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How My Rare Condition Feels Like a Volcano Erupting


My eyes fly open. My gazebo-like rainforest room is glowing red. The bed is shaking, rumbling, then just as abruptly stops. Sounds of thunder/bulldozers/mini-avalanches are penetrating the walls of my room. Outside it looks like sunset. Sulfur. 3 a.m. Day 22.

I tell myself it’s fine. Remember, it’s just earthquakes and lava. Normal. I let out a wheezy cough, turn over. Just another night 1.5 miles from magma shooting out of a rift on the Big Island of Hawaii.

Today, seven years ago I was diagnosed with autoimmune hepatitis. I remember my doctor’s bowtie, the words fibrosis, chronic, Prednisone. While part of my body sighed to finally have words and names to wrap my symptoms around, the inside of my head shook like thunder/bulldozers/mini-avalanches. Thoughts poured out everywhere, oozed from me.

It’s odd when our perspective shifts, we adapt, and rare things become normal. Disorders and lava alike. Three weeks ago my body reeled from a 6.9 earthquake, and now the ground moving feels like a tango dance with the earth. The first week was so unknown. Would a crack just open up in the earth and swallow me? Would magma pour out and cover my world?

Seven years ago my lifetime of coping with my personal challenges with perfectionism and overachieving, stress and constant sympathetic nervous system arousal caught up with me and brought me to my knees. The unknown of the diagnosis process brought my anxiety to an all-time high. I am in awe how now I navigate my world, with ups and downs — still here, alive and present. I live my life one foot in front of another just like everyone else.

Navigating this crisis has been healing for me in several ways, one of which is recognizing I am not running away or frozen because I have the privilege of choice. I can go to stay with friends on the other side of the island and titrate my experience when I get too overwhelmed. I can connect with community here of other people going through the same experience, and we can laugh, scream and cry together. This is very different than living with a rare diagnosis where I can’t choose to step out of my body for a day or connect with others that have the same experience. Now I can feel through the intensity rather than have to cut it off and shove it away. In many ways the present is healing the past.

Much like my liver disorder, this volcano is a teacher for me. I can’t believe how resilient I am. Resilient enough to cope with the epic unknowns of a natural disaster crisis, which has a similar feeling of the all too familiar uncertainty and unknowns of dis-ease. Through strength, integration and growth I am evolving into a more present, empathetic and grateful human.

This has been the most beautiful but tragic, awe-inspiring and terrifying, primordial yet connective experience.

Autoimmune hepatitis: one in a million. Sitting on a lawn chair with friends watching the nighttime lava fireworks in your backyard: once in a lifetime.

I have survived, and I will survive, and I will continue to grow in the red, booming and quaking of the richest, rarest, life experiences. I am humbled by the opportunities of this one precious life because not everyone gets to excavate their liver or the earth’s lava the way I have.

Pause, take a deep breath, soak in our lives.

Image Credits: Zina Mercil

Image via contributor.