Brain Cancer Diaries the Poetry Episode

That link will take you to the Poetry Episode of The Cancer Diaries.

I want to thank Rudy Fischman who, with inoperable brain cancer, uses his talents as a video producer, interviewer and rising star in editing and special effects to give us a guided tour into his life. He spotlights, with humor and his brand of edgy yet polished video blogs, the reality of living with uncertainty as well as the physical and emotional effects of his disease on his entire world including his wife and daughters.

He invites guests along the way and in this episode he invited myself, and two other poets, on of whom died before he could see the final result. Rudy did Ben North justice reading a poem called, “My Father’s Son,” and who’s chap book of 33 poems called 33 Poems is available on Amazon. Oddly the day the video was released my copy arrived, after nearly 3 weeks waiting, on my doorstep.

I admit I look like I just had several radiation treatments, because I did, but he captured my heart on the video and I cannot thank him enough.

Rudeman, you rock.

You can find Rudy on Facebook, Twitter @fschmnn and YouTube under Brain Cancer Diaries, and I highly recommend you subscribe and share amongst the cancer community and outside. In particular, this episode highlights the intersection of writing and cancer and the therapeutic effect that putting our stories out there in whatever format we feel good about brings others into our lives and transforms everyone. That is everyone who reads, listens, watches and learns from us and with us.

My Gratitude: our virtual support group and 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 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.