Can I Get a Light?
written by: Lisa Rivers Kiesling
“Can I get a light please,” was all I could say. My heart was pounding out of my chest from anxiety and fear, disguised as anger. How? Why? My mind was all over the place. “Please…can I have the lighter!” I demanded. He handed it to me without saying a word.
Shit, now I feel guilty. He has feelings too and I’m sure he is concerned or maybe even scared. But it isn’t his reality, his body, or his lab results. He wasn’t the one airlifted to Portland with a platelet count so critically high that a priest was called in. My primary care doctor called me an anomaly, which I must say doesn’t really instill a lot of confidence in his knowledge and ability.
I took a pull off the cigarette, held back a cough, and then passed it to my husband. “Here, take it. Does everything I do require your approval first?” I pleaded, “Please don’t take away my ability to live life because I’m labled terminal. I need to figure this out to my own satisfaction, get all the facts, find out what I can and need to do to stay alive. I might not want to do anything at all. It’s about the quality of my life. No one else’s.”
I heard myself talking and it was I, I, I. But it is me. Those lab results were mine and mine alone. I have Cancer. I was given a time frame for my life.
There was no good news. My heart has blood clots, my liver, my kidneys and my spleen, all riddled with blood clots. I had a stroke and now a bleeding brain. I’m left to sit all day and think about dying. Weighted down with all of the what if’s and how comes. This constant stream of questions that have no answers. Could a blood clot kill me? Does my liver fail or do my kidneys? Maybe I’ll just drown in the next 7 liters of fluid they pull from around my heart.
Can anyone stop my head from spinning? Or take my place? Or really understand. Because, statements of false hope and the condescending glance and pat on the hand, are insulting. My life has been reduced to waiting rooms and stale magazines, and the smell of antiseptic now nauseates me.
“Let me get another drag babe, please,” I said sweetly, “I don’t want to fight. I’m just overwhelmed and frightened.” And with tears in his eyes he said, “I know honey, so am I.”
I am now looking across at the man, that just 3 weeks ago, was standing next to me in a little chapel in Las Vegas exchanging the words ‘I do’ with me. Finally, at 55, I found the man of my dreams, my soulmate, the one who completes me as a human being. This man has shown me patience and understanding that surpassed my comprehension. Who sees what’s important to me and gives it value. Nurtures my hurts and insecurities and encourages my dreams and desires.
And in return I hand him… myelofibrosis.
And so it begins. What I thought was to be my life’s next chapter has now become my last. And with a strong pull off the cigarette I pass it back to him as my final gesture of surrender. Exhaling in defeat, watching my hopes and dreams dissipate with the smoke.
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