On Onion Tears and Layers of Grief

I do not identify as a chef. I can whip up a salad like you wouldn’t believe, but I tend to shy away from the art of cooking. Still, every once and a while, I pull out the melange of ingredients and produce and spices to sauté and simmer and roast. 

Inevitably, this process leads to a pinpricking of tear ducts. Chopping onions tends to do that. But the tears aren’t solely a biological reaction to the chemical gasses of botanical bulbs—they are also the result of exhaustive fatigue and the grief I tend to feel over an unjust loss of energy.

You see, culinary activity in the kitchen excises a significant tax on my energy reserves. The return on investment cannot always be justified. Hence the salad mixing expertise.

While my parents encouraged my sister and I to cook family meals in our teenage years, the endeavor was never one that brought me much joy. As such, it didn’t feel like a significant loss when I no longer harnessed the energy to regularly create in the kitchen. 

Baking, however, is a different story. My mother is a terrific baker. I was raised in a constant aroma of flour and butter and sugar alchemizing in the oven, causing a deep-seated appreciation to rise within me. I would never claim to be as adept of a baker as my mother, but I garner great pleasure from conjuring a yield of scones or cupcakes to life.

I often bring a stool into the kitchen when the desire to bake strikes me, an energy-saving measure that allows me to extend my personal battery a touch longer. Even so, the process wears me out. 

Twelve years of multiple sclerosis and I still have not mastered the ability to eradicate the layers of grief delivered by the disease. Just as the layers of an onion will always pull moisture from my eyes, I believe the ongoing grief of chronic illness will provoke countless future tears to spill.

The conversation of grief and chronic illness is a popular one. The story of grief is a story of loss. The story of disease is a story of loss. In turn, the story of disease is often a story of grief. A medical diagnosis and the slings and arrows of disease deliver a slew of losses—those of abilities and bodily functions, of a sense of certainty or a conviction for future plans, and, deeply felt, a loss of identity, a sense of belonging in what Susan Sontag referred to as the “Kingdom of the Well.”

The predictable response to navigating grief is to look to the oft-referenced “Five Stages of Grief,” as first introduced by psychiatrist Elisabeth Kübler-Ross in her 1969 book On Death and Dying. There’s Denial. Then Anger. Bargaining, then Depression. All leading to that idyllic arrival point of Acceptance.

When first relayed to me, the five stages were presented as a linear progression—a series of steps one must traverse in order. Many mental health professionals today push against that prescription, speaking more of the Five Stages as a cyclical structure more akin to weather systems than that of a rigid structure of ascension. The fluid reframing is helpful.

Still, I find myself hung up on that last-listed stage of Acceptance. It carries a connotation that grief is something to be processed and put away. The trouble being that the human experience is messier than that. Grief has permutations. Often we find ourselves in whirlpools and eddies where we are grieving the grief itself. What’s more, that grief can be—and often is—passed on to others.

Alternatively, then, let me present to you a different construct through which to consider the permeating sorrows of loss: The Five Gates of Grief. Ideated by Francis Weller and put forth in his books Entering the Healing Ground—Grief, Ritual, and the Soul of the World and The Wild Edge of Sorrow, the five gates illustrate a more expansive image of grieving.

The first gate, “Everything we love we will lose,” encompasses much of the types of loss aforementioned—loss of someone or something we love, loss of home or places we have loved, loss from illness or injury, loss of a life dream. Many of my personal grievances delivered by MS pass through this gate. But it is the other gates that stretch my understanding of the intersections between grief and chronic illness.

The third gate, “the sorrows of the world,” and the fifth gate, “ancestral grief,” expand my perspective to consider the millions of other souls afflicted by multiple sclerosis. According to the National Multiple Sclerosis Society, approximately 2.9 million people worldwide live with MS, with nearly 1 million in the United States diagnosed. MS may be referred to as a “snowflake” disease, a highly individualized affliction, but statistics like this remind me that the medical challenge extends so very far beyond myself.

Ancestral Grief, the untended sorrow of those who came before us, generally encircles more ephemeral losses, those of culture and language and stories and ways of life, but it also ties to what is literally passed down. The epigenetics of trauma, for example. Or even the genetic coding of disease. 

The cause of multiple sclerosis is not definitively known. Researchers speculate a number of factors could point to the source of disease, from diet to environment to a medical history of certain viruses or bacterial exposure. Also listed in the potential contributing factors is genetic make-up, as numerous genetic studies with multiple sclerosis have shown an increased frequency of MS seen within families as a result of relatives sharing DNA. It is the handing down of genes and of grief.

The second and fourth gates speak more to one's personal intangible losses—the places that have not known love and the sense of loss surrounding that which we expected but did not receive. These griefs deliver feelings of aloneness, a diminished experience of who we truly are, and unconscious disappointment. They demonstrate a desire to belong, and to be longed for in turn. 

Living with chronic illness can be a devastatingly isolating experience. The forced rest. The FOMO experienced after having to turn down yet another invitation. The elongated minutes upon minutes sitting in the waiting room at your doctor’s office. Managing the often invisible symptoms of disease. Processing stigma for the visible ones. And the unflinching knowledge that no one else will ever fully know what it is like to live in your skin with your particular affliction.

That kind of grief holds the power to psychologically cripple. Furthermore, it can easily wrap a person in shame, furthering self-loathing and contempt, manifesting in anxiety, depression, or addiction.

I have fallen prey to such grief.

In many ways, I have not stopped.

The five gates of MS grief ebb and flow, but never dissipate. Nor do they deliver me to a final resting place of acceptance. There is no arrival. The disease is ongoing, therefore the work is ongoing.

And thank goodness for that, because the only alternative is death. And I would so much rather be alive, unending layers of grief and all.