Operation CBC EBV

18 December 2008:

8:30 AM

I am asleep. An alarm is set for 9:30. This allows me precisely one half-hour to wake, dress, and eat before leaving for a physical therapy appointment. I have no plans of being awake until that time. In fact, I have no plans whatsoever. This is due to my being asleep.

My mother places a phone call to Pediatric Associates of Ellicott City, inquiring about test results to see if I have mono. Since I am eighteen, she is unsuccessful.

9:00 AM

My mother, believing the hours before eleven AM to be the most crucial, wakes me. She requests that I call the Pediatric Associates of Ellicott City myself to get the results that she could not. I decline.

9:05 AM

My mother attempts to wake me again, although I have not yet fallen back asleep. I am tired. This is due to my lack of plans to be awake. Too fatigued to yell downstairs, I place a call from my cell phone.

9:07 AM

The house phone rings. My mother answers. This exchange follows:

Krissy: Why, mother, WHY, did you think it was a good idea to wake me up half an hour before I NEEDED to be up to ask me to make a NON-ESSENTIAL phone call that could just as easily be made half an hour later?

Carmen: Well, I just thought...

Krissy: WHY?

I hang up.

9:10 AM

I am unable to fall back asleep. I go downstairs. I ask for the phone number to the Pediatric Associates of Ellicott City.

9:15

After calling the Pediatric Associates of Ellicott City, I am still on hold. I tire of listening to smooth jazz selections from the Nutcracker Suite. I abandon my mission and get ready t go to physical therapy instead.

9:30

Afraid of the Pediatric Associates of Ellicott City returning my phone call while I am out, and risking their refusal to leave my test results on the answering machine or with my sister, I hatch a plan.

Krissy: Kylie, I have a spy mission for you.

Kylie: ...

Krissy: If the doctor's office calls while I am out, TELL THEM YOU ARE ME. They will give you my test results. WRITE THESE DOWN. Okay?

Kylie: Okay.

11:00 AM

I return home from physical therapy.

Krissy: KYLIE! Come down here and give me your spy report!

Kylie: Oh, um, well, okay, so, I told them I was you, but, then they wanted to know what the test was for, but I didn't know...

Krissy: Did you crack?! GOD, Kylie, you ALWAYS crack! You are a TERRIBLE spy!

Kylie: I didn't! I didn't! I stuck to the plan! I told them the fax number of your cardiologist, but they still wanted to know what the test was for. So, I just said I needed to ask my mom...

Carmen: You did the right thing, Kylie. WE'll just have to call back...

Krissy: You failed your spy mission. The man from Uncle would NOT be proud.

Kylie: I was given faulty intelligence!!

Krissy: There are no excuses for failed spy missions. I am going back to bed.

2:00 PM

I wake from my nap. My mother has attempted to call the Pediatric Associates of Ellicott City twice more to get my results. The first attempt was unsuccessful. On the second try, the mission was a success.

I had mono.

A conversation we needed to have

Hey blog. What's happening? What's goin' on?

Nothing much.

Really, though, how have you been lately?

Ugh. Things haven't been so swell. It's like I don't exist or something....

What do you mean?

Well, I hardly ever get new posts, and when I do, I feel like only three people ever lay eyes upon them. I just feel totally underappreciated. But whatever.

No! Not whatever! That's a valid feeling, blog, and I'm glad we're talking about it. Truth is, I've always thought you deserved a larger readership.

Really?

Really.

Hmm. I mean, thanks and all, but things are still the same....y'know?

Yeah. I know.

But hey, it was good talking to you...just saying it helps, I think.

I'm glad.

Well, I guess I'll see you in like a day? A month? I never really know with you, Krissy.

I know, blog...I'm working on it....but you will see me. And hey, maybe sooner than you think.

I'll believe it when you post it....

LR Update!

So. I forgot to tell you earlier, but LR sort of talks to me now! An actual conversation follows.

(I walk into class on a test day, to find LR there, flipping frantically through his notes)

Me: So did you study for the test?
LR: A little. (scans notes for highlighted sections)
Me: Is "a little" what you're doing right now?
LR:Nope. I actually studied.
Me: Wow. That's more than I can say.
(LR is still looking at his notes)
LR:.....


Exciting, right? I think we are well on our way to being best buddies.

What an eyesore

"Oh, how bizarre, how interesting and bizarre..." says Dr. Tong, examining the technician's findings. I'm sitting, slightly elevated, in an optical exam chair. Dr. Tong leans over charts filled with measurements (of what? I don't know) and my mother wrings her hands nervously. "Well," he says, "you have fourth-nerve palsy." I lean back, and for a reason I cannot recall, mutter "I gots me some palsy." to myself.

Dr. Tong continues, explaining exactly what the condition is. To paraphrase, a specific nerve/muscle combination that controls my left eye is screwed up. He stands up, takes a series of prisms from a drawer, and walks over to my mother's chair. "Using these prisms," he says, with a precise and oddly-emphasized English characteristic of non-native speakers, "I will simulate for you the way Kristen's eyes see the world." He lines up the prisms and holds them up to her eye. "Oh, my," my mother said, screwing her face up in concentration. "How on earth does she..." Her sentence goes unfinished. Dr. Tong removes the prisms and asks her what she saw. "Well, everything was doubled," she began. "But not just that. One half of something would be over here," she gestured to her left. "and the other half would be somewhere to the right and above it! I don't know how Krissy possibly sees." Dr. Tong nods. "Hold on," I say, "I don't see like that. I mean, I'll get double vision when I look in certain directions, but it's nothing so drastic as that." "Ah," Dr. Tong turns to me, "But it is!"

He begins pointing things out about me, things like my crooked glasses and the way I tilt my head slightly to the left. My mother tells him that the glasses are nothing, that I've always had crooked glasses, I have since I was in preschool, and so that couldn't possibly indicate anything. Growing more passionate with his speech, Dr. Tong responds. "Precisely!" He takes out some angle-measuring device and, holding it up to my glasses, mutters a rapid series of complex measurements to himself. "Her glasses are crooked at the exact angle to partially alleviate her condition! And you say they have been like this since she was young?" "Well," my mother says, "We always thought she was just rough on them." "Kylie always thought I had crooked ears.." I add. Dr. Tong is fascinated. "It all makes sense." he says. "The way you have bent them is therapeutic to your eyes. It moves things for you. Do you remember how your mother said things looked split through the prism?" I nod. "Well, by tilting your glasses, the lens moves things closer to where they should be. It is remarkable though, for a patient, even subconsciously, to have made these adjustments, especially from a young age!" "Oh. But if that doesn't entirely remedy my condition, how come I see fairly normally?" "Well, you tilt your head to the left, and while it is only a slight tilt, it contributes to the effect of the tilted glasses. Aside from these outward remedies, the rest is done through muscular compensation. You say that you have been diagnosed with Chronic Fatigue Syndrome?" he asks. "Well, yes," I answer, "But I think that has more to do with the Ehlers-Danlos* syndrome than anything else..." "This may be true," Dr. Tong continues, nodding, "But the muscles of your left eye are working five, perhaps more, times as hard as your right eye in order to straighten out your vision. While it does not seem like your eyes could make you feel tired, this could be a major contributor to your already existent problem. You may not feel strained at this point in your life, but somewhere down the line, perhaps sooner than you think, the constant fight to see will take a toll on you. It will be too much." My mother looks at me, but I don't quite know what to say. "Furthermore," Dr. Tong continues, "your head tilt is dangerous, especially since you have Ehlers-Danlos. Over time, the vertebrae in your neck will stop looking like they are discs, and start looking like they are wedges. Your bones will change shape." "She's already in physical therapy for her back and neck!" my mother blurts out, looking overwhelmed. "Well," Dr. Tong says, "Let us explore the treatment options."

I sit back, waiting for the expected round of drugs that usually comes my way when doctors discuss my treatment options. "You have three options." Dr. Tong begins. "You can have surgery, wear prism glasses, or do nothing. I strongly warn you not to do nothing, because while it may not seem like an insurmountable challenge to overcome right now, fighting this disorder will only become harder for you. Surgery is your best option." "Well, we don't really want surgery." my mother says. "What are the prism glasses?" "The prism glasses use special glass, prisms, to shift the problem. You must be aware though, that the problem is not corrected, it is merely shifted. As Kristen currently sees, her vision to the right (with glasses) is fine. The center is mostly fine, but she occasionally sees double, and her vision to the left is awful. What prism glasses will do is shift the problem so there is no problem in the middle, less problem to the left, but the right, where there was no problem, will now have some problem. That is why I recommend surgery." Alright, but exactly what does the surgery entail?" my mother asks, clearly unsure of herself.

"Well, we don't actually take the eyeball completely out..." says Dr. Tong.



And so it looks like I'm getting eye surgery pretty soon. (I don't know how long it takes to get an appointment.) It also looks like I gots me some palsy.

My mother thinks I'm breaking up with her

So, yesterday was Mother's Day! How nice. My dad bought flowers that Kylie and I pretended to have picked out for her, I made her favorite kind of cookies because I was craving them but didn't say anything, and, oh yeah, we got in a huge fight.

The thing is, I had no idea we were fighting.

I stayed, aside from going downstairs to eat/make food, in my room all day, as I have for the past four days since returning from the hospital. My head hurt, and due to various side effects from various new medications*, I sleep for at least 16 hours a day now. Anyway, Sunday. At lunch, when seated with my family, my father kept asking me questions about how I felt. Not, "Does your head still hurt?", but "What emotion are you feeling right now?". Gee, Dad, how about "Pissed off"? This is because, since returning home, my father is convinced that I am suicidal, depressed, and made up my heart condition and seizures to, I don't know, why would I make that up? So all he had done was ask me, "How are you doing... emotionally, I mean?".

Here I must deviate again, so that you understand why this question, coming from him, pisses me off. We are WASPs. We don't hug. We don't even brush shoulders when we sit next to each other on the couch. I haven't told my parents that I loved them since I was six years old. We are cold, socially akward, WASPs. We DO NOT talk about our feelings. We don't talk about anything but work, school, redecorating, and the occasional anecdote. Now, when my father thinks I'm going to kill myself and faked unconciousness that resulted in a four-day hospital stay and the discovery of a medical condition that caused my unconciousness (yeah Dad. Just kidding! My heart didn't really stop beating during that test, I faked it!Haha!), now, he wants me to show some emotion.

So I was mad at him. And so I mumbled "fine" and continued eating. My head hurt, still, and so conversation, especially this one, was not really something I wanted to take part in. I sat in silence, save for a few good-natured remarks about my sister's lack of aptitude in the area of handling cutlery, but they just my usual, sarcastic, well-recieved bits. You know, like, "Kylie, unlike the Spainish members of the royal court in the sixteenth century, you should by now be familiar with the fork and how to use it, as it is no longer classifiable as a new invention". Stuff like that. Kylie doesn't recognize it as nasty or intentionally harmful, nor does anyone else who at all knows me. My mother though, couldn't take it. Sheleft her plate, half un-eaten, and went upstairs to cry.

Unaware of why she left, I continued eating, then went back to my room to sleep for four more hours. All this time, I had absolutely no idea that she was upset. The only thing that could have created friction between us in the past day or so was an incident on Saturday night, in which I had an episode, passed out in the living room, and came to while she was yelling at me for sleeping with my face in a book. Confused and shakey, I started crying, she yelled at me for sleeping on my face and crushing my glasses, my father came in, knew that I had been unconcious and not sleeping, and told my mother to calm down. He asked me if I was stressed, because he thinks I have episodes on purpose to be excused from my responsibilities. I said yes, because after awaking to my mother literally yelling in my face for sleeping, when I had absolutely done nothing wrong, I was kind of stressed. I told him this. He said, "I know, but your mother just was stressed so she started yelling. This whole business of yours has been very hard on her, you know." And so, choosing to ingnore his talk of "this business" of mine, and just how hard my medical woes, including chonic pain that triggers my heart condition, was on her, I nodded and wobbled upstairs to my room, to sleep.

Apparntly this was our falling out. I had no other incident or words to go on, when Sunday evening my father approached me and asked "Are you mad at your mother?". I answered no, out of honesty, though I cannot say my voice was not tense with resraint. I had had it with his attempts at a heart-to-heart, and was trying not to let my anger towards him blow up into something unmanagable. "Well, then," he said. "Are you being mean to her for a reason?"
"What?"
"ARe you purposefully being mean to her on Mother's Day for a reason?"
"What did I do?!?"
"All right."
"What???"
And he got up and left the room.

My mother has not spoken to me since. She only gives pained looks, and turns away at the sight of me, then goes to read her eight or so "Thinking of you" and "I'm here for you in these hard times" greeting cards from friends. (NOTE: I have two get-well cards. I don't want more, but, why does she have eight?)

So that's it, kind of. My mother is mad at me, I'm mad at my father, and I can't leave the house for another week. Oh, and did I mention she's having her friend babysit me? Anyhow, life kind of sucks here, with the exception of feta, but I'm dealing with it.

*Um, I was going to go into it, but it's too long. Another post, guys, another post...

Quality time

"Zinzi, I hate this."

Zinzi trots over and stands in front of me. I look inside my house, barely able to make out my living room furniture for the glare. I am sitting on the steps to my back patio that come out of our dining room. The steps are green, and our patio is the faded, whitish color that asphalt gets when it hasn't been properly maintained. I look down at my dog, then again at the window, squinting. This time I can see my grandmother sitting inside, reading a book, and my grandfather stooping over a newspaper propped on the footstool. Zinzi sits down.

"What will you do, Zinzi, if you don't make any new friends in Maryland?"

She inches towards me to rest her chin on my lap.

"What if the other dogs there are all just a bunch of golden retrievers and labaradors? What there aren't any poodles, or Spainish water-dogs, or cumberland spaniels? What if they're mean to you?"

Zinzi snorts.

"Awww. Well, we will come bakc and you can visit your friends from the pooch parlor, Zinzi, don't you worry. Even if the doggies there aren't nice, we'll come back to see your puppy friends."

Zinzi sees a bird and chases it. I sit still, by myself now.

Zinzi can't come back for visits. They don't let poodles on airplanes. As much as I want to tell my dog that she will get to come back as much as she wants, and that she'll be happy, it might not be true. Zinzi will probably never see her puppy friends again, quite frankly. Zinzi, though, will get along just fine. You see, Zinzi likes other dogs. She does not think she is too good for some, or dislike the nature of others. She wants to be friends with everyone. She is very nice to other dogs, and does not cynically disapprove of their decisions or motivation. Zinzi will be very happy.

"Come on, puppy, inside we go."

She bounds back and grins at me, in that goofy way that only a friendly dog can, and trots ahead of me to the door.

"Go on, Zinzi."

I hold the door open and she walks in. I follow her, and sigh.