this pain, something beautiful will rise from the ashes. Something creative, alive, regenerated, new. We don't offer this assurance with platitudes, we offer it with presence. We stay put with our people in their pain. We trust when they do not. When they have the courage to come clean with their anger, sorrow, doubts - we stay. We stay, we ache, we cry, we make soup, we do laundry, we watch their kids. We say nothing. We say I love you. We say This is so hard. You have a right to this pain. It wasn't meant to be this way. We honor their anger, sorrow, doubts and trust in the resurrection mystery that always brings life out of death. This is our affirmation that we believe in resurrection. It is all that we need. After all, we are not the ones doing the resurrecting. Let's never forget that. We believe in the life breath of God coming into all our broken places and making something new. We stay, we wait and we notice the tiny buds beginning to blossom. Maybe there will be a time when the one we love can't see the buds and we gently and quietly whisper with our presence and our words, something beautiful is coming for you out of this pain. There will come a time when the one we accompanied and maybe pitied will become our teacher about the beautiful resurrection. And then it might be our turn.

There is a catch though. If we want to be the kind of people who point others toward the hope of resurrection in the midst of  their dying, we first have to be willing to see our own pain, Fridays, losses. We have to have sat in our own rubble, devastated and barely able to breathe (there is nothing worse for the broken heart than someone who imagines their own heart whole - so much damage can happen there). Only then can we know and trust that it is not our frenetic efforts to replant, rebuild, quote scripture, or move on that bring healing and life. It is having experienced the surprise and hope of seeing the tiniest buds in the middle of the mess, of reveling in the Mystery of all things being made new. 

When Mount St. Helens erupted, it turned everything around it into a desolate wasteland burned out and covered in ash. But fascinatingly, though the devastation wreaked havoc for months and years on the people and on the land, within only a few weeks, small life began to re-emerge. Not the big stuff. Not mighty trees. Signs of devastation were still everywhere. But looking with hope and trust in the created order of things, you could see signs of life. This is what we do in our own grief journeys and when we accompany others. Yes, we see the devastation, we don't look away pretending it isn't there. Sometimes we sit together in the rubble but as we do, we look for signs of life and nourish them, protect them and wait.

13 Years. 

I see so many signs of life. 

The landscape of my life and heart were forever altered by Ryan's death. But this garden that formed out of rubble wouldn't be here without the loss, the grief, the ashes. 

Resurrection means rubble can become a garden. It doesn't erase it or replace it. The rubble becomes the place where new growth begins. It takes a long time for all of the decomposing and new life to become as full and flourishing as it once was. But we trust in the Creative Nature that holds the world and promises to always keep on bringing life out of death -here and now, not just 2000 years ago. We look for the little promises that life will bloom again and we keep on doing what we do. To keep on is itself an act of faith and hope. 

There are still painful places of my brother's death. I hate looking at certain pictures of him because I see the addiction, the pain and the hopelessness. I miss him. But at the same time, I remember his beauty. 

I remember how artistic he was. He was so incredibly talented. 

He was funny. And sarcastic. But he made me want to be funnier. I tried so hard. This is where I got my knack for a punch line and sarcasm - trying to keep up with him. I see it in Cara too. The total delight when she says something funny enough for even her funny brother to give her props for a good joke. 

He was generous. 

He was loyal and loving.

He was dedicated to basketball. That dream was etched in him even to the end.

He was very tender with the people he loved. 

He often picked the cookie dough out of the ice cream and simply put the rest back in the freezer for the next person.

With me, he was a truth-teller. About what he saw in me and about himself. 

In hindsight, I can see he lived a very real life despite the trauma and his demons. He was never fake. He hated when I was. 

He was a fabulous brother. Couldn't have asked for better. 

You can read my other posts remembering Ryan here.

NECESSARY ENDINGS = NEW BEGINNINGS

Welcome to the new blog!

I am unsure of how often I will post here. But just like with the old blog, if you want an e-mail when a new post goes up, you can enter your e-mail address on the right by entering your address where it says "Follow By E-mail" or just bookmark this new page. Shepherd Snapshots will be made private and the link to this blog will no longer be accessible. 

Finally, I did not allow comments on our old blog but this blog does have an open comment section at the bottom of each post. Feel free to leave your own thoughts and musings!

This phrase, Necessary Endings, has been bouncing around in my head and heart since June but trying to find its way in my life for much longer.

Endings. I think I have seen them as unwanted finality, loss, failure even.
I've written before that leaving or ending is not well-developed in my life. I cling. Hard. In reality, I fight to keep all of the things I have created, built, participated in. I've called it faithfulness. Sometimes it is but sometimes its fear. It is hard to receive anything new (friendships, opportunities, new habits or dreams) when you are so weighed down by every last treasure you've collected over a life.

Lyme has given me opportunities to learn endings and to see they are so very necessary. I am just coming to see that whole endings are maturity not failure. I have had opportunities over the past couple of years to experience endings - some I am proud of and others not so much. My next task is to pay attention and learn how to end well.

Our family blog, Shepherd Snapshots, has mostly been a joy and delight. I have repeatedly said how thankful I am to have pictures and anecdotes to return to with the kids. But our kids are growing up and becoming more conscious of privacy, perception, who they are and how they want to show up in the world. And in a techno world, I want to teach them to be wise with their online profile. They already have this wisdom and hesitation. I want to foster it not correct it. In the past couple of months, when I take a picture, I have heard some version of Okay, you can take that picture but don't put it on Instagram or the blog.  

I started that blog as a way for far-away family to keep tabs on our life. It was fun. I started blogging before we had kids even. Our blog has been a great memory keeper. Shepherd Snapshots also became a place where I learned to use (write) my voice. The power of telling our stories cannot be underestimated in the process of healing old stuff and becoming a more whole human. I am grateful for that little space to write and ramble on about what I am learning and wrestling through and for those of you who have encouraged me in the process. In thinking through our necessary blog ending, I have decided to continue my blog musings apart from our family life. I'm sure motherhood, the kids and a few pictures of us will make their way to this little blog and I'll continue to use my voice as I always have here though separate from telling the intimate details of our family life.

Some of the wordy posts from Shepherd Snapshots have been moved over to this blog and can be found on the right most easily under "Labels". I will move the rest over eventually.

Here I will continue to write and have snapshots (because I still love photos!) of what I am wondering and learning about faith, lyme, motherhood, being human, grief, community, delight, gluten free ... on and on.

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.

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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.