Not So Helpful

So I’ve been feeling a little down lately, understandably. I find myself sitting still and quiet and inventorying my body for symptoms of a brain tumor. You’d think I’d have better things to do with my few still and quiet moments. Every twinge, tickle, or sneeze makes me think the symptoms are starting and that the downward spiral into pain and dizziness is beginning. It’s like how when you fall, it seems like it takes forever to finally hit the ground. I feel like I’m in the limbo land before impact. Don’t think I’m wallowing in self pity though. Sprout is making sure I have no time or energy for the luxury of sorrow.
To begin with, he’s cutting teeth. Like, all of them. Well, maybe not all of them, he has six already. But he’s cutting all the rest. At once. Poor baby. I’m sympathetic. What I’m less sympathetic about is how suddenly in Sproutville it is completely acceptable to get up at five o’clock in the morning. Not cool. There appears to be nothing in the world wrong with him, he just wakes up screaming. And I could even deal with that, except that he refuses to go down for a nap until after noon. Meanwhile, I’m desperately in need of a nap at around nine. When he finally does go to sleep and I set about actually getting something done, he insists on waking up less than half an hour later. Naturally, I give him medicine for his teeth, cuddle him, etc. But what he wants is just to sleep. On me. For a good long time. So much for actually getting anything done. Maybe all this is just Sprout’s way of making sure I don’t dwell on the news about the brain tumor. Or maybe, and more likely, he’s just being a baby and despite all of humankind’s vast experience with the little creatures, they remain a mystery.
I’m able to blog now because the babysitter is here. This will be the last time she comes for her routine afternoon with Sprout because she’ll be going back to school next week. I never thought I’d ever be against compulsory education, but …
Speaking of compulsory education, my two nephews will start kindergarten next week. Even though I know it’s true, I still can hardly believe it. All too soon, it will be my own little boy going off to kindergarten. It’s a really good thing that I’ve got four years to figure out how not to fall apart when that day comes.
Speaking of falling apart, I have made a very difficult decision, that being to switch doctors and hospitals for my surgeries. This should come as no surprise given my last blog post, but it has been a difficult and stressful decision, all be it one that our family has been gradually moving toward for a while. Of course, all of this is contingent on my neurosurgeon at Vanderbilt deciding to take me. So far, he hasn’t had to operate on me. I just more or less stay in contact with him so I’ll have a neurosurgeon nearby familiar with my situation in case of emergency. I’ve been with the N.I.H. neuro clinic since 1996 and hope to continue to go there for regular screenings, but it’s time to have my surgeries closer to home. I believe that we can better care for Sprout if I have surgery in Nashville rather than in Bethesda, Maryland.
I’m currently immersing myself in health and self-help books. Does anybody know if green tea is still the cure all for absolutely everything? Or has that torch been passed on to pomegranate juice now? I’m trying to eat healthy and think happy thoughts.
So that’s been my life of late—too much stress and not enough chocolate.

Bedside Manner: A Primer

Dear Dr. Whatever-your-name-was:
Let me begin by apologizing for not remembering your name. No, wait. On second thought, I don’t apologize. To be frank, I hope to never again have occasion to need to know your name. As apologies go, I think it is you who owes me one. To say you and I didn’t hit it off would be something of an understatement. Since you didn’t bother getting to know me, or even taking more than a passing glance at my chart for that matter, let me tell you a little about myself. My experience with the medical profession is extensive. My experience with the clinic at which you are now employed is equally extensive. As a matter of fact, my experience with that clinic exceeds your own. My experience with Von Hippel-Lindau disease is, I dare say, beyond your ability to fathom. Suffice it to say, I have lived with this disease my entire life. I know its nuances. I know its symptoms. I know its trademark characteristics. I know what it feels like when Von Hippel-Lindau rouses itself and strikes like lightening into the back of my head. The memory of it even now makes me cringe. Yes, I know what it’s like to live with VHL. I’ve pushed past the pain. I’ve overcome the fear. And I’ve also recognized when it’s time to stop pushing, when it’s time to submit, if only for a little while. On Friday, you, Dr. Whatever-your-name-was, reduced my life and my struggles to images from an MRI scan. In short, you looked at me and didn’t see a person. You saw an imperfection. You saw illness. And how dare you. How fucking dare you. You didn’t even ask me how I felt. You never once asked. You simply assumed. And you assumed incorrectly. Doctors who assume things without listening to their patients scare me. They scare me because that’s how things get missed. You stopped just short of saying you didn’t believe me when I told you I wasn’t having any pain. No, no morning headaches. No, no vicious attacks of vertigo. No, no numbness on the left side. You didn’t believe me because you cared more about MRI images than about the patient in front of you. Let me tell you now Dr. Whatever-your-name-was that I refuse to be treated by a doctor who does not think I’m worthy to be a participant in my own healthcare. I will be a participant. I have earned it.
Yes, my experience with doctors has been extensive, and I’ve had more than my share of experiences with doctors like you. But I’ve also been extremely lucky to have had some truly amazing doctors, one of whom happens to be the guy you work for. No, he and I haven’t always seen eye to eye, but he never made me feel like I was simply a vessel for a disease. I came to him thirteen years ago, and thirteen years and seven neurosurgeries later, I’m just about the same as when he first saw me. That’s thanks to his care and skill. I have the highest—the highest—respect for doctors, neurosurgeons in particular. I have encountered many of them, and I would classify many of them as far more than physicians. They are healers. But you, Dr. Whatever-your-name-was, the way you treated me on Friday was a disgrace to your profession. I commented to my husband on the walk to my Friday appointment that I felt better than I had felt in six years. After my appointment with you, I left feeling broken and weak. How dare you make me feel that way. You will never be a healer.
In my attempt to make clear to you how I felt, I said that indeed, pain and dizziness and surgeries were all part of my life. I know the symptoms well. I believe your response was: “You and everybody else who comes to this clinic.”
And that did it. That’s when I decided you would never again serve as my physician, even if it meant breaking off a relationship with a clinic that I have the utmost faith in. Did you think it would make me feel better to know that others suffer more than I do? Do I strike you as some sort of sadistic asshole who gets off on the pain of others? Or maybe you thought I didn’t have the right to complain since I wasn’t the worst case you’d seen that day. If so, then what you said was an attempt to invalidate my feelings. You’d just told me you wanted me to have yet another brain surgery, despite my total lack of symptoms. Did it occur to you that I might need, oh, a minute or two to wrap my mind around the idea? Obviously not. Obviously my thoughts and feelings were of little concern to you. I can’t speak about your skills as a surgeon, but based on my admittedly limited experience with you, as a human being, you suck.

Sincerely,
Kimberly

Happy Birthday to Me!

Today is my birthday. I am thirty-four years old. Thirty-four years old, and still I am a total brat about my birthday. Weeks ahead of time, I start reminding people that my birthday is coming up, and subsequently start hassling them to tell me what they got me. Michael suffers the brunt of my immaturity, poor thing. I really do feel bad for him when my birthday rolls around. He has developed something of a system though: He spreads my gifts out over several days. Two days before my birthday, he sent me flowers, a beautiful summer arrangement of daisies and lilies, then yesterday he gave me my present, which was a box of single-origin chocolates from all over the world. I read a book about the history of chocolate (because I am a dork about learning the history of things and about obscure knowledge in general) and wanted to try pure chocolate from different parts of the world. And so that’s what he got me because he loves me way more than I deserve. Then today, I’m getting my birthday cake. And today and tomorrow will be a series of dinners with family. I do love my birthday.
We got Sprout some squeaker shoes yesterday. These shoes have squeakers in the heels so that every time he takes a step, I can hear him. We paid out the whazoo for them, but they’re worth it. I think there getting on Sprout’s nerves, and I’m wondering how long it will take him to figure out how to get them off, but so far, I’m loving them. We also got him a tie-dye outfit, which is just the cutest thing ever. I couldn’t resist it. I usually don’t go in for spending a lot of money for outfits given that he’ll probably stain them and definitely outgrow them in a month at most.
I haven’t been blogging here much lately because I’ve been spending every spare minute working on a manuscript. What’s it about? Well I’m not telling. I’m not telling because every book ever written sounds lame when the plot is delivered in elevator speech fashion. Here’s Pride and Prejudice for example:
It’s about this girl whose family is kind of poor who hooks up with this real rich guy, except they don’t hook up right away because he’s a snob and she’s immature and she’s got a thing for this other guy, but he ends up running off with her sister instead later on in the book and the snobby guy helps the girl’s family out of the whole mess and … Seriously, would anyone want to read that white trash drama?
So I will say nothing about my book except that I’m writing it. I have a completed manuscript that I’m currently polishing for the gazillionth time, but I’ve set myself a deadline of August 1 to get the manuscript sent off to an agent. So that’s why my posts have been few and far between lately.
I realize that I only have a handful of readers out there, but I really want to make you handful happy, so is there anything you’d like me to be blogging about here? Anything you’d like me to talk about here? Except, you know, what my book is about?
P.S. I just finished my birthday dinner with Mom and Mark. We went to Shogun, which is not authentic Japanese food, but is really good just the same. They cook your food right in front of you, and I thought Sprout would be just fine with that since he was cool with the July 4th fireworks. Oops. Bad idea. Mom had to take him out of the restaurant he worked himself into such a little fit. Poor baby. I guess if you’re one year old, that was kind of a big flame.
P.P.S. Or is it P.S.S.? Anyway, my mom and Mark got me a set of turbo knitting needles for my birthday. And by set, I mean eleven different needle sizes and three different cord lengths. Translation for all you non-knitters: That is really super cool. The set comes with a lifetime warrantee and I can buy additional cord lengths. So likely I’ll be writing even less now since I can do a whole bunch more knitting now. As for knitting, I’m currently working on a purse, the pattern for which was designed by Starla, who taught me to knit and owns my local yarn store, Crafty Hands, and if you have any interest in knitting, you should really go in there because the people are the best people I have ever met. If Starla can teach me to knit, she can teach anyone. Oh, and I’m working on a baby blanket for Molly’s new little Allison.
Once again, happy birthday to me.

How does a cow go? You'd be surprised.

Sprout is having one of those developmental growth spurts that are so much fun to watch. He jabbers constantly and mimics’ everything I say. Not very clearly, but I know what he means. For his birthday, we got him an Old MacDonald hand puppet book, so we’ve been working on animal sounds. So far, he’s mastered the cow. Mostly.
Me: “How does a cow go?”
Sprout: “Boooooo!”
Well, that’s close enough.
Me: “How does a pig go?”
Sprout: “Boooo!”
Me: “How does a duck go?”
Sprout: “Boooo!”
As you can tell, we’ve got some work to do, but damn if it’s not the most adorable thing ever. Last night, we were all in Sprout’s room, and he started messing with the blinds on his window, an absolute no-no, so Michael told him to stop. And our son, looking completely angelic, turned around to us and said, “Boo?”
Yeah, well, I guess it had been working for laughs and hugs all evening, but it’s not a license to engage in mischief. I’m sure he thinks we are fickle, impossible beings. It is tough raising parents.

Walking and Weaning

Sproutie is walking. Well, mostly. If he really needs to get somewhere in a hurry, he resorts to the far more reliable and gravity-proof method—crawling. Walking is more of a novelty just now. And here’s something I didn’t expect: Walking is much quieter than crawling. Two knees and two hands moving hell-for-leather toward an intended goal make a lot more noise than two tiny baby feet taking timid little steps. So this walking thing is a challenge for both of us. Without a doubt, Sprout has crossed the line from wanting to sit in Mommy’s lap all the time into wanting to be down exploring all the time. There’s a whole world of things to put in one’s mouth, you see. Like I said, it’s challenging for both of us.
Additionally, he’s no longer nursing. He’s just too active for it. We were just nursing at bedtime, but even that stopped working out so well. He’s gone three days without nursing now, so I guess he’s officially weaned. He is just such a big little boy.
We watched fireworks at my sister’s house in Morgantown. Sprout doesn’t usually startle easily, so I figured he’d be fine, and he was. I’m not sure he even so much as flinched. He had a big time getting Daddy and Papaw to pull him and Cousin Carter around in the wagon Papaw got him for his birthday. And he is endlessly fascinated with Aunt Jana’s dog, Kirby. Fortunately, Kirby is good with kids. Also fortunately, Jana’s husband Travis fries up a mean mess of fish. Sprout didn’t have any, but I ate his share. Yum!
So it was a nice, long weekend. Well, it was still far too short, but that was to be expected.