Kirsten’s mom and dad are up here all the time working on our house and taking Kirsten to appointments or taking Rowen to school. Friends take me out for beers. Lisa tells me that she has been talking to lots of people at work who want to help in some way.
And Carol Bell (which is not a pseudonym) coordinates this whole thing at our church where people come to our house every week to clean, and we have a list of people to call in the middle of the night in an emergency. I mean, people come to our house every Saturday and clean our toilet just because they want so much to be doing something for us.
It is very difficult under such circumstances to maintain the idea that God is not working in the world. When we are in our time of need, we are suddenly surrounded by love and we can’t forget even for a day how many people care about us.
In one of those coincidences that also sometimes makes me faithful, somebody at church mentions by way of saying something else, that Saint Theresa of Avila said, “God has no hands but our hands.” If that’s true, what a stupid ingrate I’ve been to suggest that God is not working in the world.
A Tough Time for Him Too
As I said at the beginning, husbands usually get a sentence or two in the cancer literature. There is a support group at the hospital, but I frankly feel like I’d want to throttle anybody who was fifty and worried about losing their wife. I know that’s uncharitable, but given what they are telling us now, it will be a miracle if Kirsten lives to be fifty. I believe in this miracle–I have to. But I am also keenly aware of the odds. So I’d kind of want to slap these guys and tell them to shut the fuck up and be happy about the 18 extra years they got of having a wife without cancer that I will never have. Assholes.
Plus, really, the idea of trying to carve out time to sit around and cry with some old men just stresses me out more. Where exactly is the time supposed to come from?
So here is what “a tough time for him” means to me now. I am typing this at 5:43 a.m. I got up at 5:23 a.m. I went to bed at 10:07 p.m. I then woke up at 2:36 p.m. This is pretty good. For the last week I have been waking up every two hours, so the fact that I got four and a half is pretty spectacular. I lie awake for an indeterminate amount of time. This is not really surprising or unusual. I do have a few things on my mind. After lying awake for some time (half an hour? An hour? I studiously avoid looking at the clock when this is going on), I fall back asleep. At 4:03 Rowen is screaming that she has to pee. She is not yet four, so this means that I have to get up and take her to the bathroom while she cries and is crabby about being awake. She yells that her pee won’t stop coming, and it is pretty spectacular–it lasts for about a full minute, and I think we are very lucky that she was able to hold it. And then she yells that she doesn’t want to wipe, and then she yells at me for wiping the wrong way. She goes back to sleep. I, of course, lie awake for an indeterminate amount of time.
At 5:13, she screams. “I’m scared! I’m scared!” Kirsten, half asleep, says, “she’s peeing.”
“No way,” I reply, “she just peed a river about an hour ago!”
“Well, go see what’s wrong!” Kirsten says in an annoyed voice. So I stumble out of bed again, and into Rowen’s room. She tells me that she’s afraid of monsters. I give her a hug and tell her there are no monsters. She says that she needs to sleep somewhere else. Three guesses where that is.
I go back to bed and tell Kirsten that Rowen wants to sleep with us. Right after this, Rowen starts yelling about how she wants to sleep with us. People who are willing to yell to get their way in the middle of the night usually get their way so everybody can sleep. At least that’s the case in this house. I mean, she would yell and cry for an hour, or we can just let her in the bed and at least two of us can get back to sleep. So that’s what happens. Rowen climbs into bed at 5:23. I just get up, because I have to be up at 6:00 anyway, and I know I won’t get back to sleep. So I sit here while Kirsten and Rowen sleep. They will both get right back to sleep and probably sleep until at least 7:00.
I will leave the house at 6:45. I will be expected to be patient, civil, and competent with teenagers at 7:30. I also have to make a presentation to my department today at 8:30.
So I feel petulant and resentful. I have to take care of Kirsten because, you know, well, she has cancer, and I have to take care of Rowen because, you know, well, she’s not quite four years old, and that all makes sense, but who’s taking care of me? Who cares that I got less than five hours of sleep and I have to go work a full day? Who gives me a hug when I feel scared in the middle of the night? I can’t even tell anybody I feel scared because it’s my job to be positive.
So I will go and put in a nine-hour day on five hours of sleep. During this time I will worry constantly about whether Kirsten is okay and whether she can reach me if she needs to. I will probably call home to check in two or three times. Did I mention that I also need to be competent at my job?
The really great part about all this is that I also feel guilty about feeling petulant and resentful. I am not four and I don’t have cancer.
It’s a tough time for him too.
The Troll. Again.
So I am getting on the subway to pick Rowen up at preschool one day, and the car is crowded, but I do see an empty seat, so I start to make for it when I realize it is right next to Mrs. Troll. I turn around and decide to stand. I find my heart pumping and my fists clenching as I imagine all the great stuff I could say to her if she started with me. I am surprised to find how angry I still am about everything that happened with them. When it gets to be Mrs. Troll’s stop, she gets up and has to pass within about an inch of me. I know she sees me because she kind of does a little stutter-step but then keeps walking out smoothly. We used to see each other on the subway from time to time when we were locked in battle over Rowen walking, and we got pretty good at ignoring each other. You know, writing it down and looking at it, it looks completely absurd. I really can’t believe I spent three years of my life trying to work out a conflict with the kind of people who think their rights are being violated by a kid walking. I kind of regret that I didn’t smile or blow her a kiss, but what can you do.
I go to pick up Rowen and I meet Kirsten there. I am still practically shaking with anger. I eventually figure out why I am so angry. It’s because the script didn’t go the way I planned. We were supposed to leave our old house and move and be happy, leaving the Troll to stew in his own juices of hate and resentment. And what happened was we moved and were happy and then found out that Kirsten has a potentially fatal illness. And I’m the one who’s hateful and resentful. How is it that we, who tried to seek a peaceful solution to our conflict, who tried to accommodate their lunacy by buying rugs, we who are not assholes (well, at least Kirsten’s not), are suffering, while they are not?
And then I think, well, would I want to be him? Would I, even now, trade places with him? No way. Cobbling together a living doing whatever folk singers do to make money, he mostly sits in a dark room in his basement and makes angry phone calls and sends angry letters, faxes, and emails. I would not be him for anything, even a healthy wife. Life, even with a healthy wife, seems to involve a lot of suffering for him all the time. And right now, even in the midst of everything, I am thankful every day to live in this house instead of above the Troll. Rowen will shriek or stomp or something, and I will remember the gut-wrenching anxiety I used to feel every time that happened in the old house, and I will be happy I don’t live there.
The irony is that while we bought this house and figured that people who didn’t like the noise of kids basically didn’t have to be our tenants, this house is practically soundproof. The other irony is that the Troll always wanted us to get wall to wall carpets (though I am sure that wouldn’t have helped, since the rugs didn’t) and we sort of drew the line at spending thousands of dollars to accommodate his lunacy, and then we went and bought a house with wall to wall carpets. Go figure.
Speaking of his angry emails, I get one about two days after I see his wife
on the subway. It has to do with my trusteeship in the condo association, which I resigned when we closed, but which our lawyer evidently forgot to send to the association. Our lawyer, surprisingly enough, has not been returning calls from a longwinded blowhard that he doesn’t work for, so now the Troll wants me to get involved. Of course, what it is really about is having the last word. During the days before we moved, we had had the police out to have a lengthy talk with him, basically telling him that his rights were not being violated, we were moving anyway, and he needed to back off. This seemed to scare him off of communicating with us directly until we moved. He sent everything to our lawyer. But now that the dust has settled, he can’t resist berating me for leaving some stuff in the basement (I think I have done this everywhere I have ever lived that had a basement). He says I am “a weird kid”.
This just about knocks me out. I am getting through my days pretty well, and, for the most part, I have the energy to get through the day, do my job, and communicate with everybody in a pretty good way, but after getting this email, I just want to go straight to bed. I just have no energy for anything extra right now. I can handle all the regular stuff, but when something unexpected comes up, I do not have any gas in the reserve tank.
I call our lawyer and get this straightened out. I am in no way above milking my situation to get better service, so I say, “Look, Kirsten has breast cancer, and the last thing I want to be dealing with right now is this asshole.” He takes care of it.
I do take some comfort from the fact that the email seems to reveal that he doesn’t know Kirsten is sick. This comforts me, because several people on our old street know, and it wouldn’t surprise me at all if it got back to him. And he is the only person in the world I don’t want to know, because I know it would make him glad.
I spend a couple of days composing replies about how rich it is to be called weird by a guy who I’ve seen yelling obscenities and chucking his dinner across the back yard, about how ironic it is to be called a kid by a 40-year-old childless musician who thinks he has a lot of responsibility because he swears at contractors a lot, but eventually I realize that what he really wants is for me to get into this with him again. I sort of want that too, but I realize it would be pointless. He is never ever going to read a put down from me and go, “by gum, he is correct! I’ve been an abominable cad!” So if I can’t convince him, what’s the point? There is no point. I add his address to the “blocked senders” list, and it feels pretty good.
Fever
Kirsten’s counts are low. I’m not exactly sure which counts we are talking about here–white blood cells? T cells? –but anyway, they say that about a week after you get chemo, your counts get low. This is because the chemo kills the cells in the pipeline, so to speak, rather than the ones already in your blood, so when you are ready for this week’s infusion of white blood cells, you find yourself a little short.
She is under explicit instructions to keep an eye on her temperature, and if she runs a fever of 101, to quote Dr. J, “that’s an automatic overnight in the hospital.” It is Saturday, and Nan is here, and the two of them are consuming just awe-inspiring amounts of chocolate, and Kirsten feels a little hot, so she begins taking her temperature obsessively. She has the thermometer in her mouth like every 20 minutes. I just have this feeling that we are definitely headed to the hospital soon.
I am right. Her temperature creeps up as the day goes along, and late in the day she announces, “one oh one point five,” and I page the doctor and get no response, so I hang up and page her again, and she eventually calls and says yes, go to the emergency room, and I think, great, emergency room on Saturday night–we’ll have to sit there for hours while they process the car wrecks and gunshot wounds. I am freaking out, because she is going to have to spend the night in the hospital, and this reminds me that soon she’ll have to spend three weeks in the hospital, but mostly it just sucks because we were having a really nice, relaxing Saturday at home, and now here’s cancer again, reminding us that we don’t have a normal life. I am also kind of freaked out because, you know, she has this compromised immune system, and she has a fever.
Nan is also freaking out, but Kirsten is shockingly calm. In fact, when I drop her off at the emergency room on the way to park in the garage, she says, “Okay, well, I guess I’ll call you when they get me into a room,” and I have to explain that, no, we are just going to the parking garage, we’re not going to just drop her off in the emergency room, and she says, “Oh, okay, but, you know, don’t feel like you have to. This is really no big deal. Dr. J said this happens to everybody.” She means this, and I know that’s true, because I was there when Dr. J said that, but it doesn’t make it seem any easier.
We wait in the waiting room, and I look around at all the sad and depressed faces. It’s tough to tell who the sick ones are. Everybody looks tired and morose. One guy sitting near us was, I overheard the security guard saying, kind of laying on the bathroom floor a few minutes ago. Now he is slumped across two seats and occasionally lifts his head to cough or sneeze, and after we sit there for forty-five minutes or so, I think, well, this is just a great place for someone with a compromised immune system to be hanging out. I mean, there must be a better way for them to do this than having us sitting in the emergency room waiting room, which is probably one of the most septic places in the city, for close to an hour, inhaling God knows what kind of Ebola viruses people are spewing out.
Despite my annoyance and anxiety, I can’t stop myself from singing the only two lines of “Fever” I know until Kirsten finally snaps, as she usually does when I sing the same bit of song over and over, which is almost daily: “Hon, either sing some more lines of that song or pick another song.”
“But it’s ‘Fever,’” I protest. “Get it?”
“I don’t know that song. Nan, do you know that song?” She doesn’t. The joke is lost, so I stop, which is just as well. I was starting to annoy even myself.
Eventually they take Kirsten toward the back, and I want to go back with her just to basically say goodbye, though she really doesn’t seem to care one way or the other, and as I leave, Rowen is clinging to me, tears streaming down her face, saying, “Daddy! Don’t go!”and I try to explain that I’ll only be gone a minute, and she can sit with Aunty Nan, but she is past listening, so I just pry her fingers away, and I go back to the emergency room, and Kirsten has disappeared. In the ten seconds it took me to pry myself away, she is gone.
I finally have to ask to find her, and I go in and kiss her goodbye, and I’m feeling all morose, and she is totally upbeat. “I’ll call you! See you in the morning!”
When we get home, Rowen falls asleep instantly, and I cook dinner and open a bottle of wine. Nan and I have just started eating, and my glass is about half empty, when the phone rings. It’s Kirsten. “I’m coming home!” she says. I am annoyed that once again we have been told something categorically (“automatic overnight”) that turns out to be not so categorical, but mostly I am just happy she’s coming home and I get to sleep next to her tonight.
What Love Is
“My hair is falling out in clumps,” Kirsten tells me on the phone when I call from work. “We’re shaving tonight.”
I am delighted. My hair has been getting big again. Though I have straight hair, it does not really get long–it just gets big, like Adam Rich from Eight is Enough. So it has been getting big for a while now, but I have resisted going down to Sal’s barber shop because I figure why spend 12 bucks on a haircut when I am going to shave off all my hair soon anyway.
When I get home it is difficult for me to look at the pile of hair Kirsten has on her lap. She has been sitting on the couch obsessively pulling at her hair, and she has now gathered together a ferret-sized pile.
I have to go to Kmart to buy some clippers, so I head over there after Rowen goes to bed. It is a miserable fall night–about 40 degrees and rainy, which is a kind of weather that has always pissed me off–I figure if it’s that cold, it should b
e snowing. U2′s new song, “Beautiful Day” seems to be playing on every station. I love this song. It is about the only non-country song that has really spoken to me since this whole thing started, and while, you know, it ain’t “The Long Black Veil,” Bono’s melancholy insistence that it’s a beautiful day just about mirrors my state of mind as I drive through cold rain to buy clippers to shave my wife’s head.
I find the clippers quickly. Well, what I actually find is a 24-piece haircutting kit with instructional video How to Cut Hair at Home in English and Español. (I guess it’s something like Como Cortar el Pelo en la Casa in Español, but I don’t really know because I took French in high school)
I sneak over to Toys “R” Us after buying the clippers and look longingly at the video game systems. I do not now nor have I ever owned a video game system, but I am in the grips of another fit of “Buy my way out of this” fever, and my current obsession is video games, because TV sucks really bad but I don’t really ever have the energy to read or do much of anything creative except write, and I can only really do that when I am feeling shitty. I look at all the systems then decide I can’t do it tonight because Kirsten would totally kill me. Whenever I have mentioned getting a PlayStation or something in an even half-joking way, she has absolutely forbidden it, and right now while she is losing her hair, feeling like shit, and has a hose sticking out of her neck is not the greatest time for me to start defying her wishes. Plus, there is just something creepy and depressing about Toys “R” Us. Maybe it’s all the crying kids. Maybe it’s the harried looking adults. Whatever it is, it feels like a desperate place, and buying anything there would feel like a desperate act, so I run back in the cold rain to my car and my clippers.
It Takes a Worried Man Page 6