Integrative Hope: the prison of a diseased body

Integrative Hope

22 years ago my best friend died in my arms as he struggled to hang onto his ravaged and painful body. At 37, neither of us knew the fear of death’s presence, of having to let go of life. I climbed into the hospital bed with him to hear his voice, by now hardly audible, the Karposi’s sarcoma and thrush making his throat inhospitable to words. He looked at me and said, “I’ve been waiting for you. Ilene, I’m so afraid. I’m not ready.” I whispered into his ear, “don’t be afraid, Allan. If you can let go of this body, you’ll be free of all this pain. It’s too much pain to hold onto.”

He was frail and his 6’ 2” frame held about 90 lbs of what once was a robust man. I breathed in his last breath and held it as long as I could. Cradled in my arms he died of AIDS related illness at 3 a.m. that morning. Death has no respect for longevity, for time, or for fear.

Fast forward to last week. My partner hadn’t seen The Shawshank Redemption yet so we sat home again and watched a movie far too late into the night. At the end of this hopeful and infinitely quotable film, there’s a dedication to Allen Greene. He had died of AIDS around the same time as my lost brother, best friend, and partner in mischief making. His name was Allan Green, too.

“As fear can hold you prisoner, hope can set you free.” The clarity of spirit even as narrator’s voice gives us a play by play of an army crawl to freedom through five football fields length of sewer pipe filled with the collective excrement of an entire prison population. Yet, as our protagonist emerges with a rope tied to his ankle, the last shackles of prison life are washed away. The sky rains down to cleanse the soil from his body and his soul. “Get busy living or get busy dying.”

Or, in other words, as my friend Waz of the Cancer Help Program at Commonweal (http://www.commonweal.org) said to me, “if you want to grow get, you have to step into the garden.”

An adaptation of Stephen King’s novel “Rita Hayworth and the Shawshank Redemption,” played to lukewarm audience reception about 20 years ago. I suppose the lackluster response due in no small part to its existential themes as well as the overwhelming human need to find deliverance in an uncertain and unfair world. It’s a prison to live in a body that’s trying it’s damndest to kill you. A body with metastatic cancer provides no safe haven and certainly incarcerates all who reside inside of one such body.

Perhaps Stephen King in some way delivered a beautiful metaphor for living in a body that’s turned into a prison by disease. Yet hope springs alive in each one of us regardless of circumstances. No one deserves a killer body, just as an innocent man doesn’t deserve to go to prison for a crime he didn’t commit.

But where a new day exists, so does hope. I know some reading view hope as another four letter word, but regard your life without it. If we lose our hopes and our dreams we lose the present moment. A gift of hope in the human condition raises our heads to feel the coolness of rain, the warmth of the sun, and when our eyes open each day, the knowledge that for now at least we are still alive. Death doesn’t frighten me. Death interests me. But not enough yet to want to leave all the green of our earth behind quite yet.

So I hope you can understand while I’ve seen my share of loss, each day I get busy living. To sit around waiting to die would mean the garden in which I grow withers and dies along with me. And what a beautiful garden it is.

Cancer Art Journaling: Colorful words help heal my mind

Reluctantly, Ive decided to share a couple of pages from my sketchbook where I keep my not so very good artwork. I scrawl my emotions out on the pages using colorful pens, pencils, markers, paints, and whatever else handy from my growing art box.

Some days, instead of trying to get my words to fit in an essay, I find it easier to explore more non-traditional forms of journaling. One of my favorite sketches to date was to create a woman’s torso out of the letter “w” beginning the word “why.” It’s a question we probably all ask ourselves occasionally. Not feeling sorry for myself as in “why me?” But more in terms of “why not?” Why aren’t we counted? Why do we still need to die from metastatic cancer?” Why, indeed. Even if you aren’t a great artist like me, just let your colors and your hands do the talking for you. You may find out some things you didn’t even know you were thinking about. It’s visceral and gut level and it’s also a great way to purge negative emotions in a positive way and you just may have some fun.

Go ahead, be a kid and doodle. I’ve taken up trying my hand at mandalas, too. They’re not very good yet, but practicing focuses my mind away from everything and into the art form and coloring in the interesting patterns that emerge. And share them with me here if you decide to create something. I’d love to see what others are using their art journals to express. New ideas to generate ways of thinking about my life and my cancer are such a welcome gift.

Rantings of a Metastatic Lunatic

Writing, for those of us who dare call ourselves writers, prolific or sporadic, come to find satisfaction in the act itself. Not that praise and recognition aren’t wonderful, because our insecurities tend to coexist with our capabilities. Admittedly, a cancer diagnosis nearly four years ago relit the fire that once burned in my brain to put pen to paper. Let me caveat my last statement: that is, once I forgave myself for feeling afraid of calling myself a writer. I am a writer today, in no small part due to one person, Michael Lerner a co-founder of the Cancer Help Program (CHP) at Commonweal in coastal Northern California.* Immediately finding common ground in our backgrounds, I looked forward to my personal sessions with Michael.

I admire people who wrote and had published books as well, knowing what a gargantuan task it is indeed, whether fiction or non-fiction. Michael also wrote an encompassing book on cancer adjunct and non-traditional therapies called “Choices in Healing.” Pick up a copy if you can; it’s still very relevant 20 years post initial publication. In a session I had one on one with Michael, he asked a simple question, “why don’t you call yourself what you are? A writer.” So one word changed my attitude with regards to a long held fear that perhaps my writing didn’t merit giving myself the title of writer.

From which neuroses did this fear grow from and how do I continue to kill the weeds before they take over the fertile garden of my mind? Does fear fertilize the same physical mutations in which cancer grows best? Maybe these connections strengthen or weaken our immunity to pain and illnesses. I’ve come to believe there’s no such thing as a mind-body connection, because the mind (in my mind) is the body and the body is the mind. There’s no schism that separates the two, not even the blood brain barrier.

I wrote my first poem before the age of six. In 1971, before dad left us for another family he’d fallen in love with, I recall sitting on the radiator in our apartment in New York watching the snow fall in the playground outside 16 stories down with the swings bucket seats silently hiding undercover in white dust. Even then I walked around with a notebook, and I remember a feeling wash over me that afternoon as the sun sunk lower and the snow continued piling up risking the next mornings announcement of a snow day from school. Warming myself on a pillow atop the clanging coil of pipes, I put pencil to paper I wrote a two stanza a/b rhyme scheme piece entitled “What it is for You and Me.”

Giving it to my mother for her birthday that year when she turned 31 that she kept and gave to me many years later, sometime prior to succumbing to dementia at 74. It’s a wonderful gift to receive all those years later as a reminder of who we intrinsically are as human beings. I’m amazed at how many memories come flooding into the brain from some unseen place when such wonderful events transpire between us.

The Glymphatic System

Recently scientists discovered that lymphatic drainage does occur for the brain, whisking away waste and toxins as well as infections. The system aka glymphatic system links to the body’s lymphatic system near the cervical bones of the neck. Unbeknownst to anyone is the existence of lymphatic drains on the brain – heretofore unseen and just discovered in 2015. All except one exceedingly smart doctor practicing in the 19th century whose research was long forgotten, prior to the 2015 study run by researchers funded by the National Institute of Health and the National Cancer Institute. A specialized highway like the blood stream and the lymphatic system exists in the brain.

And my mother passing away from the ravages of Alzheimer’s are directly related in no small part to the breakdown of this system. Perhaps even my own disease has a direct correlation as well. It’s all in our heads anyway. The act of writing, fear, doubt, distress, anxiety, chemo brain, dementia, Alzheimer’s, cancer. All of it.

And how this all ties back to metastatic breast cancer you may ask? Well, I may be an okay writer but I’m no scientist. I do love the occasional research paper as it may relate to my disease or to some astronomy discovery. But it’s fairly clear to me why the NCI funded the study. Especially if indeed there’s no difference between the mind and the body but instead they’re one entity codependent upon one another for life support. You can draw your own conclusions based on the breadcrumbs of interest left here to follow. And this fits nicely with my spiritual belief that the consciousness is the god of the body itself and somehow we go on as a soul long after the physical self has drained its last drop of brain waste.

We can organize peacefully around the idea that we ourselves can supercharge our immune systems to fend off cancer. And my truest hope is that discoveries like this one will allow me to thrive long enough to see a cure for cancer. But then again Maybe I’m just bathing in my own glymphatic waste. And perhaps calling myself a writer at this point in my life is self-delusional. But what a sweet delusion to know that my words reach others with cancer and have helped one or two people with struggles of their own.

We aren’t alone when we write and publish our personal stories. And perhaps the undiscovered territories and deep psychological insights are in some ways akin to the discovery of the glymphatic system. There’s an importance to both for humanity’s healthy survival.

*Commonweal’s CHP is a week long immersive resident group of only eight people who couldn’t be more different or the same. We go in afraid and heavy with baggage and we depart carrying fewer suitcases than we arrived with because of the amazing work of 30 years spent helping heal the souls of people with cancer and their partner-carers. If you’re metastatic check it out in an earlier blog post on this very site or at commonweal.org