Life on the bleeding edge

When reality is unbearable, you need to become unreasonable [Cancer qualifies you]

Photo by Dragos Gontariu on Unsplash

THE BLEEDING EDGE

Do you have a road you take frequently, but hate deeply? I do. La Cienega Blvd. It’s all gray, ugly-looking, and predictably choked every single time! I am on my way to get yet another scan at the hospital – this one needed for this new experimental treatment for my unyielding stage 4 cancer. I badly need to distract myself. I call my nurse.

Here’s the news: As of this morning, this treatment has failed to work in 2 out of the 3 people in the world that have tried it so far. I will be number 4.

I have to sit with that for a moment.

 You know how they talk about how great it is to be on “the leading edge of science”? In my case, it feels a lot more like the bleeding edge. I am now living my life on the bleeding edge of science.

Can I live in there? I’ll tell you.

In the too familiar waiting room of the imaging center, a young woman in her 20s is wheeled in in a wheelchair. My heart sinks. People in varying states of depleted wellness, wait, nervous, uneasy.

My attention fades out, and I see myself wandering into a hospital, into rooms filled with patients connected to tubes and instruments, and units with sick kids and babies. Is there anything more life-crushing, more unfair, than  sick kids in hospital beds?

WHILE YOU’RE NOT WATCHING, YOU CAN GET STUCK IN MISERY

I’ve been spending time in this dark space myself lately – since my last treatment failed to make a dent.  The more I stay here, the deeper I sink.

My mornings get cloudy, my evenings stormy. My tomorrows look rendered in grey-black ink. The colors have run down the canvas and dissolved in the mud beneath. And pretty soon, I live in that mud.

It’s so easy to fall into this misery. And some people can live out their lives in this state. But misery will defeat you in the end. I can’t do it.

I hate misery with a passion. I hate the darkness, however logical and justified it may be. I ache for the colors and the vitality I used to feel, that have worn out after so many battles.

How do you navigate that minefield between the rose bushes in my head and the battle tanks in my reality?

How do you move between the exploding field of colors you crave and the monotone grays of the weapons aiming at you?

I can’t detach from the vibrancy of life, and I don’t want to attach to the deadness of the grays. I need a lifeline out of this.

And I think I just stumbled into one. Let me tell you!

LIFE IS SHORT – OR IS IT? AND, SENECA IS WRONG 

They say life is short.

What they mean is that the good part is short. The part where you don’t just smell the roses, but you fantasize about birthing your own reds, yellows, the oranges I love; where you strategize for their bloom, how they will look through your kitchen window. For years afterwards, you are surprised every time you spot them. Did I make all that??

The good part of life is where you dream and create. 

You are a creator, God herself.

The good part of life is where you are a creator, God herself

You make love, you make kids, you make a home. You make careers, you make new worlds in your head, you make the rounds of the planet. You figure out how stuff works, what makes humans tick. You are deep in the fertile soil of life.

Photo by Giacomo Alonzi on Unsplash

I loved that life.

It never occurred to me that all this was temporary or about to crash down a sudden cliff. I dove right down into it. With the force of all my still-dormant desires, my ever-expanding expectations of more adventures, more love, more life. I had no idea.

Our minds insist that we are always 25, and life will keep going on as it goes on. No one tells you how unacceptable, preposterous, revolting it would feel, to know you are done before you are done. It is incomprehensible that our bodies will fade, downgrade.

The stoic Roman philosopher Seneca wrote an entire book “On the shortness of life”. He claims that life seems short because we waste so much of it. No, Mr. Seneca, you are wrong. I did not waste my time. It is time that wasted me.

Seneca claims that life seems short because we waste so much of it. Wrong. I did not waste my time. It is time that wasted me.

So, yes, I finally realized that it is that good part of life that is short. The bad part, the degrading, once it kicks off, can unfold over what seems like a remarkably long period of time.

And now, I don’t care about reality, or logic. I am not prepared to transition from the creator of my universe to the consumer of its poisonous runoff.

REVOLT!

I want to revolt. I revolt. I want a re-entry back into the world of adventure. And right there, suddenly, in this one word, it occurs to me: Adventure. That has always been, and can now still, be my lifeline.

It takes a shift in my head. A change. See, I am, in fact, in an adventure already! It may be on the bleeding edge of science, but it is still an adventure. Or, I will make it one.

ADVENTURE – OR, HOW TO HAVE FUN IN HELL

With this one thought, everything changes. Every ache, every pile of needles and blood vials, every bleak statistic, becomes part of the adventure. It makes me curious about what’s next. It makes me feel like I am walking on that uphill, narrow, muddy road in the countryside, and I wait to see what’s around the corner. I can make myself laugh with so much unknown, lying here in front of me. Isn’t that what an adventure is about? So laugh!

Photo by Oksana Taran on Unsplash

  • I can’t hold that yoga pose for 3 minutes today? Ha! That’s funny!
  • I can’t get rid of the needle marks on my arm? Ha ha! 
  • Does my backbone give me that piercing pain, like a Roman soldier on his horse found just the spot with his spear? Hahaha! I imagine the soldier, and I swing around, and with a fierce high-kick, he is off the horse. Good riddance.

Just another step in the adventure.

BE UNREASONABLE

Reality is what it is – and it can be objectively bad. But living there full-time is entirely unhelpful. The reality that matters for how I live, is the one in my head.

Because our brains don’t live in objective reality. They live in this made-up world of interpretation of reality for one sole goal: survival. That is how it is. And survival right now, is this adventure I am on. Because the other option is unbearable.

Be entirely unreasonable

Laugh at it. Life is fundamentally ridiculous, absurd, both hilarious and depressing. Choose wisely.

This is the shift: Change.

Not for the cold statistics of survival times, but for the warm overture of each day’s symphony, for what I can create today. I choose adventure.

Will you?

Photo by Abbas Malek Hosseini عطاردوار on Unsplash

Marina K
marina@theQuestionsYouAsk.com
7 Comments
  • Kathleen Reardon
    Posted at 09:59h, 10 July

    You are brave and beautiful, Marina. Adventure is the spark of life. Thank you for this eloquent reminder. Sending love and hugs. xo

  • Jacqueline Scarcello
    Posted at 11:41h, 10 July

    This is beyond stunning, this is a journey into the wild heart of a dear friend who is calling us to live so filly is scares me. Can I honour her? Well , it is yet to be seen but I can thank her for the invitation.
    Thank you dearest friend , challenger of my growth and spirit, thank you.

  • Monika Lolis
    Posted at 14:38h, 10 July

    Marina, thank you for the very eloquent and exquisite description of your latest “adventure” in life. We all should follow your example and make our own reality in which we can be who we yearn to be. Life can be short or long, depending on how one looks at it, and yours is full of adventure. You are full of life Marina, and have plans for the many tomorrows. I wish you the fulfillment of those plans. I wish you life, like you want it, my Friend. You fill me with hope and love for the process of living. Thank you for your beautiful writing.

  • Heidi Swan
    Posted at 18:48h, 10 July

    Dear Marina
    Beautiful writing by a beautiful writer and speaker.
    My eyes are full of tears..
    I appreciate the reminder we can choose our path. And choose to make any we are on an adventure full of vibrant colors. A fertile life.

  • Tom Marzouk
    Posted at 19:13h, 10 July

    Wow. I just read this at my home in Boston. It is so touchy and also so true. I lost my wife 13 years ago to Colon Cancer and with every sentence I read, I relived the some very dark days and also some days with laughter. My late wife tried so hard to fight her cancer with laughter. God bless you Marina and thanks for sharing. 🙏🙏🙏

  • Patricia H. Arnazzi
    Posted at 00:14h, 11 July

    Dear Marina.
    It has been a while since I saw you last. I have often thought of you and wondered how you were doing.
    You have given me a glimpse of what these years and this battle has cost you.
    Thank you for inviting me to walk this journey with you in this way.
    I am here if you need me
    Heaven is aware of you, my friend

  • Arvind Bhambri
    Posted at 13:57h, 12 July

    Dear Marina,
    You have been an inspiration for many years. It is rare that a student becomes a teacher, a model, a trail blazer, and a personal guide. You have done all this and more. Your insights are always perceptive and they always touch my heart. This has been true for the past twenty years, ever since we sat up all night at LAX airport during the Agribuys days. But your recent posts have taken my awareness to new heights and given life new meaning. I wish I could share and somehow diminish your pain. I wish I could somehow light a fire under the multi-trillion dollar healthcare companies and make them burn with your pain until they find a cure for you. I hope I can somehow turn these wishes into action, and that you will continue your valiant fight for yourself and for all of us who admire and depend on you.