Journal Entries

The following chronicle my recent health issues. It's foolish for me to think someone might be interested in reading them, but I hope maybe someone will read them and think of something. 1

First, you should know that I'm only sixteen years old, an artist in nearly all forms of the word. But without further ado...2

I feel so tired these last few days. More like physically drained even. I don't know what it is but I just seem to lack my usual strength lately. And it's not some kind of thing where you go to bed an hour earlier and you're fine the next day, I've tried that. This is a deep loss of energy that seems to get worse and worse every day.3

1/10/08:4

Still seems to be getting worse, today around lunchtime I started feeling better but in the morning it was worse than ever.5

I keep getting headaches, sometimes I just start at some point on a wall, or the floor, without blinking. I can barely talk, it seems like too much effort. Horrible, I've never felt like this before, I hope it passes soon.6

1/16/08:7

Almost a week since my last update and I've only gotten worse since then. I could barely walk in gym yesterday, it was pathetic. I'm pretty sure by now that this isn't just some little passing illness. Something is wrong. It looks like I'm having blood work done tomorrow, maybe I'll find out then.8

1/28/08 9

I wrote a poem, I don't know what to make of it other than it describes a bit what I've been feeling. I started off with the intention of just writing another Poe-ish poem, but it ended up turning into complete insanity. I think it's appropriate10

Late nights I sit, chair by the fire, with burning desire.11

Drunk on the darkness12

Tipsy on twilight.13

I am alive, oh so alive14

and I am dead, dead as the stone walls enclosing me,15

holding me, the bright embers scolding me.16

Not a sound punctures the silence, no sight interrupts blindness.17

I'm alive, I am dead, I'm alive, I am dead18

I am, I am, I am19

A sound descends20

Just one notes, hanging in the air21

Teasing, pleasing, easing.22

NO!23

Maddening, maddening!24

And then another, below it25

and then another, above it26

Soon a symphony is playing27

And it's madness, madness28

Chaos, Anarchy, Blasphemy, Suffering!29

Head is spinning, ears on fire, mind BURNING30

Oh God!31

Then one note, singing, singing, singing32

Soothing, Gentle, Beautiful.33

It fades, It's gone34

I'm alone.35

I am dead, I'm alive, I am dead, I'm alive36

I am dead, dead as the stone walls that enclose me37

The embers that no longer scold me.38

Smoke is all that is left, gone with the first subtle breeze39

departing, fleeting, flying.40

Gone, Gone, Gone41

(Make of it what you will)42

2/2/0843

Things have continued to get worse, my bad moments are becoming more and more frequent and worse. I'm having trouble walking by myself and my mom has been holding me up to stop me from falling or collapsing. These are indeed my darkest hours. And yet I just had one moment of true peace, playing the first movement of Beethoven's Moonlight Sonata, it was beautiful to hear, everything I've felt for the last month now poured out into music. I have heard the Angel of Music tonight.44

Tomorrow hopefully I'll be getting a lot of tests done, possibly an MRI, maybe I can finally have some answers.45

2/4/0846

Well, I still feel awful, and the antibiotics for strep don't seem to be helping at all but there is good news.47

I'm finally beginning to work seriously on my new musical I Will Repay based on the novel by Baroness Emmuska Orczy. The story takes place during the French Revolution. It starts off with a duel between a young Vicomte de Marny and Paul Deroulede, a respected citizen, almost untouchable by the Revolution. When the Vicomte is killed his dying father makes the Vicomte's sister, Juliette, the main character swear to ruin, dishonor or destroy Deroulede.48

One day she provokes a riot outside of his house, where he rescues her. She becomes his guest. She falls in love with him but if mindful of her duty to her father, her brother and God.49

I've already given too much away but it's going to be something great. Only problem is that it will take me years to complete.50

2/8/0851

I'm sorry for the continual depressing journal entries but I must get my thoughts out, maybe it's cruel of me to do so where others can read it.52

Things have taken another turn for the worse I'm afraid. My head hurts constantly now but that's not the worst of it. I feel as if someone has pulled out the rug from beneath my feet and sent me tumbling down the blackest of pits. I am a swimmer with a cramp, struggling for a breath of air. There are things I cannot even begin to say to myself now, much less write down in a journal.53

I must be strong, I must regain control and find my way back to some sanity and conquer the demon whose grip I surely am in now. I know that somewhere within me is that person with my strength and my courage. I have to know I HAVE TO KNOW what is going on with me! Give me something to defeat, something with a name, for an enemy with no name is near invinsible54

2/14/0855

sigh, I ended up in the emergency room twice this week, Monday and Wednesday. Loooooong week. The first time I was just having some spasms throughout my body, don't know how to describe them but they were these strange convulsions, almost like a bunch of mini seizures. So I there until about 11:00.56

Yesterday was much much worse. I starting having these spasms again in Spanish class and I stumbled down to the nurse. I lay down on the bed and they got really bad. They were constant and much more powerful than the first wave on Monday. I ended up out of breath from them. It was like when you see pregnant women in labor on tv.57

They lasted more than an hour and my hands went numb and tingly from hyperventilating. I was really scared, I was sure I was going to die. Luckily they stopped once I managed to get control of my breathing.58

No answers yet, but they did an EEG, to see if it was seizures (even though we all knew it wasn't) and that came back negative too. I hate how I keep going to the hospital and getting one test, waiting for hours and being sent home.59

Oh, funny story though. After being in the hospital for hours and having not gone to the bathroom since I woke up I told a nurse that I had to pee. Well, rather than unhook me from the million and a half machines I was plugged into, they gave me a oddly shaped bottle and a sheet, closed the curtain and told me to do my business. Well, trust me, it's not easy to pee lying down. It just doesn't work that way!60

Anyway, that was my week in a nutshell. Happy valentines day.61

(and don't worry about me, I'll be fine)62

3/10/0863

It's been about a month since I've posted any journal entries. I have these uncontrollable spasms now that have on occasion knocked me off my feet. They don't really hurt but they are very uncomfortable. I really hope that they are temporary. I'm also beginning to have difficulty walking, my knees giving out. I thought this was supposed to happen when I hit 87.64

I'm holding on to the hope that this is nothing more than Lyme disease, and perhaps it is, my first lyme test was inconclusive. I'm still waiting for the second one. I feel what will happen if it's not lyme. What it might be and what it may mean for me.65

4/6/0866

I'm getting weaker every day, now I can barely walk and even then I fall so often one could hardly call it walking anyway. My whole body shakes uncontrollably and these spasms... I crawl up the stairs on my hands and knees and go down them on my butt. I can't safely walk up them anymore. It's funny, I used to sprint up them, taking two stairs at a time.67

I don't know how much longer I can take this, I should have had answers months ago and yet I still have nothing. No doctor can find what's wrong with me. One even said she had never seen anything like it in this country. Last time I talked to my doctor he said he was going to do some research based on the latest information. That was almost two weeks ago and I haven't heard back from him.68

Tomorrow is the 3 month anniversary of when this all began. So suddenly, at sixteen I've lost my strength, my spirit and god knows what else may come.69

I try to be optimistic, it's who I am. I keep telling myself to be patient, they'll find what's wrong and cure me and I'll be back to my old self but so far all I've had is disappointment.70

I can't think of anything else to say.71

4/9/0872

So this one seems to think it's all in my head. I say that's what they say when they don't have an answer in their own field. I know she's wrong. She didn't even listen to me, she asked me how long it was going on for, I said three months she said four, I corrected her, then it was two months, and I corrected her yet again. All of a sudden She asked me questions and then didn't let me answer them.73

Besides, I know that it's not just in my head. I didn't make up these symptoms, even subconsciously. I'm not under stress, I'm a very laid-back, easy-going guy. I'm lucky enough to find joy and beauty in everything in some way or another. So tell me, why in the world would I feel the need to not be able to walk around? To give up things I love doing, to feel so weak all of the time. Why would I feel the need to hurt my parents, my grandparents and all those who I love and love me by doing this? And why in the name of god would I feel compelled to crawl into bed at night, shaking, my whole body convulsing, not sure if I'll wake up?74

IT"S NOT IN MY HEAD! THERE IS SOMETHING WRONG WITH ME AND I WANT ANSWERS NOW!