On supporting a loved on with chronic illness

Originally published on Medium

My mother’s disease is like a natural disaster: It’s not always a raging storm, but when it is, it’s incomprehensible, devastating, and random.

For reasons not entirely understood, my mother’s immune system has been slowly destroying her liver for the last 25 years. When she was diagnosed in the early 1990s, she was given eight years to live, but a liver transplant purged the sickness from her body ten years ago. After a few months of unexplained fatigue this summer, we learned that the disease had returned, a relatively rare occurrence in post-transplant patients. I sat and wept on a bench in Central Square when I learned it had taken up residency in her body again, sure and strange as a warm ocean current, ready to wreak havoc.

She’s lived through cancer, a stroke, epilepsy, diabetes, osteoporosis, shattered bones, dental issues, jaundice, a liver that functions at five percent of normal capacity, and a million other ailments I’ve left out because I simply can’t remember anymore. Modern medicine makes human lives seem less fragile, salvageable but broken like the wreckage from a storm. Her body bears scars like Frankenstein’s monster, incisions that run from her ribcage to hipbones, swollen joints and random bruises, brittle hair and teeth.

My mother’s disease, called Primary Biliary Cirrhosis, is not contagious or causal, and it is not strictly genetic, though I have a slightly higher chance of manifesting an autoimmune disorder at some point in my life. 75 percent of people living with autoimmune disease are women, and though the disease category is one of the leading causes of death and disability among women under 65, research into their genesis as a whole remains largely inconclusive. Although autoimmune diseases are fairly common, and are a diverse category of disease that affects every major organ group, Primary Biliary Cirrhosis is officially registered as a “rare disease.” While research into its management has been promising, I doubt there will be a real cure within my lifetime.

The pained, slightly confused expressions of sympathy that cross peoples’ faces when I tell them about my mother are predictable to me now, and I keep a catalog of promised kindnesses in my head I can call when I need them. In the case of chronic illness, the most well-intentioned acts of compassion can become a burden: trying to schedule when dinner can brought to your home, shoving another quiche into the freezer, an “I can’t imagine what you’re going through,” talk. a hug as you inevitably break down when you run into an acquaintance on the street. Then, of course, there are those who don’t know what to say: the friends who disappear, the family members who never come.

I’ve learned that during a long-term illness, most people fall away, slowly becoming unglued from the spine and dropping like pages from an old paperback or moldering like a waterlogged novel. I recognize that most friends have limited experiences with long-term degenerative illness, though I have become acutely aware that each person carries a significant number of individual, hidden traumas. Even the blessed suffer, and mental pain is unquantifiable because it is as systemic and ubiquitous as a chronic illness. Pain is as inevitable and often random as death or natural disaster. It is a primary life experience that binds us to others.

Ten years ago, my mother’s physical pain was assuaged when she received a new liver from a woman I call Linda, though I don’t know her real name. Linda died in a car crash on a Saturday evening outside of New Haven, Connecticut in September of 2005, and by 9AM the next morning, her liver was pumping my mother’s bile. That Sunday, my father bought three copies of the New York Times so we wouldn’t have to share as we sipped black coffee and waited for the nurse to call our names. Transplantation saved her life, but the disease left marks on her body and mind, leaving her scarred, knocked down, and largely adrift. Wandering the landscape of a life shattered by disease, we can only look in the empty windows of what could have been.

In my college entrance essay I compared my mother’s transplant to my own prom: a momentous life event that felt strange, inevitable, and weirdly glamorous. I used the essay to describe how my mother’s fragility underscored my own need to live vibrantly. I wrote,

Had my mother not been ill for most of my life, I would be a different person. Much of my desire to embrace life and connect with people in my own, small way comes from my sense of mortality. This sense of life’s transience propelled me to grow up quickly… Our serendipitous adventures have proven that our relationship is blessed. …However, the greatest impression that she has made on me is that every minute of the day I know there is someone in the world who loves me more than anything. My mother always says that I am “the best thing that ever happened to her.” Her unwavering affection has shaped me as a confident and capable woman who shares her love of life.

This essay remains one of my favorite personal pieces, and I’ve come back to it often in the last few months. Each appointment and emergency room visit brings me back to a childhood spent in hospitals, the long waits when I first understood life and health are tempestuous and unguaranteed. Tim Lawrence wrote in his recent essay “Everything Doesn’t Happen for a Reason,” “Being diagnosed with a debilitating illness cannot be fixed… [It] can only be carried.” Accepting that some things don’t happen for a reason can free our minds to grieve. Carrying the weight of trauma rather than taking responsibility for events beyond our control helps us better understand our pain and the pain of the people we love.

I’ve been thinking lately of a healer I know who told me that if she could be reincarnated as a plant, she would be a wild raspberry. After cataclysmic weather events, the wild raspberry is the first edible plant to return to the area, so that in times of crisis, it provides valuable sustenance. I try to find a wild raspberry in some hidden spot during the darkest times, whether it’s a few uninterrupted hours chatting in a hospital room or a trip home to drive my mother around town and have dinner with my parents. I savor the metaphorical sweetness of the tiny red berries because I know they cannot last forever, but that they allow my mother to live now, for us to live, together.

http://jennierosehalperin.me/body-as-natural-disaster/