To practice into care is to practice into paradox. Even as this practice embodies a remembrance of our inherent interconnection, so too does it elicit a confrontation with our edges. And in these murky spaces between connection and boundary, I find myself wading in inquiry. The questions are many, however two are feeling particularly sticky for me this week:
How do we navigate encounters with resistance to care we may extend?
How do we grapple with the ways in which our care is imperfect?
These questions feel alive as I reflect on my experiences of both receiving and giving care in contexts that were anything but clear. I am writing this piece not for clarity on answers, but rather to better understand the contours of questions we will inevitably encounter in our relational lives.
As a teenager and into my early twenties, I experienced multiple hospitalizations and endured various forms of intensive treatment for an eating disorder. At different times I experienced a constellation of hospital stays, weekly health clinic visits, intensive outpatient programs, a residential program, and regular sessions with multiple therapists. The intensity varied, however for several years, some level of treatment formed a constant in my life. There were times in which I acknowledged the need for these interventions. I could understand the risk to my health and the risk to my life that my eating disorder created (even if at times I felt ambiguous about the consequences of these risks). There were also times – when the eating disorder was strongest and thus when the level of treatment was highest – that I resisted the care that my parents and health providers were imposing.
In these moments, what I felt was anything but care. What I felt was an attack on my agency. Their perception was that my voice and choices were distorted by the eating disorder. In return, I felt that whatever I would express in terms of my physical or emotional needs was dismissed – at times partially and at times fully.
The severity of this experience varied according to the type of treatment I was receiving. I am deeply grateful to have worked with amazing therapists, a brilliant nutritionist, and to have had (and continue to receive) invaluable compassionate accompaniment from my mother. In contrast, I also experienced treatment protocols whereby I felt completely silenced – perceived and treated as a broken, self-destructive object that needed fixing.
In these extensions of care, which ranged from fierce compassion to dictatorial, there were many times I struggled and resisted. In this resistance, there was a significant difference in how I felt care and pushed through the resistance my eating disorder put forward. This difference was the felt sense of love, compassion, and humanization in how care was extended.
There were moments my resistance was met with harshness and berating. My attempts to express the raging discomfort I felt in my body were discounted. My emotional experience, my agency, my personhood – all disregarded. This led to fights, fractured relationships, sometimes even attempts to run away.
There were moments where my resistance was met with patience and compassion, a recognition of the challenges I was experiencing and a holding firm to what would support my recovery. I felt seen and held, and often the conversations that unfolded from these instances bolstered the relational fabric of care and supported the progress of my recovery. In these moments, I truly felt care, even as I was pushed beyond what felt comfortable. In fact, it was this quality of care that enabled me to do so and thus enabled my recovery.
Part of my recovery journey has entailed a recognition for the ways in which my individual experience of an eating disorder is an expression of family, cultural, and structural dynamics of hurt, harm, and injustice. Carrying this lens, scaling from the individual and relational levels to the systemic, I am brought to a recognition that in the work of justice and liberation, there will be times in which our extension of care will not be perceived or received as such. Our work toward assuring collective wellbeing – which entails a confrontation with powerful and destructive individual and collective patterns, shaping, and systems that prevail in the world we live in – will be met with resistance. There are many ways in which we can meet this resistance in the name of building a more just and dignified world. Without any of these invalidating different strategies, I find myself wondering:
- How can we notice when our extensions of care diminish or uplift the humanity of those we are caring for?
- What possibilities for transformation unfold if we meet resistance with fierce compassion?
- How do we nurture the patience and build the resource to accompany and create the conditions for resistance to transform over the long term?
During the first six months of the COVID pandemic, I moved to Paris to accompany my grandmother through the French confinements. A remarkably strong woman, up to that point she was living in her apartment alone. However, as a 99-year-old, who turned 100 one month into the pandemic, it was clear she needed additional support through the strict confinements that characterized the early COVID response in France.
In my mid-twenties at the time, I had no previous experience as a live in carer for someone in old age. But more than a carer, I was a grand-daughter who wanted to do her best to ensure the safety and wellbeing of her grandmother, to take care of her as best I could.
My grandmother was often in significant discomfort and pain. In an effort to ease her discomfort and to attend well to her needs, I took over many of the (by then diminished) tasks she would have previously done. Much of this was to do with meals. I would prepare her food, set the table, serve her, cleat the table, and do the dishes – all tasks she would have done before.
I thought this was helpful until one day she reflected something to the effect of, “Before you came, I knew where things were in the kitchen, and now I don’t remember. I used to be able to do certain things, and I can’t anymore.”
With all my good intentions to do as much as I could to care for my beloved grandmother, I ultimately diminished her agency. There are times I question the extent of the repercussions of this, how this might have contributed in certain ways to her decline. For when we cease to practice certain actions, we lose our capacity to do them. And for such an elderly person, this loss is permanent.
I wish I would have known better. Rather than do so many things for her, I wish I would have accompanied her with greater attention to providing assistance while creating conditions for her to continue moving and doing as she would have before. There were times we did this well. For example, we would prepare vegetables together to be cooked, or I would set pots and pans in place for her to be able to cook simple things without needing to lift and move objects that were heavy for her. There were many other times I defaulted to doing too much, motivated simultaneously by a desire to care fully for someone I love as well as a strong inherited tendency toward control.
It has been over two years since my grandmother passed away. I remain ever grateful for the many wonderful moments we shared during the time we lived together in the final years of her life – playing Scrabble, listening to her stories, sharing songs we loved, going for outings along the Seine (once the confinement restrictions eased). I also often experience doubt and regret for the ways in which my care was imperfect.
From this experience, I am trying learn and grow my care practice – not to strive for a perfect care, but to care in more helpful ways. Again, I wonder…
- How can we extend care in a way that uplifts the agency and dignity of those for whom we are caring? For our care not to be of a quality of doing for, but of accompaniment?
- How can we presence the patterns and shaping that contribute to the ways in which we care, some of which may be motivated by love and others that may be motivated by fear and control?
- How can we approach and embody care with transparent reciprocity – to clarify needs of individuals and in relationship, and to revisit these needs for if and when they evolve?
Placing these two stories alongside one another, I am struck by the parallels. In the same way I received care through control in my mid-teens, years later, I replicated this pattern. This is a simplifying observation, as there were many counter-examples both to the care I received from my parents and to the care I extended to my grandmother. Regardless, the parallel is striking, and invites a deeper reflection into how the ways we practice care in the present are shaped by our previous experiences both giving and receiving care.
If we seek to co-create cultures of care in our relationships, our communities, or organizations, and ultimately our world, must be willing to grapple with the complexities and paradoxes that shape how we experience care individually and across scales of relationship. My wish and my hope is that this grappling can be done with curiosity and compassion; in service of deeper understanding of self, others, and the systems we inhabit; and in the company of caring community to accompany our growth and healing.
The inquiries and reflections in this piece are elicited by and drawn from my participation in the RISE for Relational Facilitators training from the Courage of Care Coalition. I extend deep thanks to Brooke D. Lavelle and Maha El-Sheikh for crafting and holding this beautiful space, and to my fellow training participants for their reflections and contributions to co-creating the experience.
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