Unicorns and Zebras

Unicorns and Zebras

I’m a unicorn because my mom was a zebra.

Mom was diagnosed with Neuroendocrine Tumors (NETs) formerly known as Carcinoid Cancer. The NET community adopted the zebra as their mascot because in medical school budding physicians are told not to default to the “zebra” (rare) diagnosis and instead consider the “horse” (common) diagnosis as most probable. NET communities say, “sometimes it IS a zebra, not a horse,” and often it takes many years of misdiagnoses before a NET patient will receive an accurate diagnosis.

Mom had a good overall prognosis initially and treated her NETs as a chronic disease rather than a terminal diagnosis. We knew that she would likely die with NETs, not from NETs. In her final two years we were keenly aware that her condition was worsening and that the likelihood of many more years was lessening. We began to feel the impending doom of death lurking around the corner, and instead of shying away from it or hiding it, we talked about it.

Mom wanted very much to journey publicly- demonstrating how her faith carried her through the trials. Her willingness to share most of the details created a platform to embrace death and dying in a public forum of sorts. After Mom died, I chronicled my grief publicly for the same reason – to be an example of what grief looks like and to give other grievers someone in their life, or at least on social media, that they could identify with.

To reduce or remove the shame and taboo of open discussions around death, dying, and grief is my goal. That makes me a unicorn because it is still a medley of topics that make people uncomfortable. The COVID-19 pandemic shifted the discord as a whole (to my desired end) but there are still those that find it repulsive or too painful to consider.

There were many times Mom and I would publicly share how grateful we were for her NETs diagnosis then catalogue the reasons why, but becoming a unicorn in and for the End of Life space has to be one of my favorite reasons.