How 'Wasting Time' Has Actually Been a Lifesaver for Me With Chronic Illness


It occurs to me that this – mid-fall, with its apples and pumpkin farms and Seattle’s brief flare of sunlight and blue skies before the permanent drizzle sets in – is about the time of year I was diagnosed with MS last year after a long hospitalization with bizarre symptoms and a trek around the city to various neurologists to get answers. They recommended a drug to treat the MS that I ended up not being able to tolerate. Now, this year, after a similar flurry of odd symptoms and hospitalizations, they’ve recommended another, and it just showed up on my doorstep. Ah, the cycle of seasons. Pumpkin spice lattes and another terrifying and fairly ineffective drug to research.

Then I was reminded that about six months before that MS diagnosis, I went to the ER with stomach flu, and after a few tests, the ER doctor came in and told me that I had a dozen tumors in my liver that looked like metastasized cancer. I had to trek around the city to various oncologists and liver specialists. First, I was given six months to live by several doctors. That felt pretty serious. I signed the mortgage papers on my new house the day I was given six months to live. One of the ways I tried to express my grief and my struggle was to immediately buy a kitten. I was gambling on optimism. I took a lot of pictures of trees. These trees, they might live longer than me. They would still be beautiful after I was gone.

Then, in the journey around to see different specialists and take different, expensive, unpleasant tests, I was told I probably had a very rare cancer called carcinoid – which might kill you eventually, but much slower than six months – and needed to start chemo right away. I scheduled the chemo, then promptly caught severe pneumonia. My medical team and I decided to postpone the chemo. Then I met with several other specialists who thought my tumors that looked like cancer might be benign and that instead of chemo they would “keep an eye on the tumors for changes.” I am due for another MRI scan of my liver next month, but so far the tumors have not grown or proliferated, which may mean they’re not cancer at all. If we had not procrastinated, I would not have had time to get another opinion. Sometimes waiting can save your life, or at least save you from some very expensive, unnecessary treatments. The medical system isn’t evil, but it’s often slow when it should be fast, and rushes you when it should take more time to consider your case.

I was thinking about the beautiful sky yesterday, walking among the trees. My husband making the most wonderful meals imaginable (last night – duck tacos) as I regain my ability to walk, eat solid food, etc, from last month’s “brain spell” (technically, an MS flare) that landed me in the hospital. If I act like the most important thing is to get out and get the most beauty out of my time in the world, this story may explain why. Why I’m in a hurry to write poems and publish them. Why I may be inclined to put the brakes on doing anything unnecessary with my time. I’m protective of the limited time. I’m nervous about rushing to take toxic treatments for problems doctors may or may not be sure I have. I don’t want to waste any time on earth. Yes, I care less about waking up, doing what I’m supposed to do most days, and care more about spending time with the people I love and with trees and water and animals and other healing things. I’m still ambitious – I’ve always been ambitious – but for different things. Still spiritual – but with a slightly different bent.

I’m ambitious to get another book of poetry out before I die. I want to share the experiences of chronic illness but in a way that’s universal – to communicate about that special fragility all human bodies have, that most of us spend most of our lives ignoring, or distracting ourselves from. I’m ambitious that writing about my own horrible experiences might help others. I’m ambitious about having more say in my life and in the life of my planet, about using my voice to make change, speaking frankly about problems and justice. Maybe become a little less careful, a little more outspoken, a little more political.

Many people see me and might not even notice anything wrong with me. Unless you’ve got X-ray vision, you can’t see the tumors in my liver, and you might notice I carry a cane, but you won’t be able to see the lesions that are blossoming across my brain, bringing with them violent nausea, vertigo, weakness, slower and more deliberate speech, reading and calculating skills. My brain is busy all the time trying to take in and process stimuli, and gets overwhelmed easily (movies aren’t much fun anymore, as a result, but quiet things like museums are still OK). I can still do a lot of what makes my life meaningful. And I want to do as much of that and spend as little time as possible doing other things – sitting in doctors’ offices getting test after test, for instance, or spending time doing grant paperwork or standing in line at the DMV. Of course I still have to do some of those things sometimes – I still spend way more time with doctors than I’d like – but I try to balance that with trips to the ocean, to the mountains, to gardens and parks, noticing the beauty around me, celebrating the people I love, even spending time with the cat (that was a kitten a year ago) curled up on my chest listening to music and watching the birds outside my window. I’m still taking pictures of trees.

Things that other people might consider a “waste of time” are, to me, the reasons I am giving my body and mind to try to fight another day. It might take all of my energy for a 24-hour period to go out to coffee with a friend or drive an hour for a visit to the seaside for two or three hours, but that energy output will be worth it. Even the time I spend recuperating – some days when it’s hard to even get up to shower – I can listen to audiobooks or do some of my MS exercises or physical therapy exercises and get some of the towering inferno of paperwork off my desk. When things slow me down, now I recognize it as an opportunity to take a second to think about possible therapies, research new MS treatments, maybe schedule an appointment with another specialist who has different ideas about how to treat my (admittedly) complicated set of health problems. And also to measure my time – by how much joy I get, how much meaning I get. Sometimes, slowing down might save you from rushing into something you might regret.

Image Credits: Jeannine Gailey

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