“Grief is our refusal to live small”

When a parent is given a life-limiting diagnosis for a child, when the child is 6, you begin to grieve that day. We hope. We pray. We fight. We live. But death is always ‘there’, as it is for every single one of us.

Grief is a uniquely creative process. While it is certainly experienced in the mind, it is not confined to the mind. Relative to how it looks, it may be helpful for people to know that it does not always look like we think it should.

My daughter Serena was 1 of 410 people who died from cystic fibrosis in 2018. That year, the median age of death was 30.8 years. At the time of her diagnosis in 2006, Serena’s predicted survival was early 20’s. Nearly 20% of the deaths in 2018 occurred before age 20. Serena was 19.

In the aftermath of my daughter’s death, it was the writings of Francis Weller that informed and illuminated for me not only the acute and profound grief I was experiencing, but the grief I had been actively living since 2006.

“Grief is subversive, undermining the quiet agreement to behave and be in control of our emotions. It is an act of protest that declares our refusal to live numb and small. There is something feral about grief, something essentially outside the ordained and sanctioned behaviors of our culture. Because of that, grief is necessary to the vitality of the soul. Contrary to our fears, grief is suffused with life-force…. It is not a state of deadness or emotional flatness. Grief is alive, wild, untamed and cannot be domesticated. It resists the demands to remain passive and still. We move in jangled, unsettled, and riotous ways when grief takes hold of us. It is truly an emotion that rises from the soul.”

Francis Weller

Like a twelve-year, low-grade fever, the force of grief would simply not allow me, or us, to wallow in self-pity, deadness, or darkness. And yes, my daughter Serena was grieving this entire time, too; grieving her mortality; grieving her father; grieving her sister and me; grieving a life interrupted; grieving for everyone she knew and loved. My daughter Serena refused to live small.

How could I confine her and her spirit? I could not. Life has its own agenda and it was showing us how to live it. Despite the judgements and ridicule of some, we followed each and every internal nudging– we moved in “jangled, unsettled, and riotous ways” because that is what grief does to a person who knows they are dying — and to a mother who refused to let go, until letting go was the only sane and responsible thing to do.

If you allow this life force to direct you, this is what grief actually looks like: leaving a job, starting a small business, severing relationships, changing households, moving to another part of the country, learning mindfulness, going back to school, overcoming life-long anxiety, practicing gratitude, writing books and poems your friends think are stupid, learning new hobbies, following your curiosity, turning over stones, learning new skills, pushing your own boundaries because you know, deep, deep down, you better get ready and have the endurance for what’s coming our way. Death is not the end of life, but it’s continuation.

In truth, grief is not something to explain, or analyze, but to live and witness without judgement. This is entirely your choice, and you can certainly bail out at any time, but if you’re lucky enough to grieve with a friend or family member, your only function is to respectfully stand-by, quietly observe, and hold a living-vigil for this broken-open human being. That’s it. They don’t need to be restored, rescued, or glued back together– they are literally regenerating, right before our very eyes.

Next time you see someone on social media, or in your social circle doing something that rubs you in a manner that causes you to wonder “who the f**k does he/she think they are”, the answer very well may be “someone who is grieving out loud.” Even if that is not the real reason, it may begin to replace out knee-jerk reaction to mock and ridicule that which we do not understand.

From the outside, it may appear as if they’ve somehow lost touch with reality, are seeking attention, or are desperately ‘searching’ for something — but nothing could be further from the truth. Grief is unconcerned with consensus reality. A person who understands that they are actively grieving (actively living) is more perceptive, aware, and sensitive than they can ever express.

Accordingly, they don’t need judgements or insensitive inquiries. They don’t need your shaming. They don’t need you to rewrite their stories. Unless they initiate it, they don’t need you to problem-solve. They just need your kindness and non-judgmental presence. Grief is a process of the heart; one that if allowed, deeply informs the mind, and transforms every single person brave enough to receive it, from the inside-out.


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