No One Knows

If you are a regular follower of my blog, you know I have cancer. If you aren’t a regular, but happened upon my blog today — welcome, and let me hip you to my diagnosis. I have Waldenstroms Macroglobulanemia. It’s a rare form of non-hodgkin’s lymphoma.

This December I’ll actually have survived, and with some regularity, thrived, with WM for 11 years. Amazing to say — especially considering the first prognosis was that I would leave the planet in 5 years. Clearly, and thankfully, that information was incorrect.

Lately I’ve been struggling a bit more with how WM makes me feel physically, emotionally, and mentally. WM compromises my immune system making me more likely to get sick. I’m not sure if it’s because of the immune system connection but it also sometimes just knocks me out — with little or no warning. I will be up and about, doing the myriad of things I do, and out of the blue – WHAM! — I am completely exhausted. Sometimes that makes me feel a bit crazy, or like a completely weakling.

Funny, as my struggle has been increasing, so have the comments from people I meet. No one notices the struggle. (I think that’s a testament to my ability to breathe, and do, and be — and to all the amazing people that hold me up in so many different ways.) They all say “WOW! You look FANTASTIC!!!”  It cracks me up. The latest person told me every time they see me, no matter what I’m going through, I seem to have an ethereal glow about me. (Wow.)

So regardless of how I feel, I’ve decided to accept these statements as truth. I look (and am) fantastic, and I glow, with an ethereal glow.

But today, glowing or not, I’ve felt incredibly frustrated, irritated, and emotionally spent. Funny, feeling all that is frustrating, irritating and emotionally draining. But, to be kind to myself I am just getting over one of those 3 day in bed episodes.

As I drove home after work I wondered — with as little crankiness and judgement as possible — “What is wrong with me?!? Why is this sometimes so painfully, crushingly difficult?” This, along with a myriad of other questions that come in these moments of angst.

To ease the pain in my chest, I took a few deep breaths, said a prayer, and turned on Audible. I started listening to I’ll Push You.

As I listened I thought … oh yeah, that’s it. One of the reasons this is so tough is because I’m capable and strong. I have been my whole life, and I take some pride, comfort, and enjoyment in that. I love pushing myself, and being in control, and crushing goals and obstacles, and, did I mention, being in control.

F*ck. It’s hard to not be in control. It’s hard to face my own inability to crush this. It’s hard to be weak at times. Makes me cry. The tears feel like a sign of weakness, but I think the willingness to shed them, to feel the pain that causes them, is a sign of strength. So funny right? A willingness to experience weakness and fear, is actually a strength.

Every day — sometimes every moment — I’m working on it. Working on being healthy, being strong, being weak, eating well, hydrating, taking care of my emotional and mental wellbeing, asking for help, giving help, accepting kindness, giving kindness, praying, trusting God, asking the Saints and angels to be with me, having admirably stubborn optimism, glowing, and sometimes, weeping and questioning it all.

In I’ll Push You, when asked about the prognosis, Justin says “No one knows.” I think that’s true with me as well. No one really knows. No one knows when I’ll need treatment again, when my symptoms will become more severe, when they will discover a cure, or when I’ll leave the planet. I’ve never been a big fan of that. But today, it seemed,  “no one knows” is the perfect prognosis.

Picasso once said “Everything you can imagine is real.” Why not imagine a great prognosis and a beautiful life — no matter what? Cancer-free, cancer-light, or cancer-not-so-light, life still is, and it’s good.

Funny,  as I write this, I feel like vomiting. It isn’t easy to be human, or have cancer, or be afraid, or not be sure what’s what. But, it’s all good.

So I embrace my glow — my ethereal glow — no matter what. And, since no one knows, I will imagine fantabulousness, and breathe through all else.

Perhaps by now you are wondering what this has to do with creativity. For a while so was I! Obviously it has to do with creativity because it’s about me — the creativity loving educator. But, as I sip my cup of tea and take a moment to think, I believe the connection to creativity is deeper.

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Creatives look at things differently. We choose to imagine things that others do not. We engage in possibility thinking, wondering, risking, learning, and living with curiosity, joy, and openness.

 

Creativity is about life — surviving, thriving, and glowing — even when we feel like vomiting!

Oh, I must add that to my imagining — fantabulousness with no anxiety induced nausea. Ah yes, that is good.

 

 

 

Replace Negativity with Creativity!

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What a great thought! Replace negativity with creativity.

I found this gem while reading Beautiful Faces by Jane Davenport. (Which by the way, is an awesome book. The link is her website.)

When I first read it “replace negativity with creativity,” I laughed out loud. Not because it was funny, but because it was remarkably good. It is such a brilliant, simple visual that holds profoundness beyond its uncomplicated beauty. I adore artistic creativity and engage in it often. But, when I read Jane’s words I immediately thought of creative thinking.

“YES!” I thought. “Let’s replace negativity with creativity. Let’s replace negative thinking with creative thinking!”

Unlike negativity, creative thinking “bridges the gap between what is dreamt and what is desired; it knows no bounds and is not restricted by possibilities.” How fantabulous is that?!!

I recently returned from my yearly appointment at the Dana-Farber Cancer Institute. I gotta say, those doctors, nurses, and researchers are some seriously brainy men and women! They are constantly engaging cancer, and all its destructive negativity, with their brilliance and creative thinking.

This visit, my oncologist and I talked about a drug they are creating specifically for Waldenstrom’s macroglobulinemia. He shared a myriad of thoughts, ideas and wonderings that they are encountering in their work. He was apologetic as he told me they hadn’t yet completed the drug.

I chuckled inwardly and said, “Oh my! I’m not surprised at all that it’s super difficult and entails a boat load of hard work. It is one crazy, fabulous, brilliantly-complicated piece of creative thinking and doing!”

Like me, and all creatives, my doctor and his team employ many processes and strategies as we work to replace negativity with creativity. Here are a few I regularly employ.

  • Possibility thinking
    • Being open to the notion that there are many possibilities. Possibilities not yet conceived, as well as those imagined but not yet realized.
  • Lateral thinking
    • Looking at the problem/issue from all different angles, even those that might seem a bit ridiculous, implausible or less than useful.
  • Divergent thinking
    • Generating all sorts of ideas — ones that are outside, as well as inside, the box.
  • Making connections
    • Many times these connections are between seemingly unrelated things.
  • Conversation
  • Silence
  • Fermentation
    • LOL! I’m not sure anyone else refers to it as fermenting, but I enjoy the image. This is when I stop deliberate consideration of the problem or any possible solutions. Much like actual fermentation it mught look like nothing is happening. But, nothing could be farther from the truth. My unconcious mind is working to make sense of my ideas, and at some point, clarity and/or new ideas blubble up to my conscious mind, bursting forth as flashes of insight or revised ideas.
  • Questioning
    • I’m like a 5 year old! I ask lots of questions – especially, but not limited to, “How might we?” “What if?” “How come?” “How do you know?” and “Why not?”
  • Sleeping
  • Walking
    • My MA tutor Karl K. Jeffries — also quite a brainy dude — suggested a walk, whenever I was being overcome by “existential angst” thinking my research and effort was meaningless, and would never amount to anything. The stepping away and moving — especially walking outside — was always valuable.
  • Deep sighs of relief
    • Uri Alon — yet another brainy guy in my universe — talks about deep sighs of relief in his systems biology lectures. In a relaxed state he says “we tend to be more curious, playful … it’s good for learning.” Uri states there is actually a feedback loop between the relaxed state and breathing. We breathe more deeply when we are relaxed, and we can induce that more relaxed state by breathing deeply  — by taking, as he explains “deep sighs of relief.” Try it, it actually works! I use deep sighs of relief regularly with myself and my Kindergarten students. Depending on the vigor of your exhale, it can be very funny!
  • Looking deeply
    • This deep looking sometimes involves research, but often is simply prolonged purposeful staring at my ideas and thoughts.
  • Openness to the new, surprising, and unexpected.
  • Risk taking
    • Sometimes all of the above is the risk taking endeavor, sometimes the risk is about the action, sometimes about the product.
  • Critical Thinking and evaluation
    • Having done all these things and more, I then need to think critically and see if my ideas, products or processes are actually useful.
  • Perseverance
    • It’s super important to continue — even when it is tough, frustrating, and we’re deep in the cloud. Rethinking, starting the process all over again, remaining open, hopeful and determined are essential if we are to replace negativity with creativity.

I’m going to keep at it in my life and my work. I have no doubt the Dana-Farber people will too. My fingers are crossed they will succeed in creating a drug for WM treatment sooner rather than later — successfully erasing a bit more negativity in the world.

How about you?

What will you do?

I hope you’ll give it a go.

Replace negativity with creativity!

I believe in you!

 

 

 

 

 

 

 

 

Cancer, Creativity and Possibility

Never let it be said that creativity is purposeless! If you have ever thought that, or begin to think or say it now, bite your tongue! lol

Creativity has many joyous, important, and profound purposes in our lives and world. Not the least of which is the ability to express ourselves, sort through our thoughts and feelings, and emerge, a bit stronger, with more understanding, and possibly, a nice piece of creative work.

I have cancer. A rare form with a ridiculously long name — Waldenstrom Macroglobulinemia (WM). It’s a type of non-Hodgkin lymphoma. I used to joke that once I learned how to spell it, I should be granted a cure! lol

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But, though I can spell it, I still have it. I’m doing great, but from time to time, I am a bit overwhelmed sharing my body with WM. And, sometimes even more overwhelming than sharing my body with it, is sharing my mind and spirit it.

A couple days ago, I had the idea to write a poem – in the hopes that it would help me pull my thoughts and emotions back from the edge, into a place of greater strength, joy, and positivity — really just a place that is more me.

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For truly, I am strong, fierce, powerful, joy-filled, positive, awesome, and full of life! I am a warrior. My life is full of possibility.

 

Impossible?

Is anything undeniably impossible?

My spirit rebels at the suggestion that good things might be impossible.

Possibility surrounds me, and gives my soul joyous pause.

Of course, fear and doubt mingle in, at times rising to the top, obscuring joy and hope.

So much is unsure.

Success is not guaranteed, and solutions are not yet seen, found, created, done, or lived.

I breathe deep breaths, and fortify myself with these thoughts:

Be brave and stubborn. Believe all is possible.

Live as though success is inevitable, and your actions and thoughts encourage its coming.

Expect, and eagerly embrace, the awesomeness and miracles that surround, and are, you!