Fear of Happiness and the Nuclear Bomb

Happiness. It’s not found in nature – do bees, birds and skunks seem happy or just carefree? Perhaps there’s a powerful connection between freedom and joy. When we find ourselves free from major responsibilities we find peace easier to come by. After the following came back from my CT scan report I found my mood became less jovial and more edgy. I’m afraid of the protocol for hopefully solving this latest tumble down the rabbit hole of metastatic breast cancer:

“New moderate focal uptake within the L4 vertebral body concerning for progression of osseous involvement from PET/CT 4/12/2019. Diffuse sclerotic osseous lesions are otherwise not hypermetabolic.”

My CT Scan Report

I begin radiation treatments Tuesday for the tumor on my L4 vertebrae and in all the treatments over near 6 years since diagnosis, I’m afraid. But so many people have had radiation and come through just fine. Why such a fear of a very common treatment?

My fear of radiation began long ago in my childhood. After much soul searching into why the looming treatments scare the crap out of me I arrived at several interesting conclusions about the connection of fear and happiness.

We age and as we doubt our own hopes making the world a better place- it becomes simple. It’s a risk to take redemption to begin to see the hope where we can see darkness in the forest instead the earth calls us to see its light.

I think back to picketing against McDonell Douglas‘ huge multi billion dollar contract with NASA for what would become part of the Star Wars program begun by President Reagan’s administration. We held up our signs against nukes, U2 blaring in the car on the three hour drive home from NASA In Satellite Beach to Miami Beach – “Bullet the Blue Sky” was the song coming from the speakers in my dad’s old Celica. That song and it’s ominous countdown are etched into my memory, as are the chants of “We Shall Overcome at the end of the protest.”

I remember seeing pictures and documentaries on nuclear weapons and I think my ingrained fears about radiation causing cancer has kept me from utilizing this protocol until now.

In my dreams

I see my father in my dreamscape standing in a cool forest as I run to him not as an adult but a child. I’m afraid and I’m screaming, “no daddy! no not the bombs not the burning bombs!” Just in time I reach him before the blowback reaches me like you might have seen in film of the Bikini Atoll atom bomb tests. Then he gathered me up in his arms like a baby and we fly up without any propellant. He whispers something I cannot recall before he deposits me in a nest and disappeared leaving me safe but helplessly alone.

Is there ever going to be a time when my cancer doesn’t leave me alone? Alone in both senses of its meaning: isolated and diseased. This last week my friend told me that a relationship I’d hoped to develop wouldn’t happen. The friendship will end before it begins. She’s lost too many people to cancer in the last several years abs she cannot deal with more pain.

Where’s my happy place?

I feel okay. I have no idea when I will die. But I do know this – I also have enough on my plate but not enough human interaction- have we all gotten so used to isolation because of the never ending Covid lockdown that we will become used to doing things anonymously and alone?

I hope not, I have some frightening days ahead of me. It’s too bad I scare people away from my life just because of metastatic cancer. But her honesty is appreciated. At least I know why I haven’t seen her in six months. What’s everyone else’s excuse I’ll probably never know. Not my current friends, few though they may be, but all the ones who disappeared and left me on my own. I know they read this blog. I hope they know how afraid I am now after nearly six years of treatments.

Will I find myself in a happy place again? Or will happiness become like my mother coming into my room at night seeing my light inside. “Put the boom down and go to sleep!” Connecting fear to fun our parents do their best for us but etch away at our carefree souls for our own safety at a young age.

We thus begin to avoid risks and take fewer chances. As we get older and our responsibilities and the depth of our love becomes more important we take less risk, more work and find less fun offerings in our day for fear we cannot meet our obligations.

Do you see where I’m going? Certainly you can relate to what I’m experiencing now and what I experienced as a child leading to fears I couldn’t relate to pinpointed events until my dreams ripped a hole in my own time space continuum.

Meanwhile wish me luck.

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.

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.
Blog | Twitter |LinkedIn |Facebook |Instagram | EtsyJoin the conversation on Facebook