Why I Bother

April 21, 2010 at 11:27 pm (Uncategorized)

I’m just now clawing my way back to the surface of life after the round of chemo I got a week ago. I feel like I still have dirt under my nails and the smell of the grave on me from this now-familiar journey.

I’ve traveled this route so many times you’d think that after two years I’d no longer be shocked and appalled at how arduous it is to recover from the blast of chemo I’ve been getting every other week. But it has never failed to catch me off guard, no matter how much I’ve tried to prepare for the exhaustion and sickness that the chemo invariably triggers. Usually, though, I’ve been able to hold onto some type of faith that I’ll make it through the worst parts of the chemo cycle. As a rule, I forget how awful chemo is every time, but I don’t forget that I can survive it.

This past week was different. During what will be the last dose of chemo I get at this dose—unless my sarcoidosis expert presents astounding evidence to convince me otherwise when I see him on Friday—I lost hope that I would emerge intact. I’m usually a strong finisher. I could gut out the last few miles of a long bike race, no matter how much my legs and lungs burned. I finish writing projects on deadline, even if I have to stay up for consecutive days. But I did not finish this part of my chemo odyssey with similar panache.

I did not want to return to my life after last week’s dose. When I wasn’t asleep, I was thinking of all the tasks I didn’t want to face. My instinct was to renege on every promise I’ve made. Screw my pledge to write regularly for this blog—and with it my deadline of June 1 to have book chapters sent to my potential literary agent. I also longed to be left alone. I shuddered when Jay lay down next to me in bed. I hated the sound of my son’s voice. When Andrew came into my room to check on me, I could barely summon responses to his questions or his tales. It makes me feel sick and small to admit this. But that is how I was—sick and small inside myself.

My overwhelming sense of futility this past week went far beyond an ordinary case of what I call “the fuck its” (TFI, for future, less profane references). I’ve battled TFI aplenty—even before I had sarcoidosis and chemotherapy to contend with. When afflicted with TFI, I avoid work and piddle around on the Internet or undertake obscure cleaning or organizational projects. Instead of keeping my goals in mind, I’ll decide to edge away from them. With TFI, I’ll snack on chocolate instead of sticking to my diet; I’ll let Andrew watch a Scooby-Doo episode nine times in a row rather than summon up the energy to read him a book.

I’ve certainly had to face TFI much more since I started chemotherapy. It’s challenging to motivate yourself to write an essay or bake cookies with your kid when you’re so tired you’d give an arm for an extra day in bed. I’ve tried not to be too hard on myself because I struggle so often just to summon the wherewithal to rise from my bed and shower. I remind myself that I’m limited because of my circumstances. Like the rest of the universe, I am governed by forces of inertia and entropy. But I’m no math whiz. The highest and truest calculation I’ve devised is a simple sort of equation. Chemo=fatigue=less motivation=normal. If I relinquish this, I run into trouble. A particularly unhelpful revision of my fundamental equation is chemo=fatigue=less motivation=I’m worthless=let me enumerate the ways I am worthless=wow, I’m suddenly a lot more tired now.

What I felt last week wasn’t the silly procrastination of TFI. Nor was it my habitual crash into self-hatred. It was a terrible renunciation of all I hold dear. I was laid lower—physically, spiritually, and totally—than I ever imagined possible. At first, the chemo’s after-effects weren’t that unusual. I slept for three days straight, as I usually do. And, as always, I didn’t remember my dreams. I had my typical, creepy sense that these bottomless sleeps are warm-ups for death, that I was getting a sixteen hour preview of the oblivion that awaits me. I tried at first to shake this off, as I do every other week, to jostle myself into enough alertness that I could tell myself that sleepiness is a side-effect not a portent. But I couldn’t. More profoundly, I wouldn’t. I wanted instead to drop like a stone into the depthless waters of that sleep. Rather than reason with myself, I nearly reveled in the idea that I had stepped into a shadow land of death-in-life. The sarcoidosis and the chemo have eroded me to the point of irrelevance, I thought. It really didn’t matter whether I ever got out of bed. I was already disappearing from the house, from Jay’s life, from Andrew’s life. It would be easier for them—and for me and for everyone—just to finish this disappearing act once and for all. What was the point of lurching back into life, of crawling out of that loamy pit chemo and disease had dumped me into? Yes, I could re-insert myself into the empty space I’d left, like my foot instinctively finding its imprint in my shoe. But I could also choose to vacate that space. Let Jay give my shoes to Goodwill. Let him and Andrew move on and move forward. And let me get back to sleep.

I wasn’t having what mental-health professionals call “suicidal ideations.” It wasn’t as if I were plotting to swallow a bottle of pills. I was beyond and below all that. It almost cheapens my profound sense of wanting nothingness to toss psychiatric terminology at it. I wasn’t capable of planning my end. Instead, I thought I could bring it about—I could slip into never-ending oblivion—with nothing more than a semi-conscious thought. I could turn in my will, like an employee handing over my ID badge and office keys when moving on.

I’m still here, though. Not only did I stay alive, but I am sitting upright and writing. I have a monstrously long list of tasks to accomplish before I leave tomorrow with Jay and Andrew for Ohio. The washing machine is gurgling with a load of clothes I’ll need to fold and pack. I have compiled a list of questions for the sarcoidosis expert. I need his advice on what treatment plan I’ll follow for the next six months. I want to know about a clinical trial of a new drug that is showing good results in treating neurosarcoidosis. I’m also persisting in my search to find a new doctor who can advise my local physician more regularly than the Ohio expert. I ate a healthy lunch of brown rice, roasted vegetables, and a mixed berry smoothie that followed the guidelines of an anti-inflammatory (and hopefully sarcoidosis-busting) diet. I had a cup of tea with my friend Martha, and we talked about writing our books. I have set a deadline of June 1 for getting material to a potential agent. I even practiced the next song in my piano book when I needed to take a break.

What happened? How did I traverse from wanting to stop existing to living with as much energy as I can? For the sake of producing a tidy and meaningful essay—for the sake of what it would say about me, as a human being—I wish I could report that Andrew or Jay brought about an epiphany that made me want to go on fighting this damn disease and squeezing what I can from my limited life. But that didn’t happen. If anything, I’ve found my obligations to my son and husband nearly burdensome this week. It’s hard enough to get myself out of bed, and harder still when Andrew wants to spend every minute after school with me and Jay looks as tired as I feel from his week of solo-parenting while I suffered from chemo. I also can’t claim that friendship and kindness have gotten me out of the chemo pit. It helped me feel less alone to get e-mails from Martha and Molly during the week, to have Barb spontaneously volunteer to care for our cat when we’re gone, to have both my mother and Jay’s leave sweet and encouraging messages.

But I think I survived what I plan to be my last chemo week by nothing more romantic or soulful than naked stubbornness. I said I was going to make it through this round of chemo, so damn it, I will. I said I was going to post to this blog, so I will. I said I was going to beat this disease, so I will. I said I would write a book about my experiences, so I will. I said I would stay involved in Andrew’s life, so I will. I said I won’t let disease destroy my marriage, so I won’t. There is great power in habits. However much I chide myself for TFI, for gaining so much weight, for having such a hard time with chemo, I haven’t given myself over to the nullity of either self-loathing or disease. I haven’t finished my book, but I haven’t let go of it, either. I haven’t posted here as much as I’d like, but I haven’t thrown in the towel. I haven’t been kindergarten Mom of the year, but I haven’t stopped reading and writing with Andrew. The force of all the living I have made myself do—when I wanted nothing more than to give up—was strong enough to pull me back from the edge. It’s almost mind-boggling that every-day routines are what saved my soul last week. The fact that I’ve gotten into the habit of writing for this blog, that I made a commitment to it, got me thinking about what I could write for the next entry. That thinking pulled me out of the abyss. The idea for this essay propelled me out of bed this morning.

It’s so simple, and yet it is not—this process of making an existence on the precipice. Do what I have to do, what I want to do, what I planned to do, and what I’m already doing. That is my formula—my true equation.

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