Household Resilience

A couple days ago, Ben wrote a blog post about his experience of Myalgic Encephalomyelitis, the medical term that is more commonly known as Chronic Fatigue Syndrome. It's a disease he's had since he was 10 with periods of remission and relapse. In remission, his body responds to regular activity in appropriate ways. In a period of relapse, his mitochondria don’t produce ATP (the molecule that cells use for energy) very well. The impact means that regular activities (climbing stairs, reading a book, going to a social gathering) can be really challenging due to brain fog, muscle aches, and inability to rest.

(You all can read more about it from him here: http://benyd.com/the-illness-behind-the-curtain/)

Sometimes years go by without a significant flare up; sometimes weeks or days. Throughout our time together, he's had at least four relapses (periods of sustained flare ups) - some lasting months and some lasting years. Sometimes we could plan for a minor flare up, like needing an extra day or two of rest after travel or an exceptionally busy day, or taking extra supplements and some rest before and after getting a vaccine. Sometimes relapses happen due to stress or unknown circumstances…and those you can't plan for.

By and large, we've tried to keep the household running as “normal” by keeping up with community commitments, social engagements, and household responsibilities. But there's always a negotiation around trade-offs - if Ben does x, y, or z, what will the price be later? And during a relapse, trade-offs can happen for the most regular of things - playing catch with Michael, going to a birthday party, running errands on the mainland, bringing wood in for the stove, working on a house project. Sometimes, there’s enough energy in the tank for those things. Sometimes those tasks fall to me (except for the fact that I haven’t mastered any woodworking skills or learned how to operate a chainsaw…yet). And sometimes, Ben pays the price, knowing the bill will come due with interest.

Some of the accommodations we’ve made for our household we set a long time ago. Back when we were both in ministry together, we intentionally job-shared because doing so allowed for an enormous amount of flexibility in how we spent our time and managed our household energy and capacity. It’s part of the reason I don’t work now - so I can be available for the unexpected childhood illnesses and manage the work of the household.

What has become increasingly more clear, especially in the midst of this particular relapse, is that we’re in another period of having to adjust our patterns and accommodations - both for when the flare-ups are acute, but also when the relapse is long and lingering. Part of that is looking at how we restructure our own family rhythms and activities (more meals that are prepped ahead of time, setting up regular playdates for the kids), part of it is figuring out what Ben needs to be healthy (rest, medications, etc), and part of that is being better about tapping networks of friends and neighbors. 

A picture of our solar install - a way
we are developing a resilient system in our home.

For me, this isn’t just about finding better ways to survive, but about creating systems of resilience that can hopefully facilitate and nurture other resilient systems. In permaculture, you design your landscape not for optimal conditions, but for the extreme conditions. When the drought comes, how will your plants get water? Perhaps you’ve dug some swales, which slow the flow of water through a landscape on an incline, or you’ve constructed rain barrels which make use of water that would otherwise go somewhere else other than your garden. You can practice this in your home as well (we use heat pumps and a wood stove so when the power goes out in the winter, we can stay warm; we’re also installing solar on our roof to mitigate against the frequent interruptions of power service). 

It’s no different when it comes to household capacity - what systems do we put in place to create resilience, so that when relapses or flare-ups happen, we continue to have capacity as we parent three young children in a place where often there is an extra layer of challenge (ferries and boat schedules are great and they are not, all at the same time). There are lots of terms for this: building a village, mutual aid, finding your flock, etc. Part of the work is about being able to organize the resources, some of which are at our disposal, into a system that works.

We have a vision for what we hope will happen with this land - about creating a place of refugia (a place where life thrives in the midst of inhospitable conditions) for ourselves, our community, and our non-human kin - doing so in a spirit of joy and hospitality and deriving grounding for this work in the Celtic stream of the Christian tradition. (Some of the language I used in my permaculture report is that we’d also be a place of community and connection – an island of sanity on an island in Casco Bay – that fosters hope for all beings).

We’re not there yet; I like to think that we’re planting a lot of seeds, but finding ways to work on Ben’s health and wholeness is the highest priority right now, and naming the reality of life right now is the first step in making that happen.