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
“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.”
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.