"Pretend Like You Are Okay" (Part 1)
Throughout my 6 ½ year journey with chronic myeloid leukemia (CML), I’ve always worked. When I was first diagnosed, I was working as a reporter at a large daily newspaper. One of my “beats” involved writing business profiles and feature articles. I spent a lot of hours touring manufacturing plants and other facilities, describing their operations for readers.
Looking back on it now, I have no idea how I did it. Seriously. I remember having a little ritual every time I was going on assignment. To perk myself up beforehand, I often repeated the mantra, “Pretend like you are okay.”
I’d say it over and over until I had to pull it off, stepping out of my car, cheerfully meeting the interviewee, traipsing around often huge businesses, asking questions, taking notes… you know, doing my job.
The best actress
Whether I felt weak, faint, tired, in pain, or anything else from my blood cancer, no one on the outside ever knew. I was like an actress playing a role. I was portraying a person in good health, which was very far from the truth.
There were a few close calls. I remember walking by my car one time where I met up with my interviewee walking to the facility. He glanced into my car and saw a cane or crutch on the front seat. “Is that yours? What’s wrong?”
I made up something at the time about getting over a twisted ankle. “Oh, I won’t make you walk too much then.” Thanks. I shrugged it off. Pretended like I was okay.
When I got home on these occasions, sometimes I would cry over all the pain and fatigue that came in the aftermath. And come it did. The oral tyrosine kinase inhibitor I take causes nausea, stomach pain, bone pain, rashes, and more.
Luckily, my other editing and writing jobs were done from home. If I felt sick or too tired to function that day, I could take breaks, naps, or plow through it, depending on deadlines and the situation.
No one knew what I was experiencing… ever. My very last business tour was at a fitness facility and climbing gym. Despite there being a perfectly good office on the first floor, the owner enthusiastically chirped that we could use the upper-level lounge for the interview.
Skip the stairs
I looked at the 30 plus stairs and for once, I had to come clean. There was no elevator. I asked. “I’m sorry we’ll need to meet down here. I can’t manage those stairs,” I said. He was less than thrilled and likely thought I was lazy, overweight, or a jerk. So be it. I saved myself from the days’ worth of leg and knee pain likely to follow, if I didn’t collapse on the way up.
On what ended up being my last day on that job, I was hobbling with a cane back to my car in the dark after covering a government meeting. The parking lot was poorly lit and I nearly fell over when my foot hit one of many potholes. I looked up at the sky and said aloud, “I can’t do this anymore.” Near tears, I had to accept that my body was failing me. It was not cooperating with me and some physical demands were far beyond me now. I was tired and sick.
The next day, out of the blue, the newspaper eliminated all of its part-time reporters and I was out on my ear. For the first time in five years, I was back in job search mode. Since then, a couple of jobs have come and gone. Two weeks ago, I began a new editing gig. Thank God, it’s remote work but it still means that I have to work a consecutive six hours daily glued to a computer. I am “signed on” at all times.
And yes, there are remote Zoom meetings. Beforehand, sometimes I have to use my mantra if I'm having a rough day. But mostly, I’ve fought through what my mom used to call “sleepy spells.” So far, so good.
“Pretend Like You Are Okay,” extends to other parts of my life. Those will be explored in Part 2.
What type of blood cancer are you or your loved one diagnosed with?