May 2010 archive

The Jazz Night

It used to be the coolest thing to sing at Herman’s. It has the feel of a real Jazz Club; posters of the shows of the famous people who have played there (imgaine seeing a late-night show of Wynton Marsalis solo), cramped room, tiny stage. Last night it was particularly crowded, as the Vocal Jazz Ensemble and the Senior and Middle School Jazz bands were there, with special guests the Barbra Blair group. It was ‘cozily’ crowded, and of course I hit practically ever chair leg and got caught in ever handbag as I rolled painstakingly slow through the crowd. I hate crowds. They make me so anxious, because it is mathematically impossible that someone will NOT hit me, and because of the noise, which makes my head oddly blank, yet confused.

The show was so much fun though, but I couldn’t really hear anything because I was all the way at the back, and in the outside corridor. I couldn’t see anything, because I am the shortest one, so I just tried not to think too much and be at one with the chaos. 

We had a great lineup and energy! Such awesomeness! I’m so proud of our group…we gave it our all!

Happy Victoria Day!

“The Twenty-First of May is the Queen’s Birthday”. Clever rhyme, no?

Here in the little town, whose namesake is the Queen, we take Victoria Day quite seriously. No school, everything closed, big parade, the works. Usually, because its a long weekend, I plan on hanging downtown on this day, completely forgetting the masses of tourists and paraders at the Parliament buildings (our normal meeting place). It is always awesome, of course, but crazy busy. I didn’t do the whole ‘watch-the-parade’ tourist-shenanigans, but I did hum the national anthem as we went into the BC Museum of Natural History. Seriously amazing place. I’m not generally a stuffy museum-goer, but the exhibits are so beautiful, and informative, without going overboard in the text department. Its peaceful, dimly lit with all these nature sounds and mini-movies. And accessible. Bonus.

It was fun, but I’m feeling pretty shitty today, not gonna lie. I apparently had a really bad Herxheimer reaction which is when toxins are released into my body from the bugs dying. The really bad ‘herxing’ is when most people quit. The pain is too much, the involuntary body movements too alarming, the stiffened joints, and the intolerable fatigue that makes you feel like you are walking underwater, pulling a boat with a lead belly. It makes me want to give up, I’d be lying if I told you otherwise. I’m not nearly so brave as that. But not enough to like drop everything and have the port-o-cathetor removed on Tuesday. It really annoys me when Lyme people talk about how the herxing is too much, and so they just stop the drugs. The herxes are terrible, but it is actually the bugs dying inside your body which causes them, which I consider a good thing! I’m kind of like WTF are you thinking? You were so close to killing the bugs, why did you stop? I equate it to being within sight of the finish line but then saying “well, I saw the finish line. That’ll have to do for me” and then turn tail and run back the starting line. Does that make sense? Of course, you are thinking that you should keep going, but you haven’t felt your tendons stretched to the breaking point, your heart throwing itself against your ribcage, like its trying to take a flying leap the f@^* out of there, your body writhe in revolt. //

I have the most amazing, talented, wonderful friends ever!!!

I am so glad we made to a concert of the Divertente String Quartet, at a hall at UVic today. My best friend Jessica Pickersgill (watch out for her…one day she’ll be on the finest stages across the globe…fo sho!), plays the viola so passionately, and I haven’t heard her play in a long time, so I was so blown away at how amazing the music was!! The other three players were fantastic also, two violinists and a cello, all very young! It was so relaxing, listening to the music. It is the only thing that makes me feel better. The music was so beautiful, it is hard to describe, so of course it must be heard to understand. Please enjoy:

 
This is my dear friend, Jessica, playing:
Der Schwanendreher, 1st Movement by Paul Hindemith
accompanied by Elfi Gleusteen

Incidentally, this is my 130th post. Kind of a landmark, I think.

Berry Barn Reunion!

Of all my favoritest memories in my life, perhaps the best of all were the summers spent at the Berry Barn. It is seriously a special place, just on the border of Sooke and Metchosin. There are usually 3 horses: Velvet, Prophesy, and baby Scout (who I’ve known since he was a stumbling foal). They spend their days lying about the paddock, playing horse games, and always coming to us for a treat or a pet and kiss. The dog, Dinny, and the de-clawedbarn cat (gosh…whats her name!? help me guys!!??)  – who can catch birds and mice simply with pure skill. The amazing humans at the barn, are…
Glenys, our mentor and drama instructor who manages to pull shows and scripts right out of her hat it seems;
Grandma, who makes the most beautiful costumes ever, and paints the sets single-handedly, and. incidentally, makes the finest and most addictive Welsh cakes in the land;
and Betty, who helps out with everything, and is the most amazing, magical seamstress!!

There are usually less than 20 of us who are in a play. We’ve done Macbeth, Midsummernight’s Dream, Much Ado About Nothing, Tempest and Twelfth Night, a play a summer since I was about 10. We spend 2 weeks preparing; learning lines, sword playing on the mossy rocks, running lines in the gazebo, flying around in our outlandish costumes, and blocking out scenes. We played all sorts of acting games too; improv explorations, the ‘ball’ game, the ‘Keeper of the Keys’, tossing dowels, creating tableaus, making art for the play, and learning to use our bodies to express what our words could not. But the camp means so much more to us than all the things it was. We all are the closest friends, bonded by the great Bard, and spent every free break running wild over Glenys acreage; playing by the ‘crick’ and catching frogs, galloping barefoot over the mossy, wood chip floors, playing on the bridge and scampering over rocks, swimming in the frigid water, flying down the steep hill, hiking over boulders into uncharted territories. It was our magical dominion and we explored ever inch. We even rehearsed scenes outside, using the natural woodland setting to inspire us to imagine more clearly the island setting of Tempest, the dangerous tricks of the forest in Midsummernight’s Dream, the traveled paths in Twelfth Night. It was an incredible 5 summers, and the kind of magic we created  offstage was the realest I have ever found.

Last night was our great traditional reunion. Its usually a potluck and Glenys makes chilli and we play improv games until its way too late and the parents have all long arrived and helped themselves to some food and laughs. Getting up the steep flight of stairs was difficult, but I knew that even if there was broken glass on each stair I would drag myself to the top. We had simply the most marvelous time. Everyone has grown up, grown into their own skin. Growing up is beautiful.

Here are some pics I snapped at the party!

Matt, Nick, and Morgan, our comic relief
Will, Dan, Pelle and Kaeleigh (all looking their best :P)
Char and Matt!

The Lovely Laura’s, Me, and half of Matt!!

I miss you all so much! So many good times 😀 xoxoxo

MLA’s

Today was seriously cool! I was invited by two amazingly dedicated, wonderful people, David Cubberly (on Board of Directors of CanLyme) and Lana Popham (Saanich MLA-> Member of the Legislative Assembly), to speak to some MLA’s about Lyme disease. All of them were invited, and about 30-35 showed up, which is saying something as there are only 85 MLA’s total! David brought a copy of a new book about Lyme called “Ending Denial” for each of the MLA’s who came. I spoke to many of them before and after, and I hope that they took away from the meeting a greater knowledge of Lyme disease in general, and from me, its devastating impact. We tried to stress the main issues, about doctors simply not treating Lyme and the ELIZA testing problems. It was pretty sweet to meet those representatives from all those distant BC places; interesting, friendly, well-spoken people…wish I could have talked to them all some more!! If only I had met the dear health minister…I would love to meet him and ask him a few questions! 😀

We also got to listen to question period in the assembly house place, which was very interesting! The last time I was there, in grade 6, I had very little knowledge of government proceedings, what has happening in the province, and little patience for their formalities. Now, I can say that I have definitely improved on the first two points, thanks to all those dull socials lectures and reading the Times on the bus, but I still found it a little difficult to keep up, although question period was certainly heated and very fascinating! Mom and I were introduced to the house by Lana, and then she made a two minute introduction of a bill about Lyme disease, which they were going to discuss later I guess. It was utterly exhausting, but I am so glad I went!

The parliament building’s architecture is always a treat. If you are ever in our beautiful capital, its not to be missed!

The lovely room where we met with the various MLA’s, with such comfy chairs and a lot of old discharged library books on shelves around the room!

Oh yes, there was a piano. I couldn’t help myself.

Below is the speech I gave to the assembled MLA’s. (just imagine my slightly monotone voice, and it will be like you were there too!!) Enjoy!~

Hello! Thank you so incredibly much for coming out to this informal gathering to learn about Lyme disease! (Your curiosity could keep you safer someday). My name is Nicole Bottles, and unfortunately I am sick with Lyme Disease. A little over 2 years ago I was just a typical teenager who loved playing piano and French Horn, singing, chemistry, history, and hiking. I have not been able to attend school since about half way through my grade 10 year. I should be a senior now.

The symptoms started with breathing issues and chest pain, and graduated to vague joint pain, dizziness, nausea, headaches, weakness, and memory and concentration issues. My symptoms progressively became worse and worse, including intense pain, no short-term memory, swollen joints, exhaustion, writing issues, and getting lost or distracted easily. In the space of a few short months I was no longer able to walk, remember things, go to school, or live in a way that could be conceived as tolerable, or acceptable. The culprit? A tiny bug the size of a poppyseed, and a hypocritical medical system that left me far behind.

Imagine my dismay, that after seeing 9 specialists, and being tested for everything, doctors still were drawing a blank as to what was causing my strange illness. Even though my mom brought a check-list of Lyme disease symptoms to each doctor, it was quickly discounted. I was ‘too complicated’ to have Lyme disease. They much preferred the misdiagnosis’ of asthma, growing pains, a kind of arthritis, Lupus, an eating disorder, or a deficiency of some kind; anything but the ‘rare’ Lyme Disease. If the doctors had been trained to diagnosed my condition based on the symptoms instead of a flawed test, it would have cost about a $100 for a few weeks of antibiotics, and saved me great suffering. As it stands now, it has been 2 years of horrific pain and over $100,000 in medical bills, all paid out of pocket.

If getting a diagnosis in Canada is hard, it is impossible to get treated. I spent almost a year living in the US, getting the drugs and care that I should have, by right, been able to obtain here.
I wish my case was ‘one-of-a-kind’ and rare. But there are far too many Canadians sick with Lyme Disease now for health agencies, medical professionals and government to believe so.

Lyme disease is no longer just an East Coast problem. It isn’t just in the United States. Ticks don’t wait in long lines with their passports to cross the border. Lyme infected ticks exist in BC and across Canada, and  for the medical profession to continue to remain absurdly ignorant of this fact. Lyme infected ticks are no longer just a thing in off-road parks, deep in the forest. They are in your gardens, on your pets, and your city sidewalks. It begs the question, why is nothing being done? It is time to act. Why are we denied our health care rights? There are thousands of Canadians suffering with Lyme Disease. The ridiculous, ‘old school’ IDSA protocol now in place for Lyme disease treatment is a joke. It doesn’t help those who need it most; the people who were not diagnosed or misdiagnosed. The ignorant, blind-eyed approach that most doctors have is clearly not working.  Simply put, doctors need to be educated in the clinical signs of lyme disease. Patients need to be diagnosed and we need to be treated in Canada.

    I would please implore you to read the new Canadian book about lyme disease called ‘Ending Denial’ which David Cubberly has so graciously given all of you a copy of today.  And I ask you to dig deeper and find out why Canadians are being denied their right to health care when they have lyme disease. And I ask you to help us to right this wrong. Our suffering should not be in vain. Tell your friends and family the dangers of Lyme disease, and the issues at hand. Knowledge saves lives. Because, honestly, it could have been you sitting in my chair today. I speak out, so that it would not be.

Medically speaking, I am definitely still bumping and banging along on the road to health, but the road back from hell isn’t paved. I still take IV medication daily through the Port-o-catheter in my chest. Unfortunately, I still do not have a diagnosis in Canada to this day.  I do not have a doctor in BC willing to treat me for Lyme Disease, (or for any other illness!). The suggestion alone of ‘lyme disease’ is enough for a physician to bolt from the room. I still have to travel to the US to see my doctors, at huge personal expense.

Everyday is a challenge, but one that I face without a thought of turning back. I know eventually I will get my old life back, and be able to shed the disease, or at least tame it. The thought strengthens me greatly. I just can’t wait!

I leave you with this quote by President Barack Obama:
“Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.”

Thank you.

%d bloggers like this: