Where to Begin? Here and Now.

I have recently neglected my blogs, but I know that the practice of writing needs to be just that: practiced. So here I am, and there are also the Morning Pages...now I can hear Karen Blixen (Isak Dinesen) saying,

"...But I've gone ahead of my story. He'd have hated that. Denys loved to hear a story told well..." (Isak Dinesen, Out of Africa)*

So let's go back (briefly) to May-June

The workshop which I created for Field's End Writers' Community on Bainbridge Island (delivered in May and June) went well. WORD SOUP© lasted for four weeks, and at the end, the comment forms (and letters) I received from participants were exciting and encouraging. They wished it had lasted longer; they want me to offer it again.

I heard from several participants whose felt their writing improved, expanded and/or "unblocked" as a result of our sessions. That is joyful news indeed, especially considering it was a brand-new workshop. They formed a well-balanced group, and intend to continue as a writing group in the autumn.

If you know of a group which would benefit from WORD SOUP©, please leave a comment and we will explore the possibilities together!

Now, to the present and those Morning Pages: during my week at Rancho La Puerta, I met many interesting people. One of those was Shelby, a long-distance runner and an accomplished, lovely woman. We found that we have mutual acquaintances, and live close enough to visit each other. Shelby rode the ferry over a couple of weeks ago, and we took a long walk, catching up on the latest news in each other's lives.

Shelby recently completed a 50-mile run, and no, that is not a typographical error; FIFTY miles, in one day. So here is respect for her strength, determination, training and persistence!...and she reminded me of a book which I have had for years, called "The Artist's Way."

The Artist's Way was developed by Julia Cameron (it's worth an online search, if you don't know about her). Ms. Cameron is a creative, prolific, successful artist herself, and has helped to free many thousands of other artists through her work. I started her book - which requires a commitment of 12 weeks - twice in the past, but never finished it. After Shelby brought it up, I went home and pulled out my copy.

From what I found written inside, I began the study in the year 2002; I've no idea why I didn't finish it then. The second time I started it was on June 9, 2006.

June 9, 2006. Four months before Katie was diagnosed with cancer.

I don't know what stopped me from finishing it in 2006, either, but remembering that I started it again at that time was - for some reason - a shock to my system. It told me something about my state of mind, right before "the end of the world as we know it."

My family in June 2006

So, I have recommitted to study, practice, and complete it this time. I am writing the Morning Pages each day, reading the weekly chapters and doing the exercises. This time, I am ready, and - of course - it means something different now, because I am different; my life is different and my needs as an artist are different. The timing is perfect.

It struck me that the work I have done in creating WORD SOUP© is somehow connected to "The Artist's Way." The purpose of WORD SOUP© is to bring freedom, joy and inspiration to people who want to begin to write, and to those who once wrote, but have stopped (for whatever reason). It is easy and fun for me to facilitate WORD SOUP© for others, but I also need to practice artistic recovery for myself - for the painter who no longer paints, as well as for the writer who loves to write. "The Artist's Way" will promote that practice for me.

I am absorbing the wisdom, insight and healing offered in the book. Ms. Cameron knows exactly what she is writing about. There are topics covered which bring exactly the medicine I need in different areas of my creative life (including the DVD project). There is an entire section on "Crazymakers," which was tremendously helpful, reminding me that such difficulties occur in many creative endeavors and environments.

I am thankful to God for leading my mom and me to Rancho La Puerta, which led to meeting Shelby, who led to my renewed commitment to "The Artist's Way." Write on!

*I've been reading books about the "Happy Valley Set," a group of European expatriates who settled in what was then British East Africa (now Kenya) in the early-to-mid-20th century. There was a murder, never officially solved, which took place there, and I wanted to know about it. I found a copy of the (out-of-print) book, "White Mischief" by Edward Fox, which led to other biographies ("The Bolter," "Too Close to the Sun" and "The Temptress," which led to re-viewing "Out of Africa." All in all, not an inspiring group of people, but an interesting place and time in history.

"See I Am Doing a New Thing," continued...

You can read all of the postings about my life-changing week at Rancho La Puerta  

here, here, here , here and here.

September (GOLD) News

One of my favorite bloggers, Stephanie Nielson of "The NieNie Dialogues" and author of "Heaven is Here" has posted about Childhood Cancer. In that same posting, she has generously endorsed my book, "Because of Katie." Thank you, Stephanie!

Stephanie (also known by her readers as NieNie) survived an airplane crash which caused burns over more than 80% of her body. She writes a joyful, funny, sweet and real blog about her life as the mother of five children, spanning the years before and after the accident. The crash happened on the one-year anniversary of Katie's passing, so the date was very significant to me. Stephanie's journey - physical, emotional and spiritual - back from death continues to inspire me and thousands of others.

In case you didn't know, September is Pediatric Cancer Awareness Month (think "gold ribbon" when you see the pink one for breast cancer awareness). Many of our friends and acquaintances know about childhood cancer, and are committed to supporting research for better cures and treatments plans. They have started foundations, non-profit organizations, organized fundraisers, written articles, lobbied Congress, volunteered at camps and spoken freely about what they know - and what they wish they didn't know.

Clearly, it is neither wise nor acceptable to poison people - particularly sick people, especially growing children - in an attempt to cure them. But traditional chemotherapy and radiation are poison, and often lead to physical impairments like hearing loss, heart trouble and - if you can imagine the horror - secondary cancers. So a child who is cured in his youth may be diagnosed with a new cancer (not a relapse of the original disease, but an entirely new cancer) when he is older. After enduring the worst kind of sickness, this is cruel and unusual punishment.

We founded the Katie Gerstenberger Endowment for Cancer Research when Katie was in hospice care. She wanted us to direct the funds to cure cancers like the one she had (adrenocortical carcinoma). While childhood cancer is rare, adrenocortical carcinoma is extremely uncommon among that rarity, so we expanded the purpose of her endowment beyond that one form of the disease. To date, Katie's endowment is funded with nearly $193,000, and contributed $6,963 in this past year to the Ben Towne Center for Childhood Cancer Research at Seattle Children's Hospital. We are grateful to our family and friends who have helped to build this fund, as well as moved and relieved to see progress in the treatment and cure of cancer in these six short years since Katie passed away. With awareness, inspiration and financial support, it will come even faster - to children and adults who suffer from the many forms of cancer, and to those who suffer from the horrific, medieval torture-chamber-variety of treatments that have been all that is available to offer them, up until now.

To see the killer of my daughter (cancer) being brought to justice (wiped out) is profoundly gratifying to me mentally, emotionally and viscerally. If you are interested in joining this effort, please follow the links in the text in this posting to find out more.

To Dr. Michael Jensen and his colleagues at the Ben Towne Center for Childhood Cancer Research, to Carin and Jeff Towne (and everyone at the Ben Towne Foundation), to all who work tirelessly to make a better world for the sick, and for those who love them: you have my heartfelt thanks. And to Stephanie Nielson: thank you for caring about all of us who are touched by childhood cancer, and for using your blog to bless your readers!

Christmas Thoughts, Year 1

Christmas, 2005

To be honest, I have been a little baffled about why I am happy during this season. I thought that every day would be awful, full of longing and reminders of who and what is missing. The strange thing is that I am enjoying all of the small joys of Advent, and the days leading up to Christmas. I have been wondering why, and I can only think of a couple of things.

Last year at this time, we were suffering terribly. Katie was miserable in between rounds of chemo, and the last rounds were the worst. She needed medication around the clock to help her feel just "okay," and to control nausea, as well as 2-3 injections a day, and was only interested in watching TV and movies. We were all living in one small room at Ronald McDonald House, when she wasn't in the hospital: two queen-sized beds and a window-seat/bed, a table, two chairs, a TV/VCR/DVD player and (thank goodness) our own bathroom. David and I went shopping with my sister, Debbie to buy a wreath and 2 small (fake) trees, lights and decorations that the kids could make their own, and place on the windowsill of our room. Katie wasn't interested enough to finish hers. She skipped all of the opportunities at RMcD House to join in festivities, such as making gingerbread houses, caroling, a photo session with Santa or taking a holiday cruise. She just felt too awful. If you have ever loved someone who is suffering, you know that all who love and care for her suffer with her; that is compassion. It was a really hard time for all of us, especially since Katie and David LOVE Christmas.

The week of Christmas itself, Katie was an inpatient finishing a 5-day round of chemo; she spent Christmas Eve and Christmas morning in the hospital. I was with her, while Gregg stayed at Ronald McDonald House and visited us daily. We encouraged David to go home and spend Christmas with Uncle Charlie and Auntie Cheri, and to be with his grandparents, aunts, uncles and cousins. The Gerstenbergers really know how to celebrate Christmas, and we wanted David to be surrounded by that familiar love and joy. He did go, and he had a great time, but it was hard on all of us to be separated.

This year, we have enjoyed being in our own home, going to choose, cut and decorate a real tree again, hanging lights, making treats with Taylor, and (for me), spending quiet time praying with the Advent devotional readings. I love Advent; having been brought up as a Christian Scientist, I didn't know about Advent, and it was a revelation and a joy to me. The light and anticipation that are intrinsic to the season are helping me to deal with the darkness of the days and the strangeness of experiencing our first Christmas without Katie. Last year she was with us in body, but not in spirit, because she was suffering so much. This year, she is not with us in body, and I assume that she is not suffering any more; I feel she is free, and that is what I pray for her. I do not say "I know," because I cannot KNOW; I can hope and pray and feel, and that is going to have to be enough, for now. So I am thankful and joyful for what I have, and I will continue to love my girl with all of my heart. I wish she were here with us, enjoying Christmas, wearing her Santa hat with David...but she is not.

I found this poem in Elisabeth Kubler-Ross's book, On Death and Dying:

In desperate hope I go and search for her in all the corners of my room; I find
her not.
My house is small and what once has gone from it can never be
regained.
But infinite is thy mansion, my lord, and seeking her I have come
to thy door.
I stand under the golden canopy of thine evening sky and I lift
my eager eyes to thy face.
I have come to the brink of eternity from which
nothing can vanish--no hope, no happiness, no vision of a face seen through
tears.
Oh, dip my emptied life into that ocean, plunge it into the deepest
fullness. Let me for once feel that lost sweet touch in the allness of the
universe. - TAGORE, from Gitanjali

Tofino, BC, about a week after Katie's Celebration of Life

Inspiration from Christopher Reeve & Katie

I have been thinking about the actor Christopher Reeve lately. I've read a few of his/his wife's books. He wasn't my favorite actor, but I really grew to admire him after his injury. He never gave up hope, and his efforts to make progress, to stay as fit as possible and try to walk again. He went through many stages of grief after the accident. I recall something he said, to the effect that he had a choice of what his attitude to his situation would be. That he knew that if he became a "depressed hulk in a wheelchair" it would make things much worse for his family and for himself. I have been thinking about this in light of the fact that in this part of the world, we live with the illusion that we can control much more than we actually can. We are faced with so many choices every day, even as small as which type of peanut butter to buy (creamy or crunchy? Natural or with additives? Large or small?). This variety of choices tends to wear me out. However, I like to think that I have the ability and the privilege to choose...

But here is a catch: this habit of choice tends to lead to the belief that we have a right to choose. Sometimes we have; sometimes the right is only to decide how we will face something that we didn't choose. Christopher Reeve did not choose to become paralyzed at the height of his mental and physical fitness, in the prime of his life; he was able to choose how he faced it. Katie did not choose to become ill and die; I did not choose to have my daughter taken out of my life. The fact of the matter is that we were not given the power to make things work out the way we wanted them to; we tried as hard as we could to save Katie's life, but she died anyway. We must accept that. Katie faced her illness with humor, a bit of anger, a bit of fear, a lot of courage and strength, and the tools she had at hand. She faced her death the same way. Now, I get to decide how I will face my life without her presence.

Some days, I want to fight, like a mother bear whose cub has been threatened and taken. I want to fight against accepting that I did not get to decide how this turned out; I accepted everything short of this result. I adjusted to all of the hardships that were thrown at us, but I would not allow defeat into my mind; I held onto hope. Now, I just want to say, "Show me who did this, and I will shred him, tear him apart, limb from limb, and annihilate him." Of course, there is no one to blame except the disease itself. When I am in fight mode, I feel cut off from comfort. It seems that the most comfort comes when I can humbly sit with God and say, "I need Your help. Please help me today." But some days, even though I know it does no good, I still feel like fighting. This does not seem to lead to healing.

I want to choose to live with this with grace and good humor, and to see God make something, create something, out of it. I have hope for what His/Her creativity can do. I do not believe that anything can compensate me for this loss. Nothing can fill a Katie-shaped hole except Katie. But if I try to put my energy toward acceptance with love, with gentleness, perhaps it will be better for me and those around me. I believe that Christopher Reeve accomplished more, and inspired more people, after his injury than in all of his able-bodied accomplishments. Perhaps I can learn to live with my brokenness in a meaningful and loving way, too; I pray that I can.

My doctor recently asked me how I was coping, and if Katie had given me any instructions before she passed away. I thought for a minute, and told her that we had discussed Dana Reeve's passing last year, and that I told Katie that I thought she died of a broken heart after her husband, Chris, passed; I believed that she missed him so much that she became ill. At that time, Katie told me, "Mom, if I die, don't do that." The doctor said, in effect, "I guess you have no choice," indicating that Katie had given me my "marching orders." I haven't felt like giving up, but it was a reminder of Katie's clear sense of direction & her spirit.

The ovens have been fixed and the microwave was replaced. We are still awaiting parts for the dryer. I have heard from more than one person that after someone passes, things break down (thanks for sharing this, Meril and Karen T.). Our house is only 7 and a half years old; maybe it just feels the way I do: a bit broken. We need to be willing to do alot of things in a different way, in order to live with the brokenness.

October 10 - Year 1

This is the day, one year ago, that we went to Children's Hospital in Seattle through the Emergency Room entrance, and stayed. We were terrified. We were questioned for hours, by many teams of doctors. We waited. We tried to help Katie relax. We called our parents.

Thank goodness that she had the foresight to bring her favorite cozy blanket with her, the one that I made (I am not a good seamstress) with Rita's help. That blanket went everywhere with her, the entire time she was in the hospital, to every scan, procedure, room change and appointment, as a shawl, a cover, a cloak, a mask & an air filter. It is now on our bed. She was funny about it: there was a "right" side and a "wrong" side, an "up" side and a "down" side. I am the only one who understood this. And I keep it the way she liked it, on my bed. She would never let me mend it. It has some holes in it, and it is wearing thin, but I was not allowed to sew it up. I was allowed to wash it, as long as it was back with her by the end of the day.

It would be hard to describe the quality of our fear. I could tell you about it in several ways, but the one that comes to mind is this: at this hospital, with the combined resources of the University of Washington Medical Center, the Fred Hutchinson Cancer Research Center, and Children's Hospital's own renowned doctors, we were told, "We never see this." "In 25 years, I have never seen this." "This is very rare in adults, and even more rare in children." "It is inoperable, and it is not chemo-responsive." Here we had a perfectly healthy child, who just happened to slow down and have a slight fever, on and off for 3 weeks, and --WHAMMO!-- it is revealed that she has a tumor extending throughout her abdomen. One, huge, invasive tumor, and it has entered her heart.

So on this day, this year, I need to stop and say, oh, how I recall the awful feelings of that day. So much has happened since then. The world has become a darker place, for me, yet I learned & saw many important things along the way. The worst thing I learned, at least as I see it today, is that you can work as hard as you know how to work, with all of the experts and expertise available, with the best of intentions, surrounded by good will in amounts that you never dreamed possible, with a love so great that it's hard to believe it flows through one human heart, and you may still have to watch your child suffer and die. That is why the world looks so different to me now; that, and the fact that the light of one lovely, feisty, gorgeous, hilarious, spritely, creative 12-year-old girl is no longer with me in this place.

Goodwill from Katie

When Katie found out in July, 2007 that the cancer had returned, in the form of an inoperable tumor, she did something very powerful. A day or two after she got the news, at age 12, she started to write her will...on notebook paper, in pencil. She thought this through by herself. She included her favorite possessions, her money, clothing, books, etc. She was quite specific.

She said that she regretted not being able to leave David something big, like a professional baseball team (I told her that since no one in the family has that kind of money, no one would dream that she would do such a thing anyway). This was after watching the movie, "Little Big League," in case any of you know about it.

One of the most interesting things about her will is how she divided her money. She had a little savings account, where Christmas and birthday money was deposited over the years. In her will, she left half of the money to charity: the Goodwill, to be exact.

We have often donated outgrown clothing to the Goodwill collection site near our town. She and David have been with me on these trips. I don't recall ever discussing this beyond, "We need to make a stop here..." and dropping the items off. But something about it stayed with her. She knew about other charities, because we have decided as a family which charities to support, and have discussed what they do with the money that we give.

The trip to the bank to empty her account was not pleasant for me. The teller was lovely and kind when I told her what I was there to do. She asked how old Katie was, how she died, and and got tearful when I answered her questions; it was awkward. I am a helper; I felt the urge to comfort her. I told myself, "It is not your job to comfort this lady for the death of your daughter." So I stood quietly on my side of the desk, as graciously as possible under the circumstances, and waited as she counted out the money. Then I thanked her, and took it home.

I contacted the Goodwill in Seattle, and after a phone call and a bit of correspondence, I wrote the check, according to Katie's last will: $642.00 to Goodwill. It is a lovely thing, that a 12-year old who has just learned that she is dying, would think to donate half of her money to charity. I love basking in that thought, and admiring Katie for doing it--except that she is my daughter, and I would rather have her here, alive. So actually writing the check and the accompanying note was very, very difficult to do. It felt final. It is a final act, one that I am carrying out for my beloved daughter, because it was her "last will," and she is not alive to do it herself. These acts of closure feel kind of cruel.

But what a gal! She took what power she had, and used it positively. You go, girl!

Article in the Goodwill Ambassador publication about Katie's gift