Friday, May 18, 2018

Joy

It is amazing.  One day to be overwhelmed with grief and then today full on JOY!
I'll take it. It is wonderful, it is deep, it is true.
Full of joy and thankfulness. Today.



Thursday, May 17, 2018

Sharing

Just a quick post as a recommendation. This author, a former oncology nurse, nails it in what it is like on this cancer journey. I think for myself as a spouse, the loneliness and feeling of being left out —sometimes because of treatment schedules and side effects but also because folks (well meaning or fearful, at work and at play) tend to shy away from inclusivity of those with cancer, and of course the inability to be able to make plans ourselves. Spur of the moment works better - and shares more.
https://positiveoutlooksblog.com/2018/05/08/dear-every-cancer-patient-i-ever-took-care-of-im-sorry-i-didnt-get-it/
About The Writer:Lindsay is a mom of two sweet kids, wife, and proud Kansas Citian. She worked as an oncology nurse nearly her entire adult life. She thought she knows what patients go through when they are given a cancer diagnosis, she didn’t. On September 2016 she was diagnosed with stage 3 colorectal cancer and her own journey began. Follow her thoughts from both sides of the port at Here Comes The Sun and you can also follow her on Instagram.
And for a wee bit of joy, the lovely garden that can be viewed from inside UVM's oncology unit this week.

Wednesday, May 2, 2018

She Sits

Spring. 
As the dogs and I hurry about intent on starting our day, 
She sits. 
Soft as a cat, 
grey as the guardian fir, 
as motionless as the branch she perches upon, 
the owl awaits the first stirring of her morning meal.



Tuesday, April 10, 2018

The Place You Are Called To

"The place God calls you to is the place where your deep gladness and the world’s deepest hunger meet." —Frederick Buechner
To be honest, I have struggled since the diagnosis between deep love, grateful joy, and paralysing sadness. There will be times driving home from work that I realize I need to cry but there is no time or room for crying. But then counterintuitively, I find that I can laugh with a new joy and gratitude that hadn't come as readily before. It can be a comment from a colleague, one of Jim's jokes, or even a simple observation that sets me off laughing. And love seems to burn in my chest like wood in a wood stove. At times I can feel love's heat so physically inside me that I question if perhaps it is really a heart attack in the making.

At first, in January, all of my hopes for the future and all of my work lost meaning. What has returned has been my knowing of the meaningfulness of my work. My colleagues at Champlain's Emergent Media Center (EMC) have held me up, have given me leeway, and have continued to bring excellence to their work and to our students. The students have reminded me, through their determination and the joy they bring, of the beauty and importance of our work together.

Last week, three events underscored this for me. Each of which brought me to the truth of the quote above.
One event was the testing of the new mobile BREAKAWAY  game with 4th through 7th graders at the Boys and Girls Club in Burlington. They were incredibly engaged in the game and expressed through their loud reactions (called out to no one in particular) their excitement in playing:
“Ooooh! It’s a soccer game!”
"He’s Bad!”
“Bright Orange Hair!”
“This one is obviously going to win...I don’t know what to do.”
“I said, I don’t know.”
“We lost!”
“Watch, I’ll fake this one (game character) out!”
“Why are you copying me? I have pink hair - three of them are copying me - they have pink hair.”
“My team wins! We did it!”
“I love this game!”
Narrative screen from the new BREAKAWAY mobile game in development
Customization screen from the new BREAKAWAY mobile game in development
It was a wonderful way for my students to see how their work will appeal to the youth it is being built for. Upon returning to the EMC, the BREAKAWAY team began implementing on the children' reactions.

BREAKAWAY youth campers in El Salvador
That same day had begun with great news, a paper that I co-wrote with Helen Wang at the University of Buffalo and her PhD candidates Vivian Wu and Ji Hye Echo on the impact of BREAKAWAY at addressing violence against women and girls has been accepted for the MIT Connected Learning Summit. The acknowledgment of the greater community is a measure of one's path but my dream is to spread the message. I hope we can inspire others to employ BREAKAWAY as a tool for change, and to look at the methods that we used to develop it, honoring the creativity of our youth AND employing Sabido style methods, to change the needle on gender based and cultural violence.

Message from one of the BREAKAWAY youth campers in El Salvador
Then lastly and most profoundly, I received an email from a former student who had worked on BREAKAWAY many moons ago. They wrote a deeply personal letter about the struggles they had been facing as a student and after graduation, how what kept coming back to them was "...about my experience and how much I unknowingly took from it" They went on to say how much they have grown and come to find their ground. They ended the note with "I wanted to say thank you for keeping in touch as long as you did. And for all of the positivity and opportunity you brought into my life. I now can truly understand the growth I made while working and learning with you. I regret not being able to keep in touch, but I'm reaching out to say that I truly appreciate you as a teacher and a friend."

Writing that even now brings tears and yet joy. It is true, in whatever language one calls the holy, "The place God calls you to is the place where your deep gladness and the world’s deepest hunger meet."

For this I am grateful.

From the BREAKAWAY camp in El Salvador


Tuesday, March 27, 2018

Love and Breathing

The best of news today! 
This morning, we were able to see the scans and it was immediately noticeable - so was the smile on the doctor's face. The tumors have reduced from 25-50%! As Jim's sister Cathy, a former oncology nurse, told me "even no change would have been a good result". We were over the moon. What a wonderful start to Spring!


The rest of the day we've been in the chemo ward where Jim continues to amuse the nurses and uplift the environment - not that the place is dour, far from it. Despite all the linoleum, contraptions, tubes, and wires the folks here personalize it with messages of hope and love. The two "breathe" signs (can you find the second?) below really resonated with me today.


So you might wonder what a good scan means when one has Stage 4 cancer, it means we continue on this medical path. We keep with the plan, chemo, exercise, good friends and family, positive thoughts and prayers, and thoughtful approaches to nutrition and supplements. Then another scan in about 2 or 3 months.


And yes, I can breathe again while Jim is planning his bicycling routes for the warmer months. 😄



Monday, March 26, 2018

Standing Still

I am standing still, afraid to move forward.

Today is the day that Jim gets his first scan since he was originally diagnosed with cancer in December. It has been 4 rounds of chemo treatments, one extended, and approximately 50 days of skiing for Jim. I've been the tag along, the note taker, the researcher and reader, the worrier. Jim has been energetic, determined, joyful, and gracious. I've learned a lot from him about resiliency and have been constantly awed by him through this all.
This is also the last week of me being 60 - and the last week of Lent - when Christ is tried, tortured and murdered and then rises - from nails and ashes to light and eternal life. I can really relate to that story in new ways now. Chemo is a type of trial and torture - but one that connects the patient to truly loving hospital staff. On the other hand, Easter will also be April Fools Day and I do feel like this is some twisted sort of joke or mistake.

Still, I'm not in a Spring-like, celebratory mood. 60 (much like my 57th year which I thought would be great because I was born in 1957 - but wasn't because both of my parents died) has been a real downer even though the number originally meant nothing to me and I wasn't anticipating the year to end the way it has. There has been marvelous glimmers of joy this year such as Tegan and my trip (finally) to Europe, or Jim's summer deck building, and the deeper connection to Jim's son Pat, partner Emily, and their little firecracker daughter, our granddaughter who turns 3 this coming month, Satori!


However the words "stage 4 cancer" have cast me in a foul mood I can't seem to shake. I still have the terrifying images from his first scan searing my mind. I am afraid of today's scan. I am afraid of what this new year will bring.

What I am grateful for is how family and friends have gathered around. You have held on to us and baked love in. In my darkest hours, I wrap my soul in your love, prayers, thoughts, hugs, and actions. Together with Jim's indomitable spirit, you lift me up so that I can see the stars shining in the burnt cobalt sky and I am reaching for hope.


Wednesday, February 7, 2018

The Diamond

The vows of a marriage "for richer, for poorer, in sickness, and in health, til death do us part".

As a young girl, all of us in the neighborhood endlessly invented and played games. There was the Miss America game, the teacher game, the run away nun game (as in a motorcycle riding version of The Flying Nun), the huntress game, the spy game (Man from UNCLE), the Cinderella game (aka Disney complete with singing mice), and the getting married game (any surprise I am in games still?).

It seems as if our lives as young girls were geared to saying those vows, and when the great day of the anticipated event arrives, it flies by. The prince and princess take the stage and as in any youthful experience it is the words "for richer...in health", the rainbow and the sunrise, the flow of yet to be discoveries - the honeymoon, purchasing the first home, children and baking cookies, vacations, and yet to be joyful achievements, that are expressed and celebrated.

These dreams are secured with two golden bands, but the initial promise is made with a diamond.
Mom and Dad 1956
In the last years of my mother's life she was overcome with two chronic diseases. Both left her, the wise and loving caregiver, painfully immobile. In turn, it was my Dad who became her caregiver. In the last year of his life, he got pneumonia and then suffered a heart attack. I immediately departed a conference that my students and I were presenting at to be with my family. My siblings and I gathered around, taking turns in caring for both of them. As I sat with my Mom in the evening, she became very distraught. She shared that a few months before she had lost her engagement ring. For my steady as a rock Mom, she was unusually panicked. Her ring symbolized their union - and the two acts, the loss of the ring and my father now hospitalized, compounded her fear of losing him.

Mom had become so thin, a fragile hatchling of her former beauty, that I could envision the ring slipping gently off as she napped.  Knowing her patterns, I began a search and buried deep in the pockets of the couch mechanisms, I found it! If only you could have seen her joy, her radiance, and then the pure sleep it enabled her that evening.
Dad and Mom 2013
Yesterday, after returning home, cooking dinner, taking out garbage, straightening up, feeding dogs, letting them in and out, flipping and folding laundry and then settling in beside Jim on the couch, we were able to chat with my brother Steve by phone. As I sat there, I unconsciously began to play with my rings. But something was immediately wrong. The edge was sharp, there was no bevel, my diamond was gone!

After only dating a month, Jim asked me to marry him thirteen years ago. Looking into his hazel eyes and seeing their depth, knowing I knew him in a profound way (he is his father's son - the other man I once called Dad), I said something to the effect of "You are crazy. Yes!".

Thus began our search for the perfect rings. And then the official ask planned by Jim with the collaboration of my daughter Tegan: a surprise dinner with a fist sized plastic ring, balloons, a cute stuffed dog, the actual diamond, and applause by the surrounding diners.

Our diamond, our joy, our promise.

I was besides myself last night. I searched in the crystalline snow where I had been with the dogs, through the garbage and recycling, around the two sinks where I had done dishes and washed my hands. Jim took apart the two traps. I dissolved into tears holding him tight. I was my mother with the same fears. How could this happen now?

Diamond. Stone of winter's ice, purest carbon, hardest of substances, strength, love, fidelity. It is said to be known since antiquity as the
"Stone of Invincibility" bringing victory, superior strength, fortitude and courage to its wearer. It is associated with lightning and fearlessness, and for its properties of protection. It is a symbol of wealth and manifesting abundance in one’s life, an amplifier of energies, goals and intent, and is highly effective in magnifying the vibrations of other crystals for healing. It is particularly beneficial set in gold and worn on the left arm."
But like the story of five years before, I carefully and thoroughly followed my footsteps, and in unfolding the just folded laundry, it tumbled out onto the floor. Glittering, promising, giving me back hope that has been hard to conjure up.

That has been my gift. In that moment, I felt God's love holding us up, celebrating, promising "for richer, for poorer, in sickness, and in health, til death do us part". We will be fine. We are joyous.

Jim and me 2005




Monday, February 5, 2018

Ghosts and Angels

I think I am coming to understand ghosts.

When I was a child, my family had the first movie camera and projector on the block and perhaps much further! It was amazing not only in its technology but also how it drew us together: family and friends would come over just to enjoy movie night. That is part of the gig when your Dad is a scientist/engineer/inventor/futurist/artist working for the very first global gizmo corporation. You are almost guaranteed to be an "early adopter". However the seeming opposite also happens - images of the past continue to flicker and haunt, pale representations of those whom I have loved, have loved me, and are gone. Celluloid ghosts.

But back then, in the 1960's, to own a movie was a big deal, unlike today when we are faced with endless Netflix or Hulu selections. Then we had two commercial movie selections and we could record our own home movies complete with sound!! Movie nights always began with the same black and white cartoon of "Andy Panda" (which I still believe Dad bought just for me - Ann D). A change of reels and next to glimmer onto Dad's portable screen were our home movies: loops of stunts by siblings and myself, our cousins, aunts, uncles, grandparents, sun filtered moments at the lake, on the ice, backyard barbecues, cozy Christmases, all of us together, sometimes embarrassingly so. These were capped off by the "feature film", our copy of the horror movie "It Came From Outer Space".

Here is a confession, I have never seen "It Caaammme from Oooouter Spaaaaace" in its entirety despite it being replayed constantly in our home. Just past the opening titles, I would fly to the furthest room in the house and cover my ears from the sound. To this day, horror movies horrify me despite how cool it may have been to watch with my pre-teen friends.

So as one can imagine, I've never really liked the idea of ghosts either - phantoms one could not really see except when you really didn't want to - like when you are alone, and it is dark, and you are lost.

But that is exactly where I'm finding myself these days,
alone,
in the dark,
lost.

Yet this time, I am becoming the ghost.

Ghosts never really want to leave their lives, it wasn't their choice to change to begin with, and so, of course, they try to remain and are caught in a no man's land of unreality. That is exactly how I am feeling.


I have deeply embraced my life before this New Year's Eve.  I am even more deeply in love with and thankful to my husband. Except now two unwanted characters have entered our marriage, like undesired house guests that won't leave, Chemo and Cancer. Our life has become a series of unfathomable fatigue, unexpected symptoms, and silent evenings. Within each cycle they enter with a bang, then slowly, in starts and stops they depart, our life returns to the former normal only to crash to a halt every "day 15".


What remains brilliant is Jim's spirit, with whom I fell so deeply in love almost 13 years to the month ago. He is what my dad would have called "a real trooper" appreciating everyone and every moment, finding joy despite the sudden turn. I, on the other hand, am a bundle of nervous fear and concern. I watch him like a doe watches her newborn knowing a werewolf stalks nearby. I read everything I can. The daughter of a futurist, I cannot stop myself. The information horrifies. The horror draws in. The statistical outcomes stalk. Stop! I don't want to know. I just want to be able to best support my love, to beat those stats, to locate hope.

I am the ghost, searching, caught in the transition, wishing for the past, fearful of the future.

Yet even in the dark, I am awed by amazingly bright stars, constellations really. The appreciation and tenderness of my husband. The dazzling love of those who reach out, call, visit, text, send cards and balloons, who celebrate my brave husband, those who give us their hope and their strength. The angels among us. They call me out. We are alive. We are not alone.


Saturday, January 27, 2018

When Compassion Wakes Up

When compassion wakes up in us, we find ourselves more willing to become vulnerable, to take the risk of entering the pain of others. We open our lives to them in a genuine willingness to be known. We tell them our own story of suffering as a way of offering healing and hope. We feel their heart bleeding into ours; we catch their tears. We relieve their pain as much as we are able, and by relieving theirs, we relieve God’s.
—Sue Monk Kidd, Source: Firstlight