Kindness in the Trenches

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Jill Scott

From Jill Scott’s participation in the breastcancer.org online community

Jill’s Husband, Michael Scott, writes:

After Jill’s death, I discovered her extensive participation in an online forum for breast cancer patients — breastcancer.org — a community of women around the world facing a disease that will eventually take their lives. This forum is a place for sharing experiences among people who understand each others’ plight. I knew of her participation in this forum and had read some of her posts — but did not know the extent of it, or the meaning of it for her and the people she was in touch with.

Jill had stage IV metastatic breast cancer for almost seven years. Stage IV may be manageable for a time, but it is not curable and seven years is considered to be a long time to live with it — her doctors expected a lot less. She originally had breast cancer in 1996, but after treatment was given the “all clear”. She had 12 good years, but in 2008 the original cancer reappeared elsewhere in her body. She had many new rounds of chemotherapy and was in more or less continuous treatment until her death.

These seven years were challenging but mostly workable. The side effects were always an issue, but not overwhelming. We took some magnificent trips; Jill planned the marriage of one of our sons, celebrated the engagement of the other, and enjoyed the early life of two gorgeous granddaughters. She never missed a day of work, and continued serving the Shambhala Buddhist community until she retired, three months before her life ended — working diligently in the Office of Practice and Education, furthering the paths of hundreds of practitioners.

She declined suddenly and quickly at the end, surprising her doctors and her family alike. She left very quietly. In some sense, her passing was not unexpected. But death is shocking and unfathomable regardless of how much it may be anticipated. Her eventual departure was devastating and poignant.

Jill’s many contributions to the online breast cancer forum provide a vivid example of how to be present in very difficult circumstances. Her intention to help others was remarkable. After silently following the discussion for four years, in late 2012 she jumped in, realizing that she must accept her membership in a club that no one wants to belong to. In the following 2.5 years until she died, she posted 490 times, offering support, insight, empathy, perspective, and humor.

She was able to speak openly in this forum in a way that was not so easy with family or friends. These women understand each others’ situation very clearly. They are aware of the reality of their own death; no one survives stage IV breast cancer long term. They talk candidly about their situation, their outlook, their fears, their desires for their families, and how to live with a positive attitude in this circumstance.

This forum became a place where Jill expressed her wisdom and her caring. After she died, I posted news of her passing to the women in this community, who responded with tremendous sadness, appreciation, and love. She clearly meant a lot to them. The text below is drawn from her many contributions to a wide variety of discussion topics — some initiated by her, and some by others in the forum.

Michael Scott
August 1, 2015

Empathy for new members of the stage IV club

We are so sorry you find yourself a member of this club that none of us wants to belong to. As many have already said, the beginning is hardest — shock, disappointment, sadness, anger, FEAR. This board is the perfect place to come when you feel the need to rant, wail or seek hope. There are wonderful people here who will offer you warm support, good information, a few laughs and real understanding of what you are going through.

* * * *

When I first came to this forum, I was lifted by people sharing their good news, felt less alone hearing other voices of despair, frustration, anxiety and fear, and encouraged by how people were meeting the challenge of still finding something to smile about in the face of this awful disease. I think of these women as warriors, not in the sense of fighting, but as strong, positive, loving people who are learning to accept the reality of this disease but are not letting it completely define them.

* * * *

You will feel many difficult emotions. And they will continue to make their appearance from time to time. We’ve all been there. This will change over time and you will learn to live each day fully — not so caught in regretting the past or worrying so much about the future. Live the life you have. Take really good care of yourself and do things that make you feel good. Now!

* * * *

None of us knows when our time is up, so as you move forward on this journey, try to find in each day something that makes you smile, tickles your curiosity, fills you with gratitude, and helps you relax.

* * * *

Jill Scott

Take care of yourself, cherish every moment, get a lot of sleep, breathe and celebrate that you still can, shed the tears you need to shed with gentleness towards yourself, but don’t get stuck there. And as someone else said — this is not your fault! There will always be down days — it comes with the territory. The storms will pass and you will still find joy if you stay open.

* * * *

True strength comes from acknowledging your darkest feelings rather than try to cover them up, push them away, etc. Be kind to yourself and shed what tears you need to shed. My radiation oncologist, a wonderful man, said tears are good as they release stress and toxins as well!

* * * *

Enjoy the life you have. Taking care of yourself and doing things you enjoy will have a positive effect on your state of mind and can be a gift to those around you.

* * * *

If you stay in touch with your essential nature that is strong, open, compassionate and wise, the warmth of your radiance will touch others. What is more meaningful than that?

 

Reflecting on her situation

There are so many things we can’t control, but what I know I can do is work with my mind. Not easy, but now is now and there isn’t any other now. So I turn my mind to what I feel grateful for today.

* * * *

I still have a body and breath and do my best to be fully present in my life, one day at a time, with appreciation and gratitude for what brings me joy and pleasure, and allowing space for the more difficult emotions to arise and dissolve. I do believe that true bravery doesn’t try to crush emotions. This is the only place I feel comfortable and safe to let it rip when I need to vent.

* * * *

Jill Scott

I have my share of dark and scary thoughts. I feel them, even explore them, and then try to turn down the volume, replacing them as best I can with something positive. There’s little we can control with this beast of a disease, but I refuse to live what life I have left — long or short — mired in negative thoughts.

* * * *

Other people really don’t get it with cancer because they haven’t had to learn about it, and too much information makes them uncomfortable. I’ve just finished 6 rounds of chemotherapy and even people close to me say, hooray, you’re done. NOT! Done with this drug for now, but there will be more, and more…

* * * *

I ache with sadness that my illness has brought this into my family’s lives. My greatest source of pain is how this would affect my grown children. But this is life, after all — good times, bad times, highs and lows, want it or not.

* * * *

There are actions I regret having taken, but rather than beat myself up, I try to use the awareness to make wiser choices in the present. I doubt that when the time comes for the lights to go out for me, I will be consumed by regrets about not having chosen a career over staying home with my children, or the mistake that was my first marriage, or the house we didn’t buy. Well, maybe I will have a small moment for the gorgeous shoes I could have worn if my feet weren’t hurting so much as a side effect of these drugs I’m taking. 🙂

* * * *

I am about to lose my hair completely for the first time and seeing all you beauties in the pictures you’ve posted is helping me so much. I’m getting my hairdresser to give me a Judi Dench cut this week so I can transition without clumps of hair coming away from my head at once. So creepy. Anyway, you’re all beautiful, bold, sassy and altogether awesome! Thank you for showing yourselves with such confidence.

* * * *

I got a little complacent with my former mostly stable normal and have been abruptly woken up. I found out today that I have developed 2 lesions in my liver. I am shocked, disappointed, and scared. I suppose it was just a matter of time. I’ll have a good long cry tonight and then get on with living.

* * * *

I still work, travel, and have fun. For sure, things are different now — I don’t make long range plans, some days I am really tired, some days I shed tears. Bottom line is that I am living with cancer, not waiting to die.

 

On celebrating life

Thank you for sharing your wonderful news and the moving quote. There is, indeed, something good in every day, however small, subtle, momentary. A chickadee just settled on a branch outside my window. Your post and this tiny life has made this a good day already.

* * * *

How wonderful that you have a loving husband and someone you love. That is a gift. Treasure it and try not to measure the time you might or might not have together — who knows?

* * * *

I never asked what my expiration date might be. Live each day with an appreciation for the good things in your life and take notice of the small joys that come with being fully present.

* * * *

As someone else said, the earth is not a five star hotel. So true, but there are five star moments.

* * * *

I don’t spend a lot of time regretting paths not taken, these are merely thoughts now. I try to stay in the present and do the best I can — appreciate the inexpressible beauty in this world, my family, the few really good friends I have had for a long time, the spiritual teachings I have received from precious teachers. In any moment, I aim to be fully present with an open heart.

* * * *

I doubt your last thoughts will be about regrets for the project left undone, but more likely about the love you feel and the love you’ve received.

* * * *

Through sorrow and joy, gain and loss, we can always keep asking that one question: What is it like to experience this life right here, right now?

 

On having fun

Being a grandparent is the best. My baby became a father 7 months ago and it is amazing to see one’s child become responsible for another life. I notice that not having to do the tough stuff, I can pay attention to the details of my granddaughter’s development from week to week. What fun!

* * * *

Fun is also spending time playing Mah Jong with good friends, having visits from family living far away, going to tea ceremony classes, having a juicy grass fed hamburger with home made fries, seeing a great movie, listening to beautiful music. My son’s flight back to NY got cancelled yesterday and I now have 2 more bonus days with him. That’s fun!

On longevity and the inevitability of death

This disease sucks and I will likely die from it, but I still have a life to live, dancing with the knife at my throat, and have many joyful moments to experience. I choose to be positive, hard as it is sometimes. I don’t know how much time I have, but I won’t live it feeling angry or worried all the time.

* * * *

As the saying goes, it ain’t over till the fat lady sings. Meaning in this case, live the life you have, one step at a time. The outcome may be certain but the timing is anything but.

* * * *

Sometimes I think of my eventual death as my train pulling into the station and having to transfer to another. When this particular journey has come to an end — or my eviction notice comes to leave this body — I want to meet this transition with equanimity and curiosity, knowing that those I love know how much I love them.

* * * *

I find the dying part more scary than being dead. Pain, the impact on my family. Sometimes I think of all the things I will be missing, but then realize that actually I won’t be missing anything. It’s the thought in my mind now that is disturbing, so I try not to get hooked.

* * * *

I have never had thoughts about throwing in the towel. Right now I have so much to live for, from the smallest moments of joy like the songs the birds bring, to spending time with my family and friends. The dark thoughts come, but I don’t follow them for long. I still have a life to live. I think I will know when it’s time to say no more.

* * * *

Ah, a peaceful, comfortable, dignified death. I believe it’s possible. I continue to work with my mind so I won’t spend my last days or months struggling, confused or in a panic. A mind of equanimity, a room with a view, as little pain as possible, and supported by those I love. Am I aiming too high? 😉

* * * *

I have planned my funeral, thought of having a goodbye party so I can be there, even pretended in the middle of the night, in the dark with my eyes closed, that I was dying and surprisingly was not afraid. Thinking about where I want my ashes to go — definitely not on a mantle piece!

* * * *

My worst feelings about having this horrible disease is the effect it is having and will have on my family. More than anything I wish I could spare them this grief and sadness.

* * * *

I am hoping that I am around long enough before my final forever sleep that my granddaughter holds a vivid enough memory of me and knows that my love for her is forever.

Offering helpful perspectives to others in the discussion

A wise teacher of mine said, “When you learn to smile at your fear, to be with your fear, you become an authentic friend to yourself, and thereby develop confidence — this is the basis of fearlessness.”

* * * *

“To be fully alive, fully human, and completely awake is to be continually thrown out of the nest. To live fully is to be always in no-man’s land, to experience each moment as new and fresh.” -Pema Chodron

* * * *

“Our power lies in our small daily choices, one after another, to create eternal ripples of a life well lived.” -Mollie Mart

* * * *

As one of my beloved teachers said, “you are the sun and everything else is the weather.” Here’s to a year without storms.

* * * *

“Every time I see a math problem it looks like this: If I have 10 ice cubes and you have 11 apples, how many pancakes will fit on the roof? Answer: Purple because aliens don’t wear hats.”

* * * *

“The world is not respectable; it is mortal, tormented, confused, deluded forever, but is shot through with beauty, with love, with glints of courage and laughter: and in these, the spirit blooms timidly and struggles to the light among the thorns.” -George Santayana

* * * *

“The definition of insanity is doing the same thing over and over again and expecting different results.” -Albert Einstein

* * * *

There’s a quote from Bob Marley I love -“you don’t know how strong you really are until being strong is the only choice you have.” Sometimes we do learn the important things when we are faced with the biggest challenges. Oh how I would like to say I get it, now can we rewind and delete this chapter!

* * * *

A question to ask oneself before saying anything: is what I’m about to say going to be empathetic / comforting / generally of benefit to the other person? Or is it about me, my comfort, my discomfort, etc?

* * * *

A special teacher of mine said, “When you find it very confusing to understand things, then rather than formulating new ideas to make sure you have some ground to stand on, the Buddhist approach is to take a further leap and create your own nest in space.”

* * * *

This is a quote I love: “Life isn’t about waiting for the storm to pass. It’s about dancing in the rain.” Of course the downpours are pretty challenging, but I can usually find something to celebrate, even just a blue sky at the end of a gloomy week, a phone call from my son, or a new photo of my granddaughter.

On growing older

For about a month before I was diagnosed stage IV, I was, oddly, obsessing about growing old, becoming a widow, having my closest friends die before me, having my body parts, one by one, start to crumble like an old car, become dependent on my children — all the negatives. Well, all it took for a revision of what was my worst nightmare was this diagnosis. And now growing old seems like a good idea, knowing that it will not likely happen for me.

* * * *

I celebrate every birthday and love becoming one year older.

* * * *

Now is now, and I am alive, breathing, and determined to live the life I have in the best way possible. I like the idea of celebrating a birthday every day. Happy Birthday everyone!

 

Dealing with other people’s attitudes about cancer

So sorry you have to receive this kind of vicious gossip from so-called friends about your situation. You are right to keep these people at a distance. Their negativity belongs to them and you don’t have to either be near them or take it on yourself. It is sad that they live in such a state — it can’t be a happy place for them. Hooray for choosing joy and peace!

* * * *

In most cases people who say the things we hate are trying to make themselves feel better. I understand that and rarely respond to statements like “you look great, you’ve such a great attitude” with anything other than a weak thank you.

* * * *

I find I am much less reticent to speak directly and openly since my diagnosis. I am not unkind, but I am also not as worried about what anyone thinks of me. Liberating.

* * * *

I have never had anyone tell me I just need to accept Jesus and all will be well, or that if I don’t I am lost. How disrespectful and cruel! Such a judgment would leave me speechless, if not unleash a sharp response.

 

What I want before and after I die

What do I want to do? Live fully one step at a time without getting trapped by complaint, anger, fear. Spend time with my DH [Dear Husband] and grown sons. I want to travel, play more, dance more. I want to unload no longer needed or useful stuff in my closets, so others don’t have to deal with it later.

* * * *

When the time comes, I want my DH to throw a party on my behalf for family and friends to celebrate my life and to celebrate each other. There’s no time like the present to let those you care about know how much you care about them.

* * * *

As for my DH, I don’t want him to be alone, but I’ve told him whoever he chooses to be with cannot have my clothes! That thought makes me wince.

* * * *

I want to be remembered by my family and close friends as a good person — kind, loving and supportive, and to let them know how much I love them and what they have meant to me. Some people I work with will remember me as the person who answered their emails quickly. I’ll take it 😉

Final post, May 3, 2015, — one month before she died

Be prepared for the worst, but hope for the best. And live the best life you can. No, this is not curable, but everyone’s situation is different. I am nowhere near throwing in the towel and will not spend the rest of my life, however short or long that is, waiting to die. I will continue to focus on the good things in my life. Sending love and wishing you many years and much joy.

Jill’s last days

Jill traveled to Vermont for a gathering with her extended family over the US Memorial Day weekend at the end of May. There she shared stories of her childhood with her sons and nieces, toasted the announcement of her older son’s engagement, and celebrated her granddaughter’s 3rd birthday.

 While she was showing some signs of weakening, at the time no one had any idea that she was so close to the end of her life — neither her family nor her physicians. The photo to the left was taken at this Vermont gathering, exactly one week before she died.

Upon returning to Halifax, she was feeling shortness of breath and went into the hospital to get it checked out. There was a little fluid in her lungs, but it did not appear to be life-threatening.

She spent several alert days in the hospital seeing members of her family and plans were made for her to come home. All her vital signs were normal until she passed away quietly and unexpectedly on the morning of June 1st, apparently quite ready to go.

In the days before she died she expressed some clear, intentional perspectives to various members of her family, including:

I am not afraid of dying.

* * * *

I want you to know that you have given me nothing but joy. And when I depart, you will know that.

* * * *

Let’s not get maudlin.

* * * *

Don’t get stuck in the past. Now is now.

* * * *

Her funeral service — a Buddhist Sukhavati ceremony — took place two days after she left this life. The ceremony, attended by over 200 people, included silent offerings of flowers, incense, and tea in the tradition of the Japanese tea ceremony where she had committed so much love and discipline.


Some Poems to Jill

Let’s Not Get Maudlin

How brilliant of the Japanese
to take the simplest of daily activities;
putting flowers in a vase
or making tea;
and by slowing it way down,
by paying attention to each moment, create a profound path
of contemplative practice.
Your fellow practitioners in the way of Tea,
kneeling on each side of your coffin
(draped in the flag of Shambhala)
performing these simple tasks,
bring all of us gathered in the shrine room
for your funeral
into the space of open awareness.
In that space there is certainly sadness;
we have lost a precious member of the community,
an exemplary warrior on the path of enlightened society,
a mother, wife, friend, and colleague;
yet there is humour and delight at having shared,
in even small ways, this journey with you.
Your final hours were remarkable.
We are told you both attended to details
of a birthday party for your granddaughter
and gave your husband final profound instructions:

“Let’s not get maudlin.
Don’t get stuck in the past.
Now is Now”.
May we take your profound and brilliant
final insights to heart.
May we aspire to emulate your deep practice
that seamlessly includes the mundane details of life
and the most profound view of reality.
May your journey continue
into pure awareness.

-David Whitehorn (Mountain Drum), June 8, 2015

Note from Bald Mountain

Sweetheart

You are the remembrance of what I had forgotten
The maturation of my fears
The space of my confusion
The love of my life
You inhabit the places I do not notice
The precision of how to hold a bowl of tea
The clarity of a stovetop cleaned
The joy of your laughter with our grandchildren
I seek you by paying attention to the world around me, now
I find you in the pulse of my heart as you invisibly enter inside
You do not allow for one iota of complaint
You are sharp like a razor’s edge
You leave no room for sentimentality
And yet there is love
A vast and patient realm
Invisible if I look too hard
Present if I love you without holding on
Inviting through letting be just as it is
The cup has broken
And the contents of your wisdom
Speak through the grass, the sound of crickets, the heat â?”
The perceptions that show up from moment to moment
Before the now is noticed, you are there
Before I think the thought, you appear, quietly
Before I know what’s happening, you smile
I will learn to abide in that space
And love you ever and ever
From the warm dry grass and trees of Bald Mountain above Boulder

-Michael Scott, June 25, 2015

The presence in your absence
While you’re gone, you are also here.
In seeing the greenery in your beloved backyard, you are here.
In hearing the wind whispering in the trees, you are here.
In pulling down a blind, you are here.
In buttoning a shirt, you are here.
In the objects that you chose so carefully, you are here.
In the directness of your insight, you are here.
In the no big deal of now, you are here.
In your silent smile, your elegant shrug, you are here.
In the kindness in your sons’ voices, you are here.
You permeate all the connections you created
And they overflow with your quiet generosity.
May we continue to learn from your extraordinary subtle gifts.
May we cherish and delight in the manner of your living
As you journey on in ways we cannot know.

-Michael Scott (Diamond Ocean), July 17, 2015


 

Jill & family in Vermont

Readers’ Comments

Thinking of Jill I remember when our Tea group began in Boulder. Now deeply saddened to hear the news of her journey I wish to express my gratitude for Jill’s example and to Michael for sharing the valuable reality of what happened.

So many of us older sangha are now on our way towards to this final realization. With Jill’s passing may the words that come to my mind as I remember her (and as we heard “IT” as a young sangha): “A Broken Heart is a Healthy Heart” become a great source of inspiration, fearlessness, energy, and joy for everyone.

Sincerely,
Joan West

* * * *

Dear Michael,

Your generosity in sharing these personal reflections and your poems with the whole community is stunning and moving and so brave. I can’t thank you enough.

With gratitude,

Vicki Giella

* * * *

[This is] very meaningful. A labor of love and heartbreak at the same time. And gives hope to all of us who may be in the same boat, if not now, then sometime. -Francie Reed

* * * *

Thank you, Michael – Jill’s beloved DH,

How wonderful to read Jill’s words – brave, genuine and open-hearted.

Feel so fortunate to have known her and even though seldom saw her over the past years, I miss greatly her gentleness, humour and life-enhancing laugh. Cannot imagine the depth of your sadness and appreciation for the many years, and the family, you had together.

Thank you again, DH for sharing this with us — we should read Jill’s reminders before we start each day and live it to the fullest,

with love and appreciation,
Kerry Crofton

* * * *

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