I’m back to work this month, part-time, at Portland WebWorks. I had to quit first, then return as an independent contractor. I receive no benefits, as that requires full-time employment, but I can work eight to 10 hours per week and earn a decent hourly wage.
I was rusty, after seven months away from software development. But I’m recovering my skills and resuming the motions, like riding a bike. I feel like I’m earning my pay, and that feels good.
I’d like to ramp up to “half-time”. The full 40 seems a punishing regimen. I remember, in the first few moments after the discovery of my “mass” (before it was promoted to a tumor), reasoning “I’m retired now.” Even then I felt a touch of relief within the horror. Terminally ill, I ought to enjoy my own little “make-a-wish” while I can, no?
On Jan. 18, I applied for Social Security benefits. I’d like to say I disapproved and halted the process with a feisty “fuck off, I’m not disabled”. But I felt pressured to seek all available benefits, for the sake of my family. Despite my pride and sense of fairness, the instinct to “get mine” is overwhelming when I consider my family — as if I have no right to deny them this opportunity. Bring home the meat, daddy dog.
Susan at Genex Services out of Wayne, PA helped me complete the application online. (Their motto is “solving the cost/care equation”).
During the last 14 months, unable to work because of illnesses, injuries or conditions that have lasted or are expected to last at least 12 months or can be expected to result in death: Yes
True, by any reasonable measure.
Worked or will work for an employer in 2012: No.
True, technically.
Self-employed in 2012: Yes.
2012 self-employment type of business: Software development
2012 self-employment net income greater than $400: Yes
True!
Total of all wages and tips including net income from self-employment in 2012: $12,960
That’s a quick back-of-the-envelope projection. It could easily be more, but doesn’t account for expenses.
Illnesses, injuries, conditions that limit ability to work: Gliosarcoma
Illnesses, injuries, conditions related to work: No
True, true.
Now able to work: No
I feel like Bill Clinton. It depends on the meaning of the terms “now”, “able” and “work”. Susan tried to explain why, technically, “No” is the right answer. It has something to do with earning at least $1,000 per month over a period of several consecutive months. It has a lot to do with Genex’s mission to relieve UNUM (Portland WebWorks’ disability insurer) of its own obligations. What is the right answer? I could be dead in six months, or I could take home 30 grand. Who knows?
My little brother Ben is in Afghanistan.
He’s a second lieutenant in the 182nd Engineer Company of the Massachusetts National Guard. He just deployed this month to a base near Kandahar.
I saw him commissioned in a ceremony at Faneuil Hall in 2010, wearing his crisp blue uniform. (He skipped his own college graduation to be there). I saw him deployed in a ceremony at a packed, dingy auditorium in Newburyport, in November, wearing his faded camouflage. He was calm, even light-hearted, unburdened by nostalgia. They traveled to Texas and New Mexico for training, then overseas.
They’re combat engineers, or “sappers”, inventors of the fortified siege, and trench warfare. They blow up stuff. Now in Afghanistan they’re seeking and destroying the Taliban’s hidden bombs (“IEDs”, improvised explosive devices).
Ben was born in 1988, when I was 13. It seemed the world and I were growing up together: glasnost, the falling Wall, the “peace dividend”. Wars in Panama and Iraq were quick and clean.
When terrorists struck American soil in 2001, Ben was 13. He grew up in the shadow of the terrorist threat: Vigilance, steely resolve and duty to country. We’ve been fighting in Afghanistan ever since.
We are the products of our times, more than of our genes. Perhaps that’s why, though I appreciate Ben’s many qualities, I don’t understand him. He’s in Afghanistan, doing his job (he’s far from preachy about his purposes) while I’m quoting Ben Franklin on “liberty over safety”, quite safely at home. ([10. “They who can give up essential liberty to obtain a little temporary safety, deserve neither liberty nor safety.” Attributed to Benjamin Franklin.])
When I compared my illness to a war, the diagnosis of terminal cancer was still very fresh. I savored each day desperately. Now seven months later, the mortal threat is abstract. The growing normalcy of my new life obscures it, and I no longer cling to the passing moments. I know I can’t hold them.
“Ours is the courage, the resolve, to witness the events that carry us into history.” ([20. My June 8, 2011 post “Courage“]) I’m still here, still writing, still pondering my supposedly premature death. Its “nobility” seems to have been overstated. I’m just doing my job.
I am now in the IV treatment room at MCCM ([30. Maine Center for Cancer Medicine]) in Scarborough with a tiny catheter in my left arm, typing on the iPad with my right hand.
I’m thinking of the scene in 50/50 where the guy with cancer is getting his chemotherapy. This is not like that. We are not passing joints. Actually —
“Date of birth?”
“February ninth, nineteen seventy-five.” ([40. This is a short piece of security theater we perform, as a matter of policy, at any and every visit to a MaineHealth facility.])
Avastin dripping now, clear and cool.
Actually, I rarely see the same patient twice in this treatment room. There are usually ten or fifteen people lounging in these grey vinyl recliners, plugged into a drip. (I’m in chair 7 today). Of course, the room is always quietly buzzing with a half-dozen nurses, nothing at all like the “private club” atmosphere in the movie.
I am relatively young for a cancer patient. But Anna Kendrick has no chance with me. Sorry, Anna, I’m taken!
Proof the recent tripling of my Paxil dose has made me “happy”: I am regularly appending exclamation points to my texts.
Hello!
How can I describe the feeling? Joy? Satisfaction? No, none of these. It’s a feeling of anticipation. Where before I might have worn the latest New Yorker like a blanket, reading for hours, silently involved, yet inevitably disgusted — now it’s “ON TO THE NEXT THING!” Why does everything have to be so damn interesting all of a sudden?
I’m only half kidding.
Years of depression, and anti-depressent medications of middling effectiveness, gave me a realistic (pessimistic, really) outlook and a reserved (er, socially insecure) personality. It was obvious to me that happiness was delusional. ([50. There’s a poster at the Community Counseling Center in Portland that offers ridiculously simple but refreshing advice for living one’s life, in the form of a flow chart. It asks “Are you happy?” and then, if your answer is “No”, “Do you want to be happy?” That is the question for me. (The result of “No”, also the result of “Are you happy?” -> “Yes”, is “Keep doing what you’re doing.”)])
Why wouldn’t I want to be happy? Something’s not right about it. It cloys like a friendly dog. “Life is Good” apparel, with its care-free smiley doodle, always puzzled and bothered me. ([60. http://www.lifeisgood.com]) Life is good? What!? I regarded these folks as misled. Then today I said it. I actually said (to myself) “life is good.”
Shoes by Nike. Wristwatch by Timex. Mood by GlaxoSmithKline. ([65. GlaxoSmithKline is the current name of the company that developed Paxil, which is generically known as Paroxetine.])
I have allowed myself to pretend I don’t have cancer. I don’t deny having cancer, nor skip treatments. I’m getting on with life. The burden of overwhelming odds shall be dismissed while I’m relatively healthy. That has been my strategy for many months.
Sometimes I doubt the wisdom of ignoring my inseverable bond to this illness. I walk the dog, then the dog walks me. Will I be ready?
Recently I heard a fellow patient’s brain tumor was found to be growing again. It scared me. Is it a call to action? Shall I make a project of preempting my regret? What will I wish I had done? I’ve written here that I would welcome death. ([70. My Nov. 19, 2011 post “Decline“]) Yet life can have a way of spinning hope from thin air. Is that resolve or self-deception?
Depression can be a terrible, paralyzing illness. Might a comfort be rendered from the dark mood, when darkness falls?
NOTES: