A cascade of tears streamed down my face last month as I watched my eleven-year-old granddaughter’s beautifully shrouded body lowered into her grave. The somber silence was pierced by her mother’s unfiltered, anguished sobs. Her younger sister sat stoically by my side, her stiff body tucked under my arm, eyes downcast, jaw clenched, and mouth drawn into a grimace. Grief is not one-size-fits-all; we were all experiencing loss and grief, but differently, and expressing it very differently. Grief is also not a one-time event, but a process of unfolding the soul and folding into the soul the experiences and emotions that make us fully human.

Between birth and the grave, we all experience many other “smaller deaths” along the way—the loss of a relationship or marriage, the loss of a job, the loss of health, the loss of dreams. I’ve had my share of painful, difficult losses, but over the last four years, cancer—my own ocular melanoma and my granddaughter’s glioblastoma—has taught me much about grief. Writing about grief while in the midst of profound loss makes it even more palpable; there is no room for glib “Pollyanna” attitudes or flimsy platitudes. Grief is real and raw: an unpredictable rollercoaster, and a messy but necessary process. We all navigate grief differently, but we must go through it to find healing; avoiding grief sabotages and delays our healing.

Loss is an event, sometimes traumatic, with a “before” and “after” that are unalterably different. We have all experienced loss with the shocking diagnosis of ocular melanoma, with treatments that leave us impaired to varying degrees, and for many, with metastatic disease. Grief is the internal response to loss, with a swirl of emotions such as sadness, anger, despondency, anguish, anxiety, and fear. Mourning is the way we externalize and express grief, such as shedding tears, telling our stories or sharing memories, enacting meaningful rituals, or creating memorials. Loss without grief diminishes what was lost; grief without mourning stunts the emotional process; mourning what was lost creates space for other emotions such as peace and joy, creating emotional traction to move forward.

While we are blessed with outstanding medical doctors and researchers who offer us amazing treatments for ocular melanoma (OM), many of them do not address the physical and emotional impact of OM on our lives.The losses associated with OM are varied and countless. Some of the losses are physical: the loss of vision; the loss of an eye; the loss of eye health; the loss of time that gets devoured by medical appointments; for some, the loss of a partner or marriage that does not survive the storm of cancer; the loss of ability to drive, work, or continue a favorite hobby. For some, there are huge financial losses due to the expenses associated with surveillance, travel, and treatments. For just about everyone, there is the loss of the “expected” future, and for many, a sense of paralysis in trying to plan for the future.

Emotional losses can feel even more profound; the diagnosis of this rare and aggressive cancer is a gut-punch, tipping the axis of our interior world. An illusion of “certainty” or “control” is stripped away, exposing an uncomfortable vulnerability about life and a persistent anxiety and uncertainty about the future. For some, fundamental existential questions surface that beg for satisfying explanations or answers. For many OMies, fear and anger steal joy and peace, and the loss of the relatively carefree life they once enjoyed is irrevocable. Emotional losses can be overwhelming and exhausting, draining energy and limiting capacity to do life as we knew it. Many of these emotional losses pile on immediately, crushing the spirit, and we wonder from underneath the pile how to find our footing to move forward.

Ironically, the way forward is through grief. Many are familiar with the “Five Stages of Grief” identified by Elizabeth Kubler-Ross: denial, anger, bargaining, depression and acceptance. However, these stages are not a neat linear process, as some might picture it; they are an unpredictable, non-linear, circuitous process. Instead of a neat line, the jumbled, tangled emotions more closely resemble a messy wad of string. Grief zig-zags throughout our experience of OM, first with the diagnosis, then with treatment, then with every new loss along the way. Every new development with inherent losses in my OM journey, and the journeys of other OMies I’ve befriended, prompts me to grieve and reset in coming to terms with this unpredictable, rare cancer.

Our culture does not do a good job of honoring grief. There are some cultures that do better, with grief-related mourning rituals, giving grief it’s rightful place in our broken, human experience. Some of us have been part of subcultures, like family systems or religions, that also do not give space for grief, or for that matter any emotions we might label “negative.” So we stuff our emotions, power on to carry on, and distract ourselves with work or busyness—all to avoid grief. But if grief is numbed, all the other emotions are also dulled in their expression.

Grief needs a voice; if silenced, it sometimes it comes out sideways instead, as anger. depression, bitterness, envy, or resentment.
If we try to deny or avoid the messy emotions of grief, determined to be “brave”, “strong”, and “resilient” either for ourselves or for the sake of others, the emotions of grief eventually overcome us like a powerful wave with a huge undertow, and the grief process is compounded. But if we allow ourselves to be fully human, allowing ourselves to honor and express the fully-human emotions of grief, the process of grief and mourning leads us to healing and acceptance.

To be sure, there are obstacles to grief that we encounter. In my own story, there were other significant emotional stressors in my life at the time of my diagnosis; the cumulative effect was that I was emotionally overwhelmed. The external stressors were in the way of letting me grieve the cancer diagnosis (and its impact on my family) the way I needed to at the time. The emotional stress took a toll on my physical body. I was completely exhausted for four months, no matter how much I rested. I needed a place to process everything that was happening in my life. Therapy, including trauma therapy, became a safe place to address the upheaval in my interior world, grieve and mourn my losses, and find new footing.

Another obstacle to grief is expectations—our own, and other’s. I expected myself to bounce back after treatment, and I sensed that others wanted me to, also. So I kept trying to go back to “normal,” but “normal” had permanently changed—the cancer Dx brought with it a complete paradigm shift internally. I needed to change my expectations of myself regarding my physical and emotional energy, and my capacity to deal with vision changes that impacted me daily. Finding a “new normal” meant grieving my losses and accepting those vision changes and the accompanying lifestyle changes they required. Letting go of those expectations created space to

practice self-compassion ask others for help, and receive grace to live within new limitations.

We are relational creatures; grief and healing happen in community, where the witness of others provides with-ness in mourning. After diagnosis, I felt isolated, not knowing anyone who could understand or relate to what I was feeling. However, I went to an ACIS OM conference four months after my diagnosis and found a hope-filled, life-giving community of people who shared my experience, understood without explanations, struggled with similar fears and losses, and were living life as fully as possible after diagnosis. I was also introduced to a courageous and compassionate OM community on Facebook. I had found my “people.” I was no longer isolated; my grief had witnesses who offered with-ness in presence, understanding and prayers. Participating in the community of OMies has provided a pathway through grief.

Grief isn’t something we “get over”, with a neat beginning and end. Instead, it is an emotional process we go through and are changed by as it becomes woven into the tapestry of our lives. Giving ourselves permission to grieve our losses, and make meaning of them, can create new attitudes that propel us towards unexpected gains. Grieving my losses with OM has opened my eyes to what I’ve gained from OM: an awareness of my vulnerability; increased capacity to live one day at a time; increased intentionality in pursuing what I value and find life-giving; healthier boundaries with myself and with others; and greater attentiveness to spiritual disciplines that keep me grounded, and provide peace, comfort, hope, and joy.

Here are some perspectives and practices taught by grief that have helped me over the past four years:

1. When encountering an unexpected turn of events, my mom always said, “We are surprised, but God is not.” That has been my anchoring mantra for decades as I have dealt with various traumas in my life. Whatever a day holds, I know God got there first, and will walk with me through it. He is already in every tomorrow, and He is my source of comfort, strength, endurance, and hope. With that perspective, I find freedom to live one day at a time with the uncertainties of ocular melanoma.

2. At the time of my diagnosis, I adopted a mindset that cancer is only one slice of the pie-diagram of my life. Cancer doesn’t get to be the center of my attention. I have to contend with it, but I still get to keep doing the other things in life that I value and enjoy. Even as I have grieved, I have also expanded other aspects of my life with more things and people that I love.

3. Living with the specter of a life-threatening cancer has helped me to re- sort my priorities and my people. “Time” is my love-language, and I prioritize time with my daughters and grandchildren more than anything. I choose my commitments carefully, seeing time as a precious commodity I “invest” rather than “spend.” I don’t have time for people who drain my emotional energy, or are toxic, so I have changed my relationships and boundaries with those people. Some of those people are unavoidable, but my boundaries protect me.

4. I practice thought boundaries. I choose to live a life governed by Faith instead of Fear. I listen to my fears, and then find the reassurance I need to answer them. The surveillance schedule of scans can seem daunting; rather than focus on possible negative outcomes, I choose to regard scans as an opportunity to be assured that the cancer has not metastazed—and I celebrate afterwards! If the day comes that scans show otherwise, I will cross that bridge when I get to it, with the help of my doctor and caregivers…but until then, I don’t have time to be consumed by fear.

5. I practice self-compassion. If I’m tired, I choose rest. If I am sad, I let myself have an ugly cry. I listen to my emotions, let them tell me what I need, then release them. Or, I can temporarily put my grief in a figurative “emotional container” and put it on an internal shelf while I do something life-giving.

6. I practice life-giving activities: I am in the land of the living, and I choose those things that add value to my life or bless the lives of others. I start my day with spiritual food that nourishes my soul: reading, meditation, prayer, and reflection. I spend time daily with my elderly father. I make time for lunch with a friend, and a bi-weekly women’s gathering in my home. I enjoy my puppy who smiles, kisses, plays, and takes me outside for walks. I taught myself to crochet and made 7 blankets for my grandchildren in 6 months—releasing a steady flow of all the feel-good endorphins.