Purple Crane Project

When Jan died on September 27, I had some ideas about what I wanted to say in her obituary. I wanted to include one of her poems in it and had one in mind she’d written about Japan called Three Days. It reflected the feelings of loss that I was experiencing.

That next morning, as George, Graham, Shawn and I were having breakfast, George said he needed one of us to write the obituary. I’d written mom and dad’s, with help and input from others, and as a regular reader of obituaries in the paper (something very few people know about me…) I felt I had a good angle on how to write them well. Shawn volunteered before I could speak up, and suddenly I was faced with the prospect of having to override her offer. I didn’t want to be a petty person. I did, however, really want to do it. The grown up me took a deep breath and said, ‘how about you write it and I’ll do the review and edit it?’ That seemed to be a good compromise.

Shawn went to work on it later that morning and mentioned she wanted to include one of Jan’s poems. Great minds were thinking alike. She got out “In Flight”, Jan’s book of poetry, to find one she liked. I didn’t want to sway her thinking with my choice, so I waited to see what she selected. She ultimately chose One Thousand Cranes and with that, launched a movement that has been building momentum with each passing day.

After reading Jan’s obituary, Matt Hanson, a fellow volunteer at the PanCAN affiliate here asked me if he could use the poem and Jan’s story to launch an outreach program he called The Purple Crane Project. His idea was brilliantly simple – use the act of folding origami cranes out of purple paper as a means of educating students at the elementary school level and using the cranes they folded as symbols of hope for patients struggling with pancreatic cancer. Elegant, profound, and appropriate – all are words I’ve used to describe the project. Jan’s reaction would be amazement and giddiness that something she wrote could be the inspiration for such a wonderful outreach effort.

Matt planned on giving the first crane to me the day of the PurpleStride Walk on November 6. During one of his outreach visits to Virginia Mason, however, he met a woman named Debbie who was in the midst of her chemo treatments. Matt sensed her need and gave the first crane to her. It was something tangible, something unexpected, and the message on the wings hit her heart. She took the crane home and put it where she could see it every day. We all realized that this had some powerful potential and would be a meaningful activity to share.

To date, over 1,000 purple cranes have been carefully folded and thoughtfully given away. The message has gone out around the world and people are working to create similar programs in other regions. The reach of these beautiful birds has been more than amazing. It has been magical.

In Japan, the tradition Senbazuru, the act of folding 1,000 cranes is done when someone has a wish, be it for peace, health, or luck. Folding the cranes is a true labor of love, as reflected in Jan’s poem. At her memorial service, several thousand cranes in all sizes and colors were delivered by her coworkers at Delta Airlines in tribute to her. As one of her friends said to me, “Our service scores may be down a little for the month of October, but it was worth it – we all spent time on flights in the galley folding our fingers silly.” Each crease, each detail, was crafted with their love and dedication.

The Purple Crane Project puts into action everything I could hope for as a tribute to Jan’s memory. Simply put, it gives hope wings and sends them up with a prayer. Shawn’s selection of poetry that morning was the key. It is a reminder for all of us that magic still exists and wonderful things can come from letting go of control, even when we think we really need it.

One Thousand Cranes

Fingers
honor commitment
with gifts of origami precision,
contemplate the recipient one thousand times.
Sacred creases sealed with oil of human hands, the seams of careful nail
until fingerprints and wishes
flutter to take flight,
carrying
prayers

-Jan Veile
1954-2011

 

Dropping Like Flies

Three years ago, if someone asked me if there was any cancer in my family history, I would have said no.  Now we find out we are riddled with it.  Sure, there were a couple of cases in my extended family, but in my immediate family, we’d been lucky.  Only Jan’s brush with melanoma 25 years ago was noted.  We felt pretty fortunate about how healthy we’d been.

Today, three out of the seven of my immediate family members are gone, all to cancer – two to pancreatic cancer and one to neuroendocrine cancer, unknown in origin.  And that boggles my mind.  How did we get to this point?

It seems as though this all tracks back to Aunt Betty’s decline in 2007.  That feels like the beginning of it all.  We’d lost Uncle Keith the year before and that was sad, but I could see Betty was in trouble at her last Labor Day event.  She was frail and low energy, two things she normally was not, even at 90.  I spent the fall driving down on Saturdays to see her and watched her fade away.  She passed away in November and losing her was hard for me.  She was such a big part of my life and I felt lost at the idea of a world without her. Now, in hindsight, going to her funeral feels like a warm up for what was to come. 

Jan was diagnosed less than a year later with pancreatic cancer.  It was a death sentence and we all knew it.  The big question was “how long?”  I felt it deep in my bones and ached at the idea of losing Jan, too.  I resolved to do my best to be there for her and we spent some wonderful hours together.  Through it all, we became closer than ever. 

Dad was diagnosed almost a year to the day after Jan.  He had been praying to take her cancer away – he volunteered himself to go in her place, so to have this now be a shared disease was almost too much to take.  I felt as though he was going to be OK – that his tumor was operable and he would be able to get through it.  What I didn’t factor in to my thinking was his age.  At 82, he was not really able to tolerate the treatments as well as Jan did.  His first round of treatment was meant to shrink the tumor so they could remove it.  He handled that fairly well, at least right up to the end.  He landed in the hospital with kidney failure in December.  Processing the chemo toxins through his kidneys, which were scarred, was too much for them to handle.  Putting him on a second round of chemo seemed foolhardy, but it provided the needed hope that a cure could be achieved.  He struggled through this round and seemed to diminish before our eyes.  His death in May seemed sudden, considering the goals of his treatment.

Mom’s diagnosis came out of the blue.  She had slowed down a lot in the last few years, but we attributed it to age and the fact that dad had done so much for her.  When she had to become his caregiver, it was rough on her.  She found herself hurting a lot – her hip was troubling her and getting up and down from her chair was hard. She was convinced she had bursitis and it would have to wait – she was busy caring for dad.  At times, mom lost her patience with him and then felt guilty about it.  She told me that it was hard to not feel upset at having to do so much – especially when it hurt her to do it.  Dad felt bad about needing so much help and at times, I felt like a mediator between them.  After dad died, I talked often with mom on the phone and she had a lot of remorse over her impatience with him.  I let her talk and assured her that he understood.  I knew, though, that she felt she’d let him down.  Then, in December, her bursitis was suddenly diagnosed as a tumor on her spine and she quickly changed from a woman with the aches and pains of aging to a cancer victim herself.  She had been struggling with her own internal agonies throughout dad’s illness – no wonder things had been hard for her.  In one of our conversations, I pointed this out and it then hit her – she had been taking care of dad when she was suffering herself.  It helped ease her guilt and she forgave herself for not being able to do more for him.

She immediately rejected all treatments except palliative radiation for the pain.  She did not want what dad had gone through and since her cancer was terminal, she saw no reason to prolong things.  Pragmatic to the end, she felt this was exactly what she needed – she was ready to be with dad and saw this as her path out.  I respected her decision and hoped it was not going to be too hard on her – and the rest of us.  Suddenly, instead of mapping out the last years of her life, we were dealing with what to do once she was gone.  It was a whirlwind six weeks that seemed to go by in a flash and yet take forever.  Each visit, each phone call, I wondered if it would be the last.  I was torn between wanting her to be there for me and wanting her to be where I knew she wanted to be – with dad.  It was difficult, but since it was what she wanted, it had to be OK.

On New Year’s Eve, I missed a call from my cousin.  I assumed she was calling to check on mom.  She called again the next day and told me her father, Paul, my dad’s brother had died.  His death was completely out of the blue – he’d been outside in the yard doing something and collapsed. At that point, I felt like a sponge that was already so full of water that it couldn’t take in more.  I could barely process what had happened and how to deal with it.  Mom was devastated and asked me to write a note forher to Aunt Sally expressing her sympathy.  When I talked to mom in early January, she said to me “we’re dropping like flies, aren’t we?”  And I had to agree, we were. 

Jan, my dear, sweet Jan – she was the one we all hoped would beat the odds.  She lived through so much the past three years and kept her attitude up all the while.  I only once saw her break down – and that was early in her treatment when her white cell count was too low for her to have chemo.  She felt she’d failed a test and let people down.  She sobbed in my arms then, and I had to tell myself not to break down, too.  I wanted to be strong for her, but I was dying inside.  I got to my car and fell apart, able then to let out my own fears and frustration.  Even through her intense protocol in her second year, she was positive.  She was staying with me then, and after her interferon treatments, she would shake with fever and moan in her room.  I hovered near the door, feeling inadequate and impotent to help her.  I would bring her a heating pad and rub her back, making sure she was as comfortable as possible.  It was a glimpse in to what George and mom went through and made me better able to understand the strain. 

Mom and dad seemed to have made a pact with God to go before Jan.  Part of me hoped that the deal they’d struck was that they would go in her place – to be the sacrifice they hoped they could be and save Jan. It seemed that surely the universe must see that as a fair deal.  But it wasn’t to be – Jan went from doing pretty well this summer to being unable to keep food down in a few short weeks.  That signaled the beginning of the end.  I was able to spend the last four days of her life with her, which will forever be a gift.  I had the conversations with her that she wanted to have, I massaged her with lotion, lifted her slight weight in to bed and helped her feel as good as possible.  I got good at rubbing her back where it ached and tried to do what she needed most – whatever that was.  I was a witness to the true love she shared with George and saw how deeply entwined their souls were. It was beautiful to behold.  I kept my promise to mom that I would be there for Jan and take care of her.  I kept my promise to Jan that I would be with her at the end.  I felt grateful that she allowed me that.

Now the worst has happened.  Now what?  After three years of cancer, how does my life go on?  In the space of four years, I’ve lost five amazing people from my life – Betty, Dad, Paul, Mom and Jan.  I am bereft.  I am running on empty.  What takes the place in my life where the worry and care has been?  How do I get back to me – and figure out what the new normal is? I am tired of sympathy – the cards, calls, flowers, and pity – sick to death of death.  And yet, I feel like screaming at people “Do you have any idea what I’ve been through? How hard this has been to stay on track and keep things together? Do you have a clue??” Because the answer would be no, they don’t.  No one but I know what it’s like to live in my skin.  And only a handful of people really know how hard it’s been. 

I keep reminding myself that this didn’t just happen to me – it happened to our whole family and we are all affected.  But it feels so personal – and I feel so much pain at times it is overwhelming.  And then, I pick myself up, as a true stoic Norwegian would, kick myself in the butt and carry on.  It’s how I was raised and it’s what I know.  I have to figure out how to operate in a world where I’ve lost my center and my lifelines.  I have to figure out how to be my own center and be a lifeline to others when needed.  I want to fill the voids in my life with people who understand and can support me when I am hurting. 

It is going to take a lot of time before I can look back on all this and feel like I’ve survived.  After a series of body blows like this, getting up off the mat and standing upright feels risky.  There’s always another one coming along and it could be worse.  I feel shell-shocked and need to be protected somehow.  The idea of crawling into a cave and keeping my back to the wall sounds good – except that I’m claustrophobic, so I guess that won’t work.  For now, I count each day a success when I get up and do what I am supposed to do and don’t wallow.  I feel good when I acknowledge the pain but don’t let it overtake me.  I feel better when I reach out to connect for some compassion and comfort from people who care rather than keeping it to myself.  The twist is that I used to call mom, dad, and Jan for that – they were my top three go-to people and now I have to reach out to others. 

It is a process, they say. The Grief Process.  The challenge is, I never got through an entire process of one loss before starting the next one.  My processes are all mixed together and it makes it hard to know what I’m feeling for whom.  I guess I’ll have to treat it like a river, with different channels that move at different rates.  Sometimes I’ll be in one and then move to another.  I’ll let the current carry me for awhile before I decide to swim.  For now, I have to let things be, put down my load, and focus on getting through the day well.

Four years ago, I hadn’t experienced significant loss.  Today, I have my black belt in care giving, caretaking, and grief.  I have cleaned out more closets than I care to think about. I have held the hands of my dearest loved ones and said goodbye.  I have done what needed to be done and loved without fear.  I have seen death and felt at peace.  I took the body blows, I have kept my head, and I have felt the pain.  I will keep getting back up because I have no other choice.  That is who I am.

My sister, my friend

I spent the last 4 days of her life with Jan and kept my promise to be there for her husband and son. She was my best friend – something that we were only able to do once we were both adults. I looked to her for a lot of good counsel, moral support and shared humor. We were lucky to have each other and missing her will be a daily thing.

The take away from this is that having a relationship where everything you need to say has been said and you are completely known to one another is really what it’s all about. I have no regrets when it comes to her and that helps. She is at peace and lives on in my heart.

My beautiful sister

Companion Star

I became an orphan at 52 years old. That is how it feels losing both of my parents in the past year. They were the pillars of our family shelter and they are suddenly gone. It feels like I’ve lost my moorings and am adrift. The curious thing is that I didn’t really lean on them for much, but knowing they were there was all I needed to feel safe. I am a capable person; don’t get me wrong. I know I can take care of myself and my family. I just liked knowing they were always there, in my corner, ready to help. Now I look for them and see the empty space they leave behind and it is huge. It’s more than an empty space; it feels to me like a black hole. A vast, dark place that might consume you.

My parents were exceptional at being parents. They were both committed to creating family, whether through their own children or through other people. They knew how to connect and nurture; how to love and support, and how to set the boundaries that gave enough latitude without letting you run amok. They were, in short, the best. I know I was lucky; I saw other parents and mine always came out ahead in comparison. Of course, I am biased, but I know they were that good. Learning to live in a world without them seems like a daunting task, but it’s one I have to get through if I am to try to do the same for my own family.

I’ve gotten to know a lot more about myself through all of this and I’ve gotten to know my brothers and sisters in a new way. I learned that I can overcome my fears to do the right thing, even when I would rather not. I’ve learned that I’m not afraid to look death in the face and stand firm. I can hold a hand and feel love. I have learned that the words “honor thy father and mother” mean more than I thought.

About my siblings, I’ve learned that each one has a unique gift they bring to bear; Jan is the embodiment of peace and joy. Being in her presence, one can truly relax. Kevin is a bottom line, cut to the chase thinker and communicator. His loyalty and love for mom and dad were apparent both in the times he could be present but also in his absences. He reached across the distance to be sure he was there for them when needed. Shawn is a force to be reckoned with. She doesn’t take no for an answer and she is upbeat and cheerful in the face of some challenging moments. Rob – I can’t say enough good about Rob. What he was able to do for mom in her last days was a true gift for all of us. His depth of compassion and devotion was never more apparent than when he was doing mom’s hair. He was so gentle with her and she looked beautiful when he was done. I never knew my brother had that in him.

I know it hasn’t fully hit me what it means to be a 52 year old orphan. It’s uncharted territory and I just have to make my way through. I do know that I won’t be alone. I have some wonderful companions in the journey, and for that I feel blessed. I don’t think I will ever not miss my parents – that is a constant, I’m sure. I will learn to navigate alone and listen to the lessons that they have incorporated in me. In creating family, mom and dad made sure we would never be alone. And a black hole gives birth, poetically, to a companion star on the other side. I will look for that star to guide my way.

My sweet mom