La Belle Dame Sans Merci

I am angry. 

I try very hard to not let these emotions get to me, but I am angry.

Welcome into my little meltdown.

I am angry at karma, fate, god, nothing?  What I did to deserve this? Does everything happen for a reason? Bullshit.

I understand I am very sick. I get it. I'm not one to wallow in the pain, I'm fighting it, without painkillers thank you very much. If you read my other entries you understand my fears.

I am angry that I can hardly go to the bathroom myself. I am angry I can't cook, I can't DO SHIT ALL. Understand this. I CAN'T do it. NOT WON'T.

 People, including me, don't understand this hell, so they get angry and make up what they have to.

People are disappearing. 

Fine. I get it. I'm not going to chase. Do whatever you need to. 

I am angry that someone very close to me is already grieving my loss. My physical loss, I am already almost dead to them I suppose, I am not angry at them, but this hurts. It hurts like hell. There is nothing I can do but be there, but I can't be. I can't be there when they are grieving me. How fucking confusing is that. I miss them. Greatly. I want them back.

When did I stop being a person with feelings? I still like to be asked how I am doing, you know it's not going to erupt into a competition or a bitch session. 

I want to yell - there are 17 elephants that made their home on my chest, my ribs are out of whack, I have twisted knees, my feet and shins are a write-off, my spine is being ripped out mortal kombat style, yet still I can feel it being shredded by a razor. My shoulders are being ripped apart, my back is disappearing. That is just the start.

But you know me, you know I won't. 

People are still disappearing, those I never thought that would. Have the respect enough to talk to me about it. I'm not reduced to a potato yet. 

More importantly, there are people stepping up. Somehow, and I believe them when they say in it with me for life.That is invaluable, please know how much that means to me.

Whether that's 7, 3 or 1 year or less. I thank you. You help keep me going. 

I am angry. 

I am hurt.

I am scared.

I am lost. 

I am love.

I am me.

High Priority

A case worker paid a visit today, a sweet grandmotherly woman that assesed me, my status of health and offering  more assistance with the non-profit program she is affiliated with.  I'm now on high priority for an Occupational Therapist. I'm on high proirity for a hospital program that will take months to get in even still. 

She asked pages of questions, can I cook, can I use the bath, can I use a walker. Everything as we went down the list was another slam. I'm really trying hard to accept that I can't do simple things - at all for myself. I'm trying hard to fuck that pride over and over.

I'm sick. I am so very sick.

We've been over what I've lost, and it seems to be more. I was in the meeting for almost 2 hours today, in the living room, and doing nothing but sit on the couch and answer questions. I wasn't alone, luckily. As the pain continued to increase my thoughts get very cloudy. I feel like I am swinging in a giant ship that is going through mud and being hit. Over and over. I was pulling all my energy to try not to look like I was swinging, but I don't know how successful I am. This happens daily. Being awake is pretty overrated.

In addition to the aids that I spoke about already, she offered and really is pushing that I get a Personal Support Worker. So someone to help me up, bathe, get dressed and put something in the microwave. They are not allowed to prepare meals, or do housework, but laundry twice a week is offered.  She also offered Meals on Wheels, which is a great program but I don't think would work for me for many reasons. The deliveries are at noon everyday, and I have so many allergies to foods that I think it would be too much of a risk. The Physical Therapist can offer "Energy Conservation Techniques."  The Occupational Therapist can offer large rails so I can get out to the living room safely.

She is also pushing that I get a Life Line pendant. Yup, I fall and I can't get up. 

Slam - I'm not a ballerina anymore

Slam - I'm 36 years old.

Slam - I don't go outside. 

Slam - I need another transfusion ASAP. 

My feet go from white to blue to red. My ribs are stabbing, I twisted my knees. My legs jump and spasm. My body is on fire. It never stops. I hear I'm High Priority at every turn. I am trying to be strong, but the fact is,

I'm sick. 
I'm so very sick.

The dancer, the social butterfly and the tv production star.

Time means nothing now. Sometimes, it's really damn nice too. 

It's rather freeing in a sense to not be a slave to the clock. It's a very strange and different feeling, as I have always had my own special relationship with time.

My mom taught me the lesson of punctuality, and to this day, it is important to me, however, I dread making plans of any sort because I have no idea if I can fulfill an obligation, as much as I want to.

Time is a dancer's best friend - from music, to the 8 counts repeatedly, to something I instilled in my dancers too, to respect the time and how to let it work and help them in training and as performers. 

The famous '5,6, 7, 8' is magical - and what some people don't realize is that it is not just catching the beat, it is much more than that. It is to centre, to prep, to BREATHE. There is no random time for the 8 counts, it's there for a reason. On stage, it is also a thing of beauty. Lights, curtain, 5678 and GO! 

The other relationship I had with time was working in television. I had a few Production Assistant positions from ENG (electronic news gathering) for the field to the live control room.  The control room is also it's bit of magic. That is another gift I am so happy to have experienced, it was exhilarating.

 I was in the control room for midnight news broadcast.  I learned in preshow that the sports director needed to pad 2 extra minutes from his runthrough, I learned what was good material to cut if we were going over. It's not a job for the shy, while the director runs the cameras, the PA's run everything - everyone depends on the many time counts.  I had a stopwatch, a digital clock, an analog clock and yes, sometimes yet another stopwatch, each tracking time for many concurrent items. 4 clocks, constant countdowns, constant restarting. It was alot of stress, and I loved it. Half the time I never knew what stories were on the show because each item was a time code. 

I had such a relationship with time, I had a hard time not counting in 8's and 60's. I still do. When I was driving, and even just before blackouts started I would get gas and often stop it at $__.59 and then have to think about it to get to a round number. It was a pain in the ass in winter.

Time means nothing to me now, I sleep whenever I can, I eat whenever I feel up to it. I love the overnights too. Somehow it's so peaceful, finally making it through yet another tough shit hole of a day - just is a celebration. The peace is so welcoming, I WANT to stay awake and sleep all day. The days hurt much more. I understand that people don't understand my time now. It is still shocking that some think I should have a 9-5 schedule. I'm a slave to my body, I crave the night. I crave it hard. 

I ask you, would you not want to do the same? It's a long day in the day, can't do much of anything for myself so why push myself when I really can't? 

I am not lazy, I swear it. I still have a high work ethic, but I am being attacked hard. Life is not easy and the little things are now giant things to deal with.

I have always had a love affair with the nighttime, it is magical. 

I was a social butterfly. I'm just a wounded butterfly now.

Time means nothing. It just is now.

There, I Said it. Fuck Pride.

In the Face. Jealous much? Yeah I thought so. I've taken the loss of Independence very hard. I have had trouble walking since December of 2006, then got worse and worse. I am now in a wheelchair almost fulltime, from the pain that hinders me for walking.

I started to notice the losses almost right away, but god damn I fought it. I would get to know that emergency brake very well. If I didn't have the strength to push the brake all the way at stoplights, I put the car in park on the reds. One day in winter I was driving up a hill and my right leg had a life of it's own, scared the living hell out of me, luckily I still was able to think fast and not panic.

The biggest loss of simple things came all at once, no driving, (partly afraid of the blackouts but it hurts far too much), taking a step or 4, getting any food and drink is impossible for myself, often I need help in the bathroom too. I can't shower on my own. I can't shower period, but still need to be held and helped.

I was well taken care of in San Diego all winter by my dearest friends, and am back home now, being taken care of by the man when he is in town.

Last weekend I took the redeye from San Diego to Newark. That was the easy part. I had a jackass of a Personal Assistant. This is where I was hit over the head with my lack of Independence.

The PA was very rough with me on the airplane chair, to get to the wheelchair. He was harsh and fast and I in teary eyes asked him many times to please
be gentle, I am in alot of pain. He tried to get me to take the shuttle. He wasn't getting me so I started to talk like him.

PA: "Shuttle YES"

Me. "Shuttle No!. Shuttle stairs"

"Yes Shuttle Stairs. "Look at me, I can't walk".

Due to not taking the shuttle I had to change terminals, which entailed going outside, a skytrain and going through security, for the second time. Continuing through the terminal, he leaves me at the gate. However, he didn't lock the chair, nor help me get in the normal people seats. We argued because he was taking the wheelchair, (I had the chair every other time for all layovers), he tried to convince me one stranger would help me, again I had to say look at me, I can't walk.

PA: "You okay you okay." as he's leaving me.

"Not really".

Thank you very much Newark Continental. Your letter is forthcoming.

Upon my return, I really can't do anything for myself. I can dress myself, but only in soft things. I really miss cooking.

I can't go out to get anything for anyone. I am still self conscious in the chair, for the staring.

I don't Look Sick, but I look as though there sure as hell is something wrong.

My muscles have atrophied, I'm still about 90 pounds. I fall.

I was never one to take things for granted, and I am grieving the losses daily.

This disease is evil. I should be at the top of my profession, I am only young still. I suppose I just hit the top early?

Fuck Pride, let it go.

Dance like EVERYONE is watching!

My mother always says I was dancing before I was walking. Hell, she says I was dancing in womb. All I wanted to do was dance, music was all over the house, it was such a gift to appreciate all kinds of music, very young.


I started my first dance classes, tap, jazz, and baton. The tap recital piece was to 'Short People', our costumes were little white pants, suit jacket and top hat. One of the girls never closed her top buttons. I thought she was a slut. I was 5. My mom asked me if I wanted to take other things for a session as she was a dancer too and not wanting to push me into her direction. I was horrible at skating and my father fashioned a crash pad for my wee butt. I took gymnastics, which I liked, but still I just wanted to dance.


I was invited to a pre-professional program at 12, Jazz, Tap, Ballet, Lyrical, Modern. We were also competitive which I thrived on, and the technical exams
were hard, but I consistently ranked at the top of each style in Highly Commended. Feeling your body work, move, be alive - so freeing. To do the pre pointe and pointe, I was in heaven. Luckily I was a rock and roll ballerina and never had to wear the pancake tutus. I leave that for the gents of the Ballet Trocodero.

We performed for the Governor General - Canada's Head of State representing the Queen. Every stage was mine, indoors or out. I danced with my heart, my eyes, my soul. Tyra didn't invent smizing. I embraced every role to the nines. At one competition we were doing a hip-hopish tap number which was groundbreaking at the time. Getting up from a floor series my left foot popped. I suddenly thought that I lost it for the team but got up, kept smiling, and finished the dance. Come awards time, I was in teary apologies to the team. We won first place. I was called out by the judges even with compliments. Noone knew I had a hairline fracture in my left ankle until after.

Bring on the triple threats, I was 15 in my first professional musical theatre company. School, dance, rehearsals, I was in it to win it. I loved it so much.
I started teaching at 17. My mom retired her pro career at 17.

That next summer was the sign of something bad. I was ill with Hepatitis A and Mono. My doctor wanted me to be off for at least 6 months, but I only took off two as I wanted to do college, TV Broadcasting. I was finally strong enough to teach again, it was wonderful. This group of little girls I had were very special to me. They started when they were mostly 5, and with me until graduation. They came with me when I opened my studio, funny seeing my kids drive themselves to classes.

I took them to competitions and wanted them to have the experiences I did.
They came to dance at my wedding even. It's beautiful to see them as successful young women today and we are often in touch. To see them embrace the power, the beauty, winning accolades - every time I was so proud.

Something went wrong. I was having migraines for months, I had a hard time understanding why I was on the floor crying because the studio was on a second floor, and often I had to slide down the stairs. I was 30. I was supposed to be happy, not anxious. I moved the studio to the community centre I also taught at the next year. Teaching a ballet class a changement - I landed wrong.
My feet were swelling, and it hurt so much. I had to stop teaching right then.

My doctor took 3 months to do blood work. These tests changed my life. He diagnosed me with lupus. He was a sweet grandfather type and cried with me because he knew what losing my dance career on a dime was going to do.

I was 33. It's not very nice to take the feet away from a rock and roll ballerina.