I have found that grit and grief go hand in hand, just as water stains the sand. Chronic illness is the water, threatening to pull you from the shore. Sometimes you drown until the water spits you back out, while in remission you barely notice the tide in the distance.
When Crohn’s disease took over my 20-year-old self, I drowned, letting it overwhelm my hollow and sore body. Nearly 10 years later, my fight against Crohn’s is still passive. I let the medicine do the heavy lifting while I work toward an uneasy acceptance. I respect the sea, and I take my medicine so it does not overtake me. Deep down, I know the alliance is mine to lose but not mine to break.
This past year, my mast cells—the cells that signal your body to go into an acute allergic reaction known as anaphylaxis—malfunctioned, resulting in constant emergency room visits for uncharacteristic anaphylaxis, followed by weeks of severe cardiac and neurological symptoms after eating. It’s still unclear if a fluke medical episode awakened a dormant mast cell disorder, or if getting control of the autoimmunity linked to my Crohn’s disease will end this torment.
In the meantime, my activated mast cells push back against medications and release new debilitating symptoms and related conditions when they’re angered. After months of treatment, I can now eat a few more foods and no longer need to eat wearing an oximeter. But I experience mild anaphylactic symptoms in response to certain fragrances, cleaning chemicals, fabrics, hot water, changes in temperature, my cat and other animals, and various other random things. I am swept away from everything I love, redirected until I say, “Fine, as long as you don’t take this.” The mast cells take it anyway, and when I am left with nothing, I am redirected once more, with no promise of a dry shoreline to return to.
And yet I refuse to drown. My time sinking at sea taught me how to navigate the medical system and to accept losing a future I will never know. I cling to rocks and build makeshift boats, never resting for a second so my mind and body do not succumb. Over the years, the water silently built grit within me. Fear is no match for grit, so while I hope for a dry shoreline, I am ready for a life swimming among the waves.
Eryn Murphy
Raleigh, North Carolina