Holding hands with my new reality

Musing by Chris 

The food dreams stopped as soon as I was off the feeding tube and Jim was bringing me in fresh green juices and thicker smoothies. Once I was able to taste flavours again and they no longer were burning the tumor on the side of my tongue, my food fantasies were quelled.

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Food has always been an important part of our life together. All our travels have been focused on eating local cuisine, experimenting with live plant-based versions, and sampling local organic produce. Once the tumor began to grow, I could no longer handle spices, acidic food, salt, sugar, and even textures. My diet was relegated to a bland mush of high protein legumes, non-acidic green drinks, and my one indulgence of cold filtered coffee and Jim’s homemade almond milk. Prior to surgery we were given worse case scenarios, one of which included living on a feeding tube for the rest of my life. I was pretty determined that wouldn’t be happening on my watch as I sat in bed for hours observing my yellow vegan slop – i.e. Golden nectar – drip into the tube in my nose.

Each day I practice consuming foods that are slightly thicker, making my tongue work overtime moving the food around my mouth and to the back of my throat. It’s hard work and when I’m really hungry I resort to pureed soups. I’m ravenous. Each mouthful tastes like ambrosia. I just can’t seem to get enough food into me while increasing my weight and maintaining a steady weight is the goal at the moment. And there’s no longer a nagging tumor burning a reminder into my brain that life has taken an unexpected turn down nightmare alley.

being willing

I have a different variety of reminders these days.

  • A newly constructed tongue that is thick as a brick,
  • A site where the transplanted skin and vein were taken from my arm,
  • A donor site on my leg,
  • Speech sounds reminiscent of someone who has a hearing impairment while spilling out saliva like someone with cerebral palsy,
  • And a neck that is tight and scarred from ear to ear relearning how to turn from left to right and up and down.

My son flew back to the coast while I was in hospital and saw first hand the scars I am now left with. Upon returning home after two weeks in hospital I shared with him that I crumpled in the car on the way home overcome with fear and anxiety, desperately trying to find my breath and the positive outlook the incubator of hospital life cloistered me within. My loving son shared,

“I’m sure this is all so tough for you, but you have been so brave and positive. You must know that any physical symptoms of trauma you show are just badges of your courage and reminders of the love and support you have.”

courage

Opening my heart has been important for my recovery. Courage can only come when your heart beats in unison with the foundational elements of love, faith, trust, and patience. It’s not easy. It takes every fiber of my being.

The day before I left hospital I stood at my window looking out at my view of pristine mountains and ocean and sunshine. Waves of realization and droplets of fear teared down my cheeks. I knew I could no longer hide behind the familiar and understanding nods and smiles of staff and patients and friends and family. I would no longer be just one of the medical casualties of this particular brand of post-operative care. I would stand out in all my scarred and swollen and slurred imperfections hiding behind scarves, avoiding eye contact and potential conversations. There is so much to explain when you don’t quite fit in.

My life as an early interventionist and working with children with disabilities and their families and caregivers has been ever present on my mind. Advocating for their rights, seeing only the abilities rather than the disabilities, and adapting their world for inclusion became my raisin d’être. I never thought it would become my reality. And yet it is.

I wrote, upon my initial diagnosis, that with cancer each one of us loses something. Depending upon the degree of intervention that takes place, for some it is more radical and blatantly obvious. For some they can silently camouflage underneath clothing. For others they suddenly acquire a new fashion statement. And there are still others who never quite recover and instead lose the opportunity to grace this planet. Their ultimate sacrifice and our loss becomes a constant reminder of the temporary nature of life as we know it in this form.

don't fight the pain

Our form takes on physical attributes that we use to define who we are, to create recognizable characteristics that we can relate to, and to physically house our energy and provide us with a foundation from which we thrive, or not. It is our energetic form that gives us juice and becomes the essence we all grow to love. When we think of newborns, whether typically or alternatively able, they come with an energy that we tend to apply characteristics to from day one. “She looks like your mother’s side of the family.” “He has his father’s temperament.” And this simply arrives through our preconceived ideas of potentialities and familial observations. We don’t see these uniquely new and diverse physical forms as bundles of energy and light – and yet, they are the purest form of energy any one of us will ever hold. They are vibrating at a frequency we all strive to attain throughout our lifetimes and rarely reach until we are ready to pass.

This journey is one I have not been able to rush. From receiving the diagnosis to weighing preferred interventions to having surgery to receiving in-hospital post-operative care to being discharged and living at home within community, the stages are methodical and linear. First you have a trachea and then a capped trachea and then a bandage over the hole. First you have a feeding tube and then you move to thin liquids and then you try thicker substances and then you learn to chew again. First you lose half your tongue and then you have a transplanted donor from another part of your body and then you learn to move your tongue and open your mouth and then you learn to talk again. First you are in pain and whole and then you wake up segmented and pieced together still in pain and then you accept and adapt and heal.

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Yes the rush of anxiety is real and the ego is vulnerable. You are given a second chance at life in your newly reconstructed form. How one moves forward is dependent on the lessons learned, the light we allow in, and the self-love we have within to hold our hand and provide the necessary confidence to greet ourselves as whole, worthy, and capable. I will make it to tomorrow and the next day and the next day. And so it goes.

There was a blank whiteboard in the hall on my ward I walked past forty times a day during my self-imposed walking exercise regime. It was crying out for a quote. I wrote what was in my heart.

“In our vulnerability, each one of us has a choice. I choose joy. How are you choosing to show up today?”

On the day I left it still remained. So does the joy – as does my vulnerability.

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