Me vs. the other Me

I feel sick today...like thats supposed to surprise you, yes I know. It still is horrible, no matter how many days pass in this pain and tightness, I will never adapt fully to this lifestyle. I will never have to. Hopefully.

My joints are what hurts most now. I am on the rack. I can feel them, strapped down to boards with duct tape wrapped tightly around my thighs and knees, slowly being yanked, twisted, a giants hands trying to pull them apart. The burn. A twitch. Swollen. The tendons feel like they are frozen in fear, a false move and they will crack or snap clean. The knees trembling in a nauseating way, a sensation like small hands scraping out a more concave spot. The drills, always drilling, a burning, dull heat buzz-buzz-buzzzing away, that perks up in the joints, just when you call for a respite.

aside: (Wow. The adjectives are really flowing today.)

 It is a silent sort of battle between me and...a different part of me, I guess. It is a sort of pain that makes you want to scream nonsensical words, just to express the madness and confusion and pain inside. Nonsense is the only way to make sense of this sort of thing. It is the only thing to do, and the only rule that you mustn't break. It is a zillion times worse to give in. Honest. Silence is más mejor. 

It is dark already. I hate waking up and in a few hours it being dark...it makes me feel sort of turned inside out. Unnatural. We wake up to the sun and go to bed at night...why can't I do this too?

One Hundred and One'th

This is the big "101" post.

Wow. I've had over a 101 things to say about this. Its sort of daunting thinking about all those free-written words that I don't remember. Its strange: I had things so say...I said them, but I have no idea what I said. It is a twisted feeling. I recognize my style and word choice, yet its like someones play a trick on me, taking my words and warping them into phrases and prose.

And its no where near the beginning of April.

My mind wanders today. A butterfly, my thoughts jump from flower to prickly shrubs, to Dogwood blossoms, and Venus Flytraps. Each thought zaps me with a painful pinch as I consider the past. I try not to. I must remember that now is the time that is worth the time. I must dedicate now to the rest of my life.

Why isn't anything easy?

I met with Elaine and my teacher, Sally, at SIDES (a distance education program!). I also read my Lyme speech to my teacher which was fun!! We also sort of put together an IEP for me (individualized education program), which will help the other teachers help me by knowing what I need. Of course having no memory is a little snag I've been trying to get over, but I will share with you now my secret.

I've spent nearly all of my life in school, so don't think that I am going to miss the end of it now. So close to the finish line, do you quit? No! You put on an extra burst of speed and cross the line. I am going to graduate....I only need a few more courses. I will graduate, and then, proud as punch, walk across the stage to receive my diploma. This is "THE PLAN". A dream, really, but does it matter?

I met an incredible girl, Sara Marie, who is like my 'Lyme Twin'. Seriously, its creeping me out. We have almost identical symptoms, and of course she understand completely about the complex issues that, quite frankly, no matter your education or 'case studies', you cannot conceive. The truth is in our pain, and it is very bonding! I'm so lucky to know her. Hopefully we will get better together. Under my 'links' section, there is a link to her blog. Please check it out! Spread the Word. Pass it ON!

A Second Opinion?

A few days ago we went to an Infectious Disease Doctor in Victoria.

I suddenly feel very confident that I can become a Doctor. Already I know much much more than a Paediatric Infectious Disease Doctor in the area of Lyme Disease.

Here's an interesting tid-bit about my 'sickness'....I'm not actually sick! Not with Lyme! Isn't that great news guys *rolls eyes*? Because I have a negative ELISA Lyme test (which is ridiculously inaccurate, and well known to be), I could not possibly have Lyme Disease. A diagnosis? : nothing yet. Interesting isn't it, that they can be so sure I DON'T have Lyme Disease, but have nothing else to offer me diagnosis wise. Hmmmm... highly suspicious, don't you think?

We just talked for awhile. She examined me, rather roughly I thought, for some patient who complained of extreme, overall body pain. Nothing.

We had the whole crew there, the four of us (Nancy, Chris and Dave)...I call it 'intimidation tactics' or 'prove-ers' in my head...but it didn't really work.

I was very exhausted afterwards. Its exhausting to be in excruciating pain.

Asleep at the Wheel

I am so tired today. When I was woken up this morning, I simply couldn't get up. I felt I could have slept all day, not peacefully, but simply lounged around in bed all day. Yah, that plan sort of fell through. Awake and still asleep. My bones have dissolved-or so it would seem- they aren't holding me up too well. I feel like overnight my brain has slowly melted and evaporated in my head. I sometimes wonder if they'd open up my head if this is not the case. I know your brain doesn't have feelings (like nerve feelings, of course) but I feel certain I can feel the pressure of my brain against my head. I know that is swollen, like I maybe hit it a few too many times against the hard floor of a bathroom, or maybe just falling on carpet did the trick. Could it be bruised from those times I hit it on the glass table, a wall, a desk when I fainted?

My brain is drunk, stoned, buzzed, utterly wasted, out to lunch- whatever - and then decides to drive, which obviously doesn't work out too well in its favour. The brains a train wreck. I train wrecked.

Why is it always when I think I am going down the right road, I suddenly, violently, veer off course and start heading downhill again. Downhill fast. Is there no right path, no even road, no pristine walkway with lighted signs? No wonder my journey has taken so long, what with me taking two steps forward and then one back.

Intent of Meetings

The last few days have been utterly exhausting. I hadn't the heart to write all this, I couldn't muster up the strength. Don't get the wrong impression and think that these days were bad, far from it. Highly enjoyable, yet totally exhausting and consuming, as most important and fun things are!!

A crew from CTV's W5 (for the Americans in the crowd, it is sort of like '20-20' or 'Dateline' I think...) came to our house to discuss my fave topic ever: Lyme Disease. I was obviously shocked and flattered that they actually wanted to talk to me. It was strange having all these...strangers in the house...filming, and talking to me like we know each other!? They were so nice, Jerry, Paula, Richard, Brian, and really good about the 'no-touch' rule, and the 'I-don't-remember' issues. We just talked for a while and laughed and did normal stuff. I was feeling incredibly shitty that day, its hard to hide sometimes.

My bones are on...fire. They are hot inside, but the sort of hot that feels so hot you can't tell whether or not it is fire or ice; do you know that feeling? Its like that. It feels like some little people are drum drumm drumming their fingers along my bones, my pulse magnified in my ears to a dull bass drum boom. I can crick and crack all the joints. Pain. I forget what it was like before the pain. Maybe there wasn't a time before. I worry that there wasn't.

I hope when people see the show, they will understand better what its like, and want the changes to be made. I hope this turns up the heat on the politicians, and makes them act, like SUPER quickly! Its a wild sort of dream, which you could compare to flying through the sky or being deep underwater as a fish in another wild sort of dream.

They went with us over to Seattle, on the Clipper (oh how much fun is that boat ride hunh?). It always feels like a long ride there, across the Strait, with the fast bumpbumpbummpp of the waves occasionally. People smile at sick kids when there is a camera in her face: its funny, more staring but more smiles. Such a price, hunh? I was pretty tired - to put it lightly - when we got to Seattle. Food, movies, shower, bed.

The next day we got up really early (YUCK!!) and went to Dr. Marra's office, just outside of Seattle. The crew was waiting, and so were the doctors. Dr. Harris was also there, from California! We waited a REALLY long time there. In total, we were at the office from 11-5, which is longer than I usually do ANYTHING (ha including sleep). We met a ton of other incredible patients of the doctors, and exchanged stories and shared sympathy. Its good to meet other sick people, although I of course wish that they weren't sick at all. The best part is knowing people who have gotten better and are getting on with their lives. Jealous.

The high points of the day were talking to people, and eating Thai dinner, and seeing the doctors. They make me feel sure I will get better, and am getting better. They are both so gentle, which makes a marked change from some of the other Canadian doctors I saw. They changed some of my drugs around, and of course my supplements. Switching is hard for a few days , till your body adjusts.

I'm so tired and fidgety today. Can't sit still. Can't focus. Sorry is this all gibberish?

I'm glad we're home. And so incredibly happy that CTV is bringing up the issue of Lyme disease!! Thank you guys so much! You were so wonderful to hang out with! I hope that finally people will listen up and listen well. I hope there is change.

Commanded Musings

Today 5 people came to visit and i think they are from somewhere news like? there are two nice people in this room, and they have pretty sweet cameras i must say. its quiet except for the clicking of keys, their tattoo the only sounds, save for the buzz of electronics. Nancy is here which is nice. they just took away my sticky notes so now i don't really know what is going on...i don't really know who is here but i guess i will just sort of get used to that. they are filming...



I'm going to Seattle pretty soon. unfortunately, so i hear, there will be no shopping involved which is such a shame really. i love the ferry ride over...the waves and the fast moving boat.
or by air with the incredible view. i hope if we do fly i get to sit in the cock-pit again. its so cold up there though.



its a warm day, warm enough not to quite warrant a sweater.

Mr. Graham

Today was a very hard day. I think we've reached the tissue quota.

Our beloved middle school prinicple, David Graham, passed away over the weekend, after battling cancer for the back year and a half. I can't really find the right words to express how...I feel. There aren't words.

David always smiled, as though his face naturally relaxed into a bright, sincere grin. I didn't understand his need to constantly smile. I was young and didn't understand why the smile, just like the Mona Lisa, it was a mystery to me. I think now I understand better; that life is worth smiling about. Mr. Graham had a positivity and engery that I think we all aspire to, but luckily he was always willing to share this gift with everyone. I don't think I've ever met anyone or ever will, who could approach anything with such openness and sunniness. And selflessness. He's one of those people that people don't forget. Mr. Graham, I miss you very much.

Mr. Graham sent me this quote and no one suites this quote more than him and it says all that I could wish to say:

“To laugh often and much;to win the respect of intelligent peopleand the affection of children;to earn the appreciation of honest criticsand endure the betrayal of false friends;to appreciate beauty;to find the best in others;to leave the world a bit better,whether by a healthy child,a garden patch or a redeemed social condition;to know even one life has breathed easierbecause you have lived.This is to have succeeded.” ~Ralph Waldo Emerson

Another Busy Day

Today was okay. Again I'm so tired. I don't remember a time before brushing my teeth was exhausting, a time before eating was difficult, and a time before playing the piano would make me want to take a nap. I'm sure there was a time like that, only its too far back in my memories.

I went to SIDES today to talk with my teacher about my school stuff. She's so nice, and made the work real fun! We worked out a whole bunch of differnt ways for me to do the assignments, taking into account the 'Lyme Factor'. lol.

A friend I've known forever (and havent seen in forever!), Pelle, came to visit me too. I was super tired, but still managed to laugh and have fun! It's nice to have people visiting, it cheers me up and makes me feel alot more normal!

I'm too tired to write any more....

Full Day

Boy am I tired. I went to TWO classes today at school. I am wiped.

Went to regular choir first, which was really fun of course. I forgot to write down what we sang but I'm sure it was fun. Tuesday is our full hour rehersal, so it is like a real block! Then I got pushed/shoved/driven to Spanish class, which is always fun! We watched a movie (a very strange movie at that), which doesn't take much concentration at all. Sooo basically I didn't really do anything seriously difficult or challenging today.

All Possible

Today was a very special day. I went to real school AND a real class. Whoa. Careful now. Next you'll hear I'll be globe trotting. Small steps at a time. Steady wins the race. You all know this.

I went to Spanish, which is such a fun class, and always has been. Once you hit grade 12, you are no longer 'required' to take a language, so the people in a language class really really want to be there, which is a nice change. I love speaking Spanish. I still can, which surprises me, although I get my 'you's' and 'me's' and 'they's' and stuff confused. I mix stuff up just like I do in English. We learned all about 'se', which is a handly little pronoun (I think that's what you call it), but it does a lot of work for us in Spanish.

I'm so happy to be back at school, in Uniform. It feels so normal. I don't feel as out of place, I don't stick out in a group of people I've known more than a third of my life. I love you guys! There is peace in familiar chaos.

I'm very tired though. I feel like I've been through the wringer washer the second time round, my heart is in my stomach somewhere, my stomach lost in my throat, my legs jelly (god knows where they ended up) and my brain squished too tightly against my skull. I've been reorientated. Reorganized. I feel my pulse all over, like my heart is a hammer and the blood nails driving into me all over.

I worry sometimes, that the feelings won't go away; that the pain will endure, that it will have learned a lesson about patience and endurance from its victim. I worry it will fight as hard as I fight it. A fraction of the will, even then I'd worry. But I know all things pass. I've read this in books. I've heard it said. They say that life will change and endure. I hear time heals all wounds. I know this is true, or partly, but time heals all wounds, except the tracks it makes itself through a life.