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?
