Wondering Who You Are --- Sonya Lea

Sonya's husband Richard survived a bout of cancer, but the operation he underwent to do so --- called the MOAS, "the mother of all surgeries" --- damaged his brain. The cause? Another of those elegant phrases out of medicine: anoxic insult. Lovely, poetic even . . . but a disaster for the cortex, for it involves oxygen deprivation.
So, as so often nowadays, he entered the hospital with one problem, and left with another. That is, when he recovered from the operation, his personality was completely changed. Before, he had been, as Lea describes him, caring, alive, funny, "an eloquent, dashing, smartest-man-in-the-room guy." Tall, strong, definitely handsome. Now?
"He's not a warrior. He's more like a mama bear who has been hibernating in the long winter, dazedly awaking to his brood." What he has now, what she and their two children (and his coworkers, and their families) have to deal with comes with yet another poetic phrase out of medicine, "ambiguous loss." Which can be either "a psychological presence and physical absence," or --- in Type Two --- "physical presence and psychological absence."
Richard II remembers nothing from before the operation: his marriage to her, his family, his work, his identity.
Being without identity is a terrifying thing. He's cut off from his memories, cut off from his preferences, cut off from his beliefs. I'm not sure if he'll regain any desire at all. He's lost not only his own sense of self but the one we share, our marriage history, our familial ties, our community connection, our political and social selves. Day to day, he can't remember what makes me "me," what makes us "us."
"In our marriage, he was my wild man, my field guide, I want a rich and complex intimacy again. Instead there is an innocence and spaciousness. Sweet as he is, we seem shattered." Oh yes: he cries a lot. And so does she.
Sonya spends much of her time in the year or two after his operation trying to recreate Richard I. Richard II often asks her what he was like, and it's a puzzle for all of us. We readers: we're not so sure she should tell him, what she should leave out.
I thought I knew what made Richard my lover, his children's father, his family's brother. When I look in his eyes [now], permanently wide with that stare, I witness the absence of forethought. Experience is writ upon his face, the very second of its apprehension, as if he's a newborn, as if some Demiurge has just fashioned him from clay.
He is a newborn, but so is she. She, like most of us seekers from the West Coast has a bit of the Buddha nibbling at her: so one of her first acts is to invite a Tibetan master to come and see if there is some magic he can perform. "In my shock and grief, I want to find anything I can to recover my former husband."
The master comes to their house. He is Lama Lharampa Geshe Ngawang Lungtok of Karnataka, India. "The lama chants around Richard's body. The translator tells us he's transforming all Richard's negative energy into pure radiant bliss."
There hasn't been anything other than wonder in that man's mind for a month, I want to say.
They are handed three packets of red-brown pellets. Sonya asks what they are.
"The crushed remains of the lamas for generations and the prayers of ten thousand lamas including the Dalai Lama," the translator says. (Or that is what I hear. Years later, Dylan [her daughter] will tell me that she thought he said tears of ten thousand lamas. Whereupon I think, wow, that would be some medicine.)
"Would you like to have anything else blessed?" he asks.
"Like what?"
"Medicine, lotions, water."
I go running for my flower essence cream, bowls of water, Richard's vitamins.
"When these are used, now each being will be transformed by this same radiant light."
"What about his memory loss?" I ask.
The translator and the lama exchange words. They look at Richard, and then toward me.
"From the Tibetan perspective, the memory loss is not such a bad thing," the translator says.
§   §   §
When Richard II and Sonya go on their first trip from home, they end up in Florence, Italy. Richard appears to be slowly waking up, at least the aesthetic part of his brain seems to be reconnecting. In the the Galleria dell'Accademia and the Uffizi, he's "awake in a manner that I have never notice in him before."
He's immersed in the art, drawn to works that interest him, intent on studying pieces that move him, and able to articulate the impact of the exchange when I question him later, over dinner."
Sonya has another experience in the Duomo Museum. It's the Magdalene by Donatello. "I nearly fall to my knees in shock as a wave of sadness erupts."
Her legs and arms are lean, her eyes appear half-mad, her lips parched, her teeth broken. Her hair hangs in ropes around her sinewy body.
"I stand eye-to-eye with this Mary . . . When you look closely, you can see that she hasn't wasted away. She's fierce and unwavering. I'm not reacting to the Mary Magdalene of history, but to this woman I see before me, a woman who appears to have walked across the desert for her man. I see in her the impact of being bonded to someone you adore, someone no longer present."
Thus Lea, at last, gets to look in the mirror, to see another woman who has lost so much.
Later, when they are walking the streets around the Duomo, the Italians seem to be responding to Richard's "openness." "They point to him and invite him into their shops to offer him the end-of-day pastries. They enjoy his obvious appetite for their food."
Richard is not challenged in any of the ways that I seem to be. But he isn't being treated as if he's a big doofus either. People invite him not for what he's missing, but for what they see in him.
At a restaurant, "we are in a room full of Italians, because we can speak with our eyes, we are right at home. In Italy, it is as if our rational, vernacular selves have evaporated, and we are living on tears and elation and levity."
§   §   §
Wondering Who You Are is a moving family portrait of love and loss. Even more, it is a textbook --- albeit a textbook with heart. And it's not only about a lost self. It is also a probing study of the realities of Richard's type of cancer, a very rare one, called PMP (pseudomyxoma peritonei). It is also a study of the brand new medical intervention --- his operation was one of the first --- known as HIPEC (hyperthermic introperitoneal chemotherapy). We learn perhaps more than we want to know about PMP and HIPEC --- the notes at the end of the book take up twenty pages. But, as I say, Wondering Who You Are is part biography, part autobiography, and part psychological and medical manual.
Most of all it is a stark look at unwillingly changing partners in mid-stream. In that, it is as dramatic as you can ask. How do you treat such an earthquake/tsunami change? When someone you love disappears and is replaced by another, in the same body? How do you survive the loss when an old partner becomes someone who you never thought you would find living in your home full time, at breakfast, lunch, and dinner . . . and in bed.
The author --- like Richard I --- isn't one of those people who wanders around wondering what to do when they hand her a whole new deck of cards in the game we are playing. She's going to damn well figure out the new plays. When she finds out the odds of getting the old one back are negligible, she will demand to know who is responsible, and then start on the recovery of the two of them. (Like most families of the disabled, she comes to be somewhat disabled too.) Later she will reluctantly embark on the painful, invasive course of suing the hospital involved. Since they ignored their own protocol by leaving Richard without enough blood to protect his body as it suffered massive internal bleeding, she wants to be sure it will never happen to someone else.
§   §   §
This is a manual on learning how to live with a new bear that just crept out of the the cave. It is also an object lesson on how to create a change, one that she must go through if she is to survive with him.
What does she learn, finally? Just exactly what the Buddha master and the Italian street people were trying to teach her. That Richrd's memory loss may not be "such a bad thing." That perhaps her new husband, this wide-eyed innocent boy in a man's body, has something beautiful to teach her. Like how to love.
Not like before. Forget before. Bury that one. No: she must learn how to love this new "doofus," so different from the other; one who, completely differently, in his own gentle sweet way can enter her soul, sweep her off her feet . . . help her to become a bit of a doofus herself.
Years after the night Richard died to his former self, we are seated on stools at the Tractor Tavern, surrounded by beers, beards, plaids, braids, boys. I call him Buddha Bear, his secret label, his bedtime name. His hands reach for my bottom. Squeeze. A gesture hidden and overt, the perfect flirt. We lean into each other, starry with the song and the dusk and the delight of this time.
If I silence the obsessive longing that parades like a madcap clown in my mind, Richard is the perfect man for me. My husband shows me that the fundamental nature of being here --- on earth, in love, with the sexual experience --- is joyful As long as I know that in the midst of having anything, I don't get to keep it. Enjoying the ephemeral. This is the best definition of sex that I can imagine.