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 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.

4 thoughts on “My Gratitude: our virtual support group and my hope for our future

    1. Oh Abigail thank you for keeping up your work on the behalf of others and for writing your blog, you’re a rock star and took a career and your talents and applied them to the new path you were forced to walk instead of crumpling. I admire and love you lots

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