Rox and Roll

Things not to say to a sick person

On Monday, I returned to the pulmonologist for the latest in the ongoing saga of what-the-hell-is-wrong-with-my-lungs.  We met to discuss CT scan #3, the one that I hoped would show that I'm healed.  After weeks and weeks of antibiotics, breathing treatments, etc., I've felt pretty normal, except for some residual fatigue.  Fortunately, the CT scan showed that I have improved a great deal; a lot of the crap in my lungs has cleared out.  Yet there's still a lot of "debris" in there, especially in the left lobe, which is also still partly collapsed.  (Ta-da!  Fatigue.)  And the scan also showed an even clearer picture of a damaged bronchial tube -- likely permanent damage that will require surgical correction at some point.  What I didn't hear from my doc is what caused all of this.  Is it a chronic condition?  A physiologic abnormality?  A treatable illness requiring a surgical correction then I'm in the clear?  A disease?  After three more months of treatment, we'll do another scan and talk about "options."

Now, look, I'm an optimistic person.  Even if I were staring death in the face -- not that it's even remotely possible before I'm in my 90s based on my family history -- I'll believe I'm going to live until I'm gone.  I am certain that I have a long and happy life ahead of me.  But that said, I'm annoyed.  I'm out of patience.  I'm sick of being tired.  I'm sick of not knowing what "it" is.  I'm sick of not knowing my prognosis.  I'm sick of wondering how they'll do surgery and how long I'll be out of commission and when can I get my life back?  The one where I once hopped on my road bike and road the Foothill with Chris?  I'd like it yesterday please.  As the inimitable Alanis Morrisette sings, "I don't want to live on someday when my motto is last week."

But do you know what I'm sick of most of all?  Other people.  Not all of them -- just the rude ones.

Backing up, I am fortunate to have a lot of caring and supportive friends and a family who's a phone call away (and an airline flight cross-country, but they'd do it in a nanosecond if I needed it).  But when you broaden that circle, you get a lot of people who say things like:

"But you don't look sick." 

Usually that's offered in rebuttal after I've refused to sign onto the latest fundraiser/ charity drive/ raise-awareness-athon/ hopefest/ guiltfest/ mom-time-sink.  And what do I end up saying in retort?  "Thank you!  I'm so glad I don't look ill.  But I am, so leave me the eff alone."  (OK, I don't really say that last part, but I think it.)  I can't even keep on top of my current commitments -- many of which I shouldn't have made for a host of reasons, among which sickness is only part -- but I'm not taking on anything else.  I don't look sick?  I'm no proctologist, so take your a$#hole somewhere else.

And then there's my current favorite:

"At least it's not something worse."  (For "something worse," insert "incurable" or "cancer" or "COPD" or "my grandma's sister's aunt's cousin's horrible condition that prevents her from leaving her iron lung in the worst hospital ever in Mexico.") 

Usually, that one's offered by someone who really didn't want to talk with me about "it" anymore -- or wanted to tell me to quit whining already and get on with things.  The problem is that I'm not a whiner, have never been a malingerer, and, well, am actually sick. The other problem is that nothing -- nothing -- from that list has been ruled out definitively, except for the cultures tested for in my bronchoscopy and asthma.  There are a lot of things that are as bad as or worse than some forms of cancer.  My lungs are scarred/scarring, and that's pretty effing bad.  Life is not a card game in which cancer trumps all; and everybody knows somebody to whom something worse has happened.  Believe me, I know; I just supported a bike ride in memory of a friend who died from skin cancer.  He was 34 and left behind a two year-old daughter.  He suffered -- and his family suffered -- more than I have.  But I don't know my outlook yet, and, while I have every reason to believe it's good, it's not a competition.  I can cry for him and still be sad that I don't know what's wrong with me yet.  And I won't know for months.  And sometimes, it's going to show that the "not knowing" is hard on me.  So to those who say, "at least it's not [insert horrible thing]," I hope you're right.  If you're wrong, though, I should be allowed to get all Marsellus Wallace on you. 

For now, I'm thankful that I'm resilient, and I will let neither this sickness nor people -- who I presume to be well-meaning despite the interpretations above -- get the best of me.  I am not my sickness, and my sickness is not me.  I have a lot of good to do in this world, and, no, I won't look sick as I'm going out and doing it.  I'll put on my best face and do what I do; there is no other self-indulgent option... except for this blog, I guess.  So here I [end rant] -- and keep calm and carry on, as they say.

That's my boy

Driving around with Dash yesterday, I rolled down the windows and tried to engage him in singing at the top of our lungs.  

I started with one of his old favorites, "The Sweet Escape" (Gwen Stefani): "If I could escape/And recreate a place in my own world/And I could be your favorite gir-rl..."

"NOOOOOOO!" yelled Dash.

Next up, Pink: "Get this party started on a Saturday night/Everybody's waiting for me to arrive/Sending out a message to all of my friends/I'll be looking flashy in my Mercedes Benz..."

"NOOOOOO!" yelled Dash.

Finally, I tried "My Own Worst Enemy" (by Lit), which is his current favorite: "Please tell me why-y-y-y/My car is in the front yard/And I'm/Sleeping with my clothes on..."

"MAMA STOP IT!" yelled Dash.  "YOU'RE MAKING ME WANT TO PLAY ROCK BAND SO BADLY!"

Talking with kids about suicide

Yesterday, I did something I had hoped to avoid until at least my daughter's teen years: I talked with her about suicide.  It's nothing I planned on; I just knew that she'd have heard about our area's fourth teen suicide in six months, and I felt it better to address the situation with facts rather than to try to discern meaning from school rumors.

Broaching the subject, I asked Petunia if she'd heard about another teenager getting hit by a train (this is what she'd heard about in the past).  Her response was that yes, someone at school had said that another child had been hit while sitting on the tracks.  Her question: why would a kid sit on the tracks?  Couldn't he hear the train coming?

Yes, I told her, he could.  He sat there on purpose.

I would like to forget the look on her face as it dawned on her what I was saying, but I'm sure I never will forget that sweet face, flushed and full of awe, anger, sadness and confusion. 

Why?  She wanted to know.  So do I; click here for the post I wrote regarding teen suicide for the SVMB.

In the end, I didn't have to say much at all.  As her under-the-weather brother slept in his car seat, we talked in the car -- our usual place for deep discussions.  She told me that if she felt really sad or "out of hope" (her words), she'd talk to me or to her dad, of course.  She also looked me in the eye and promised me she'd never take her own life.  I didn't ask her to say that, but I'm glad she did.  I looked her in the eye and said that neither daddy nor I would either.  It's a pact, one that psychologists encourage us to make with our kids.  It wasn't hard to do with a nine year-old; I wonder how many parents of teens have heard and heeded that advice, too.

What a screwed-up world this is when Petunia doesn't know about the birds-and-the-bees yet but knows about suicide.  I'm just glad that she and I could talk meaningfully about this without hysterics or fear.  She ended our conversation by saying, "I would never do that to my mom and dad.  What are these kids thinking?"  In all of the despair I feel about this suicide cluster, I have to admit that I agree with her on that front; these kids aren't thinking about their families, or the train drivers, people whose lives are going to be taken, too, to some extent, by their actions.  It's too late for the four who've already passed, but what about the hundreds that surround us still?  How do we convince them that they have worth or that their families are worth sparing that kind of pain?  It breaks my heart that this is happening and that my daughter lost a little bit of innocence about the world yesterday.  It happens; they grow.  I just wish I could have sheltered her a little bit longer.

Another day, another milestone

After yesterday's nursery school carnival antics, I figured that today would be pretty rough at school.  Oversugared, overtired kids plus overworked, overexhausted parents and teachers couldn't make for a good day.  I could tell when I showed up that it hadn't been a great one, though Dash seemed his usual self.  We hung around for a little while after school, but, when we arrived home, Dash went to his room instead of to his usual bathtub routine.

"Dash?" I asked.  "Do you want a bath?"

"No thanks, Mom," he replied, "I'm not that dirty."  Oddly, he was right; he's pretty clean for a day in the wet sand at his school.

"Do you want a snack?" I asked.

"No thanks, Mom," he said again. "Actually, I just want to be by myself for a while."

I cleaned out my ears.

"You want some lonely time?" I asked (using his usual term for it).

"Yes, please," he asked.  "Would you please close my door?"

I left.  I listened at the door, because this surely couldn't be anything good.  I heard sounds of play and went about my business for about five minutes, then I checked on him.

"Do you need anything, love?" I asked him.

"No thanks, Mom," he said for a third time.  "It was a long day at school, and I just want to play alone."

I left.  He played alone for about 45 minutes.  When he emerged, he declared he wanted to make something with me.  We studied the cupboard.  We tied on his new apron from the carnival store.  We mixed up some homemade play-doh (recipe to follow), and he's been playing with it, a chapati roller, and my Halloween cookie cutters ever since.

This day will live on in my memory for quite some time because:

1) After a rough day, he wanted to spend quiet time alone.  Maybe he IS my child, after all.

2) He didn't just have a few minutes alone, and disaster didn't happen: he played alone and had fun (I listened in on some great matchbox, train, and building fun) for a long time.

3) When he felt better, he didn't ask for TV.  He asked for me -- and, not only that, he asked to make something with me.

4) He meaningfully engaged in the play-doh making... and still is.

This is one of those days that you live for as a mom: the light at the end of the tunnel, the signs that they're figuring out how the world works.  It's the reward for all of the poop and barf and crying, I think -- the fact that they actually become little people who don't just rely on Mom or the TV but can rely on themselves.  What a great day -- and who knew that play-doh was so easy to make?!

Here's the recipe:

1 cup flour
½ cup salt
2 teaspoons cream of tartar
1 tablespoon vegetable oil
1 cup water
food coloring

Mix ingredients together in a saucepan and cook for two minutes until the mixture pulls away from the pan.  Knead the dough until smooth.  Store in a covered container.

P.S. My hands are bright red from kneading the play-doh... it's not wheat-allergy friendly.  Next time, I'll wear gloves.

The week the wheels came off

The surest sign that I'm starting to lose my mind is when I start losing "stuff."

Let's take, for example, last week, when we enjoyed dinner with friends at Three Seasons restaurant.  (Side note: I loved dining with these friends, but I won't be going back there because the place is not friendly to the wheat-allergic, offering very little that is free of flour or of soy sauce, which is half-wheat.)  In any event, I had a bag of felt sushi, handmade for my son's preschool carnival today, in my purse from when I tried it out on sushi trays at Whole Foods.  (The sushi trays were in my house, transported there with other groceries.)  I showed off the handiwork to these friends, who were appreciative as they had briefly been in attendance at the same nursery school.  After my display, I put the felt sushi back in my purse and covered it with my jacket; when my son started playing in that area, I didn't think twice about the sushi.  I should have, though, because it was missing the next day.  I asked Dash about it 53 times, but he swears he didn't touch it; the restaurant didn't find it.  Maybe I'll find it in about three years, lurking somewhere in my house, but, for now, its gone -- hours and hours and hours of someone else's work, gone.  We sold the sushi sets for $10, but it was probably about five hours of labor to make those sets -- and it's losing that time, more than the replaceable money, that just kills me.

Here and there, other things got lost or forgotten over the course of the week... a shopping list here, a birthday card there... No matter, "The End" was approaching, and it happened today.

But not before I baked pumpkin bread last night without the pumpkin.  That's right: I mixed up three loaves of pumpkin bread with flour and butter and eggs and spices, and I didn't put in the pumpkin.  After about forty minutes, I checked my bread in the oven.  It didn't smell very good, and it was sunken in the middle.  When I realized it, I just turned off the oven and walked away...

...and returned to sewing some felt sushi that I needed to replace.  Tonight, I'll probably finish the last few pieces of watermelon that I started sewing, because it feels like the right thing to do. 

I'm hoping now that the preschool carnival is over, I'll start remembering things again.  I could do without the dreams of being chased by felt food, too.

He knew I needed a laugh

Today, I dreaded working at our co-op preschool.  I could get over the paint (I can't stand paint) and the sand (also not a fan) and the chaos (it's only three hours) ... but today, it was raining.  And rainy days are my least favorite at co-op preschool, because, unlike all of those sensible drop-off schools we attended back in New Jersey, kids at this preschool are allowed to spend the entire day playing in the rain.  And I knew that Dash would.  Of course, the person for whom I was subbing was assigned to "outside play" -- so that meant that I was destined to spend a ridiculous amount of time in the rain, too. 

I prepared.  Last night, I laid out snowpants, boots, changes of clothes for both of us, and flask of bourbon.  (Kidding, though it was tempting!)  I convinced myself that it wouldn't be that bad.  I also thought that I could maybe convince Dash that playing inside was fun!  and to do a craft!  and that his mom wasn't nuts!  And for the five seconds that he did engage in a craft indoors, it involved playing with tape.  When his friend K taped his own mouth shut, Dash announced to the room, "Hey!  My mom does that to me all the time!"  I told him to go back outside.

So there we were, Dash and I, and the 30-odd other kids who have taught me more than I ever thought I'd want to know about children's behavior.  And we were outside.  And it was raining.  And I was not very happy.  But then, I started to push these smiling little faces on the tire swing.  I realized that their choice of play might be making me miserable, but these were the some of same kids (from last year's class) who taught me a lot about how to love other people's children.  And that's a big thing for me, because I had to teach one of my graduate seminars once (as in one session) and realized that I was not cut out for teaching anyone younger than the-age-when-you-know-what-you're-doing-with-yourself (for some, that's 'round about never).  And these little faces, squealing with delight, made me forget that I was wet, miserable, and wearing snowpants in California. 

Then I saw my son.  My soaked-to-the-bone, covered in sand and dirt and God-knows-what, sweet, smiling son.  He had decided to help another mom clean up spilled glitter.  He was sparkling like a fairy from head to toe, and all I could think to myself was: darn it, I'm miserable again.  That won't even come out in the wash.  Argh!  So he came up and hugged me, of course, because having to do his laundry on a daily basis isn't enough ... and now I have Sparkly Snowpants to wear next time I work in the rain, which might be never.  I'll be calling in Californian.  The tranformation is complete!

Rox on a Soapbox

I feel like I woke up today to find that it's April Fool's Day instead of Friday, October 9 -- my reaction to our President winning the Nobel Peace Prize.

Listen, I'm a pretty big President Obama fan. I'm a fan even though I disagree with some of his policy decisions (like the healthcare "public option") intensely. I believe in our President because he inspires hope -- the same reason, apparently, for the Nobel committee's decision to award him the Nobel Peace Prize.  Yet I've been waiting... and waiting... and waiting... for President Obama to start walking he walk instead of just talking the talk.

In my opinion, President Obama is going the route of former President Bill Clinton, who vowed that his first action as President would be to let Haitian refugees into our country.  They were never welcomed.  Likewise, President Obama vowed to do a few things, too -- things like closing Guantanamo, and it appears that his January 2010 deadline for that will be missed by a mile.  He vowed to end these wars as soon as possible; is there an end in sight?  (Frankly, I'd defer that decision to the "real" military leaders.)  He promised universal healthcare but is so entrenched within his Democratic party that he can't lead when it comes to compromise.  I have a problem with that.  My fanhood is slipping a bit.

And now, like kids who play non-competitive soccer yet garner an award annually, he has a trophy on his shelf that's awarded more for effort than for action.  I have a problem with that, too.  Inspiration is one thing; action is another.  Rhetoric doesn't mean anything to the poor still waiting for health insurance or to those waiting for their loved one to return from a war in Iraq whose purpose we seem to have forgotten (that is, if we ever knew it). 

I wring my hands over this one.  I read and listened to President Obama's acceptance remarks; his eloquence, as always, was impressive.  He is a rhetorician through-and-through and, at some point, should certainly get an award for that.  In the speech, I heard a "call to action."  I heard "America will continue to lead."  And, most notably, I heard President Obama say that the Nobel Peace Prize is not just for action, that it's also to "give momentum to a set of causes."

Well, Mr. President, that's my question for you: we know your causes, and, so far, your actions on them have been weak.  What do you plan to do now that the eyes of the world are laser-focused on you?  Push for public-option healthcare again even though it will fail every time, or work on a compromise that is bipartisan?  Bring about a sensible end to a war or two?  Right an economy in which nearly half of all Americans don't pay income tax -- or perhaps you'll address that inequality?  Speaking of equality, how about according my gay friends the same civil rights that you and I enjoy?

I want to see some momentum yesterday.  Because as far as I can tell, it's politics as usual in Washington, D.C.  And that's not why I helped elect you, Mr. President.  You don't deserve a prize for hope without action, for that's an empty promise.  You won't get elected again on hope absent change.  So please, do something.