*Featured Images: Grey at Heart By Jennifer Shannon
Grief and the Broken Body
By Meghan E. MacNamara
“They say time heals all wounds, but that presumes the source of the grief is finite.” ― Cassandra Clare, Clockwork Prince
I was diagnosed with multiple sclerosis in 1997 and felt nothing of the disease’s wrath until 15 years later when disease progression made up for lost time.
I’ll tell it this way.
In 2009, I attended the inauguration of President Obama. I walked around Washington DC that weekend–miles and miles. I wore heels to an inaugural ball, got tipsy with wine and sheer joy that we accomplished what we set out to do. I danced all night. In 2017, I tried to avoid any media attention of the Trump inauguration for many reasons, but the most personal and most painful was the comparison – stark between Obama and Trump and as stark between my body then and my body now.
Now, I can barely walk with a cane and often weigh whether to cave in and use a walker or wheelchair. Now, I cannot wear my favorite boots thanks to my leg weakness and balance issues, and now, I can’t dance, jump, move quickly – even out of the way of oncoming traffic should that ever be of concern – and often, I can’t walk on uneven surfaces like Washington DC streets without assistance.
In nine years, I’ve lost my body.
This inauguration triggered a type of grief the unaffected may never fully understand. But they should pretend that it weights them like it weights me, because it is too heavy to carry alone. I feel this isolation most when people trying to empathize say, “You poor thing” or “You’re so brave, such an inspiration.” Bearing witness to grief must exclude pity; it is not inspiration.
Let’s dispel the myth that grief happens only fleetingly in the context of chronic illness. It is not as simple as saying, patients go through five stages of grief once and only once. Each loss is something new to grieve.
When I could no longer do yard work, I grieved.
When I could no longer drive distances, I grieved.
When shoveling snow became impossible and when standing for hours at concerts became unsafe, I grieved.
Perhaps those newly diagnosed with chronic illness grieve only once in the conventional way our culture defines grief, but for those of us suffering from years of physical degeneration, years of losing independence and plunging into isolation, all stages smudge into one — the boundaries bleeding together as we grieve our own skin and our entire sense of self over and over and over again. Though they might try, the unaffected cannot truly understand a process that is this unrelenting.
Our culture mostly considers acute grief born from acute loss, which limits our appreciation of sorrow. Grief is something we go through and something that ends – like a tunnel, where our eyes adjust to the dark and are shocked back to life by the light when we emerge. We do not, however, think about grief as something we can live in and through and never emerge from, a miasma that descends on someone’s every experience like dense fog. This cloud descends each morning as I lace my sneakers, catching a glimpse of my beloved boots with their tiny one-inch heel or my favorite flats that have no ankle support sitting in my closet with an accumulation of dust on top.
Our experience of grief has boundaries. Even if the able-bodied briefly lose function of some vital body part, that loss is temporary. They will return to a body that mostly cooperates, one that is not always in the process of losing itself, with the person’s sense of self shifting like the reflections in a kaleidoscope with each new loss. Even now, though I use a cane in daily life, I’m unaffected and unassisted when I dream each night. I wake up every morning feeling this loss like a fresh wound as I grip furniture and lean on walls just to walk from my bed to the bathroom.
I won’t deny that so much loss has brought some gain. I’ve gained perspective and a new calibration for what I consider important. I don’t care if I attend another conference, get another promotion, publish or present another paper for as long as I live. I don’t care if I never get to Iceland or Tokyo or if my memoir is ever published. What I care about are the relationships and activities that feed my resilience, stretch my gratitude and help me love harder in the time I have left. I feel myself edging toward an end almost daily. I hold onto what feels right, deep, and solid. And still none of this dampens the flame of grief or makes my losses easier to cope with. It only helps me rise up from it – a little more stooped each time.
Resilience happens in spite of loss and often in spite of deep isolation. No physician, nurse, physical therapist, nutritionist, or other clinician I’ve encountered in 20 years of MS progression came close to knowing this pain to its marrow. Few understand the basic concept that sets this type of grief apart from acute grief, which has more common triggers like a song or a photo… grief that ends.
When they have pretended to know, when they have said, “Yeah, this sucks” rather than “Keep fighting,” I have felt less alone. When my friends and colleagues have ignored my awkward gait completely rather than commenting, “Wow, your legs are bad today” or worse, “looking good!”, I think they might at least understand not to draw constant attention to my loss.
But the lack of moral imagination unhinges me. They cannot (or will not) pretend to understand. If they work in healthcare, they will focus on addressing challenges, often bright-siding my struggles before they turn attention to moving away from darkness and into the light of what they consider healthy adaptability. Clinicians have told me, “You must adapt. You have to keep going.” And I wonder if they understand that to someone who grieves losses constantly, there are worse things than death. Do they understand that I ask myself whether it is time to let go at the crossroads of each new loss, that – for now – I recalibrate, re-evaluate, and consciously decide to stay alive?
The truth is that they often don’t understand the importance of lingering for a moment on grief. My losses, though I’d unlose them if I could, have taught me a great deal. I’ve become a better advocate, and though I still apologize more than I should, I ask for accessibility in a world that does not readily provide it. When I decided to grieve my life as I lived it, I found that I couldn’t get worked up over trivial matters any more, which makes me a better daughter, wife, and friend.
Everything I choose to do I choose deliberately and with my limitations in mind, which makes most of what I do now more meaningful. And though I look at the boots I can no longer wear with a deep ache of grief because they represent every loss MS has dealt me, I also feel a small flicker of hope that comes alive when I remember where I’ve come from, what I’ve come through and that, surprising myself, I’ve chosen to live with constant, relentless loss. Lingering on loss is learning about my past and my future.
For me, that long moment is an act of witnessing, of paying homage to a version of me that I no longer recognize, a version of myself that died as I became the person I am now – someone who, though she may have risen like a Phoenix, cannot forget the ashes of loss she rose from. I implore the able-bodied reading this – we can’t ignore the soot, or the resurrection is meaningless.
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