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Shake the Disease

Here is a plea
From my heart to you
Nobody knows me
As well as you do
You know how hard it is for me
To shake the disease
That takes hold of my tongue
In situations like these
Understand me...understand me...

"Shake the Disease"
Writer: Martin Gore. Copyright: EMI Music Publishing Ltd.

Oh, Martin Gore, you are so wise. Little did I know that his lyrics, which pulled at my heart strings as a tween, would be so relevant 30 years later. This is a love song for the ages. You don't need to have a lover to relate to this song, in fact, it resonates more if you haven't yet found your true love. And not only does it describe one person's angst at wanting to be loved and understood, but how strongly our drive is to express ourselves with the right words at the right time.

The song has special meaning for me, as it is quite literally a disease that has shaken my ability to express myself.

If you've read any of my previous posts you already know that cancer treatment does a real number on your spirit and quality of life. Superficially, our appearance takes a real toll. We lose our hair, it grows back thinner. Chemo puffs up our faces and they never quite deflate. Our eyes mysteriously change, ever so slightly. Some of us put on pounds from anti-cancer meds that we will never shed. Others lose muscle tone we will never regain. Our gait is different and our heads hang just a little off-kilter than our pre-diagnosis selves.

Individually, these changes are manageable for most, but when looked at as a whole, their cumulative effect is something to contend with. They can shape our perception of ourselves and of how we believe others see us. I wanted to share these thoughts with you as I suspect we all possess these vulnerabilities to some extent. Cancer patients or not, we all question ourselves and what others think of us.

More profoundly than any physical ailment, it has been my loss for (or rather, of) words that has hit me like a sledgehammer. Unlike physical changes which came, lingered, and for the most part, went, cognitive changes stuck around for the long haul. So what happens when the physical symptoms disappear, and only the cognitive effects remain? Although I've been living with them for some time now, their impact went relatively unnoticed until I re-entered the workforce.

In December I returned to work and was faced with the dual challenge of greeting colleagues who remember the old, pre-cancer me, and new co-workers who are getting to know me for the first time. Many know about the breast cancer, but I imagine it must be hard to reconcile that with my outward appearance, as I look relatively "normal". Long-gone are the tell-tale signs of chemo - the bald head, the eyebrowless face and the puffy dimples (well, for the most part!). I have enough strength most of the time to go stretches with no visible signs of fatigue, and I've become quite adept at concealing my various cognitive challenges (lack of focus, distractability, confusion and general mind-mayhem) to the point where my close friends claim that these deficiencies are unnoticeable. This is both a comfort and my nemesis, as I often think things would be easier to manage were my disabilities more in-your-face.

How do you explain to someone who knows nothing of your illness that you need them to repeat instructions two, three or even four times before they are understood? How do you contribute meaningful input in a meeting when you are still processing information that was discussed two or three minutes prior? And how do you shake off words that go unsaid at a critical moment, simply because your brain has momentarily betrayed you and decided to block out vocabulary you mastered in grade 2?

As I look back at what I've just written it occurs to me that these deficiencies of mine, though at times debilitating, are really just an exaggeration of common themes we all experience. Humility. Confusion. Distraction. Misunderstanding. Instead of openly expressing my needs, I turn my back on them, hoping it will all work itself out or slip under the radar. All of this effort impedes my ability to communicate freely, and consequently, to forge genuine, productive relationships with others, be they professional, platonic or romantic. I suspect we all experience this to varying degrees at some point in our lives.

So how do we overcome these hurtles? I think it starts with being honest with ourselves and accepting who we are today, versus who we believe we should be tomorrow. I know not one person who does not put a tremendous amount of pressure on themselves to be a better person, parent, daughter, son, partner, worker or friend. It is exhausting, and often ineffective. I'm not suggesting we shouldn't strive to be our best, to set realistic goals and work towards them. But I think the under-valued prize here is recognizing who we are at this particular moment in time and giving ourselves credit for what we have already accomplished. We are all survivors of something.

It is no coincidence that you are reading this blog post today. You are either a good friend of mine, an acquaintance, a cancer patient, cancer curious, blog-curious, Ellen-Degeneres-follower-gone-astray, or a devoted Depeche Mode fanatic. Regardless, you decided to read this because something about it appealed to you. I believe that when we read, we enrich our souls, as we have a window into someone else's reality (or fantasy). We connect, or don't, with the author's viewpoints, and much like lyrics that stick in our brains for decades, these shared ideas help forge future relationships.

So today is Valentine's Day. I challenge you not to step outside of your comfort zone and try new things, but to step inside yourselves and discover what makes you you. Self-discovery is a skill that must be honed in order to reap the benefits. It takes patience and determination, as you have only yourselves to answer to. Indelibly, it is hard to shake the disease, and we can fall into a pattern of misunderstanding, lost words and failed opportunities. But by unlocking the door and taking a glimpse inside of yourself, you are guaranteed to find a treasure far greater than that which another person's love could ever give you. You hold the key. Will you turn it?



  1. Once again you are so right, Ellen. Accepting who we are today, not yesterday and not who we hope to be tomorrow - I try to be in the moment right now. This is me, right here, right now. And I love reading your blog.


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