My Gratitude: our virtual support group abc my hope for our future

Thank you. To you my sisters and brothers who write blogs and create videos. I owe you my deepest gratitude for so openly, and with the intent of helping others like yourselves, with the therapy of your craft. By discussing your lives and fears, and in some cases, the end of your life as you experience it, I can feel all of you. I hope we will be the loosely knit, dispersed support group we’ve become, for a while to come. We make up a group of people whose bodies turned against ourselves with breast cancer, brain cancer, pancreatic cancer, metastatic cancers. and a host of other painful killer diseases.

We hope for life.

In tandem I write this blog with my own with intent. I write to begin, to enter, and to sometimes end discussions here online in the virtual world. The main focus of our discussions realize our hopes and dreams, as well as adjustments of our individuality. We watch as the shifting of hope: hope not only as a concept but mandate for our survival. We do not experience hope as an unmovable meaningless emotion. We give our readers and watchers the priceless gift of front row center seats to hope as it shifts throughout our lives in a conversation and in our actions as human. Our hopes and dreams are written indelibly, etched in time and for the foreseeable future.

Some of us take it all the way out to the end when we hope for a good death rather than painful ugly moments in and out of consciousness beyond our control. We hope that those who remain behind, who mourn our “loss” to carry out our wishes as we intend them.

We experience death.

I have spoken about two important moments in my life before and I https://cancerbus.com/2019/02/25/hope-and-the-prison-of-a-diseased-body/overflow with gratitude for them. Two deaths for which I sat holding witness as their spirits left this plane and went to one we can no longer see or visit them. While I was sitting beside my father as he was in a coma in hospice care in Miami I played music we loved quietly for us both. I’d sit and talk to him and tell him it was okay to go and not to be afraid. I sat as a spirit midwife of sorts and a Witness for my father, and 10 years prior that, my best friend Allan who died at 37 in my arms. They both gave me a gift immeasurable in a common meaning or sense of value.

The last breath I took with them changed me, each in a different way. To see the fear of not living in a 37 year olds eyes and to help him allay his broken heart with the knowledge of his impact on my life and everyone who adored him, and then to sit with dad for two weeks was as much a degree in how not to have the end of life filled with suffering and then lack of suffering, both allow me to face my own mortality in a way that’s indescribable yet quite tangible.

In the Jewish tradition when visiting a cemetery one leaves a rock or stone on the grave stones of their loved one. Some Talmudic teachings say it’s to keep the soul in the grave but I like the more hopeful version:

‘In moments when we are faced with the fragility of life, Judaism reminds us that there is permanence amidst the pain. While other things fade, stones and souls endure.’

Jack Reimer, Wrestling with the Angel: Jewish Insights on Death and Mourning

We find heroes.

There’s a person who’s presence in my life remains and always will be as long as I remain a lesson in how a single word can change a life. He said to me, “Ilene, you’re a wonderful writer. Call yourself a writer because it’s what are and have always been.” And from that day on I found another stone for my path ahead every morning or afternoon when I arose still alive. That stone allows me to put my foot on to carry me to the next and the next creating a new path in my life to carry me home. Without it i wouldn’t have found my way. Each time I write I thank him after a few moments of silence prior to the first word hitting the page.

It’s also said we die twice – once is our physical death and the second is the last time someone living speaks your name. If this is true, we will live a long time after our physical selves are no longer a vessel for our beautiful souls and for us to “see.” Our words ensure our names will be rehearsed for many years to come.

We find beauty.

I’d like to share a poem by John Keats, written in the 1800s when he was about 22 years old. Definition of what I believe describes the British romantic period, when poets like Coleridge, Wordsworth, Byron, Shelley, and of course Keats wrote. It was a short enough period but a prolific one, much like one whose metastatic cancer brings a fierce need for expression, it seems our world changed significantly with a very hard push on the enlightenment at the time, Keats said:

“[I]f Poetry comes not as naturally as the Leaves to a tree it had better not come at all,” proposed John Keats in an 1818 letter, the perfect symbol of the British romanticism movement.

John Keats
When I Have Fears

When I have fears that I may cease to be

   Before my pen has gleaned my teeming brain,

Before high-pilèd books, in charactery,

   Hold like rich garners the full ripened grain;

When I behold, upon the night’s starred face,

   Huge cloudy symbols of a high romance,

And think that I may never live to trace

   Their shadows with the magic hand of chance;

And when I feel, fair creature of an hour,

   That I shall never look upon thee more,

Never have relish in the faery power

   Of unreflecting love—then on the shore

Of the wide world I stand alone, and think

Till love and fame to nothingness do sink.

The Therapeutic Effects of Telling Our Stories

For over five years now since my de novo diagnosis, writing continues to provide a positive forum for my metastatic cancer experience. Essays and poetry as well as my blog are all unlimited in so far as opportunities for my creativity and outlets for my emotional ups and downs. Friendships develop through these forums – blogs, Twitter, dare I say Facebook closed groups, podcasts, and even in the comments sections of our writing platforms of choice.

Therapy happens in a number of ways: for ourselves as we express our feelings and thoughts; for others who need to find connections to people who are in similar circumstances; and for our friends, loved ones, partners, children, and our communities to understand us better or to revisit us after we’ve died.

Do you connect through any of these forums?

How do you interact especially during isolating times like the one we are experiencing now?

How do you express yourself when there’s few people to talk to?

Healing happens when we reflect on the life we lead, how we got here, and for us with metastatic cancer, our lives in the short term. There’s always time to change: in a minute the course of your life can change forever. Simply consider the diagnosis itself.

But that’s an outside force revealing itself inside of us. If 95% of cancers are not genetic, they come from outside forces and shift and mutate our insides until the good in our bodies no longer can recognize the mutated cancer cells. Simple yet so complex.

Writing allows for healing and therapy to happen out in the open: where cancer for most of us likely began. We write about life stressors. Evidence suggests stress exacerbates the physical situation that leads to a cancer diagnosis. Old psychological wounds, negative self images, depression, and nutrition all can lower the body’s immunity. Our ability to kill the cells before they grow into a part of us weakens and gives way to illnesses, not only cancer. We physically manifested the cancer – that’s true. So we can heal the body and allow it time to get rid of the cancer too, should we choose to manifest positive healing space.

And it’s never too late as far as I’m concerned. In fact my oncologist quipped that I’m alive past the time stamp where there’s not a lot of evidence based science as to what we should do next so it’s “guesswork” from here out. This is where writing publicly becomes even more important to my mortality, as one person could have experienced something similar to what I am. Our community is an outspoken one so chances are I’ll hear about a protocol my oncologist and I haven’t thought of and vice versa. So there is even a practical side to writing our experiences.

I fully believe writing our stories and reading others’ as well can create a space in which we can work through the negativity while refocusing our energy on the positive in ourselves, in the company of people who want to hear our voices either to help their own healing and to enrich ours.

Equally as important as writing, and to the point of letting others in to hear us and understand us, I’ve met incredible women and men on the same trajectory as I am on and I cherish the community that is just on the other side of the screen whenever I choose to reach out and communicate.

Do we write to be heard? Do we express ourselves to have others come to read or to read and do something active like think or write something of their own? Is a public internet based platform appropriate or is it that we don’t have any other way to connect to others like ourselves?

Who do we try to reach? Anyone can read blogs, not only people with MBC, but those with cancers of all kinds at all different stages including those with metastatic cancer. And those who’ve not had cancer and as unlikely as it seems don’t know anyone with cancer. My community includes the newly diagnosed with any stage of breast cancer, those afflicted with chronic illnesses, partners and spouses of cancer patients, carers/ caregivers, and women who I admire and feel blessed to know through a small and ever changing intimate group of writers.

I wouldn’t have the same rich experience with the isolation that comes with a life lived with MBC if not for my writing. Life opens up doors of opportunity because sharing such intimate experiences attracts those who need to feel they’re not alone in their own.

When we let our story tell itself we can focus very quickly on the negative. In fact my original post was about growing up with parents who were both narcissistic. It certainly led to a negative place and thus took me for a negative turn, a “pity party” rather than a “positive party.” We can take away from our lives the negative aspects, which we all have, and place those events at the epicenter of the tectonic shift and part of the cause of disease. However, if we face those events and heal them by using our own positive energy a little differently then we have a healthier platform on which to stand.

If we use that platform to speak our truth and listen for the support that’s out there waiting to hold us with love, we find such a rich and beautiful space in which we can freely express ourselves. Even though we may never meet face to face I feel I know some of my friends, whom I’ve met through writing, as well and in some ways better than people I know through in person interactions. Stronger levels of understanding as well as a verbal short hand exist for how we experience our lives with cancer. It’s difficult to say I can find that kind of support anywhere else.

I hope that my words encourage more women and men to try to write their own experiences as a way to help themselves through such a life altering disease. Writing is also a legacy of the deepest parts of ourselves. And one doesn’t have to publish a book if the desire is to leave a legacy for those who love us.

Leaving our voices to exist beyond our deaths anywhere – even in letters or journals – are available for anyone to revisit us and to feel our hearts beat again, even for a little while, to hear our breath through our words.

Lessons from Lockdown – Julia Barnickle’s eBook for Summer 2020 What if life were meant to be easy?

Julia Barnickle the Easy Life

As Julia Barnickle puts together her second eBook, Lessons from Lockdown, she called upon me and 12 other writers to join her and contribute an essay. I sweated about my timeline, not wanting to disappoint a good friend, loving human being, and all around supportive soul. She, like I, has metastatic breast cancer. Unlike me she’s a polyglot, an introvert, a Brit, and has a fabulous voice. Check out her YouTube channel

Julia writes:

“Anyone who knows me well, knows that I’m always saying I’ve had an “easy” life – even though I’ve been living with Stage IV (“terminal”) breast cancer since 2014. I wanted to write a book to expand on the topic of an “easy life” (or a life of ease / flow) because I believed people would want answers to such an important question. But I was stuck with the feeling that I’d said all I had to say. In 2019, I realised that a book about creating a life of ease needs a multiplicity of viewpoints. One solitary voice and perspective just isn’t enough. So I decided to turn it into a community project and gather inspiration from a variety of sources – and I asked a bunch of my friends to write an essay each, expressing how Ease or Flow has manifested itself in their lives.”

We’ve been friends for some time now, although virtual, developing a loving supportive relationship from miles, an ocean, and countries away. There’s proof when you share a terminal illness one cannot always find friends around every corner. We know what one another experiences and how we can turn those experiences into a community of people like ourselves. Based in commonality, out of what seems a sad and unfertile ground, instead grows and blossoms deep, meaningful friendships. As I’ve argued before, we commit to telling our stories, which are very intimate, and therein lies the foundation for our relationships. We hold one another up in hard times and cheer each other on when there’s a win to celebrate.

She knows my writing style well enough. So much so that in writing an introduction to my essay for her 2020 summer’s ebook “Lessons from Lockdown,” she’d prepared the audience for my straight forward, yet poetically-infused prose. I’m grateful to be in the company of writers whose gifts for encompassing difficult subjects with grace, wit, import , and creativity. Each helped to vary the ideas and topics we tackled differently, but with a similar conclusion: use the space in your life during the COVID-19 pandemic to create self-satisfying outcomes without wasting the opportunity to do so.

You’ll get much out of the time you invest in reading each of the essays. I urge you to go and click on the link above and take a read of the other lessons from lockdown. Here’s my contribution to Julia’s “variety of perspectives.”

My Relationship with MBC and Time

There’s only one single impossible to ignore facet of living, other than death, and that is change. For we cannot escape change any more than death – life itself is a terminal disease – we are born to die but were also born to live. We can take joy in the changes that time presents to us moment by moment, rather than failing to see the wonder of life’s ebbs and flows. I can hit my head against a brick wall trying to avoid the inevitable, but why feel pain when it’s absolutely unnecessary?

There’s a hard truth to that brick wall in relation to the detrimental alterations of ourselves caused by cancer. Out of our own control, cancer and Covid19 both share the same negative circle of life’s huge Venn diagram of positive and negative emotions. However, there is room in the overlap with the positive emotions. Believe it or not, the major transformation takes place in emotions that are highly negatively connoted: uncertainty and isolation. Covid and cancer both place a handcuff upon each of us and can transform our lives without a doubt. For metastatic cancer and the Covid epidemic, these are the top two psychosocial complaints.

To describe uncertainty and isolation as negative isn’t necessarily the correct approach to the situation. Indeed if you replace “uncertainty” with “change” and “isolation” with “time,” we now have shifted to the positive side of the Venn diagram. Perspective keeps those of us with metastatic breast cancer alive with hope. And change and time factor into hope in an enormous way.

Let me explain. Uncertainty and isolation can both be viewed as negative outcomes of metastatic cancer and the Covid virus, but do they have to be completely negative? Neither has to bring us down to our knees with misery. In fact, our relationship to time itself can take on variations and permutations we may not have known existed.

More time, more moments of quiet and peace, although perhaps imposed rather than chosen, give us more space to think, learn, create, deepen, fine tune and ultimately develop new skills and experiences.

In fact it’s not necessarily even a lack of time, but aspects our personalities exhibit as adults, that keep us from experiencing the wonderment of learning for example to draw, to paint, to write poetry, to ride a horse, or even something as personal as to meditate. All of these new skills require time and a turning down of the fear of failure.

But let’s be honest with ourselves. It’s not time or fear but our egos that get in the way of not having a perfected set of skills to immediately present to the world. Et voilà! Here is my born of a virgin masterwork of art, as I am an adult prodigy of painting like the Dutch masters! An operatic singer lived inside me all these 55 years and here I am at Carnegie Hall! Laughter is good medicine for the ego – as it is for cancer.

Yet as we understand it, time marches on regardless of hope or change. Time shifts, in some strange way, came along as a bonus with my metastatic breast cancer diagnosis. My relationship to time changed my relationship to my entire world view – both internally and externally.

The internal transformation manifested itself in ways both obvious and undetectable to how people view me – both before and after the diagnosis five years and four months ago. Surprisingly to me, the actual dispersed mutations stage 4 cancer has inside somehow became eclipsed by the vicissitudes my diagnosis made on my relationship with the external world. This shift includes: my friends and family; my financial status and my ended 30 year long career; and my comfort with my own body in that it’s turned against me somehow; and coming to terms with all the shifting changes of my life. Oddly the same shifts that Covid seems to have upon the rest of the world, minus the approximately 155,000 of us with MBC [in the USA] who already know.

I had a friend, who I think was going through menopause at the time, say I was not being respectful of her time although she knew I wasn’t able to get to her place sometimes due to traffic, and others due to over time oncology appointments. Once she even offered to get in line early for a huge rummage sale and asked that I simply be there before 8:30 am, and I was – she reassessed her POV and said I was terribly selfish for taking advantage of her. Between time and money I seem to not have enough of either for her. She understands now, however and said she really finally got what I meant about losing myself in a project, a long meditation, a great view of a sunset. Whatever the next beautiful moment might bring me.

I think Covid is the first occasion where it’s come full circle since I once had all those responsibilities. And the responsibility I have is to my body and my mind now. The health of those allows me time to be with people I love, to write, to learn to draw, and to help others with my 5 plus years of knowledge I earned the hard way through experiences, now to become a true patient advocate.

I’m so happy to feel something of import can come from all this. And I’m trying to see my way to giving myself the permission to do so. To me if you’re getting your work done who cares when you do.

You’ll thank yourself for the time you’ve spent and ask yourself what you’ve always wanted to ask yourself with the advance of time and the gifts that change brings us – medically and emotionally. And to be given such gifts allows us to enjoy what we’ve always wanted – whether through MBC or Covid.

As the late Gilda Radner said: “I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity.”

Delicious indeed.

I’m a poet. I am a writer. I am a woman with metastatic breast cancer. Like me prior to March of 2015: Incurable and alive. My life prior to diagnosis at stage IV consisted of the wobbly first steps of my life’s spiritual journey.

I do not believe cancer is a “gift” or a “war.” It is not a choice I made nor a karmic wheel pinning me down. It’s an epidemic and I am 1:3 women who have or will become diagnosed with this shit.

It’s incumbent on me to share of myself with anyone who cares to take a peek at the moments in my life by modality of essay, poem, rant, and above all love. I give gratitude and positive stadium waves to you for your support, including those who remain strangers and those who become friends.

Currently I live in the Bay Area of Northern California with my partner of 10 years and my cat-son, Simon.
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