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Myeloma, Party of Two: Fragile
By: Tabitha Tow Burns; Published: September 28, 2017 @ 4:27 pm | Comments Disabled
The breeze swirls about my face as I peer out towards the space where the thin blue lines meet on the horizon. The water is deceivingly calm now. From my painted Adirondack perch, I can hear the lapping of the water and cresting of the waves, and the sounds of children laughing as they buried one another in the sand. I welcome the sun from my favorite pier off the Galveston Seawall, and I think about how different things were a month ago.
Many of you know that I’m not originally from Houston. I grew up in tornado country. I never had to deal with hurricanes, tropical winds, or flooding. Last month Hurricane Harvey brought an estimated 27 trillion gallons of water on Houston and the Gulf Coast. It was a historic storm that left a devastating path of water-logged destruction. You could kayak down major freeways, boat through neighborhoods, and hear rescue helicopters flying at all hours. Thankfully, we did not flood, but we know many that did. The damage throughout the city was shocking.
Having survived my first hurricane, I now see the water differently. While water gives us life, it can most certainly take it away. There is great vitality and potential for destruction in nature, and we are but small impediments to its progress. How paradoxical that a life-sustaining force can be the same force that smites it from us. I now see an ironic circle of life and death in the foamy waves that rhythmically unfurl against the sand.
My husband Daniel’s myeloma is an ironic circle as well. His blood is the lifeforce that drives him, and yet, within the same blood are aberrant, malignant plasma cells that are growing and thrashing against his immune system, chewing at his bones, and exhausting his kidneys. With every test and result, we are watching and waiting – likes in the hours leading up to Harvey’s landfall – to see what potential devastation might take a hold of our lives and shake us to our foundations. While it’s easy to appreciate the beauty of the sea when it’s calm, how do you forget its fury once it’s been seen? How do you come to terms with being an insignificant cog in the circle of life?
We take so much for granted. I see people surfing and enjoying the beach, and they don’t seem to care that the power of the waves can wash them out to sea. They trust that it won’t happen. I play a similar mental game with Daniel’s myeloma. Yes, he has myeloma, but he’s doing well now, so I trust that it will continue.
We had to miss Daniel’s regularly scheduled oncology appointment due to Harvey, and I must admit that sitting here on this beach, on some level, I’m reluctant to reschedule it. I’d rather postpone it, and be like children playing in the surf, unaware of the dangers in our midst. What a luxury – to live like a tourist, only seeing the good side of this duality and never the dangers!
Making sense of this life is a philosopher’s task in a detached, academic setting. But, this is real life. How do we make sense of the seemingly random pattern of the lucky and the unlucky, whether it’s a hurricane or myeloma survival? Why are some people spared from life’s disasters and others’ homes are destroyed? Why do some people live long, healthy lives, while others are stricken with disease in their prime?
The truth is, I can’t make sense of it. I have faith that it will eventually all work out, but maybe it’s because I don’t have any other choice? I don’t understand the beauty and devastation that we are subject to in this life, and I can’t reason through the apparent randomness of it all.
As Daniel’s caregiver and spouse, I want to provide whatever emotional and physical comfort to him that I can. Today, this means craning my head towards the light and closing my eyes to Hurricane Harvey and myeloma, so that I can be present here in this moment with my husband. But, as I sit here and wait for the waves to wash away these dark and stormy thoughts, I hear in my mind the musician Sting’s song, “Fragile”:
If blood will flow when flesh and steel are one,
drying in the color of the evening sun.
Tomorrow's rain will wash the stains away, but something in our minds will always stay…
For all those born beneath an angry star,
Lest we forget how fragile we are.
On and on the rain will fall. Like tears from a star.
Like tears from a star
On and on the rain will say, how fragile we are.
How fragile we are.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here [1].
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