superficial me

Went to a PTA meeting last night. The Principal and Assistant were there giving a little Q&A session. I’ve had not-so-great interactions with these gentlemen lately, so I was inclined to listen with forked ears.

They came into the room. 7:15 at night. They had been in school working since 8 that morning. Almost 12 hours they’d been working. Immediately I noticed their clothes. Principal in a black ribbed sweater. Not a pill or cat hair in sight. Collar of his checked shirt still crisp. His pants looked like he just picked them up from the cleaner’s. Silver hair cut short and styled like a magazine model. He looked like a million bucks.

The AP, same deal, but he was in shades of tan and beige. Not so succinct or decisive of colors, but again, totally wrinkle, pill, fray and stain free. His hair was a little weird, bordering on a mullet, and crispy with some kind of product.

But here’s my confession to you: I liked them better because they dressed so well. I felt like they were doing me a little favor by dressing so nice and looking so well groomed. I wanted to listen to them more, watch them talk. I feel that way about all sorts of people and their clothes.

I try to ignore it, but I bet I’m nicer to people who are all done up. And anyone who knows me knows that I’m the last one to care about if my socks match my outfit or even each-other. Hmmm. Oportunity for growth. Either get over it, or start dressing accordingly. I’ve gotta think about this.

Rose Marie and Me part 2

After Walgreen’s we had a break, Rosita and I. We read books, we played hide and seek and she followed the cats around the house. Things were mellow. I actually thougt she had forgotten about the cookie store. I actually hoped she had forgotten about the cookie store. Although I loved how her fuzzy spiralled hair pouffed out around her face when I pulled the hat over her head, and loved holding her little gloved hand when we crossed the streets, I still hoped she had forgotten about our next walk. She hadn’t.

We bundled up and headed out again. I made a point this time to cut across the baseball field. Grass. No cracks. We had a little tiff about whether the bits of yellow foam in the grass actually counted as colors, therefore granting us good… whatever. It didn’t last too long and neither of us had our hearts in it. She knew bits of foam, even wrappers in the grass, don’t count. It really wasn’t an issue.
But when we got to the street and sidewalks things started to get ugly. Rose started to say things that were disturbing. Raised the hackles on the back of my neck. Just thinking about it is starting to get me a little agitated. I know she’s only 5, but whether she came up with this idea on her own or someone convinced her it was true doesn’t matter to me. Both are disturbing to me in decidedly different ways.

As we stepped onto the street where there was a veritable web of cracks she said, “it’s OK to step on the lines if you do it This Way” while planting her little foot smack onto a crack. Not just onto the crack, but along the crack. The full length of her foot running along the crack. She did it twice.

I stuttered and stammered and said, “Rose, I’m pretty sure that’s wrong. You’re still stepping on the line, honey.”

“Yeah, but it’s Ok if you do it like this.”

“No, Rose. That is totally stepping on the crack. How can you think it’s Ok? If it’s anything, it’s worse than the other way because it’s so much more of the crack touching you. Maybe it’s like 10 times worse than the other way!”

We moved to the boulevard where we walked on the grass, but I was still tweaked. Wracking my brain to think of how anybody could think it wasOk if you changed the way you stepped on the crack. That’s totally insane, right?

Then she started to say other things were good luck. Trees, rectangles, circles and ramps, for god’s sake. By the time we got to the market, my armpits were getting prickly. I steered the chatting to different topics. We talked about games she likes, and pets she’s had. But it was punctuated with pointing out “good lucks”.

I bought her whatever she wanted. A peanut butter cookie the size of her head, a small pack of animal cookies and yogurt covered pretzels. On the way home I tried to talk myself down. “You know that stepping on cracks is just a thing you made up, right?” And a thing she probably made up, or is making up right now. Chill out, just go along with it. She’s 5 years old, you are 37.” Then she’d step along the full length of a crack. And it bothered me. It still bothers me.

That night I was talking about my day with my oldest and most… mmmmm not quite neurotic, but kind of neurotic, son. He laughed at me for getting worked up about the colors. He laughed when he read the whole of part one of this very essay. He said the colors thing was probably bunk, but he laughed.

But when I told him about her stepping the full length of the cracks, he stopped laughing. The color drained from his face. “She did what?” he asked. “All the way along the crack? Oh my God, that is so not cool.” He shuddered and shook his head. “That’s the most ridiculous thing I’ve ever heard. If anything, it’s much worse than just stepping across a crack.” God I love that kid.

Rose Marie and Me Part 1

I had my little cousin over today. We spent the whole day together. She’s a lovely little thing. 5 years old. She says delightful things like, “Remember when I was four?” and “I’m a ways-aways from 6, though” Probably because her birthday was last week.

She’s about the nicest little person I know. Not nervous or scaredy or even particularly annoying. Still a little icky in the way children are icky. You know, too many wet parts and gooey bits and random bad smells. Like dogs or other people’s bathrooms. But on the whole, a respectable specimen. We had a good day.

I had been thinking about writing an essay about my penchant for obsessive-compulsions for a couple days now. I know, I know, I’ve written about that before. But folks, I’ve only begun to scratch the tip of the OCD iceberg. Between that and the hypochondria, I’m really busy. I’ve been thinking about it for a while, like I said. But having Rose over here sort of complicated the issue. Or maybe it simplifies the issue. Alls I know is, she and I disagree about some things.

We took two walks. One to Walgreen’s to get some Lifesavers for her cough, and one to the cookie store for… you know. On both walks she said to me, “Oh! don’t step on the line. You have to step on a color if you do.” The lines, I was with her on. Any idiot knows not to step on cracks (unless it’s a wood floor, which in most cases is OK, or a floor with tiny tiles which is troublesome, but what can you do?) when walking outside. So that was cool. But colors? Colors??

I watched her feet. And, by God, she was onto something. There were colors. The utility people spray colors all the time on the sidewalks. And crosswalks? Clearly they count as colors although they are, strictly speaking, white. Stores have different colored tiles around certain areas. Parking partitions, bike lanes… She had a point.

So I was understanding, without much explanation from her, that if you were careless or unfortunate enough, through no fault of your own, to step on a crack (or a”line”), you needed to step on a colored spot to take away the bad juju from the crack. It might seem complicated, but it isn’t, and it doesn’t add anything to your walk, really. Just measure your steps accordingly as you go and you’re good.

We held hands. We had an understanding. Not an agreement, mind you. Just an understanding. Because she’s only 5 and I didn’t want her little head to explode when I told her the truth. You know, the truth. You know, don’t you? Oh my god.

Steel yourselves if you don’t already know. And since you are old enough to read, I think you can handle it, even begin to implement the system. The truth is that the only thing that takes away the badness from stepping on a crack is snapping your fingers once for every crack. Now you haven’t known, so there might be some sort of cosmic grandfathering-in of people who didn’t know (don’t the christians have something like this for those who didn’t have the oportunity to believe in Jesus?).

In any case, what I do, just in case, and I suggest you start doing, is snapping my fingers (both hands at once saves time and give a nice balanced feel) when I haven’t stepped on any cracks. To make up for the times when I wasn’t paying attention, or tripped, or stepped on a crack that was buried under carpet or snow or leaves.

But back to Rose and me. Rose started to talk about colors and cracks in a way that made me uncomfortable. A way that got me thinking that maybe she and I are Not of a mind. She started to talk about Luck. That’s right, Luck. Colors were good luck and lines were bad luck. For lack of a better expression, let me just say my blasphemy alarm went off. This wasn’t just an age-appropriate re-jiggering of things. Someone had been teaching her that this was about Luck.

It didn’t bode well, but I tried to be open minded about it. She’s blood, after all. But it creeped me out just a little, I’m admitting this. I’m fighting it even as we speak.

Litigation and Ramon (uneditted)

The thing about suing for damages (and I’m clueless about what we would even sue for, other than our misery) is that I don’t know where to begin with it. Nor do I have the energy to coordinate it, which is what would have to happen. All we want is for him to get better and it to go away.

I think this is what really happens with malpractice most of the time, contrary to what people like George Bush and Norm Coleman would like you to think. People don’t sue willy-nilly. They don’t even usually sue when they have cause. They are treated or mistreated, and they want to get better and move on. If a lawyer materialized and offered to do the whole thing for a portion of damages, that’d be great. But there is neither excess cash, time nor energy to invest in suing.

The other complicating factor which I have consciously left out is the woman who is boarding at my mom’s house. We’ll call her Nancy. Nancy is a family friend, not a close one until very recently. She moved in to my mom’s (Ramon’s) house because she needed a place to stay and he needed help with grocery money.

You may think I’m overdramatizing, and if I am, just go along for the ride, pretend this is fiction.

Nancy is a former model in her fifties. She claims she grew up on a farm. She says she was in charge of the medical care of the head of the mafia in New York years ago. She works as a manager in a retail store in the Twin Cities. She works out regularly, bleaches the kitchen and bathroom incessantly and goes through about 7 bottles of laundry detergent in a week (no lie). She does laundry every day, regularly at 1, 3 or 6 in the morning.

Nancy has fallen in love with Ramon. Within a month of her moving in, Ramon started to talk about having surgery. She did all the research, interviewed doctors and guided him to the surgeon and the hospital he ended up at. Every other family member tried to discourage Ramon from doing this. We were all worried that he might not survive the surgery and recovery.

We were also concerned that he could afford the after-care he would need, and the time off from work (minimum of 2 months). When Ramon decided to go ahead with it, Nancy was clearly in charge. She talked to doctors and nurses, she ordered the medical equipment and she went with him to all appointments. She came up with a diet, vitamin and exercise regimen for him to do in advance of the surgery. She brought him to her homeopathic doctor.
She called me from the hospital right after surgery, telling me that it was touch and go because Ramon has sleep apnea. While talking to me from the hospital room she would cover the phone and say, “Ramon, you need to remember to breathe.” I could hear the equipment beeping in the background, and the whole thing was pretty dramatic.

There were a series of dramatic happenings reported from the hospital, but whenever I talked to Ramon, he sounded alert and good. She reported him being in “Tremendous” pain, but he reported his pain being at a 1 on a scale of 1 to 10. She spent all her time at the hospital when she wasn’t working, and the hospital staff started to hate her. She questioned every decision, every procedure and every medication.

She talked constantly, mostly about things that were irrelevant. She would talk about putting on his socks and finding pants for him that would fit over his apparatus, about the layout of the house, and why it made it difficult to get to the bathroom at home, about his high calcium count and his homeopathic diet. All these were from the angle of, “I have gone to the ends of the earth to help this poor, disabled guy.” The thing is, some of the things she talked about were important. But it was nearly impossible to tell which was which.

The clinic staff and hospital staff started to ask her not to call. When I went to appointments, they would heave a sigh and say, “You’re really easy to deal with. Can you come to appointments instead of that other lady?” I tried to make that happen, but Nancy got pretty upset if I opted to go instead of her. She was willing to allow me to go when she absolutely couldn’t, but often it was both of us, and she monopolized the visits.

All along, the key thing is, that The hospital and clinic made significant mistakes. They didn’t keep him long enough post-op, didn’t prescribe the correct medications, or the correct doses, didn’t keep sterile conditions, didn’t change bandages, put his struts on upside-down, installed the whole apparatus upside down, and didn’t listen to Ramon when he voiced concern about things.

But the way which Nancy approached the case made it very hard for them to figure out which concerns were valid and which weren’t. Their mistake was that they just started tuning her out completely and assuming any concernes about Ramon were bogus attempts at drama and martyrdom on Nancy’s part. They even started to tune out Ramon.

I have asked more than one person at Symphonia if there is any way to remove her from the process. They seem confused at the question, and although they have agreed to remove her number as main contact and replace it with mine (after contacting Ramon first, which doesn’t seem to occur to people, maybe because it involves having a translator involved, which they would rather not do).

She insists the meds be kept across the room, so Ramon can’t take them on his own. She tells people he doesn’t have appetite when they offer to bring food (but when they do anyway,his appetite is hearty), throws away food people bring for him, second guesses the home health nurses and seems to have an incredible gift for figuring out ways that things might kill Ramon. She told my brother, in tears, “We almost lost Ramon.” But none of us can figure out when he was almost dead. But maybe she means that she didn’t know where he was for while…

She has confessed to being “way more in love with ” Ramon than he will ever be with her, “because he’s still in love with your mom. But that’s just something I need to deal with, it’s my choice. I love him more than I ‘ve loved anyone in my life”

Ramon, for his part, is heavily drugged, and always a little obtuse. He’s concerned about hurting Nancy’s feelings by asking her to back off. He’s lonely and accustomed to having someone else be in charge.

I do worry about this, but I don’t exactly know what I can do to fix it. I asked Ramon to come and stay at my house for just a couple days, and he said he’d think about it. Nancy says he needs to stay at his house because he’s used to those germs, but I’m pretty sure that if he had 3 days of consistent, unmeddled-with care, he would get better. But I’m not going to insist. As a matter of fact, I think I’m going to refuse to be involved with this as long as Nancy is involved. He’s an adult and I have an entire family of my own to meddle with. I’m happy to take advice.

Ramon Revisited III

After we left the clinic at Symphonia, I have the following instructions written down about Ramon’s care:

1. Double the dose of his every 12 hour medicine

2. Every 6 to 7 hours (three times a day) turn the struts one full revolution, This lengthens the distance between the rings, pulling them (and the leg bone) apart

3. Take the new antibiotic for the skin infection

We were also instructed to get Ramon in the tub and give the leg a good soaking. The nurse piped in that Ramon doesn’t even fit in the bathroom, much less the tub with his leg apparatus. The doctor thought for a while. “Do you have a Water-pic?” We do, but…

“Use that to irrigate the pin-sites and clean them out really well.” It seems kind of creepy, but clever, in a way. And much better than when the nurse asked me to wash out the sponges in his bandaging by hand in the kitchen sink (which she did twice). I have no poker face. The oh-gross-alarm went off in my gut, and she could tell. “They don’t actually touch the skin. It’ll be fine.”

Right.

We leave the clinic without the Doctor peeling back any bandage, cleaning any wounds or even taking Ramon’s temperature. Our main concern is the skin infection he has, which doesn’t seem to concern the doctor much at all. Which is probably just fine, given that there are no sinks in the examining room, no gloves, and no hand sanitizer. But the carpet is fabulous and the doctor’s hair is absolutely perfect.
So there are our instructions. I leave them with my brother. He doesn’t need to touch the fixater (the leg-stretcher) for about 6 hours. He calls me 20 minutes after I drop Ramon off. I can hear outrage and mild panic in his voice.

“I have to break his leg? What is this?”

“No, Patrick, you don’t have to break his leg, and anyway, nothing has to be done for at least 6 hours.”

“Ramon says I have to break his knee. You never said anything about that. Just tell me how to do the struts. He says I have to do it.”

“You don’t have to do it now, but when it’s time, you turn each little arrow thing one full revolution. It should click when it goes one full turn. But don’t do anything until later tonight. ”

Fifteen minutes later the phone rings.

“The don’t click. How do I know when it’s a full revolution? There are little millimeter callibrations on the side, they move when you turn it. Can’t you just call the office and ask how many millimeters it should move each time?”

I agree to call, it seems like the sensible thing to do. When I call Patrick back and tell him the nurse says it should move one millimeter at a time, there is a long silence.

“oh shit…”

“don’t say that, Patrick. How far did you turn them?”

“OOhhh…”

“Patrick?”

“Maybe 3 or 4 millimeters.”

It probably contributed to his pain. But as it turns out, each revolution only moves the thing a fraction of a millimeter. It’s only supposed to move one millimeter per day, not per revolution as the nurse said. And Patrick, for all his worrying, didn’t turn it more than twice around.

Ramon’s main problem is that he has an antibiotic resistant staph infection. It is spreading down his leg rapidly. He goes into the hospital for that infection later the same evening. He (accompanied by a whole cadre of supportive semi-familial people) was admitted and stayed for 3 days. Remember, this is about 7 hours after he left the clinic next-door to the hospital.

What Is This?

Look, you might as well know this, because it’s true and I’m sick of carrying it alone. Me, Ramon, my sisters, my brother, my whole family in a way, even people who you’d think wouldn’t have any business in this deal. We’re all still hampered. Does that go away? After a traumatic passage through sickness and death?

When will I stop wanting to explain to people that my mom died young and in front of us. When will my whole family stop feeling battered? When will the raw spot toughen up? It’s fading. That, I can tell. But I still feel like I walk with a limp, or I favor one arm and people can tell. I’ve still got the running monologue in my head, trying to make it all make sense, and coming up empty handed. Because it doesn’t make sense.

I had to have the conversation with my kids about euthanizing Yikes, the geriatric cat in the house. And in my defense, it’s time. She keeps us up all night scratching at the wall near our heads, yowling randomly and walking circles around our heads. Sometimes she stops to rest, draping herself across my neck or my head. I can sleep with her on my head, on my shoulder, even on my neck. But when she starts to lick me, which she always does at some point, I have to shove her away. Then she starts scratching at the wall near my head.

After a couple nights of sleep deprivation, I stopped loving her. If we lock her out, she’ll yowl and wake up the whole house. She’s just gone dotty. She sits staring at her feet. Misses her jumps, loses her footing… She isn’t the same cat. Lately she has seemed very unhappy, like she knows she’s not right, or she doesn’t feel good. The last two vet visits have found her healthy (for an 18 year old cat). They’ve also cost about a hundred fifty bucks each.

It shouldn’t be about the money, but it is. I don’t feel good spending hundreds of dollars on a very old unhappy animal, when I could send a whole flock of ducks to a family in Tibet for less than that. So I decide it ‘s time to prepare the children. Zach is understanding, Jasper’s not. The first time I bring it up he loses his mind and storms upstairs in tears.

When I go to his room to talk him down from the ledge, he is sobbing, face down on the bed. I sit down, rub his back and tell him I think she’s not feeling good because she’s crying a lot, and that she’s acting like she sees things, and she seems scared. I tell him that she’s very old for a cat and everything has to die. Our job, I explain, is to try do the best we can to make sure she doesn’t suffer.

After he cries for what seems like an hour, but is probably more like a mere fifty minutes, I try to talk to him again. This time he tells me, “It’s too soon mom. It’s too soon after Gramma died” He dissolves again. Yeah, it’s too soon.

It isn’t about my mom, it isn’t about the cat, and it is. Everywhere I go, when things get hard, or when they get good, or just at random times, I want to yell, “My mom is dead! We tried to take care of her, we did research, we bought vitamins, we lost sleep, lost weight, lost the battle, lost Susie. We tried really, really hard to be smarter and better than other families, listened to the doctors, questioned the doctors, followed our orders, tried harder than we’d ever tried before and SHE STILL DIED. And I still dream I’m trying to figure out how to make her better, and I feel the relief and sinking sadness that it doesn’t matter anymore as I start to wake up. And we’re still trying to figure out how to be a real family without her. We’ll probably never be whole again. Do you hear me?”

At the doctor’s office, at a basketball game, in meetings, at home… I feel like I need to tell everyone so they understand. Like it matters. Like they’re not carrying around their own traumas that they want to shout at me.

When is it no longer going to be an asterisk alongside everything I do, every interaction I have? Millions of normal people live to see their parents die. How do they get on with their lives? I haven’t been through war, torture, rape or a whole host of the unnatural horrors available on the menu of life. My mom got sick and died. And the whole world changed, and the whole world stayed the same. When do I get to move on?