Tuesday, March 01, 2011

Surviving, thriving, smashing

Nine of us sat around the table at my Acoustic Neuroma support group meeting. Three women had facial nerve damage from their brain surgery -  paralysis on one side of the face.  When the surgeons scrape the tumor off the vestibular nerve, there is a risk of damaging crucial facial nerves in the process. It's unusual to see such a high rate of paralysis in such a small group but there they were.  One of these women is forty-nine, the other two are in their thirties and they are all confronting a life ahead dealing with a major disfigurement.

By comparison, I am so grateful to have been dealt my hand. Balance problems, single sided hearing, screwed up taste perception - these things are hardly worth mentioning compared to having people look at you like you're a freak  - which is what these other younger women must learn to handle. 

Our speaker, in her early thirties, has facial paralysis resulting from surgery for stage 4 adenoidal cystic carcinoma. Young, vivacious, beautiful, her life was golden. Then her cancer came galloping on the scene and everything changed.

Before she started her talk, she gave us new name tags to wear. My new name was Azize. She asked us how we felt about having the new names, likening the re-naming to the new identity we all were given when diagnosed with our brain tumors or in her case, cancer. As she put it - the hand of fate came down and slapped us with a new identity. Did we want it? No. Do we like it? Well....most of our new names were foreign and awkward; we weren't comfortable with them.

She went on to give a great presentation about the emotional stages one experiences with a life threatening illness during which she told many entertaining stories about her own journey of healing. At one point, full of anger, she and her husband went to Sarah's Smash Shack, a unique place in San Diego where you could buy cheap crockery and destroy it on site. While throwing items at the wall, you were encouraged to scream all you wanted while loud, aggressive music pounded along as an accompaniment.  They smashed cheap ashtray after cheap vase after cheap plate into a million pieces. For $150.00 they blew off a lot of steam. Unfortunately Sarah's Smash Shack is closed; however good it was as a therapy tool, perhaps it wasn't so good as a business model?
Photo courtesy of Sarah's Smash Shack

The two themes weaving through her presentation dealt with surviving and thriving. Surviving by getting the medical help you need as soon as you can. Thriving was more complicated - three of the many things she discussed were: getting rid of toxicity in your life, getting to know and trust your gut and activating your bullshit detector. Sound advice.

The grand finale was her translation of the awkward, unlovely, foreign names she'd assigned us. Yes, they all have lovely meanings. Mine, Azize means "esteemed".  The message was clear - your new identity may feel strange and cause some discomfort, but look a little deeper and as she did, you could find something wonderful.

Like many savvy cancer survivors, she views her disease as a gift which taught her to live every day in the moment and to embrace it as fully as she can. "We've got this here and now - we've got today. Live it."

If you ever need a motivational speaker for any reason, this woman is fantastic. Let me know if you have any interest. 

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