Alison's MRIs

Here is the happy ending of this story:  I was informed this morning by a nurse at the Duke Brain Tumor Center that my recent MRIs show the tumor to be "rock solid stable"--in other words, it hasn't grown a bit.  This is exactly what I wanted to hear.  Great news, and a huge relief.

Here is the crucial lesson I've learned that has helped me to find my way to this happy ending:  I'm not responsible for administering or interpreting my own MRIs.  I am, however, responsible for every single other thing in the medical process required to monitor my post-surgery health.

Starting around June 10, I have been in contact with my main go-to nurse at Duke almost every day (not including weekends) either via email or phone (she is, fortunately, a very nice person).  I got in touch with her because the calendar on my phone got wiped out, so I needed to know when my follow-up appointment at Duke was.  Our initial conversation triggered a series of epiphanies for me.  I gradually learned

1. That it's my responsibility to keep track of how often my MRIs are supposed to happen.
2. When it's time for the next MRI, I need to contact the folks at Duke and have them fax an order to the folks at MUSC (so this means I need to have the fax number at the ready).
3. The next day I call the folks at MUSC and set up the appointment.
4. Then I go and get the MRI.
5. After I have the MRI, I need to go stand in the medical records office for thirty minutes or so to make sure that they send the MRI back to Duke.
6. Even after they promise they've sent the MRI back to Duke, there's a pretty good chance they didn't, so I need to call Duke to find out if they received it.
7. They probably didn't receive it.  For instance, I found out June 23--when I asked--that the Duke folks never received the MRI from April 6.  Which means that no one had examined any of my post-surgery MRIs.  And no one had apparently noticed this fact.
8. So the best idea is to go back to the MRI folks at MUSC and get my own CD of the MRI and then Fed-Ex it to Duke.  With a tracking number.
9. Then call again to make sure they got it.
10. Once they've gotten it, I need to let them know that I'd like to have it read.
11. Then contact them again, to see if they've had the opportunity to read it.
12. Then contact them once again, just to see if by chance they've gotten around to reading it yet.
13. And then the happy email arrives, with news about the reading of the MRI.

Now that I know what my role is, I can do it.  But I was a bit surprised to find how important my own assertiveness is to this process.  I have loads of resources at my disposal--time at work to make calls and send emails, interpersonal skills that allow me to be friendly and sympathetic but just the tiniest bit pushy, good insurance, excellent scheduling software, the ability to keep track of lots of tasks--and I wonder what would be happening if this weren't the case.

Charleston taxis

I was going to send this as a message to Eliza, but then I thought the rest of you might enjoy learning some of this, too.

The last time Eliza was here, on my recommendation she rode back to the airport in Green Taxi, which charged her some ridiculously high rate--$40? $50?--to get from our house to the airport.  The car was shiny and new, as was the driver, and you can see what kind of a vibe they offer if you go to their website.

Yesterday, for the second time, I rode in an Express Cab.  Here's what you need to know about Express Cab:

• The dispatcher you call to arrange the pick-up will very sweetly call you "Honey."
• The taxi will be on time or early.
• The taxi itself will be a car that is old and rickety enough that you may feel lucky even to make it to the airport.  There may or may not be air conditioning or heat, depending on the weather.
• The first driver I had seemed to have his date in the front seat, riding along with him.
• Yesterday's driver was probably 95 years old, a very friendly grandpa, who drove to the airport, on the interstate, at 30 miles an hour.  He also told me stories about what Charleston was like in the segregated days.  Actually very interesting.
• The rate?  $20.

In the future, I believe I'll be recommending Express Cab.  It's a weird adventure, but you'll get to the airport, and it's cheap.

Maybelle and music

The other day, Maybelle's physical therapist made a comment about Maybelle's favorite music.  Maybelle loves music.  We listen to it a lot around the house, and it's been an integral part of virtually all of her physical therapy, motivating her to do things that are difficult or not fun.  So Suzanne--M's PT--has heard quite a few of Maybelle's favorite songs, and she's noted that they aren't generally songs she herself knows at all.  The other day she commented that we might want to teach Maybelle a few songs that the other kids will know, as preparation for preschool.

I thought about it.  Maybelle does listen to a lot of kids' music, but some of it is kind of obscure.  One of her very favorites is "Jelly Man Kelly," a truly fabulous song from 1970s Sesame Street that she's learning to sing along with (this video with the kids makes her ecstatically excited).

She loves bluegrass of all kinds and will perk up when the banjo comes on the stereo.  She also listens to a bunch of Dan Zanes, who's the musician king of vaguely funky middle-class kids with educated parents. "Foggy Mountain Breakdown," "Jelly Man Kelly," and Dan Zanes' version of "Down in the Valley" are unlikely to be part of circle time at Trinity Montessori.

Then yesterday, in the morning, as I was getting her breakfast ready, one of her very favorite songs of all came on the stereo:  Roger Miller's "Dang Me."  This is a song that includes such kid-inappropriate verses as,

Just sittin round drinkin with the rest of the guys,
Six rounds bought, and I bought five.
Spent the groceries and half the rent.
Lack fourteen dollars having twenty-seven cents.

Although it's kid-inappropriate, Miller is such a clever musician that we were compelled to put his music into Maybelle's iPod playlist.  She loves it.  During the chorus, as he's singing, "Ought to take the rope and hang me, high from the highest tree" Maybelle gleefully made the sign for "tree."

That was the point at which I decided Suzanne might be right about us broadening Maybelle's repertoire.

Good dog

A long time ago, back when I was first dipping my toes into the world of writing for Regular People, I drafted a piece about how great it was to be a woman with a big dog.  Nothing ever happened to that piece, but I stand by my main point:  we live in a world that, because of craploads of patriarchal crap, is frightening to a lot of women a lot of the time.  Having a big dog on your side evens things out a bit.

I've had a close relationship with big dogs since 1994.  I'm not going to go through and discuss each of these dogs and their strengths (in honesty, this would then become a post about Baxter, and I would be crying, so let's avoid that).  Instead, I want to talk in general about big dog benefits, and in specific about Benya.

Walking down the street can be scary as a woman in this culture.  You get looked at, you might get catcalled or messed with in various ways, you might even be assaulted.  If I'm walking down the street with a big dog, however, what I most often experience is people backing up just a tiny bit.  Benya is a big girl--around 120 pounds.  She could not be a friendlier or more laid-back dog, but she's got just enough size, and just enough Rottweiler in her, that she looks a little bit dangerous to folks who don't know her well.  I appreciate this.  I especially appreciate it when Benya, Maybelle, and I are out walking together, because then I feel that all I have to worry about is Maybelle having a good time.  Benya has figured out that Maybelle is her responsibility to protect.

A great thing about Benya is that about 98% of the time she's incredibly floppy--lots of skin hanging off of her, a lazy attitude, mostly preferring to lie on the ground.  She's the kind of dog that Maybelle can crawl over, and Benya won't even move.  If Maybelle finally resorts to yanking on Benya's lips or ears, she might sigh, stand up, and move three feet to the left, and that's about as assertive as she gets.  But if she senses that something is up, she can instantly switch to Dangerous Dog mode.  The other day Maybelle, Benya, and I were at the playground, early in the morning, by ourselves.  As I was pushing Maybelle on the swing, I noticed that Benya had switched into DD mode.  She suddenly looked like a dog you ought to take very seriously--alert, big chest thrusting forward, Rottweilerish face.  She was not going to take any shit, and it was obvious.  I don't know what she saw that made her shift like that, but I felt this lovely sense of affection and admiration for Benya in her toughness.  I knew that Maybelle and I were being watched after.

The same is true in the house at night.  This is another space that can be scary for women--I can't tell you the number of female students who've told me stories about frightening prank phone calls, guys trying to break into their houses, or just noises on the street that made them suspicious and wary.  I've had that fear, too--but not since 1994, because having a big dog in the house has meant that I've felt pretty safe.  If I'm the only adult at home at night (this happens a lot these days) and I hear a sound outside, I immediately turn to Benya.  If she's chilled out, I know I have nothing to worry about.  In fact, I realized the importance of a big dog in my life one night in 1996, when Biffle took Baxter on an overnight camping trip.  It was that night, at home, that I realized that someone could have broken into the house and be hiding in the closet and I wouldn't know!  The whole house felt like a different terrain.

I tried to take a picture of Benya in Dangerous Dog mode, but she isn't good at playing a role, so this was the best I could get.  Use your imagination:  you wouldn't want to walk into our house at night if that creature were going to greet you, would you?

Maybelle and preschool--this one less theoretically exploratory

We just found out today that Maybelle was accepted to our first choice preschool, Trinity Montessori.  Due to this blog's diverse readership, I won't--at this time--explain our thoughts about the fact that it's a church school.  Instead, I want to explain what made this school our top choice.

In my first blog post about the preschool situation, I said we hadn't decided.  I was really pleased with how well the administrator at the school I blogged about listened to what we had to say, and I got a sort of activist buzz that made me think we should go to this school and help diversify it.

In the time since then, I've reconsidered.  Here's the deal:  Trinity Montessori already has two students with Down syndrome who have been there for a few years, so when we told the staff that Maybelle has Down syndrome, they said, "Okay!"  No concerned faces, no questions about whether she'd be able to keep up, no suggestions that we put her in the infant room or hire a shadow to follow along behind her.  It's as if we told them that Maybelle is left handed, or prefers to wear t-shirts with monkeys on them, or makes a mess when she eats jelly on toast.  Their tone was very much, "Yep, we can do that.  Can't wait to meet her!"  They took us to the classroom where Robert and Joe--both of whom have Down syndrome--are students, and we saw that these two kids were fully included in their classes, doing exactly the stuff that the other kids were doing.  No shadows, no weirdness, no iffy vibes.

I do love the activist buzz, and Biffle, Maybelle, and I are going to have lots of activism to be involved in.  But as a friend who has a child with a disability reminded me yesterday, we don't necessarily need to seek these activist opportunities out.  Sometimes it's nice just to relax, knowing that the people taking care of our daughter know what they're doing and don't need our coaching.

I'm just thrilled that we got a spot!

Thoughts on "What Would You Do?"

There was a spot on 20/20 this week that I watched online today.  The spot, called "What Would You Do?", features actors in a check out line at the grocery store who verbally harass another actor, playing the bagger.  The point is to see what the actual shoppers at the store think and do when they witness this harassment happening.

Although I think they were trying to do something good by making and airing this spot, I have some problems with it.  Obviously it was very painful for me to watch the shopper actors harassing the bagger actor, even though I knew it was acting.  It was particularly painful watching the silence and even complicity of other shoppers, who didn't realize this was acting, and didn't necessarily think it was a big deal that an employee with Down syndrome was being verbally abused.  This was the point of the show:  to demonstrate that ordinary people in the world will witness injustice and do nothing.  Not necessarily a surprise, but a huge bummer to see documented.

But another, subtler, problem is how the show celebrates shoppers who spoke up.  While I am very glad they spoke up, there was a way in which these shoppers--like the woman at the end, who's introduced by the narrator saying, "No one responded with more eloquence than this woman"--talk about the employee but don't fully humanize him.  I agree with everything the woman at the end says (she, in fact, does say that every human being deserves education, a job, a chance for a meaningful life--all stuff I'm fully on board with), but she doesn't include the bagger as a participant.  In a lot of the show he becomes a kind of "it," a poor powerless victim who needs support and advocacy.  Very few people make eye contact with him, or look at him at all, even if they're speaking in his defense.

The one guy I thought challenged this framework wasn't even in line.  He comes up out of the middle of the store, tells the harasser to leave, and then--most importantly--comes and stands beside the bagger and talks with him.  He says, "Sorry about this guy, man.  You doing okay?  You're doing a good job."  He clearly sees the bagger as a fellow human being with whom he can and will connect. Turns out this guy's sister has Down syndrome.

Another blogger who posted about this show wrote, "Even the smallest baby with Down Syndrome is born with a backbone."  I love this quote, and the show made me sad because it was set up in such a way that the bagger actor didn't get a chance to demonstrate that, to step out of the victim role. 

It's good to be reminded of what you believe

Believe it or not, I'm rereading Girl Zines because I'm being interviewed tonight, and I was afraid that--given how long it's been since I wrote it, and how much has happened of late--I might be rusty on the details.  I just hit the following sentence:

Indeed, that's one point I want to stress:  challenges to the realm of the symbolic matter, even if they don't immediately result in changed material conditions.

I'm having this lovely moment of feeling, Yes, that's exactly what I believe!  That belief is at the heart of some of my plans for writing about disability, and Maybelle.  Just thought I'd share the surprise of being reminded--by myself--of a core scholarly tenet of mine.