Invisible elephants in the room

I’m at an exciting point in my life. I’ve written a book about part of my family’s history and the region it occurred in, and it’s done. I’ve taken the exhilarating and terrifying step of sending out my first query letter, and have already moved on to my next project, that of illustrating a story I wrote long ago for my children.

I’m not a writer by trade, and don’t have a degree in writing or history. I used to be a registered nurse, but I don’t work anymore. I was rear-ended in a car accident a few years ago, an accident that left no visible mark on me, very little on the car, and changed my life forever.

I had what was termed a closed head injury, even though I don’t remember hitting my head. I didn’t lose consciousness. But I do remember my head snapping back and forth as the shiny black SUV behind me smacked into the back of my little hatchback.

I was fine at first, and resisted going to the Emergency Room. I finally agreed to go to an urgent care center, where my first wave of dizziness hit. Adrenalin reaction, the doctor told me. Then it came back again. And again. I developed the feeling of being on the deck of a ship, with the ground beneath my feet no longer solid and steady.

I was sent for tests, tried on meds, and sent to physical therapy multiple times. Vestibular therapy, it’s called. I dutifully did my home exercises, watching my finger as I turned my head back and forth, walking up and down my kitchen as I turned my head back and forth, keeping my eyes on a spot I’d taped on the far wall. It made me dizzier and a bit nauseous. Good, I was told. That’s what it’s meant to do.

I was going to physical therapy when I started feeling unusually tired, lost my appetite and started losing weight. I was still dizzy and unsteady, and for a while wondered if these were just new symptoms. But another visit to another urgent care center and lots of testing came back with the diagnosis of probable cancer.

That night, I cried in my husband’s arms. “I’m scared,” I admitted. “I know,” he said, holding me firmly. “We’ll get through this.” I never cried about it after that. I knew that whatever came our way, we would get through it together.

Surgery weeks afterward confirmed the diagnosis. Diffuse Large B-cell Lymphoma. Six rounds of chemotherapy later I was bald, pale, skinny, and cancer-free.

That was five and a half years ago. I’m still dealing with the dizziness. Some days it’s so mild I don’t think about it, until something triggers a round of vertigo. Other days, I’m dizzy all day. Some days I drive, others I don’t feel safe enough to. When I’m at the grocery store or Wal-Mart, the handle on the cart provides a steadying support that’s helpful when I start feeling dizzy as I walk down rows of shelves loaded with merchandise. My husband and I hold hands when we’re out—we may look like we’re engaging in PDA, but he’s actually steadying me. When I’m standing, I lean on him, a wall, or whatever is nearby to help keep me feeling grounded. I have to close my eyes when the camera in what we’re watching on TV starts zooming around, and sometimes I wear my sunglasses to watch TV when everything on it feels like too much to handle. I get nauseous when we have to go up and down levels in a parking garage.

We moved recently, and I went to see a new (for me) neurologist. After telling him my history and going through an exam, he said that my best hope for improvement in symptoms might be prism glasses. He said that my symptoms seem to be mostly visual, and that prisms might be able to help—the research in this area is promising. I was thrilled, and when I got home immediately started researching where I could get this sort of treatment. I found out that it’s expensive, lengthy, and not covered by my insurance.

So here I am, an immune-compromised (the surgery was to remove my spleen, which helps fight infection), dizzy ex-nurse. Sometimes I feel guilty when I hear about others who’ve been through a battle with cancer and lost. Why them and not me? I gradually came to the realization that I needed to make the most of the second chance that I was given.

I’ve decided to do what I am drawn to, to the best that I am able to do it now. I write, I draw and I paint. I’m grateful for the good (mostly symptom-free) days and even the bad ones. I no longer have Bad Hair Days—I say that any day with hair is a good day.

As with so many people with chronic conditions, you might not be able to tell by looking at me that I’m struggling. You might not notice that I’m hanging onto the shopping cart handle like it’s a lifeline. You don’t realize that your cough could land me in the hospital. My chronic conditions are invisible elephants in the room. You may not see them, but their presence has an effect on your impressions of me.

And I don’t know what you may be dealing with—physically, mentally, or emotionally. I don’t know what your day’s been like, and I do my best to keep that in mind. Because we all have burdens that nobody else can see. Our own invisible elephants.

elephant - Copy

 

 


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