12-18-13 Words for Ana

Dear friends,
Thank you so much for your loyal support to read this blog. I can no longer harass Ana to write; I no longer need to monitor whose turn it is to post. It’s up to me.

Anyway, I wanted to thank everyone for their kind encouragement, condolence and care in my time of grief. I miss Ana dearly, but she is everywhere present in her absence. Today I went swimming and had a remarkable power in the pool– I smile to think it’s somehow Ana giving me a boost.

I’m remarkably functional, perhaps from years of anticipation, but more likely due to a lifelong exposure to loss in the CF community. I grieve Ana with every breath, and the tears flow easily. So this is what it’s like, for so many who are more experienced than me. This is what every donor family lives with… the daily emptiness and incompletion that occurs when someone is missing.

I keep busy with my piping band, my thank-you’s and Christmas cards; my exercise, my stream of chores, etc. I am working part-time in bereavement care; I visit Andrew in Washington DC when I can, which included this past weekend when we went to the White House for a holiday party. In addition to caroling in front of the White House under a full moon, I was in awe of the rich experiences I continue to have.

This is a quickie of a post; I’m just going to post the speeches that were shared at Ana’s service in October. Ana’s closest friends and family shared beautiful words that were a tribute to Ana’s authentic relationships. My own family was the flakiest and didn’t provide the texts after multiple reminders. Ana and I had the best communication after all.

Anyway, I hope you find comfort and meaning in reading these speeches.

I wish you all a healthy and peaceful holiday season. Thank you for supporting The Power of Two through the years.


Remembering Ana 10/26/13

Anabel Mariko Stenzel Memorial Valley Presbyterian Church
Rev. Carol Barriger Saturday, October 26, 2013
[candle is lit / singing bowl is struck]
Take a deep breath … let it out … take a deep breath … let it out …and keep breathing.
Every person is here because Ana Stenzel made your life different. Look around. If each of us in this room touched this many people, we could change the world. Ana did more than her share. In Buddhist practice, the singing bowl is used to mark the start and end of periods of meditation. It surrounds; it holds. Today it creates a sacred space for us to hold all that we know and feel of Ana. While this is certainly a celebration of a remarkable life, the bowl must also hold pain, and grief, and loss – things that go beyond the head’s knowing that death finds all of us. They are the agonies of the heart, where we are forever changed. Regardless of your tradition or the faith from which you come–perhaps none–or your understanding or name for God, let’s be together in the ambiguity of holding both thanksgiving and grief in the bowl of this space. Please pray with me.
Holy God – you who create, redeem, sustain – fill this space. Insinuate yourself into the cracks of the walls, and the broken places in our beings. Remind us of your Great Love which carried our dear Ana throughout her life, and which now carries us when we are wordless and need healing. In this time together, may each one name in his or her own heart, our own unique loss; and know that You create life and all its passages for your good and amazing purposes. We pray these things in your many beautiful names. Amen.
Those who speak after me–the family, friends, and colleagues of Ana’s, fellow sojourners in the CF and transplant communities–will share 1,000 ways in which she was wonderful, strong, inspiring, irreverent, bitchy even…and all of the fabulous things she did when, by any ordinary measure, her life should have been over a hundred times. Yes, Ana was an intense “do-er,” but since God did not create us as human doings but rather human beings, I’m focusing on her way of being in this world. Ana consciously, intentionally created her heaven right here on earth, and she absolutely did not want to leave it. She truly believed she had a wonderful life even when most of us would be hard-pressed to find wonderfulness in a life with constant, debilitating illness, and death staring us in the face. She believed in God, and that with God, all things are possible. There is a portion of Hebrew Scripture where the prophet Isaiah rejoices that God brings the exiles of Israel home through trials:
But now thus says the Lord, who created you,… who formed you… Do not fear, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the Lord your God … Because you are precious in my sight; and honored, and I love you … Do not fear, for I am with you. (Isa 43:1-5, abridged)

These are God’s words to Ana, bringing her home to and through the transition, the threshold she always knew was there. I once talked with Ana and Isa about the origins of words for “breath.” Breath is holy. In both Hebrew and Greek, the word for Spirit – God’s Spirit – is the same word for “breath.” In the Genesis story, God’s wind sweeps across the waters of chaos to bring forth Creation. The word for wind is ruach; breath. Holy breath. Spiro is Latin verb for “breathe” – giving us: spirit, IN-spire, EX-pire, and yes, CON-spire! To breathe together is to conspire. At the core of Ana’s being was a giant conspiracy to love and to live, and she breathed easily on new lungs right up until her very end. One of her great co-conspirators was James Dorn, her first lung transplant donor. It is special to acknowledge that James’ sisters have traveled to be here today. There IS resurrection. For 6 years, James lived on in Ana, and Ana lived on because of James. Together, as CON-spirators, they changed more lives than either could have alone. Thank you, James. Thank you, Dorn family. That is resurrection.
There’s a book by Jeff Goins: The In-Between: Embracing the Tension Between Now and the Next Big Thing Ana knew about being “in the now,” living wild, yet tender, because you only get so many chances, so many breaths. Maybe she would say she was forced into it. Live “now,” and you can only guess what the “next big thing” might be. For Ana, the next big thing would always be what was either going to save her life, or end it. Goins writes: “If we reserve our joy only for the experiences of a lifetime, we may miss the life in the experience. … opportunities are everywhere, … But first we must learn to open our eyes …” You can’t squint your eyes shut in fear or apprehension. Ana never did, facing ahead–an incarnation of those two great sayings: “If you are not living on the edge, you are taking up too much room,” and “Every day above ground is a good day.”
It was a joy to officiate at Ana and Trent’s wedding. You might think today is a sad contrast, but I see both as times of intense love, intimacy, and caring. I have a special memory of our talks as we prepared for the wedding. Ana said of Trent, “I found such a good human being.” And Trent’s greatest frustration was when he felt Ana was hurt by overworking or overstressing. In her last weeks, he was Ana’s personal angel. We know family relationships can be both beautiful and frustrating. In the Stenzel-Byrnes-Wallace family there is a loyalty and love stronger and bigger than the messy stuff of illness. Isa wrote that Ana was a citadel of emotional strength. Ana talked freely to me about death. She was composed, but not artificially so. Ana was surrounded by love, and she knew it completely – a family together in each moment, deeply in the mess, in the entirely imperfect “right now.”
In Jesus’ time, and the centuries of the early church, resurrection was seen as impossibly and divinely supernatural. We know it to be far more complicated and profound than a resuscitated person – brought back by some cosmic CPR. Love brings emotional resurrection. The gifts of life – a heart, a kidney, lungs – bring physical resurrection. And the ill then do rise, and walk, and dance, and breathe, and sing again, and change the world. Forever. Amen.

Father Reiner Stenzel:
Dear Family and Friends!

We are here to celebrate Ana’s life. If she could be here she would probably say what I say now: Wow, I am overwhelmed and thank you, thank you! You came from far and near, from Japan, Germany, Canada and many places of the United States. You have all been part of Ana’s life and you are all so kind to come and remember her. Maybe her spirit is with us now and we can remember many events together.

I will not review 41 years of her life in 5 minutes, but you may have seen the summary of her life in the invitation letter. This will be supported by many pictures in a video show. I would rather like to tell some views of me as her father. Not surprisingly, Ana and I had many similarities in character and genes. As an example, I liked to be in the outdoors to balance my normal life in a scientific laboratory. So on the weekends I planned family trips to the beach, desert and mountains. We camped, hiked, swam, fished, skied. It required some effort to do, but was always rewarding at the end. It left a lifelong impression on Ana. As adult she continued this tradition on her own. For example, as soon as she had recovered from a lung transplant she climbed Half Dome in Yosemite with me or skied in the Alps or hiked in Norway, to mention only some of her many adventures. She organized annual hiking trips to the Sierra Nevada with friends from work, and I was usually invited to join. Without any direct influence she did what I was doing independently as a Sierra Club outings leader. She said that she was happiest in the nature and in the company of good friends.
Unfortunately, the effects from cystic fibrosis and two lung transplants weakened her body and limited the trips. Last year we climbed easier peaks in the Southern Sierras and this year she came to Yosemite to see me on my hike of the Pacific Crest Trail from Mexico to Canada. Now she encouraged me to keep on hiking another thousand miles to Canada. But her end came earlier and I came back to her when she reached the end of her trail.

Thus the love of the outdoors was just one trait, which connected me with my daughter. Of course she has also many traits of her mother, as you may hear. But she had probably the best of our genes, except for the curse of the CF genes. She was intelligent and knowledgeable and fought the desease till the very end. Both her transplants were a full success but CF reappeared through the backdoor, in the form of cancer, probably caused by the immune-suppressing medicine required for organ transplants. Ana suffered but did not easily surrender. In her final weeks she enjoyed to see all family members and many of her long time friends. Perhaps she can still sense us for this memorial. She would again enjoy all of us and thank everyone for this gathering and sharing of your life with hers.

Since we cannot hear you I’ll say for her thanks to everyone for coming to remember Ana and be with her in spirit.
Mother: did not share
Brother: did not share

I want to thank everyone for sympathy, cards and kindness. I know we’re all grieving and missing Ana.
When Anabel and I first met we immediately found we had many things in common, some trivial others much more important. Her love of nature, outdoors, athleticism, and her strength of spirit is part of what initially attracted me to her, but most important what a truly good person she was, is what made me trust and love her.
After her second transplant I saw her strength return as we traveled together. Time is a strange thing to me, since it seemed like we had always been together and therefore we always would.
Our marriage was wonderful and we had many great adventures together, traveling to numerous places in California and beyond like our honeymoon Caribbean cruise to Half Moon Cay, Bahamas parasailing; Oranjestad, Aruba snorkeling at shipwrecks; Willemstad (Curacao), Antilles hiking and seeing historic colorful buildings; Panama going through the canal; Puerto Limon, Costa Rica river tour, seeing animals in national park, and horseback riding ; and Florida air boat ride seeing alligators, however she declined to hold a small one in the sanctuary.
In Alaska the sky cleared just as we arrived at closest point to view snowcapped Denali (McKinley), we saw from the bus fox, moose, a rare view of bears grazing in the valley, and mountain goats almost walked on the roof of the bus. Off the bus we walked for miles, and found a colony of beavers working on the dams in a river at “Beaver Lake”. On day cruise we saw swarms of bald eagles, and sea otters, humpback and orca whales, dolphins and many more see creatures.
In Yellowstone buffalo casually walked by the car almost catching hair on the side view mirror. We found wolf watchers and got to see wolves through their telescope.
We hiked in snow, and once Ana and Isa started crawling since the snow was too deep, part of that Stenzel ethic, I just waited for them to turn around.
Ana traveled to more places in her 41 years than most people go in their life, and I travelled with her to places I always wanted to go to, but never found time in the past. Although my pace was a little slower than Ana’s she felt we complemented each other and she appreciated the time to get to see more details of the journey.
Quality of life was important to Ana and as long as she had more good days, she continued enjoy and have adventures in life. She even bicycled 8 miles on three wheeled bike her brother got her on July 13th.
Together with Ana I felt I was exactly in the right place in the world, and without her there is a vast piece of my life missing, but Ana always wanted me to live life to its fullest with and without her, so I will always be with her in spirit and honor her memory.
Thank you all for being here today. I know Ana’d be deeply touched by the outpouring of love that is here.
I’ve been preparing to give this speech for more than 25 years. When thinking about how to describe Ana’s life, I remember two years ago, Ana and I were asked to speak at our friend Lara Borowski’s celebration of life. Ana insisted on opening our remarks in the following way. I will paraphrase, switching names:
“In the words of the Great Anabel Stenzel, what the fuck just happened?”
Though Ana intended to emphasize how in the world her friend could decline so quickly, my emphasis today would be different. I grasp at images from years ago: the sickly little baby, the strong-willed child, the competitive Stanford roommate, the hard-headed grad student just trying to breathe, and then suddenly, Ana was cannonballed into a world of athleticism, writing, traveling, speaking, and media interviews, in both English and Japanese. And she reached 41, when her odds of living past 3 days of age were just 50%. What happened!?!?! This was an unexpected fate.
All of you loved Ana. But I dare stand before you and proclaim that I am the most fortunate human being on this planet, to call Anabel Stenzel my twin sister. Ana eased my cruel and wondrous roller coaster ride with infinite affection, companionship, laughter, and soul connection. God could never, ever grant any greater blessing to anyone born with cystic fibrosis, than to be born an identical twin. Such was her – or our—fate.
Ana’s life was full of possibility, opportunity and gifts. But I will never sugarcoat her lifetime of illness. Ana’s fate unfolded with her life concluding not of cystic fibrosis, not of rejection, but of cancer. Ana dealt with her trilogy of illness hurdles with grace, spunk, and fortitude. She never felt sorry for herself. Instead, she saw her bad luck as fodder for her crude and rude sense of humor; as some sort of divinely inspired practical joke. And rightly so, Ana held deep inside some layers of anger— anger that was rarely directed at someone or something—but an anger that fueled her uncompromising passion to grab life by the horns, to say “sickness be damned,” and to forcibly thrust her body forward with her plans despite all pain and discomfort.
Ana’s personality had many rich, complicated layers, and I’d like to share some of those with you today. Ana was the toughest cookie I’ve ever met. Her tolerance of discomfort exceeded mine by a long shot; in the pool. For example, she’d exert harder and longer than I ever could, coming out of the water after a sprint, completely purple, nearly fainting and releasing an expletive. It was this masochism that allowed her to live as long and as well as she did.
Many of you know that Ana was a planner and initiator. She loved to bark orders, and carried a nearly limitless energy to do, do, do. One example was earlier this April when Ana obsessed about finding blue and green quincenera dresses for us for the Donate Life photo contests. It was the last thing she had time, energy and money for, but she reverted to a 15 year old, happily running around town, giggling and posing in those dresses. She was especially pleased when her photos won first place in the state and national contests!
Ana dove into a leadership roles wherever she could. She loved the Transplant Games, and soon enough, she was chair of Team Nor Cal. She loved Transplant Recipients International Organization, and sure enough, joined the Board. And then there was CFRI, her extended family. For 23 years, CFRI gave Ana her reason for being. She always said her service to CFRI was just a fraction of the love she received from all of its members.
But Ana also had an edge. She could be an outspoken, harsh critic. She despised people who didn’t recycle, who polluted, who smoked, who wasted food, and she let us all know about it. This commentary seemed to be an outlet for her anger, and also for the sense of urgency she carried that everyone else live the best life they could—the way she did.
Ana’s priority in life was her relationships. She possessed a supreme loyalty to her friends. Here’s an example. Ana she was extremely stingy but made fabulous cheap gifts. For some friends she’d frame a personalized list of every single memory she had with that friend. She had a way of making each one of her friends feel she was their best friend. All 400 of them.
And then there was our twin dynamic. Our daily habits together screamed seamless, effortless efficiency. All things were possible with Ana by my side, including making a 17-course Japanese meal for a fundraiser. Yet we also shared a lack of emotional boundaries. Since childhood, we’ve always given each other a steady flow of uninvited commentary towards each other that could either uplift our spirits or deliver a massive blow to each other’s self esteem. We’ve served as each other’s parents, old married spouses,… mostly, however, we developed a subtle way of insisting the twin do what the other twin wanted. A simple conversation would routinely escalate into unending nagging and complaining, such that our spouses already knew to leave us alone when the tones in our voices changed. We could tell each other what we have never said point blank to anyone else: “You are rude, you are selfish, you are ugly.” Yet, as soon as it started, our bickering ended, usually with explosive laughter, hugs, and a proclamation of love. Most of all, I will miss this free-flowing giggling that I’ve shared all my life with Ana.
Ana & I felt blessed to have lived out our story the way that we did. We had 41 years to learn the art of saying goodbye, to study our emotions, to make deliberate decisions about how we wanted to live. We had 41 years to hold on tightly, to express what we meant to each other, to not let petty disagreements threaten our bond. And so, how we loved each other—a deep, unconditional, unrelenting love. It was a God love.
Ana was the type of person to always want more. Ana would go on a good, long hike, suffer through foot pain, limp her way back to the car, and end with “I could’ve done more.” At the end of her life, Ana wanted so badly to live more. I only wish she could’ve had more time.
So, the Stenzel chronicles called ‘The Power Of Two’ have finally come to a conclusion. I will miss Ana with every breath I take. I will never again experience happiness or an intensity of love, like I did when Ana was with me. Yet, Ana said she had a magnificent life. Since 2007, our film/book tours afforded Ana a chance to review her life and in truth, to come full circle, re-connecting with childhood friends, teachers, old hospital staff, acquaintances, strangers, every past soul who touched her, so she could say thank you. Ana knew she made an impact.
Before I end, I wish to acknowledge and thank Trent, for loving Ana and making her a happy, proud, married woman. Trent was the kind of husband who peeled Ana’s blueberries when she could no longer eat fiber. Need I say more? Trent, you did everything you could to love and care for my sister, and I am forever grateful. I’d also like to thank the Dorn family, Ana’s first donor family, for being here. James and Ana are now one. I also want to acknowledge Ana’s healthcare providers, without whose dedication Ana would’ve died many, many years ago. Ana also wanted me to thank her genetic counseling colleagues who gave her normalcy, distraction, and self-esteem through her years. Because of your care, Ana was one of the few lung transplant peers who had a consistent career. And to all of you here, Ana loved each and everyone one of you. And so do I. Ana will live on in our love.
As I close, I want to thank my sister for keeping me alive for 41 years; and for giving me this beautiful life. But I believe Heaven is not a place, but a state. I can only pray that as she crossed over, Ana experienced a magnified sense of bliss, peace and love that I did back on February 5th, 2004. She will wait for me, and when it’s time, we will be reunited. My busy, overachieving, overactive twin always said, “I’ll rest when I’m dead.” So, now, my dear Ana, rest up, rest in peace.
Thank you for being here today.

CUT: At the end of Ana’s life she worried about me, and I told her I’d be okay. Ana was so grateful for my husband Andrew, who, after 20 years, has learned our twin language and will keep it alive. It will take a while for me to undo this 41-year long habit of plural pronouns– to use me instead of us; I instead of we. Thankfully, Ana and I have worked hard to build separate identities and lives. We knew we could not exist in an island of twin love. We opened ourselves up to a cushion of support so we’d be ready, when one twin died. So I know I can live on. I also have all of you.

Cousin Britta Stenzel:
My name is Britta. Ana was my cousin.
Ana lovingly called me her second twin. Our genes gave us strong legs for hiking as well as funny hair swirls from our grandmother that made it difficult to part our hair where we’d like. We shared the love for good food especially Sushi and German treats such as Marzipan and Lebkuchen that our grandmother would send each Christmas. We loved to camp and to rough it. We enjoyed wearing hand me downs from our friends and got excited when we found deals at Good Will or Grocery Outlet. And we loved to notice these similarities between ourselves.
Ana was my cousin.
in Germany when I was young. My grandmother, visited Ryuta, Isa and Ana twice and had a photo album of their family. I looked at their pictures, listened to tapes that Isa and Ana recorded where they sang jingle bells and other songs and I dreamt how life would be if we lived a bit closer. My grandmother told me that Isa and Ana had a disease and that they might not live very long: maybe 10 years, maybe 12, at most 16. In 1982 I met my cousins for the first time in person, they were 10 years old and had travelled to Germany. Isa and Ana were extremely skinny and very beautiful. We compared our wrist and arm sizes and giggled a lot trying to communicate with my 2 years of English at school.
Two years later, in 1984 my brother Florian, who now lives in Berlin and could not be here today, visited Isa and Ana in Los Angeles. He was 16 years old. He remembers how he heard their long hours of chest percussions through the house, the hizzing of the inhalator and their coughing. He remembers the mountains of medicine they had to take and how their laughter and positive attitude to life despite their hardships inspired him over and over. Isa and Ana came two more times to Germany as teenagers and every time we met it was very precious as we were aware this time might be the last.

When I moved to the US 17 years ago, I wanted to spend more time with my cousins. I feel immensely grateful that due to the advancements of medicine, a good health insurance, the power of two and the support and love Ana and Isa received from family and all you wonderful friends, we were all able to spend many more wonderful years together than predicted.

Together with three children of foreign born parents cooked a scrumptious turkey, our first one- along with sweet potatoes topped with marshmallows. With her new lungs Ana traveled to Germany to be my bridesmaid at my wedding on a nineteen century sailing ship. Years later we ran a half marathon in Seattle through rain and snow. And we celebrated many Christmases and Japanese New Years and many birthdays. Once Ana told me that she is not celebrating her birthdays, instead she celebrates every day she is alive. Today I am happy that all of us who loved Ana could be here to celebrate a day in life together.

Cousin Julia Stenzel:
Prayer for Ana
I am Julia and this is for my cousin Ana.
Some people understand obstacles as a challenge, not as a punishment. We all know that you, Ana, were such a person. Not only did you find ways to overcome the limitations your disease would impose on you, you took your own pain and suffering as a source of experience and wisdom to share with others, to help others, to enlighten them. In Buddhism we call such a person a spiritual hero. A hero, a person of extraordinary courage, transforms difficulties into the spiritual path of life. That is what I saw throughout your life, Ana. You and I did not discuss Buddhism a whole lot, but you always expressed interest and a sense of connection with my life. In one of your last emails, when you went bald because of chemo, you wrote me: “Now I look like you when you were a Buddhist nun, with shaved head”.
I admired you, Ana, for your capacity to transform difficulties into treasuries, and to not stop giving to those around you. Isa has asked me to say a Buddhist prayer today, and I have chosen one that reminds me of Ana’s generosity. This is a wishing prayer that celebrates virtue and generosity. With this prayer we wish to be courageous and never stop giving and sharing – because this is what makes our lives full and fulfilled.

With joy I celebrate
The virtue that relieves all beings From the sorrows of the states of loss
And places those who languish in the realm of happiness.
May all the pain of every living being/ Be wholly scattered and destroyed
For those ailing in the world,/ Until their every sickness has been healed,
May I myself become for them/ The doctor, nurse, the medicine itself.
Raining down a flood of food and drink/ May I dispel the ills of thirst and famine.
And in the ages marked by scarcity and want,/ May I myself appear as drink and sustenance.
For sentient beings, poor and destitute,/ May I become a treasure ever plentiful,
And lie before them closely in their reach,/ A varied source of all that they might need.
My body, thus, and all my goods besides,/ And all my merits gained and to be gained,
I give them all away withholding nothing/ To bring about the happiness of beings
May I be a guard for those who are protectorless,/ A guide for those who journey on the road,
For those who wish to go across the water,/ May I be a boat, a raft, a bridge.
May I be an isle for those who yearn for landfall/ And a lamp for those who long for light;
For those who need a resting place, a bed;/ For those who need a helper, may I be their servant.
May I be the wishing jewel, the vase of plenty,/ A word of power and the supreme healing;
May I be the tree of miracles,/ And for every being the abundant harvest.
Thus for every thing that lives/ As far as are the limits of the sky,
May I provide their livelihood and nourishment/ Until they pass beyond the bonds of suffering.
This most pure and spotless state of mind/ May we embrace and constantly increase
To bring this human life of ours/ To its highest state of perfection.

Tibetan Prayer

Cousin Britta’s children:
Franziska: My name is Franziska (age 8)
Pia: And my name is Pia (age 10)

Franziska: We were flower girls at Ana’s and Trent’s wedding
Pia: Sometimes Ana would let us put a rose in the rose parade float to honor her donors

Franziska: The butterflies represent lungs and life to her
Pia: Now every time we see a butterfly we think of Ana

Franziska: We love her
Pia: and we will miss her

Childhood Friend Jenny Schmidt:
Ana – and the Stenzels – are my oldest friends. Our families became next door neighbors in the early 70s and have shared 40 plus years of friendship. My childhood memories of Ana are mostly the everyday activities of regular life. Running back and forth between houses; walks to school; enjoying Hatsuko’s homemade Japanese meals; helping in my parents vegetable garden; art projects; building forts; taking breaks for Ana and Isa’s CF treatments. There were milestones like birthday parties, an earthquake in a movie theater, Ana’s tumble out of a bunk bed. We shared many of the same classrooms, and Ana was a perfect student – creative and artistic with penmanship that awed me. Shy and quiet on the outside but funny and edgy up close. She was loyal and stoic with the world’s sweetest giggle.
Our childhood play ended abruptly when adolescence hit me like a freight train and I turned away from my dear friends. A decade later, Ana took me back with compassion far greater than I deserved. Eventually, the Stenzel kids and I all ended up as neighbors in the Bay Area, and I remember vividly Ana and I taking a hike in the hills of Fairfax – we talked openly and honestly, our adult friendship firmly cemented.
My friendship with Ana has marked important milestones in our lives. When I was pregnant with my son Gabriel, she threw me a baby shower and years later, Ana revealed to me that it was the day she knew her first donor lungs – James’ lungs – were going into rejection. When Gabriel was a baby I brought him to see her, and it turned out to be the day before she was called for her second transplant. Five years later, when I was very pregnant with my second son, Ana and Isa came over with homemade chicken soup and treats for Gabe. I went into labor the next day. These benchmarks are what make lifelong friendship so meaningful over time.
I had the privilege of working on The Power Of Two as one of the associate producers, and the entire experience was a gift. My favorite moment in the movie is when Isa talks about Ana’s wedding – how everyone there knew what a big deal it was because Ana had survived. As a child my mind was not capable of processing her illness, but now I have an understanding of Ana’s incredible strength and tenacity. She did more in 41 years than many of us would do in several lifetimes – like sharing her story so generously with the world to help countless others, while battling her own health challenges in the background. She lived her life with a generosity of spirit that informed life’s most important choices and touched her most personal gestures.
While working on the movie, the long hours traveling gave us precious time for leisurely chats, and to bond over gelatinous gravy at a Midwestern diner and a memorable visit to the Museum of the American Indian. When we were in Washington DC, before her cancer diagnosis, Ana revealed to me that she had been thinking about who she would like to have with her at the end, and that she pictured me there. I could barely comprehend this honor. How two little girls with somewhat different personalities, very different struggles, divergent life paths – became so bonded as adults – it was because of Ana. I believe she loved me unconditionally, because that’s how she loved.
This is a celebration of Ana, and it’s a celebration of family. I have been witness to the tremendous commitment to Ana by Isa, Hatsuko, Reiner, Ryuta, Andrew, Chie, her two beautiful nieces, and Trent – who in one of our final visits she referred to as “her angel.” I aspire to take care of my own family the way you take care of yours. I look forward to a continued shared path with two families from Almar Avenue – and all of our add ons – with Ana’s memory living on between us.

Childhood friend Naomi Takeuchi:
Over the years Ana and I exchanged many letter and emails, and today, I wanted to write her one last mail, which I would like to read:
Dear Ana,
When we were kids, we promised that we would grow old together, so leaving this world at 41 was way too young. But at the same time, look at what you did with these 41 amazing years.. you lived your life so fully and gave it everything you had.
I know we owe our friendship to our mothers. First they became friends, then we became friends, and I was still probably 3. Before I knew it, we were always together; you, Isa, Akemi and me, calling ourselves “The Four Musketeers.” You were always the leader in the group, whether it was us practicing our unique musical “Annie”; or us as we went out exploring the world on roller-skates; or us on those overnight campouts in your back yard.
After being on different sides of the planet, our paths crossed again. Maybe by luck or maybe by way of that “blood sisters” promise we made in childhood. You had grown into such a strong, beautiful woman. You had just gone through your first lung transplant; a new lease on life; a new chapter. And, as you and Isa launched out into “The Power of Two”, it was another new adventure for us to share.
I’m so grateful for the time we could share during “The Power of Two.” Boy, did we have fun in Japan!! And, meanwhile, I got to see a new side of you. You weren’t just the little Anabel Stenzel I grew up with. You became a bigger person; with a mission on this planet to share your experiences and offer a hand to people who needed it. I’ve seen you give so much courage and hope to the Japanese transplant and CF communities.
When the film’s theatrical release was happening in Japan, despite the fact that you were in the hospital until just the day before, you decided to come to Japan. I thought you were crazy, and couldn’t believe your strength and determination. At that time I told you “Muri shinai dene” (meaning “don’t overdo it”)… just like I had said to you since we were children; whenever you would start coughing, or whenever you were in the hospital or after your transplant, or EVERY TIME I saw you, I would say that. But you know what I noticed? I realized how stupid I was telling you not to overdo it all these years. You are who you are because you over do things, because you always had the strength, the courage and the diligence. Your attitude towards life like this taught me that dreams are not something you wish for, but something you achieve with effort.
And now…Even though I know it is stupid, I am going to say it to you one last time:
Ana, you don’t need to overdo it anymore. You have lived your life so fully with so much energy and gave it EVERYTHING you had, and it is ok to rest now.
Thank you for all the great memories and thank you for all the hope and courage you gave us. Though we cannot laugh, cry, or go on new adventures together again anymore, you will always have a special place in my heart and will continue to live with us in a different form.
A few days before you left us, the four musketeers was able to unite one last time. At that time, we promised that whatever world is out there, we will meet again…
So Ana, until then, Good Bye and rest in peace.
Love always,

High School friend Nancy El Sonbaty Marshall:
Life Celebration for Anabel Stenzel
October 26, 2013

I first met Anabel and Isabel Stenzel in Ms. Uyeno’s 10th grade geometry class at Pali High. I remember thinking to myself that they looked like my type, nerdy and nice. Isa was sitting next to me, Ana in another corner of the room since they often didn’t like to sit together. Everyone except me knew someone from Paul Revere Junior High School.
My first afternoon in the quad for lunch was a daze. I saw them, smiling faces, sitting in the sun on the concrete semicircular stage in the quad. Remarkably, they asked me to have lunch with them. I would come to love those days we’d spend sitting on that concrete. That day signified to me so many things that I would come to associate with Ana: no fear of something different and always an ambassador. She had compassion for my plight instantly, because she was always the underdog. She didn’t care that I was the new kid and I didn’t care that she was sick. There was an edge to her that I loved: her penchant for blue humor, sass, and of course her cutting sarcasm. After that point, we all became close friends quickly.
We ended our high school career having done well in school. Both Ana and Isa were Valedictorians of our class, and I remember being in awe of their ability to make me feel like it was no big deal to matriculate to Stanford while fighting for your life every minute of every day.

High school friend Sally Han Cha:
Ana’s Memorial Service

Our friendship grew to a new level when we started our annual girlfriend getaways in October, 2004. While Nancy was in San Francisco for a medical conference, she, Ana, Isa and I met for dinner in Little Italy then stayed up most of the night, talking in Nancy’s hotel room. We had such a great time together that a new tradition was born.
On one of our girlfriend getaways, we were relaxing in an adorable cabin on Whidbey Island after a long day of traveling, shopping, and eating. We were enjoying wine, cheese, crackers and gourmet chocolates in our PJs. I left this lovely scene to take a shower, and when I returned, I found myself in the middle of World War III. Ana and Nancy were having a very heated debate following a phone call that Ana had received from a CF friend in the ER. While on the phone, some of Ana’s skepticism about medical professionals struck a nerve in Dr. Nancy. Ana really showed her opinionated side that night. But that fight wasn’t the end of our annual tradition because Ana, and Nancy, were both mature enough to agree to disagree. Ana was mature beyond her years, and I will really miss having one less mature friend in my life.

CF/transplant friend Anna Modlin:

I have to say that my life with Ana was awesome. One of my last visits with her, I will always remember. She put her head on my shoulder, attempting to hold and not drop her precious grape popsicle, and said “you are my best friend.” We sat together, hugging, and I helped her eat her whole popsicle. It made her, and me so happy. We both loved to eat. We loved to swim. We loved to experience life. When we were together life was just better. After my transplant things changed so much for the better. It helped us to become closer because we no longer had to worry about crossinfection issues with CF. We were finally able to hug. Ana and Isa, and Me. We traveled all over together because of the film. That was such a gift that we got to spend the last 3 years together, living it up all over the country. Ana, Isa and I are “mooch” as the twins like to say. It means same. But with Ana we were particularly similar. I mean she always wanted to be like me. Come on now, we have the same name for goodness sake. We both have masters in counseling. Her second transplant took place on my birthday, July 13th . She passed away on the 22nd, my transplant date. We were both thrifty, Well, she was more… uhhh…Frugal. We both liked the dollar store, thrift stores, and sushi. Swimming and winning gold medals together. We both were a little vulgar, and a little funny, sometimes both at the same time. We laughed at the same dirty, profane, and dark jokes. She was my thumper at CF camp, I was her camper. Our genetics were the same as we have the same disease. We also had horrible guts to bond over. We were in the same movie. We volunteered together. Ana was my mentor, my friend, my twin. I am so thankful for every moment I spent with her. I always went searching in her kitchen for mochi and Japanese treats. Even in the end, after chemo, her hair grew in curly. Just like mine. I am sad we will not continue to have tomorrows together, but I am so thankful for the time we had. The love we shared and the memories we made. Her last request of me was to bring back water from Dubai and South Africa from my trip this summer and she added them to her collection on the wall. No matter where I go she is there with me. She is so much apart of my identity. We were not actual twins like she and Isa, but our closeness, and the similarities we shared were many. She was me, and I was her. I am so thankful to still have my Isa here, and I know I am not her twin, but I am her other Anna. I promised Ana I would be here for Isa, and make sure she is OK. I guess that means I am gonna have to go on Stenzel hikes from now on? Oy Vey! The only thing I didn’t have that Ana did was gigantic Calves to hike those mountains. I better get working on that…..

Here is a sample of Ana’s “clean” stand-up comedy:

Have you ever met a pharma rep? Aren’t they gorgeous? All of them! I mean do you really listen when they talk about their products? Yeah, enzymes, nebs, are interesting but I’m really not paying any attention cuz you’re just so damn gorgeous. The women too. I met this blond 36, 24, 36 chick who was made up like a model, trying to sell enzymes. She looked like a graduate of Tri Delt. It’s like she went from 20 (I’m a tri delt, can I help ya, help ya, help ya) to 22 (I’m a tri delt can I do ya, do ya do ya) to 30, can I sell ya, sell ya, sell ya. Then you find out she’s got a husband named Ken and drives a convertible.

Have you ever been asked to talk to a medical student? Because we’re a good case? And we’re So smart and know everything, unlike 90% of other patients? Well in walks this girl who looks about 20. She’s Asian, of course, because that’s just what happens, and she’s got glasses and looks like a deer in the headlights. Ah ha! This is my chance, I think. What can I do to freak her out? Well first there’s my ability to talk back to her in her language. I take 40 mg of zocor QD and 1mg of tacrolimus BID. My cellcept was DC’d because my ANC was too low. Then there’s talking about the details of my belly. Then to make them feel more on the spot, I ask them about themselves. So what made you go into medicine? How do you like being a slave and peon at the same time? Then they just stare blankly…

Isa and I turned forty this year. Yeah, hella old. But damn proud and grateful. I celebrated my 40th with a broken arm– that’s right. So, remember when we were kids and they’d encourage us to do the trampoline? You know, to clear our lungs? We’d jump on it, one two three, and then cough, cough, cough? Well at 40 and 12 years post-transplant, I went to a trampoline gym, like a kid in a candy store and jumped on it– one, two three, and crack crack crack.

People ask me what it’s like to have a transplant? Well there are really no words. Life is great, really great. So much easier than CF for most. For the most part we must deal with the side effects of the meds. For instance, Cyclosporine makes you ugly, prograf makes you stupid and prednisone makes you crazy. Its fun!


CF/Transplant friend Michelle Compton:

For those of you who I haven’t met, yet, I am Michelle
I am a Cystic Fibrosis adult, a Transplant recipient, a stroke survivor, and a cancer patient. And I look at my friendship with Ana from that vantage point.
I met Ana in Dec 1996. Ana’s reputation preceded her- she got her undergraduate degree at Stanford, was in Graduate school at UC Berkeley, and had taught English for a year in Japan, all while successfully managing her Cystic Fibrosis. Ana didn’t let her health get in the way of what she wanted to accomplish – I love that about her.
There was a time just after my transplant, and her first transplant, that we did a lot of camping together. One time, we had planned a trip to Mt. Lassen, to go snow camping and celebrate New Year’s Eve. – we were both very excited about this!
On the way up there, we stopped for the night at a county park to camp, dreams of scrambled eggs and crisp bacon for breakfast filling my head. In the morning, it was freezing! AND raining heavily…it’s hard to cook bacon to crispy in a frying pan that keeps filling up with water. I remember scrambling to break camp, diving into our respective cars, and eating a breakfast of trail mix and cold water- definitely NOT what I dreamed of!
But, it wasn’t until after we arrived at 9000 feet-near the top of Mt Lassen- to pitch our tents in the snow, that I learned Ana was on i.v. antibiotics. Not only was this a technical feat of administering your own ivs in the backcountry, but we were on a bed of 8 feet of snow with liquid medicines that had a “Do not freeze” warning sign! The air temperature all around us was below freezing! How would she keep her meds from becoming ice cubes?
After some group discussion (and some heated mini-group discussion!) Things turned out ok. We divided the plastic bottles of iv.s amongst us, and placed them inside our jackets for warmth, to keep them from freezing.
The weekend turned out fine. Ana and I rang in the new year- grateful that we could camp at 9000ft. and breathe easily. Ana (with a little help from us) managed her i.v.s. The snow camping was great. We made snow angels and snow men, and I learned another lesson in not letting my health stop me, by watching the “Ana Stenzel Way”.

Stanford friend Joi Spencer:

Ana and I first met in Larkin Hall at the very beginning of our freshman year. Ana and Isa lived in a downstairs room. They had their own bathroom and their own car. I was in awe! Early on, Ana and Isa told me that they had cystic fibrosis. Over the next few days, I read everything I could find on the disease. And then, I put those books and magazines aside and began one of the greatest adventures of my life as a friend to Ana and Isa.

Stanford is a city of nerds. But we were nerds amongst nerds. We studied relentlessly, we didn’t drink , and we didn’t attend any wild parties. Ann was strong and determined. Even in a hospital bed, she’d be studying. She never took the easy way out. How many times did I see her with a nebulizer in her mouth and a book in her hands- reading and highlighting? “A” is for Ana and “B” is for bad she once told me referring to her grades. I used to jokingly say that we all needed to join overachievers anonymous.

During our time at Stanford, we had the time of our lives. Perhaps it had something to do with our backgrounds. We both grew up in Los Angeles, attended public schools in the city and were born in the exact same hospital- Kaiser Sunset. We all knew the value of a dollar, grew up in close-knit families, loved Hello Kitty and most of all, the great outdoors.

During our outdoor escapades, we were chased by an elephant seal, walked over a fallen redwood tree suspended several hundred feed over a forest, and had a very close encounter with a mountain lion. The adventures could fill books. Our laughter together could heal many hearts. I know that Rosa and Kim would agree. We all came of age together and Ana loved us each as deeply as any friend could love.

Jesus told his disciples, “I call you my friends.” The Bible tells us that, “greater lover has no man than that he lay down his life for a friend.” The Proverbs state that, “A brother is born for adversity, but a friend loves at all times.” Ana was a real friend.

This year, my nephew began his Christmas list early. When he handed it to me he said sternly, “This year Auntie, stick to the list!” (referring to my propensity to buy educational toys). I promptly told him, “Honey, sometimes Aunties give us gifts that are better than the ones we could have picked out for ourselves.”

As we stand here, we want to thank God for picking out a gift for us more precious, and kind, and lovely, and strong, and funny than we could have ever picked out for ourselves. We love you Ana.


Colleague and boss Joanne Taylor:

Ana Stenzel was half Japanese and half German, but there was nothing else in her life that she did half way. When she set out to accomplish something, there was no holding her back. With all that she achieved, she also wove a career as a genetic counselor into this frenetic life.

Genetic counseling was a perfect career for Ana. She was smart, analytical and intuitive. She was intensely interested in other’s lives even though her life was vastly more interesting than most. So she brought the perfect recipe to our profession: a person who could explain complicated medical issues, but at the same time cared deeply about each patient and made every effort to connect and offer support.

In her career, Ana was also a teacher. She had an academic appointment as a Clinical Instructor in the Department of Genetics at Stanford. And when she lectured about living with CF, she gave real details: she talked about gulping down blobs of mucous and lungs that sounded like a southwest thunderstorm; all with the goal of helping medical professionals of all sorts become more empathetic and supportive caregivers.

I had an office right next to Ana’s. But the times I felt close in spirit to her were when we talked about our love of hiking. I knew we were connected somewhere deep down when she asked me one day, “do you have any interest in leaving work right at 5 on a Friday, driving for 5 hours, sleeping for a few hours in a big room with people you haven’t met, hiking 10 miles, swimming in an ice cold river, sleeping again (I’ll get back to this part in just a minute) then climbing Half Dome and hiking out and driving home all in the next day so we can get back to work on Monday morning?” Sounds great to me, I said.

And we set off on one of the most memorable adventures of my life. That second night in Yosemite neither of us wanted to have even the tent’s thin layer of plastic between us and the cool night air, or the black sky filled with a million stars. While everyone else got cozy in their tents, Ana and I agreed to set up our sleeping bags outside. We noticed a few big ants…no big deal. We had snuggled into our cold bags and were beginning to warm up when there was some rustling in the distance, some breaking sticks and a big blob passing near us. We realized a bear had just side swiped us and nearly stepped right on our stargazing eyes. It was swift, maybe 5 seconds, and we were back in our tents where we were quite happy to have that thin layer of plastic between us and the bears.

This adventure to Yosemite didn’t involve taking any time off from work, Ana made sure of that, but I was in charge over these past few years of scheduling Ana’s vacations and leaves. Ana was profoundly dedicated to her career and hated to miss work, but it is hard to make a movie, market a book, and deal with health issues without taking some time away. Ana would try to arrange her bad days after chemo so that she would be back in the office as soon as she could get moving again. She would write emails to me saying “If you need me to do intakes, I can do them from here, I’m close by in F335 (her room number in the hospital).” And then she would add “Beware- I look like hell and my hair is a fire hazard…”
Genetic counselors don’t make huge salaries. And Ana was very frugal, maybe even cheap. She told me about the store Big Lots and taught me the trick of not cutting tags off clothes that you would wear once and then return. When one colleague said she didn’t like to pay more than $30 for shoes, Ana said she didn’t like to pay more than $20 for shoes. But Ana was always more than generous with her time. She knew the value of time spent. Maybe it was time spent to write a personal thank you with pen and paper. Maybe it was time spent with a patient who needed extra support and clarification of a complicated test result. Maybe it was time spent thinking of a small, but meaningful gift for a friend after she had been traveling. We knew that things were not so important to Ana. But sharing was. That is why she wanted us to have some of her jewelry and T-shirts and books. Not because she wanted us to have her things, but because she wanted to keep sharing, even when she had physically left us on earth.
Ana reluctantly retired from her job at Stanford in April of this year. As she left the office on her last day, a colleague asked her “Ana, do you want to take the elevator or the stairs?” The obvious choice would have been the elevator, especially because Ana’s chemo treatments had left her unable to feel her feet. But our feisty colleague Ana never did anything half way or the easy way. She said “let’s take the stairs.”

Closing from Rev. Carol Barriger:
As we close, I offer to each of you deep thanks on behalf of Ana’s family. This entire celebration of her life is the gift of literally dozens of friends who helped with each detail – from program and cookies, to favors and prayer flags. Their caring is in every piece of this wonderful day–love made real. In the 2nd c. CE, the early Christian theologian Irenaeus wrote, “The glory of God is a human being fully alive; and to be alive consists in beholding God.” Ana was fully alive. She lived and loved extraordinarily, embracing both the humor and the sadness of her days. She still lives.
However, that quotation has a second part: “…and to be alive consists in beholding God.” Ana’s deep spirit believed in God, and in a life greater than the one we experience with our bodies in this time and place. She beheld God in nature, family, friends, and even in the pain, the near-death moments, of her living. She teaches us to behold God wherever we are. She saw the Divine in others, in situations, in all the places where she found herself. This requires an exceptional ability to be in the present moment in the face of a medical situation which literally defines your existence.
In a moment, we will bless and close this service. A few things first:
It is the family’s greatest hope that you can contribute to Ana’s fund at UCSF Medical Center for research into CF-related gastrointestinal oncology. You will find an envelope for that purpose in your memorial program.
As you depart for the reception, please take from the baskets at the back of the sanctuary both an envelope of seeds to plant in honor and memory of Ana, and also one of her 1,000 paper cranes. The crane is revered in Japanese tradition. Whoever folds–or receives–1,000 cranes is given a wish by the sacred crane; such as good luck, or long life. Long life. Take a crane. Now freed from its cord, it is set free like Ana.
Now would all of the children present please come here to the steps? And family members? We have something very precious in these boxes, and I am going to ask you NOT to open the boxes inside the church. Each little box holds a live monarch butterfly. The butterflies are beautiful–like Ana–and they need to be free from their boxes, to be released outside. So after the closing words, we are going to walk together, leading everyone here to the patio and the redwood grove outside. There you can open the boxes and release these beautiful butterflies. Now at the last, there is one more voice needing to be heard – Ana’s; from her will written nearly 15 years ago:
Finally, I would like to say goodbye to everyone who I was blessed enough to know. Even though everyone’s spiritual sense is different, I do believe that we will meet again someday in a different realm. I do believe in Angels, and that Angels can travel anywhere in time and space and that they can show themselves in different forms. So if you believe this too, keep looking and I will be there. Dad, as you climb the mountain peaks and look at the vast scenery, at last I will be able to join you and see what you’ve enjoyed all these years. At last I will be able to travel to all the far off lands I’ve dreamt of, and I will be able to visit my friends, fly without pain or oxygen, and dance freely. This is something to celebrate, not mourn. The greatest challenge about death is not the process or the outcome, but the longing and the missing of those left behind. I wish you healing in whatever sadness you may feel right now and hope you can find support in those around you as I once did after the loss of so many friends. Thank you for being there with me, for making my life truly joyous and fruitful. I have no regrets. Good bye, everyone. See you in the Future. I love you all. - Anabel Mariko Stenzel

[singing bowl struck]
Take a deep breath … let it out … take a deep breath … let it out … and keep breathing. Let us pray:
Into your hands, O God, we commend with love and thanksgiving and laughter, your daughter Ana. You are the giver of life and the conqueror of death. We entrust Ana to your care, just as we continue to hold her close, tight, and warm in our hearts. Be for this family their refuge and strength; an ever present help in trouble. Sustain them, and kindle in them forever the great joy that Ana called forth by her very being. We praise you, God, for your love for Ana all the days of her life among us. We thank you beyond words for all that she was to those who loved her, and all she will continue to be. We thank you that for her, sickness and sorrow are ended and she is surrounded in your Great and Radical Love which is beyond our imagining, and in which she truly believed. That Love reflects all that she gave to us, and we commit to carry it into the world. Go now, you carriers of Ana’s light. May God bless you and keep you. May God’s face shine upon you and be gracious unto you. My God look upon you with kindness and grant you holy peace – this day and every day. Let the people say: Amen.

Ana’s Closing:
(from her 1999 will)

Finally, I would like to say goodbye to everyone who I was blessed enough to know. Even though everyone’s spiritual sense is different, I do believe that we will meet again some day in a different realm. I do believe in Angels, and that Angels can travel anywhere in time and space and that they can show themselves in different forms. So if you believe this too, keep looking and I will be there. Dad, as you climb the mountain peaks and look at the vast scenery, at last I will be able to join you and see what you’ve enjoyed all these years. At last I will be able to travel to all the far off lands I’ve dreamt of, and I will be able to visit my friends, fly without pain or oxygen, and dance freely. This is something to celebrate, not mourn. The greatest challenge about death is not the process or the outcome, but the longing and the missing of those left behind. I wish you healing in whatever sadness you may feel right now and hope you can find support in those around you as I once did after the loss of so many friends. Thank you for being there with me, for making my life truly joyous and fruitful. I have no regrets. Good bye Everyone. See you in the Future. I love you all. – Anabel Mariko Stenzel

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2 Comments to “12-18-13 Words for Ana”

  1. Marla Fisher says:

    I haven’t been on Facebook for quite sometime…. I think about the two of you frequently, but only today got on your blog site and learned about losing Ana. I hope that you feel peace in recalling the lifetime of memories you have together. I feel especially fortunate having the privilege of knowing Ana, and, along with so many other memories of California, I will hold memory of her close to my heart. Sending a huge hug from Louisiana to California….Marla

  2. elizabeth michalski says:

    So very very sorry to know of our recent loss and pain.
    You write “God could never, ever grant any greater blessing to anyone born with cystic fibrosis, than to be born an identical twin”
    Truer words were not spoken. Makes me remember and smile of my twin and how wonderful it was to never feel alone in my struggles with CF but instead to always have someone there to share those with struggle with. What a difference that made to my life.


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