Tuesday, July 24, 2012

Meeting Llama Tsultrim

On a smokey, sunny morning, I drove and hour and a half north on Hwy 101 to Rangjung Yeshe Gomde, a Tibetan Buddhist meditation center in Leggett. I had an appointment with Llama Tsultrim Sangpo, a buddhist monk from Tibet who had agreed to talk to me about my daughter's illness.

I've read many books written by buddhist teachers and philosophers and spent several years following the teachings of Thick Nhat Hhan and Pima Chodron, but I have never spoken with a Monk or Nun, let alone a Tibetan Llama. What would he be like? How should I greet him? Was I appropriately dressed in my slacks and long sleeved blouse? I knew it was rude to flash your boobs at a Monk.

The retreat center is just off the highway, tucked into the hills that are thick with trees and wildlife. I was greeted by a man who seemed to be the caretaker and he directed me to the retreat's center, a large kitchen and dining hall where Ani Marsha was preparing lunch. Ani Marsha gave me directions to the cottage where Llama Tsultrim waited. Driving on the bumpy one lane road through the hot silence of late  morning, I smelled the dry grass as it crackled in the sun. At last I reached the cottage, a one room studio in the shade. The Eel river gurgled several feet below and two jay birds yelled at me as I parked.

The front door was opened by a man wearing rust and orange robes with a pair of glasses pushed up on his head and a cell phone in his hand.

"Hi, I'm Terena," I said.

He nodded and said, "Come in."

I remembered to take off my shoes before entering. He nodded toward a corner of the room and told me to sit down. Did he mean sit on a chair, at the table, or on the meditation cushion? I chose the cushion, but then thought maybe it was his cushion and that was rude. I was too embarrassed to get up and change to a chair.

He handed me a piece of paper where instructions on how to use the phone were written. "Do you know what this means?"

After helping him with the phone (which still wouldn't work right), he said he'd be back. He was trying to call the interpreter because although he understood English, he wanted to make sure I understood everything he was saying. He walked outside and left me alone for a few minutes. He definitely wasn't what I expected; instead of an elderly Tibetan monk welcoming me into his room filled with incense and bells, Llama Tsultrum was about my age.  He struggled with a cell phone just like any other person would and his room was as ordinary as any one room cottage could be.

He returned and the interpreter joined us.  The three of us sat on meditation pillows around his altar and then he asked how he could help.

I told him about my daughter's illness and that she would eventually die. "And there's nothing I can do to help her or cure her. Watching her suffer is breaking my heart and I can't breath from the grief and anger I feel. I can't meditate because my mind runs around in terror and the only thing that helps is if I stay busy. I know what I'm feeling is natural and I'm not asking to escape suffering. I'm asking for help so I can bear the suffering and be strong to help my daughter through this."

The interpreter repeated my words in Tibetan and Llama Tsultrim nodded as he listened. Then he spoke. I've never heard Tibetan spoken and it is a beautiful, soothing language. It sounds Asian, but doesn't have the same high notes and short clips of Chinese or Japanese. I couldn't understand what he was saying, but I loved listening to the low melody of his voice and felt assured by his thoughtful responses.

He spoke about the love of a mother for her child and how powerful that is, how the bond between a child and mother is stronger than anything in the universe. He told me the depth of my grief is directly tied to that bond because I love her so much. But the time will come when I will have to let go so she can go move on to her next life. However, I can help her during the process of her death and eventual rebirth by staying devoted and loving her with all my being. A mother's prayers for her child are important in helping the child go on to a fortuitous birth that will bring her closer to enlightenment. But yes, the pain is great and I need to care for myself as much as possible.

I spent an hour with Llama Tsultrim, mostly listening to his words as spoken through the interpreter. As the time passed, I felt calmer and more centered. Here was a wise teacher who listened with his full attention, who cared deeply for me and my child (a child he's never met), and who offered practical advice on how to bear such terrible grief. When I asked for specific instruction to help me find strength, he taught me a new meditation technique. Llama Tsutlrim asked me if I had a relationship with a deity and I explained that I find strength and wonder in the natural world. He encouraged me to meditate in nature and continue working with plants. He also told me to think if an emotion or action is "useful." He didn't use terms like "good" and "bad" he asked, "Is this anger useful?" Just asking myself that question now and then helps ground me when my emotions become a whirlwind in my head. I still feel them, but is getting lost in them useful? Is getting drunk every night useful? Is wanting to yell at my husband because he isn't grieving the way I want him to useful?

The greatest thing I took away from this was the understanding that I could not get lost inside my own grief; my daughter needs me too much. It is natural to feel sadness and rage and I shouldn't suppress or ignore it. But I can't let the grief be the only thing in my life. She is the one going through decline and the one who will eventually die. I need to help her so she won't be afraid.

Even writing that makes my bones ache with sadness. The look in Llama Tsultrim's eyes told me that he knew how great my pain was and how impossibly hard this journey will be. There was so much kindness and compassion in one small man and just sitting with him in that little cottage by the Eel river made me feel more peaceful than I have in a very, very, very long time. The feeling lasted several days.

Monday, July 9, 2012

Recognizing Blessings

The trouble with depression and fear is that they bury anything remotely positive in a bog of thick gloom. The little glimmers of hope vanish as the darkness thickens. But occasionally, something beautiful will appear and remind you that life is still sweet.

Like your daughter finally getting into the swimming pool at school and having fun.

A plant you thought you'd killed struggling back to life and blooming with tiny pink blossoms for the first time.

Texts filled with hugs and love from friends who live far away.

The people who drive an hour just to take your daughter out for ice cream.

Your mom who offers to mop your floor and iron the pile of work shirts you've been ignoring.

Comments from people you've met via blogs; people you've never met, but who offer support anyway.

The social worker who keeps trying to find you more help despite the budget cuts.

The dog who demands a walk in the sunshine and won't let you just lie in bed all morning.

All the varieties of veggies and fruits at the farmer's market this time of year. The taste of fresh organic strawberries.

Your husband who shows you a thousand times that he really does understand and really is there, even though it's sometimes hard to see.

Hearing a new song on the radio that makes you want to cry and dance at the same time.

Godiva chocolate.

Tuesday, July 3, 2012

How would you feel if your worst fears are confirmed?

Whenever we go to Stanford for a medical appointment, we stop at the Disney Store so Queen Teen can indulge her obsession with all things Disney. Ice cream isn't enough any more, instead Queen Teen gets to buy a new doll or shirt or trinket, usually related to a Princess.

My Disney Store is called Godiva... as in Godiva chocolate. There is a Godiva store at the Stanford Mall so my treat after the long drive and worry is to blow thirty bucks on a box of delectable truffles. I would spend so much because we used to only go to Stanford three times a year. Now we'll be going more often, so I'd better cut back on my Godiva splurge before I gain 40 pounds and max out my credit card.

However, we won't be cutting back on Disney.

Queen Teen had a genetics appointment last week with Dr Enns, the leading expert on Mitochondrial Disease in the U.S. We've been working with him for 5 years and he's put her through every test he can think of to confirm whether or not she has Mito. All of the tests come back negative. The mitochondrial sequencing test showed an anomaly in 100% of her mitochondria, but this is more likely a familial trait, not the cause of her illness. This time, I was the one who had to get blood work (Queen Teen loved that) so they could determine if I too have the anomaly. This would confirm that it's just the way our mitochondria are made.

Dr. Enns was alarmed at how rapidly Queen Teen has lost ground, and it felt reassuring that the doctor is just as worried as we, her parents. Reassuring isn't the right word. You know that feeling when you go to the doctor convinced that something is terribly wrong with your child, only to have a condescending physician pat you on the head and tell you not to worry? It's infuriating. Then you go to a different doctor and that doctor takes your fears seriously and immediately gets to work trying to help your child. You feel calmer and reassured that the doctor cares about your child.

But how should I feel when the doctor confirms my worst fears about my daughter, tells me to trust my intuition without actually giving a prognosis, and talks about aggressive tests to find the right treatment to improve her quality of life? We're not discussing cures or longevity, we're discussing symptom care and slowing down progression.

Dr. Enns and her new neurologist want a muscle and skin biopsy, and we agree, even though this means anesthesia and minor surgery. While she's out, they will draw more blood and try to squeeze in an MRI. He has recommended a newer Mito-Cocktail and is recommending that she be part of a medication research trial.

I can't believe I'm going to put my kid on experimental medication.

It will take some time to get the appointments organized (she also needs to see a cardiologist and respiratory specialist, as well as the surgeon and several doctors on the medication committee) and I'm so thankful that Dr. Enns' assistant is dealing with that. Hopefully, we'll get this done before school starts August 20.

Queen Teen will be getting a lot of Disney swag this summer, and I'll probably be eating way too much chocolate.