Friday, January 29, 2010

The whole cancer thing

When the kids were little, right after I left their dad, they belonged to various ball clubs, Little League and soccer mostly. When my ex wasn't actively trying to mess with me on the sidelines, I'd sit with the other mothers and watch the kids play. Mostly we just shared mom things, but as we got to know each other, confidences slipped out. One in particular was from a woman who lived not too far from me. She had a son the same age as College was at the time -- so six I think. She had a car too, and would sometimes give us a ride if the game was too far away.

The confidence came after we dropped her car off at the garage one afternoon. Apparently she'd had a brain tumor removed about a year before, her husband had left her for a younger woman without brain tumors and was a real ass about spending time with their bewildered son. And now she was experiencing blurred vision and pain in the general location where the tumor had been removed. At the time, nothing was wrong with Jesse. I was sympathetic, and offered to help out when she needed it. I think she just felt relieved to talk about it to another adult. It probably helped to tell on her abandoning jerk husband too.

She never really did move past that moment of revelation, never asked me for anything. I was kind of relieved, not realizing then that most people who offer help don't really mean it, and she was probably assuming I was one of them. I would have done whatever I could. Past the point of it being a pain to accomplish.

I thought of her when Jesse relapsed. I didn't want to be someone whose life was ruined by cancer. I didn't want Jesse to be defined by cancer. It didn't quite sink it that I had no choice. That he had no choice. That it was all headed down the sinkhole. I didn't want to be standing on a street corner in Manhattan, deluging someone I barely knew with the horrible reality of living with cancer. Even now I'd rather use another word.

When I see those ridiculous tv ads for cancer clinics that show happy cancer patients who write defiant letters to cancer, I seize up inside. It's all such a phony Disneyesque prettification of the slow motion horror that has become this person's life. The prostitution of their disease for the profits of the clinic that's making money by not finding a cure, just a very expensive way to postpone death.

Sunday, January 17, 2010

Yesterday and today.

Of all the days between Jesse's first symptoms of relapse, and his last, yesterday and today are the easiest to look back on. The illness was still a nuisance. The hospital doctors were at turns negligent and annoyingly overreactive. He gently taunted the clowns and finger painting do gooders that showed up at his room, for trying to apply their stereotypes to his undeniable individuality. Even the PICC line was just an inconvenience. They didn't make him wear hospital clothes, so hospital-appropriate fashion and laundry was a chance to reconnect with me. He wasn't interested in shoulder rubs from me, but the girlfriends, as it should be in the natural order of life.

People say death is part of life, a natural outcome of life, a necessity for life. Right now, though I see the point of life as a struggle with death, just as all good drama is a struggle against its inevitable last scene. We love most those stories that fight to the end against fate, the ones that you wish hadn't ended but went on and on. The ones that still live in you when you walk out of the theater, that come unbidden to mind at times in your life long after you can even remember the date of the performance.

Of course there are stories that do continue on, some spectacularly so. Third acts can be the launch into greatness. Losing someone who is ready to go after a full life, while sad, isn't tragic, unless you aren't yet skilled in detaching from misperception that we are eternal. Think of it though. If you live to be 100, you will live to see everyone you know best, your childhood family and friends, to see them all die before you. How much more could you need to prepare yourself to say goodbye? The world exhausts our spirit and puts us to rest.

It was the end of Jesse's first act. We all, on this day 3 years ago, were backstage with him, keeping his spirits high, running his errands, like an eager entourage. We knew his second act would be as astonishing as all that had come before, and we would have done anything to make that curtain rise.

I wonder if my attachment to the suffering of Haiti is somehow related to my experience of losing Jesse. This is familiar, the sense that something must be done, should have been done sooner, something unprecedented, overdue, but morally unreachable unless somehow the world were smacked awake by disaster.

Haiti has never been a country you could put aside mentally and assume things were going well if you didn't hear about it. Like its sister, New Orleans and southern LA, its people came from the struggle between contest and commerce. Spanish, French, African, slave and master, free people of color, social strata created by skin color, income, language, religion, food, dance, blood. We trafficked with each other for centuries.

All our bills come due. When I saw that teams from Iceland, China, Norway, the US, France, Belgium, my God, everywhere, were working together to pull people out of the rubble, to get them water, food, safety, to usher Haiti away from the disastrous curtain drop, I felt something urgent move in me. Haiti had almost nowhere left to fall, unlike New Orleans, unlike Jesse. So the ground opened up and created an unbidden hell. What is it in me that wants to see Haiti, not just saved, but healed? To make this unspeakable into a new and better world?

A friend I met in Bali told me something recently that pissed me off a bit. She's young and beautiful and strong. She willingly lets her skin tan and refuses to dye the two strands of grey in her long, glossy black hair. We were skyping and she saw I was upset about the anniversary of Jesse's loss and she said, shower the flowers that live.

I think what made me angry is that she's right. I can better serve my love for Jesse by sublimating it into service for those I love. It's just that that definition-- those I love -- has itself begun to change shape. The people encompassed by the first word, the self encompassed in the second, and the entire concept of the third. I'm not sure where it's going. I just feel I'm supposed to be here.

Wednesday, January 13, 2010


People often ask me about antidepressants once they learn I've taken them. I've been on a few, actually, and one thing I've noticed is that not only do they affect different people differently, but they affect me differently in the times I've taken them. The first time I was on prozac (for PTSD) it worked extremely well. The one memorable side effect, by the way, was extremely long and intense orgasms. Go figure? I was on it for about six months, during regular talk-therapy, then tapered off as the symptoms disappeared. Within about a year I was finished with therapy as well. After Jesse died, I had no problem asking the new psychiatrist to prescribe it again, but my response was totally different. It didn't really help. I felt a little better, but the insomnia was wearing me out. I had no appetite, and problems thinking clearly. Instead of switching me to something else, the new psychiatrist added amytriptaline (elavil), trazadone, and gabapentin (neurontin). I gained 20 pounds. I couldn't drink at all, not even a beer. My mouth was dry all the time. I lost interest in sex. On the plus side, the neurontin made my sensitive skin invulnerable. I could wear a wool sweater without an undershirt and think it was cotton. At one point the stress caused one (yes only one) shingle. I didn't even feel it, although shingles are supposed to be painful for months. Hope that means I'm done with that for the next 40 years.

At any rate, I began asking to go off the antidepressants after about six months (just like the previous psychiatrist's protocol), but the new doctor would not let me. I had to threaten to go off them without her help to get her to tell me how to ladder down. It wasn't until 18 months that I finally got off all of them. I fought to lose five of the 20 pounds I'd gained, and I'm still uncomfortably big-- and unable to lose it without getting sick from lack of eating. I've never had a problem like this in my life.

This fall, I ended up on zoloft, but not for depression. It's off-label prophylaxis for migraine. It did lift my mood, and doesn't seem to negatively affect my sleep, but it does cause some nausea. It helped me to restart my teaching sideline, and it's been a huge boon in social situations. Growing up shy and introverted, I have had to learn as an adult how to be a social person, so group activities can stress me out to the point of exhaustion. Gearing up to do a lecture or lead a workshop took months of practice and anti-anxiety strategies. With zoloft, negative emotional states feel, well, padded. Buffered. Kind of like neurontin for my inner skin. It's helped a little with the migraines, but mostly it's helped me suffer less, and over shorter periods, from the loss of Jesse, and allowed me a couple of moments of actual everyday happiness. Not euphoria, mind you, I don't think I'll be there for a while. But that mundane joy in being alive. I'd forgotten what that was for a long, long time.

Monday, January 4, 2010

I can hardly bear to look at him

The sad faced boy in the photos. My heart nearly breaks just thinking of him. He is never smiling. Sometimes he looks off while others smile, as if he's seeing something awful, just off frame. Others he looks dead on into the lens, searching, longing. I know what he did was awful. I would have jumped him too. I don't believe he should be freed. But that's not everything. Who could have saved him? What if we did things differently now? Is he a bottomless pit of need, wishing to die for something, anything to give meaning to his misery? He was a child who was given everything and nothing. The void wasn't filled with hate, I don't believe that. Anymore than it was filled by anything else that was thrown in it. He was committing suicide. They just used that fact for their potential benefit.