During this past year, Lia Lee died. She was 30 years old. Lia was the 14th of 15 children born to a
Hmong refugee family. Lia is the first of the 15 born in a hospital (in Merced, California). Lia is born brain damaged. And her death would be little noticed outside of Merced.
But her story still reverberates. Anne Fadiman captures Lia Lee's story in the 1997 book, The Spirit Catches You and You Fall Down.
When Lia is diagnosed (very young) with severe epilepsy, there is a cultural conflict that obstructs her treatment. You see, the Hmong religious belief in shamanistic animism asserts that malevolent spirits are constantly seeking human souls, especially those of vulnerable or unloved children. In Hmong culture, epilepsy is referred to as qaug dab peg (translated in English, "the spirit catches you and you fall down"), in which epileptic attacks are perceived as evidence of the epileptic's ability to enter and journey momentarily into the spirit realm. In Hmong society, this ability must be used to help others. Qaug dab peg is often considered an honorable condition and many Hmong shamans are epileptics, believed to have been chosen as the host to a healing spirit, which allows them to communicate and negotiate with the spirit realm in order to act as public healers to the physically and emotionally sick. (For the Hmong, even quag dab peg becomes an opportunity to "pay it forward.")
When Lia's parents didn't comply with medical instruction to medicate Lia (hardly a surprise), they did so partly out of ignorance of how to administer the complicated combination of dosages and partly out of the belief that the medicines were not making Lia better (even possibly making her worse). At one point, Lia was taken out of her parents' custody and placed in a foster home--for a full year--to ensure she would be "properly medicated." Even so, her seizures did not stop. Lia returned to live out her days in her parent's home.
Lia lived the majority of her 30 years in a vegetative state (because a grand maul seizure at age four left her "brain-dead").
Most people in that condition die within 3 to 5 years.
If we want all of the pieces of this story to fit nicely together, there is no real satisfactory explanation. And we can debate the soundness of the family's decision--with enough western medical and scientific "evidence"--if it is requisite we keep a scorecard.
Here's my take:
Life is complicated and at times, very, very challenging. And sometimes, overwhelming.
Bad things can happen to good people.
Decisions can be thorny and disconcerting.
However. Even in the midst... where there is great love, there are always miracles.
Go figure. And that's the part of the story that continues to tug at me. And continues to give me hope. Healing is always relational and communal. Lia's family didn't consider the care of Lia as a sacrifice.
Or maybe they did, in the true sense of the word. "Sacrifice" from the Latin sacrificium (to make sacred). In other words, a sacrifice is to relinquish a lower goal in order to pursue a higher one.
For 26 years, Lia's days varied little: her parents bathed her, fed her, flexed her stiffened limbs, kissed, caressed and tenderly talked to her.
Loving Lia is what they did.
In little ordinary ways.
Every single day.
I would like to live my life from that kind of core--to measure my days with conscious choices that radiate love or grace or mercy. To others, and to my self. But when I'm completely honest, and look in the mirror, I wonder if I have it in me.
In the story of Theseus and the Minotaur (tale from ancient Greece), after Theseus has slain the beast in the center of the underground labyrinth, he guides himself back to the surface by a length of thread given him by Ariadne, the king's daughter, retracing his steps through the dark maze of tunnels.
Where is that thread for you?
Where are those sanctuaries--people or place--that help us remember who we are and those parts of us that have not yet been buried or lost?
Where (and how) do we give ourselves the permission to hang on to that thread (which is another way of saying we believe it is there)--and embrace the fullness of life in this present moment?
Even with the conflicting values, there is a thread that keeps Lia alive. "She was never shunted to the periphery," Fadiman says. "I remember her most in her mother's arms. Family life went on around her and in some ways revolved around her."
When I visited New York in December, I spent some time at Ground Zero and in St. Paul's Chapel (the place where firefighters and rescue workers ate and slept in the days and weeks that followed the 9/11 tragedy). There is this quote from a New York firefighter (about the volunteers who worked tirelessly in St. Paul's);
When I come in that door, I'm covered with blood sometimes, and they hug me. They love me, they take care of me, they treat me as a real human being. And then they feed me, and they massage me, and they give me adjustments. These are my people. This is my place.
This is where I come to be with God.
Yes, I know that bad stuff happens. But I also know that it's not about what can go wrong, it's about where we choose to look, or see, or how we pay attention, and giving ourselves the permission to let our light shine.
Here's the deal:
--Love is not always where I predict it will be.
--Love can grow and blossom even in the face of striving and anguish.
--If we judge we cannot love. Just because I see something one way, doesn't mean that I am right and you are wrong.
--When we do love, we are present. When we are present, there is always a thread. The good news is that we are in this together. One day you may be that thread for me. And one day, I may be that thread for you.
I'm writing this on a plane bound for Florida, where I will spend a few days with some old friends. It's a ritual. We gather about the same time every year. And yes, they are old, as in we've been friends a long time--over 30 years. And yes, they are old, as in they (like me) take an odd pleasure in getting their AARP discount at the movie theater. And we don't hear so well, which is fine, because what we think people say is usually much better than what they do say.
We spend the days on a friend's boat, swapping stories, talking about the way life is, and the way life should be if we were in charge. And how life is not easy for some of us--struggles and challenges with kids, or jobs, or marriages, or sickness, or expectations. Or all of the above.
We don't use our time making a Bucket List, but instead, enjoy the days with its endowment of gifts, taking great delight in the little things.
Some years I arrive a little more scuffed up than others. And wonder whether it's worth the effort. Or maybe it's hard to admit that I am blessed and this is a thread that I need to retrace my steps... They love me, they take care of me, they treat me as a real human being. And then they feed me, and they massage me, and they give me adjustments. These are my people. This is my place. This is where I come to be with God.
When we reach out in compassion and love to other people, we are filling the space that surrounds them--and us--with love. We are creating a space of love. We are rooting ourselves in love and hospitality.
Macrina Wiederkehr
