Featured work at Eugene Sargent
Love Can Cure
Breaking the Silence
I wrote this piece over a few months, starting in October 2012
Still here...Writing about chemotherapy is difficult for me, while I'm undergoing it, because it seems to have shut down my desire/ ability to write. The first dose was easy. I had already become used to having needles stuck in my arms from a previous round of a drug that turned out not to be effective, so it was just a matter of coming to the chemotherapy center for two days in a row and having a few bags of saline with the special drugs mixed in put slowly into my veins. The mix comes with an antihistamine, a steroid and an anti nausea medication, so there was a couple of days coasting after the injection before the effects started to show. I felt a little bit of several of the known side effects, but it wasn't too bad. A vague sense of nausea, fatigue, dull feeling skin, metal taste in my mouth, tingling on the tops of my feet and a sort of fog over my brain. At one point, I thought I might be having a bit of a waking bad dream, but I was so tired I went to sleep and that was that.
My particular treatment goes on a 3 week cycle, so with the first round I went through the first bad week and had a couple of good ones before the second treatment came along. This one was different, everything hit harder. Waking the morning after the premeds wore off, the baby was watching Thomas the Train, and the funny little piano tune started going round and round in my head like the little train was making loops in my brain. For the next week or so, I had to consciously ignore a lot of the thoughts in my head. Something was choosing the most negative ways of seeing things, and I had to be careful not to believe anything I thought.
Luckily, life has simple rhythms to keep one moving. Get up, say good morning to my wife and baby, make some coffee if she hasn't already, pour a cup, sip it, then at 6:45 wake up the older daughter, and things start to move a little faster. Make her lunch, get her to eat a little something, keep pushing to keep things moving along, kiss the wife good bye, load both girls in the van, drop the older one at school, then back home, pack the baby a snack, make sure the diaper bag has what's necessary and take her to day care. Then the urgency is over for the moment, and I can select from the many things that need to be done.
Walking into the studio is a little overwhelming, if I look around at all the accumulated flotsam and jetsam, the stalled projects, the ventures that ground to a halt for lack of time or inspiration, so I try to focus on something or better yet, start drawing something completely new, some idea that has been bumping around in my head. There is a bit of desperation I have been struggling with, the feeling that I have stumbled and my dreams have gone running off without me. So when I start drawing something in my sketchbook that might take hundreds of hours to achieve, I know the futility of it, but I can't give up the chase.
Back at home, I am playing outside with the baby in the autumn sun. She tells me to lay down, and starts pushing on me like she saw the chiropractor do yesterday. It is so cute that I am laughing as the sunlight plays over my closed eyelids injecting bright orange light into my consciousness. A friend drops by, and I can see that he can see the fog in my brain. We marvel at the cute baby together, and he reminds me to be thankful for the beautiful things and the remarkable support network that I am blessed to have. Yes, I'm thankful, but it's good to be reminded. It's just difficult for me to be patient, when so many things seem to place themselves before the things I really want to do. The cancer just seems to be the latest in a long succession of obstacles, and it adds the extra urgency of time maybe being short. And now I have to build a house, a worthy project, indeed, but like looking through binoculars through the wrong end, the dreams seem farther and farther away.
I'm stubborn I guess and maybe with delusions of grandeur. I have always thought I was blessed with a good mind and that was a responsibility to do something good with it. The saying “to those whom much is given, much is expected” comes to mind. But lately, I have to admit, I feel like a bit of a failure, and I am unsure of myself. My wife would quickly admonish me for such thoughts and tell me that being a good father and raising good children should be satisfactory goals, and she would be right in a certain way. But I look around, and there are so many amazing challenges, and now I'm feeling guilty because I don't want to make the raising of the children my all-consuming passion. My theory is that children only need 24/7 attention for a few short years, and soon they are becoming their own little people, experiencing life, observing. I don't necessarily even think smothering, overprotecting is even good for them. When I fantasize about the ideal father I would like to be, it is about a man who is passionate about life, and shares that passion with his children, even to a crazy, goofy extent, not a man who makes the children the center of his existence and has no other apparent reason for living. Patience, patience, patience.
My last dose of the bendamustine was over three weeks ago, and I have had a few bright days. Today the fog is still here, and I feel strange, like I no longer know what normal is. There are new sensations, little pains. The cancer has abated, and the swelling in my lymph nodes has gone down. The scans look good. My oncologist says that my body will be resetting itself in some ways, I feel like I need to help it with my mind, help it to find a new normal that will work for the long haul.
My little family went to see the turning on of the Christmas lights parade at the town square. We had to get the older daughter to her school float for the parade. There was a good crowd packed tight along the parade route, and we all oohed and cheered when the mayor commanded the lights to come on. Then the parade came through led by a big square fronted firetruck, deep red with glittery chrome fittings and stacks of neatly folded firehose, followed by trucks and SUV's pulling trailers decorated by local businesses and organizations and loaded with people waving and throwing candy. I was standing on a small wall with the baby on my shoulders. Everything was pleasant enough, but the thing that I noticed the most was all the exhaust fumes from the vehicles and the generators to power the lights on the floats, and I could not help but think how primitive we still were here in 2012, at a public celebration, standing in a cloud of noxious fumes, the toxic byproduct of the dominant fuel of the day. Maybe my condition has made me more sensitive, in fact I think I have noticed that I am more sensitive to vapors and fumes, but also it is my frustration at not being able to do anything about it when there are so many good ideas and so many things that could be done.
Then I read an article about how Germany is on track to achieve 100% renewable energy, having started working toward it in the seventies, and how they thought it was our idea from when Jimmy Carter first instituted energy awareness. I think about how far back we have slid, choosing, instead an image of wasteful bravado. Someone like me is sad and a bit mystified that efficiency doesn't sell better, but then I think, well, why should it? Why should I be raining on people's parades, telling them not to celebrate their good fortune and the apparent abundance of resources? I feel like a wet blanket sometimes, insisting that we all think about some theoretical future, which may or may not arrive. I mean, how bad would we feel if we had scrimped and saved and deprived ourselves and some planet-killing asteroid came along and made it all a moot point. But then I also see people like a whole bunch of monkeys throwing their bananas around. Does being wasteful make people happy, or is it just a habit we could live without?
Planning for the future and sacrificing for those who will come after is seen by some as advanced behavior, some level higher and more noble than your average slob, but do these people have a bit of a martyr complex? When people really have to adapt, they will adapt, and maybe attempting to preserve our present way of life is just delaying the inevitable out of some sentimental attachment to the way things are and used to be. Aside from seeing people as banana slinging monkeys, I also see them as goats, all trying to push each other out of the feed trough. Goats really are the rudest creatures, watching them push each other around gives one a better appreciation of civil behavior.
My wife and the baby come through the front door after shopping at a small holiday craft fair. The baby is carrying two small brown gift bags with black tissue sticking out. She shouts “Happy Birthday!” and rushes in to show the gifts. I hear behind me my wife saying, “be careful, those are delicate, very delicate,” and I see in slow motion, the baby pulling the tissue and something flying out, smashing on the floor. I was frozen for the moment, helpless to do anything about what was happening before me. I looked down to see the remnants of a clear glass globe with a piece of handcut paper and a small origami crane, I recognized it as the work of a friend of ours. Then I was just trying to keep the baby from hurting herself on the glass, she was saying “it's not broke, it's not broke,” and I said, “Yes, you broke it, it's sharp,” and she started crying. I was just trying to get the glass picked up and get the sweeper and dustpan before she stepped in it. A small piece of the glass stuck in the side of my foot. After I got the mess cleaned up and the shard out of my foot I went to try to console her, crying in the hallway. I said, “It's alright, you didn't do anything wrong, it was an easy mistake to make,” but she would have none of it, and shouted, “Go away, go away.” It really was just such a little thing, but somehow it seemed symbolic of my life, my helplessness, my current state of incompetence for the tasks at hand. A feeling of depression came over me, and I went to bed.
One of the things keeping me awake at night these days is the looming addition to the house project. The paperwork has successfully passed through the city planning office, and we have our permit. We begin laying out the footprint on the ground soon, locating plumbing, digging trenches, pouring footings... and that's just the very beginning. I worry about getting stalled, rain soaking the half framed structure. I've lost confidence in my ability to finish projects, and I'm terrified of running out of energy and funds.
One thing that is funny is that most of the problems I face have nothing to do with the cancer at all. Most of my problems are mundane ordinary things that I'm sure people are dealing with every day. When I think about myself complaining about lack of inspiration as I walk into the studio, I realize that I am sort of lucky and spoiled, because most people are forging on through life, inspiration or no. Since we moved to town, and the studio is seventeen miles due west, I have the basic problem of physical separation, but also with the building project coming on, I will be doing less and less of my own creative work in the coming months. That's one thing - the creative space and state of mind, notoriously elusive and frustrating, even if one can find the time. The other thing is that in town, I feel out of my element, not quite suited for carrying out daily tasks. My wife underscores this by following behind me and redoing things I do, telling me how to do simple things and even suggesting I do something as I am in the process of doing it. I know she means well, and I am maybe a wounded bird, needing some help, but it is funny how the best intentions can add to the problem of feeling incompetent and a failure. For the most part, I have convinced myself that I have no right to complain, so I don't say anything, which is another way the problem is compounded.
My father in law Tal is shutting down a his coin operated filtered water dispenser, which means, by the terms of his lease, tearing down a small octagonal brick building. He had stripped out all the useful things inside, and I planned the demolition. The quickest method I could think of was to rip it apart with my old David Brown tractor. This meant I had to get the loader hooked back on the beat up old machine. It had been sinking down into the dirt for a couple of years, as it had been taken off because the tractor is much nicer to mow with without the loader, which swings way out in front in turns, and it's easy to hit things and scrape up trees, etc. So, first I had to pick the loader up, which I did half way with the hay spear on the 3 point hitch, propping it up with a post, quickly cut to the right size. Then I had to swing it around which I did by stabbing the hay spear into one of the main pivot holes and wiggling it by going forward and reverse until I had it lined up where I could drive into it. The hydraulic connectors had rusted and needed penetrating oil and cleaning and hammering. I finally got them connected, and with the hydraulics moving, I got the main rams pinned, and from there with a little hammering and crowbarring, it didn't take long to get the main pins in.
It sounds funny, but a little tractoring made me feel better. Wrestling with things that weigh a lot more than you requires a sort of creativity. Then, we loaded the tractor on the trailer and proceeded to the job at hand. After pushing down the posts made to keep cars from running to the building, I went around the building and lifted the roof from the eaves to loosen it. Then I had Tal position the trailer on the opposite side of me, and I proceeded to push the roof off the building onto the trailer. In the process, I hit some of the brick wall, and it collapsed easily. I used the loader to mash it all down while letting the tractor climb up it to get more reach. At first, I thought I had made a big mistake, as the roof and brick jumble was way bigger than the trailer, but I moved the tractor around and pushed and mashed, and with Tal and Lee pulling and making a few cuts with the chain saw, we had about half of the building on the trailer, strapped down in a pile that probably wouldn't get us stopped by the police. The second load was mostly a large pile of bricks, which loaded the trailer down to capacity, and left us with tired backs after the last bit of rubble was finally swept from the trailer.
Completion of a small project, even if it was a demolition, made me feel better, and as I used the back hoe to tear up the back yard into a maze of trenches for footings and pipes, I started to look forward to the next stages of the project.
Then came Christmas, which was always a time for great joy in my childhood, but as an adult Christmas shopping or the idea of Christmas shopping sort of paralyzes me. This is partially due to my stubborn, creative nature I'm sure, and my best Christmases have been when I made a few gifts for a few people or maybe just one gift for one person and bought a few things, usually at flea markets, for a few others. I usually don't get the “Christmas spirit” until a the last week, and the things I make are unpredictable and difficult to manage, sometimes not working out at all. This year, I could not get to the studio, even though I had a few really nice ideas I would have liked to try. The paralysis was unusually bad, ending up as a faint sense of guilt that I could not shake, even though I knew that everything was really fine. My wife and parents in law had gone all out, and my sparse Christmas shopping was barely noticed. Also, having children of our own now, I realize that the tradition is kept alive vicariously through them, and the joy they experience is almost as good as having it oneself.