minimal change disease
Less than three years ago, a life-threatening illness left University of Washington junior Olivia Arguinchona barely able to walk 10 yards, unable to attend classes, and unsettled over her career goals. Facing an abnormally complicated case of Minimal Change Disease, the auto-immune illness severely attacked the kidneys, causing her body to lose life-essential protein. It came on suddenly, when three blood clots in her brain led to emergency hospitalization. She languished for weeks at the UW medical center when her disease resisted all traditional treatments leaving her body edematous and extremely weak. After a frightening recurrence, an innovative chemotherapy treatment finally restored her to health a year later.
Yet today, she’s immensely grateful she experienced such profound illness. “My illness has turned out to be my greatest strength, the best thing that ever happened to me. It completely changed my world view.” Now infused with a strong career direction, Olivia will be entering graduate school this fall to prepare for the relatively new field of Pediatric Palliative Care, and exudes joy and peace in her new sense of life purpose.
She also respects the resiliency of the human body after training for a year, and recently completed a half-Iron Man triathlon in Victoria, B.C. where she swam 1 1/2 mile, ran 13 miles, and cycled 56 mile…a grueling effort even without an earlier illness. Even more important to Olivia, she joined a team that raised over $146,000 for the Leukemia and Lymphoma Society.
Why? What happened that turned her traumatic illness into a time of gratitude and personal growth?
Shipwreck and Resilience
I’ve been very interested in resilience, what happens when people experience a life “shipwreck.” Theologian Richard Niebuhr speaks of shipwreck as “the coming apart of what has served as shelter and protection and has held and carried one where one wanted to go–the collapse of a structure that once promised trustworthiness.” On book tours, I often speak about life shipwrecks for Pilgrimage through Loss. Whether talking about the loss of a loved one, a career collapse, a broken marriage, a health crisis, a bankruptcy…any life event that shatters our assumptions that what seemed trustworthy no longer exists, I am fortunate to hear stories from men and women about what gave them new resilience and hope.
As she was healing, Olivia began volunteering with University Presbyterian Church in Seattle in their Side by Side program for children in Palliative Care. She also became a Program Assistant for the University of Washington’s Palliative Care program. Palliative care is end-of-life care aimed at alleviating suffering and pain. She considers it a privilege to befriend families and to come alongside children as they are dying.
Seeing the Gift from her Time of Vulnerability
Her role? “I go play with the kids and talk with them.” She finds that sharing her own story brings trust from both families and children. “I can share with them that I’ve been sick too, and taken medicines that make me feel sicker. I show them the scars from my pick lines.”
One three-year old girl especially confirmed her new career choice. A child with the most lethal form of acute myloma leukemia, she has already had two bone marrow transplants. But she still lives exuberantly, learning to dance using the IV pole tethered to to her as a partner, not an obstacle. She also always encourages her mom and dad. So upbeat, she’s become an inspiration to most of the medical staff as she ‘reads’ imaginary bedtime stories to her teddy bed while putting a pretend IV line into the bear.
But one time, Olivia and she talked at a deeper level, a moment that cemented Olivia’s desire to address the lack of children’s palliative care in this country.
“This vivacious girl panicked one night when a nurse put medicine in her nasal tube,” shared Olivia. “You can imagine how uncomfortable that would be. After the nurse left, I climbed onto the hospital bed reaching for a quietly sobbing girl.
‘Are you scared?’ I asked. She nodded and I proceeded to tell her it was ‘ok’ and normal to be scared. I understood because I had been really sick too.
With big brown eyes, she turned to look at me and whispered, ‘But I am scared every day.'”
Olivia was astounded this three-year-old, who constantly assured her mother she would be ok, had cognitively hid her fear so as not to worry those around her. She understood her own emotions and their effect on people she loved. “This is an understanding that most people my age haven’t even grasped. If I can use my personal experience to help a child feel even a tiny bit safer as they bravely face fear and illness, it will have all been worth it for me.”
Have you ever had an experience that first seemed like a shipwreck and then later you found gifts hidden within it?