Why I’m a #Delhi2013 hopeful: why not?

I heard about this trip to Delhi for cancer survivors yesterday from friend and fellow cancer survivor Joanne. Immediate adrenalin. What an amazing idea, I thought, what a lovely way to channel the energy and complexity of the new normal that post-cancer life is.

For a chance to go, #Delhi2013 hopefuls are to answer the question of how this trip would help write a chapter in their post-treatment story. My answer is, “how could it not?”

The question cancer victims often get stuck on is “why me?” Once I’d broken through my denial about having cancer—after, of all things, having been a health writer and writing about how to prevent cancer for years—I only ever once asked “why me?” I’d much rather it me than one of my children after all, or my husband or parents for that matter.

The question that made more sense to me was “why not me?” Cancer is ubiquitous, and pretty random in its selection of the path of destruction it will take. Like a tornado, it touches down where it will and moves on. Young children left motherless, mothers burying their children, none of it right or sensible.

And so to answer to the question of how this trip would be a good chapter in my life, I say again, “how could it not be?” How is it not a good chapter in anybody’s life to tap into the energy and power of love, and volunteer a little time to share it around?

The form my particular tornado took was ovarian cancer, the silent killer. Aren’t they all, really, in a way? No matter, I’m alive now, all clear for 16 months.  I responded well to treatment, beat those giant and aggressive tumors into submission, and have (almost) recovered from chemo. And I plan to continue to live fully, more fully than ever before, giving statistics and odds no room in my brain.

My friend, also a cancer survivor—in her case against all odds, as she was told her cancer was terminal right off the bat, and that treatment would be futile—directed me to this site and this dream, and told me she’d like me to come with her.  So here I am. It would an amazing chapter in both our lives.

I believe the cause of illness is simply, as one friend puts it, being alive, and that the cure is living.  So, I know they’re only taking twelve, but why not throw in my application? What an experience it would be. I could use your help though, my lovely readers—tell the spirited Terry over at A Fresh Chapter (whose story moved me to tears) why you think I should be one of the chosen, and I’ll bring you along in my bag.

We are Human Mitochondrial Brilliance

Standing in the front hallway of our home, laughing and chatting with my parents, are two beautiful young women. I am mesmerized. They are spirited and glamorous, on the cusp of adulthood. I’m very young, perhaps six years old. One of the women is my aunt, the other is her friend, and they have travelled by bus from Edmonton, to spend their Christmas vacation with us in Lethbridge.

Something in them resonates deeply with me, but the detail that gets tucked away in my memory is that of the extraordinarily large and beautiful buttons on the highly fashionable coat one of them is wearing.

Christmas vacation ends. My life goes back to its quiet childhood routine; theirs to college and their adult lives. I see my aunt regularly throughout my childhood; I don’t see her friend again, nor do I hear anything about her, ever, at least not that I can recall. But we’d connected that day, all of us standing there, and two weeks ago, five decades after that encounter, she showed up as a brilliantly sparkling diamond in my email box.

She’d accidentally come across this blog, put a few pieces of the puzzle together, and remembered that Christmas and the warmth of my parent’s home. And she contacted me.

She’d gone on to university, marriage, a dissertation on Dietrich Bonhoeffer, career and family, and events that eventually lead her to Japan. She describes the adolescent self I met way back then as “rebellious, independent, and impetuous”. I describe my child self as quiet, earnest, timid, and eager to please. We are very different people, our circumstances have been very different, and yet in a single conversation five decades later it’s clear to me that we are still somehow connected.

I happen to believe we’re all connected, through a living and infinite universe, upon which we rely for our very breath. What you prefer to name that source of life does not matter to me, but it is extraordinary. As Irish poet and philosopher John O’Donohue put it, “The ancient rhythms of the earth have insinuated themselves into the rhythms of the human heart. The earth is not outside us; it is within: the clay from where the tree of the body grows.”

Or, as Liam Scheff puts it in Official Stories, “We sprout, as living ambulatory self-conscious plants, from a universal energy being; not as accidents, but as manifestations of an organized, patterning and creative penetrating mind and soul, whose identity we, and all of life and matter, share.”

We are, in other words, part of an infinite, powerful, living, energetic, magnetic and elemental universe. This is a concept that resonates with my experience. The universe feels alive. It feels like love, and love is the energy of life and our connection to that infinitely larger whole, a whole that flows through us and is our breath, our heartbeat.

We are tiny parts of something much larger, distinct but energetically connected, mitochondria in the cells of the universe.

This, in my mind, demands reverence, humility and gratitude. It is a grand energy. And it is at the core of the exchange I have re-experienced with someone I connected with once many years ago when I stood in awe of her independent spirit, knowing there was something in her I needed.

It is love that my friend remembers experiencing in my parent’s home that Christmas, love between my parents, love for their children, and the love they extended to others in need of a soft place for a minute.

Thank-you Veronica for wearing the memorable coat back then, and for finding me now. Thank you for your attention, for recognizing my mother, for putting the pieces together, and for not stopping there–thank you for making contact and giving me a drink at the well of love flowing through you.

What they don’t report

“The number of dose related relationships [between mercury and autism] are linear and statistically significant. You can play with this all you want. They are linear. They are statistically significant,” said the American Academy of Pediatrics’ Dr. William Weil at a meeting of health officials in Simpsonwood (June of 2000), according to transcripts.

I know we’ve all heard it a million times from our doctors and nurses: there is no scientific evidence that vaccines cause autism, none. Correlations are coincidence, nothing more.

That may be.

But at that same Simpsonwood meeting, University of Colorado Immunologist Dr. Robert Johnson said this: “Forgive this personal comment, but I got called out at eight o’clock for an emergency call and my daughter-in-law delivered a son by c-section. Our first male in the line of the next generation and I do not want that grandson to get a Thimerosal containing vaccine until we know better what is going on. It will probably take a long time. In the meantime, and I know there are probably implications for this internationally, but in the meanwhile I think I want that grandson to only be given Thimerosal-free vaccines.”

He seems to believe the correlation is something to take seriously.

I don’t want to be Debbie Downer, and I dislike arguing. I wish with all my heart that I could believe there is no reason to doubt official messages to the public. But I also don’t want to be guilty of cowardice, and it is entirely your choice whether or not to take their words seriously.

Thimerosal has been removed or reduced from most childhood vaccines, I know. But no vaccines are free of preservatives or adjuvants. Preservatives are necessary for commercial reasons, immune-stimulating (neurotoxic) adjuvants are necessary to make them reasonably effective.

Further, there was, despite what they knew even then, no recall of vaccines already containing thimerosal; existing vaccines remained in use. A massive recall would have destroyed public confidence utterly. And trace amounts remain even in newer supposedly thimerosal-free vaccines.

One more thing: Consider these words from the Tripedia vaccine product insert information then on the Johns Hopkins Institute for Vaccine Safety website, now removed: “Adverse events reported during post-approval use of Tripedia vaccine include idiopathic thrombocytopenic purpura, SIDS [Sudden Infant Death Syndrome], anaphylactic reaction, cellulitis, autism, convulsion/grand mal convulsion, encephalopathy, hypotonia, neuropathy, somnolence and apnea.”

Was that information removed because the new vaccine no longer causes these things? Or because both the old and the new vaccines are strongly correlated with all these things, including SIDS and autism, and they don’t want to worry parents who may not have gone on to read the rest of the insert which goes on to say it isn’t possible to establish a causal relationship between the reactions and the components in the vaccine? Or was it because they know that even though causal relationships haven’t been proven, thinking parents will want to exercise caution? Because they know it’s immoral not to do the research that might conclusively prove or disprove the correlation?

Now, you may believe that the risks of vaccinating are insignificantly small, and that accepting the risks are in the interests of the greater good. You may believe the benefits outweigh the risks. You may believe cocooning is a realistic and effective approach. That’s fair, and that is your prerogative.

But if you’re one of those parents who has an intuition about your children being genetically predisposed to be at higher risk for reactions, for autoimmune disease and neurological damage, respect that. It is an intuition that should be honored, and a decision to opt out is one that can easily and reasonably be defended by the facts.

The thing is, thimerosal is, even in trace amounts, a neurotoxin. There is no disputing that. And when things are strongly correlated, the burden of proof should shift. Safety, not causation, ought to be proven. Just because the tobacco industry denied the correlation between smoking and cancer, and just because smoking doesn’t always result in cancer, it doesn’t mean that the correlation is insignificant.

Thanks to Jeffry John Aufderheide for all his research over the years. 

Honoring the Moment

You feel alone and pessimistic, tired of your skin, your unique pain. You’re tempted to resignation, to regret, or even things much smaller yet, things like self-pity, or manipulation, or resentment. You’re in the moment, aware of the darkness, but also that the darkness—however long and deep it may be—is not intolerable, nor permanent. You detach a little more, and simply observe.  Alongside the discouragement, you’re conscious of longing and hope too, and despite the more dark-toned emotions, immense gratitude.

You and sit and observe all of it as truth, without judgment. You hold the tension between what is and what you want in your hands, and then offer it up to the universe. You reject self-pity and, still observing and honoring your internal truth, take a step or two to love and nurture yourself, and in doing so, find enough of your essence to spill over onto your partner, your lover, your best friend.

And then the unexpected: you step out onto the street, see an old acquaintance you once had little in common with and normally exchange little more than a hello with. But today your intuition tells you this is no longer true, and you say just a little more than hello, and before you know it, you’re walking together, talking, and your intuition is confirmed: you now not only have something very major in common; you have in each other an ally on a number of sobering weights you have long carried mostly in private.

Or, in your mailbox, a note from someone you don’t remember, but who remembers you, and your family, and who affirms you deeply in exactly the way you need to be affirmed.

Or, you sleep deeply through a long night and wake up refreshed, without pain, and you feel like making carrot ginger soup, perhaps sharing with a friend.

An abundance of wealth.

It’s a way of being, meditation is. It’s living in that place between what is and what might be, that place that has room for our loneliness and limitations, but also room for our hopes and dreams. It’s a way of honoring our truest selves, more than it is something we do. It’s a way of milking all we can from life, embracing the richness of the comfortable alongside the uncomfortable. It doesn’t change things, but it changes everything.

Lift the Silence

“Take me to that place, where music sounds good again,” sings k.d. lang, and she did, she does. The sound two nights ago filled every inch of the auditorium, every pore in the room, and she took us there.

And all night long, and the next day, walking with other Edmontonians who’d come out to Lift the Silence, the refrain went on and on in my ears—take me to that place, where music sounds good again. That place where it is enough just to be alive, where facing each new day with a smile comes easily. That place where walking through dewy morning grass in bare feet is the purest pleasure, one worth getting up early for. That place where walking anywhere, the feeling of elastic hamstrings with each bounce of step, is the purest pleasure.

Take me to that place, before. Before I knew it wasn’t always enough to try hard, to pay your dues, to be kind and good. Before I doubted the motives and authenticity of our leaders. Before I knew dreams could be shattered and rupture us wide open and leave us raw to the elements. Before I watched that happen to my children, and my friends’ children. Before I knew about neurological or mitochondrial damage, before the stranger in the mirror, before we were orphaned, before we broke each other’s hearts.

Before I knew some who heard the music and loved it completely, only to have it silenced in a moment by being in the wrong place at the wrong time, or by some runaway cells that moved in and took over.

Before I knew the music could morph into cacophony, go quiet, even stop altogether. Before I knew some who panicked in the silence, and left us forever.

k.d. lang took us there the other night, not back to before all that—that’s never possible— but somehow, to that place where music sounds good again. And maybe the echo will be enough for a while again, for most of us at least.

This Moment

At the shoreline that is early morning, the threshold of consciousness, I am dimly aware of what has been, of a dull ache, of sharp disappointment, of fear, of the uncertainty of the future. Just before the wave crests, a short vivid film—a long cold night of the soul, loneliness, the burying of more than a few dreams in hard cold ground. The wave breaks, and for a moment I weep. Then I breathe deeply. All but the present slips away. I savor the softness of my pillow, the cool air coming through the open window, the leaves rustling in the trees, the warmth of my blanket. Then the surprise of cool hands on my sore feet, then on the small of my back, and the contrast between pain and sweet pleasure is enormous, intense. Without the discomfort, the comfort would not be. A scratch cannot satisfy in the absence of an itch, this I have learned.

Little changed in those few moments but my view of the landscape. It’s a view somewhat new to me, one that includes an acceptance of all that is, a knowing that we can tolerate that which we fear, that which is unpleasant. And in this moment, the surprise is that the pleasant outweighs the unpleasant once again. It’s true, much of the plot once brimming with the energy of new life and certainty is now devoid of life, empty, parched bare soil… but along the edges and in patches throughout I see bright fresh new shoots, blossoms that thrive on much less, life of a different sort, dreams much smaller, but vivid splashes of color nonetheless.

Color and warmth and touch give way to aroma: fresh coffee brewing. A new day. I will stop often to bring myself out of the past or the future and back to the present, out of my thoughts and into all my senses. I do it more easily now than I used to, for which I am grateful. It is one of the gifts of having come face-to-face with my mortality.