Archive for May, 2010

At A Loss For Meaningful Words. Damn You, Wheaton And Scalzi!

May 30th, 2010

I don’t even know how I am going to write this blog. Especially as there are back stories that I am not comfortable sharing as I really am not one to name drop or talk out of school. But holy fuck. I’ve just had the wind completely knocked out of me and I can’t stop crying and shaking. Once again, I am left to be a quivering mess, incapable of rational thought beyond “OMG! This cannot be real… WOW.”

People who read my personal blog should know by know that I have Lupus, this horrible disease that has almost left my children motherless a few times now. Readers should also know that I have done a lot for quite some time now to raise funds for treatment and research, and awareness of this horrible disease. People also know that I have had the awesome opportunity to interview some pretty cool people and had other cool people lined up to interview. But stuff happened on my end and it has been put on the back burner.

Well, when I got my big-ish idea for my World Lupus Day project, I decided to break one of my rules. I decided I was going to try to use what little pull I may have and email a few of these people and ask them if they wouldn’t mind helping in some way. I told them (as I always do when Jules gets one of her crazy ideas), please don’t feel obligated to email me back with a yes or a no. Really all I wanted was them to be aware of this thing. I told them that I was very uncomfortable even asking them but the worse that can happen is no response and really, I have no expectations at all that they will help.

After all, they probably get a load of crazy requests all the time and I do not want to add to it. And as I expected, I didn’t get emails back on this topic. It didn’t hurt my feelings. I didn’t get my nose out of joint because I really do understand they have crazy busy lives. I understand that they get inundated by people who have this crazy sense of self-entitlement and heaven forbid I ever become one of those. I also know a few of them are aware that I’ve published a book. A couple of them have a copy.

Then today, John Scalzi posted a blog which said the following:

If you’re not doing anything else with your time today at about 7pm Eastern time/4pm Pacific, pop over here again.

Trust me.

And when I checked back at 4 pm my time, I found the following “Wil Wheaton/John Scalzi Fan Fiction Contest to Benefit the Lupus Alliance of America“. Below is an excerpt:

Short Form: For the benefit of the Lupus Foundation of America, John Scalzi, Wil Wheaton and Subterranean Press are running a fan fiction contest, in which contestants write a 400 to 2,000 word story describing the picture above. Any form of fan fiction is acceptable except slash. The winner of the contest will be paid for their story (10 cents a word), win a prize pack of books from Subterranean Press, and will have their story published in a special electronic chapbook featuring stories about the painting, written by Scalzi, Wheaton, Catherynne Valente and Patrick Rothfuss, to be published later this year, with profits to benefit the Lupus Foundation of America. E-mail the stories with the text in the e-mail to by 11:59pm Eastern, June 30, 2010. One entry per person.

Here’s the deal. I don’t know if it had to do with the emails I had sent. And I really don’t care because it really doesn’t matter what spurred them to do this. There is the stupid part of me that can’t help but to think my emails didn’t fall on blind eyes for a couple of reasons that I really cannot discuss HOWEVER that does not matter. This is not about me even so this has a direct effect on me and affects me deeply. This is about the 5 million Lupus sufferers worldwide who have just received one of the most awesome and amazing gifts ever from two of my favourite people (And people wonder why I’m fond of the people I am fond of. It has nothing to do with their so called “celebrity”, but to do with who these people are… you know… as real people.)

It will be quite some time before my soul recovers from this and I am able to breathe once again. Honestly, the sheer awesomeness of this I will never be able to articulate. There will never be words that are good enough to express my thanks and gratitude. I thank them from the bottom of my soul as I am sure many others will. You couldn’t ask for two better people to stand behind this cause that is so very important to me.

Just as I think no more completely awesome can come into my life (because I have had more than my fair share) something like this comes out of no where. This will forever go into the top 10 awesome things I have witnessed and/or done in my lifetime.

At a loss for meaningful word. Damn you, Wheaton and Scalzi



It Really Is All My Fault

May 29th, 2010

I love my kids. I love them to bits and pieces. And not only do I love them but I actually like who they are as people. But there are days where I look up in exasperation and think, “why me?!?” I should never have named them and given them an identity. I should never have taught them to speak, never mind teach them how to speak for themselves and speak their minds. I should never had taught them to tell me anything and that I may not always approve but I will never love them any less. (Even so I am whining right now, in all honesty I wouldn’t change it for a thing.)

The last 2 days have been filled with many moments of laughter at the crazy things they say to me and many moments of “WTF!?! No parent wants to hear this stuff! LA LA LA LA I can’t hear you!” I will even turn to them and say, “DUDE! Really! Oh dear GOD! Why did you have to tell me that?” Only for them to smile and walk away. And even so part of me is serious, there is a bigger part that says, “Thank you for allowing me to be a part of your life even though the pod people have taken you and you are NUTS! THANK YOU for not shutting me out and not being afraid to tell me ANYTHING.” And I really mean, anything. They don’t hold back.

The last two days have been a long series of “that’s what she said”s. My youngest realizing just how dirty the word “geekasm” is and what it eludes to and a long conversation about how it could be wrong that we shared one together. My youngest telling me “You know what, mom. If a girl ever asks me what my favourite planet is, I’m gonna tell her Uranus. Isn’t that funny? Yeah, Uranus. I can’t wait to see her reaction. Now I just hope a girl asks me what my favourite planet is.” Ah man, there are a lot of other things but I think my brain has blocked it out of existence in an effort to preserve what little sanity I have left.

But this also leads to some pretty cool moments of sharing. My oldest just played one of the best jokes on my youngest. He took him outside under the guise of showing him a magic trick. They searched the neighbourhood for a seeded dandelion as it was part of this. The trick goes: 1) You tell someone to hide a leaf on their body. 2) Once the leaf is hidden, you tell them that the dandelion is going to detect where the leaf is. 3) You “scan” their body (as if going through airport security) with the dandelion while making beeping noises. 4) You tell them to open their mouth so that you can do a full body scan. 5) You shove the seeded dandelion in their mouth.

When they returned home, Kid1 told me what he had done to his brother so that his brother couldn’t attempt it on me. The practical joker inside of me howled but the mother, while trying to suppress a laugh, had to tell him, “That’s mean!” He had told me that his brothers reaction was, “Dude! That’s awesome! I can’t wait to do that to someone esle!” as he was spitting out bits of dandelion. Then once his brother left the room, he informed me of another joke he is going to pull on his brother. This joke involves my help. I have to say, it is pretty mean and pretty damn awesome and I can’t wait!

So, yeah. It really is my fault. I tell them to be themselves. I tell them to stand up for what they believe in. I tell them that if an authority figure is abusing their power, do something about it. I introduce them to all kinds of things that are a little bit off. I treat them like real people. I tell them that they can come to me and tell me anything. And so they do. At least when they are adults, they have a solid self-assured foundation. But man oh man, my house is rather insane at times and there are days that my head wants to explode due to TMI.

I really wouldn’t change it for a thing.

In Which Kid2 And I Share A Geekasm

May 28th, 2010

Today was full of awesome and win. And I thought an experience I shared last night with Kid2 wouldn’t be able to be topped for awhile.

Last night, The Hoff somehow came up in conversation. I decided to share some of my most favourite cheesy Hoff music videos with Kid2. And he loved them almost as much as I do. It was a pretty fun thing to share with him. It was nice to see him share the same enthusiasm that I do for things that are just a little bit off. I keep trying to figure out if I am a bad influence or a good influence on my children as I expose them to things children normally have to come upon on their own or that in “normal” households, they cannot share the joy with their parents. I thought it would be awhile before an equally awesome event would take place. And then earlier today, was The Awesome Hour.

Wil Wheaton is currently at the Phoenix Comic Con. He has this thing that he does at conventions called The Awesome Hour. He blogged about it yesterday and I called him a tease for not sharing with his readers the epiphany he had come up with that would later become The Awesome Hour. Then today, just as it was about to start, he tweeted that it would be streamed live over this thing called the internets. This made a happy Jules a very happy Jules indeed.

Just as it was starting, Kid2 came whizzing into the house (as he does) with a quick “Hi!” and “Bye! Going to go whiz through Splinter Cell again!” Then this streak of a child went flashing down the corridor. I called out, “Hey! You! Not so fast! Wil is speaking. Do you want to come and listen with me?” He replied with, “I’ve heard Wil speak, mom. Maybe another time”, as he began to turn to make his exit. Before he could get a quarter of the way there, I informed him that Wil is currently speaking live at a convention and we can listen to it live! Online! We don’t even have to leave the comfort of being pantless to attend a convention that is 2620.012 km away! He found this idea to be pretty intriguing and pulled up a chair beside me. (Isn’t living in the future awesome!)

Near the beginning of his talk, Wil was speaking about the Atari 2600. Holy jumping jellybeans! If only you could see Kid2’s face as it lit up as Wil spoke about gaming. And to make it even more awesome, about gaming from the 80s. Kid2 loves the 80s. There are times I think he knows more about the 80s than I do and I grew up in the them. Kid2 wasn’t even a glimmer in his dad’s eye at that time. It really was this super cool thing to watch as Kid2’s face was pointing towards me. However, he was looking passed me as he cocked his left ear to listen ever so intently to the words Wil spoke.

As Kid2 looks passed me, I found myself staring back at him while the tones of Wil’s voice faded into the background. I watched the sparkle in his eyes, his mouth curl with half smiles. I watched him fist pump the air, only to be jostled back into reality when Kid2 would exclaim, “O.M.G! MOM! This is freaking rad!” and I would have turn my ear back to what was being said so that I could comment and have a geeky conversation with my son. We laughed at how Wil has thrown around “that’s what she said” with his boys, as it is a common occurrence in this house. We had discussions about all the games Wil mentioned as they are some of Kid2’s favourites. We talked about how Wil’s kids are weird since they would tell Wil he’s weird when really he isn’t (clarification: my children call me weird all the time. But in this house it is a compliment as my boys think I am pretty damn cool). I smiled every time Kid2 would comment about how similar Wil and I are.

That actually use to be a running joke with my ex. I would say something or talk about something, only for Wil to tweet almost the exact same thing or blog about it shortly afterwards. He would joke that Wil and I were long lost twins even so we are 3.5 years apart. Something about a tear in the space-time continuum messing with when I came into existence as you hear and see me now. And this is the major reason why I enjoy Wil the way I do. Not because of some silly crush that formed when I was 10. But because we are the same “people”.

Our lives developed very similarly. An example of that is when he was 25ish he had two boys, the oldest being 5ish. When I was 25ish, I had to two boys, my oldest being 5. We also share A LOT of the same geeky/nerdy obsessions. We have the same warped sense of humour. And we are basically the same age. Even so I didn’t literally grow up with him in the sense where we grew up as friends and hanging out etc, I did grow up with him and he was the first geeky person for me to be acquainted with in some manner. It was nice having someone similar to me having the same experiences I would have but a couple years before me so that I knew what was to come.

So, of course it makes me happy that he is one of the people Kid2 looks up to. When I was Kid2’s age, I was the lone geek/nerd. I wasn’t teased for it by my peers. They always seemed to just accept it. But I had no one to really look up to or to relate with. I had no models in the media to let me know that it was cool and okay. I had to tread these waters alone. It wasn’t until adulthood and the internets that I was able to find my tribe and by that time, I was too old for role models.

And even so I think my boys have a pretty cool geeky role model in me, it comforts me that they get to have role models outside of me. They were born into this geeky family which my generation had to go through a lot of teasing and pain to create and have it be accepted. It makes me smile with a stupid grin that my once childhood crush is now one of Kid2’s biggest role models. (Don’t tell Wil. He gets a little self-conscious when he has to think about these things.)

The Awesome Hour was almost over and Kid2 decided he didn’t want to listen to anymore of the Q&A and really needed to tear through Splinter Cell for like the billionth time. He went into the living room and played his game. But every now and then I would hear a big cheer as Wil would mention things such as, people who think girls shouldn’t like these things are stupid. There was an even louder cheer (and I swear I heard a fist pump) when Wil said geek girls are hawt (and a “Mom, Wil thinks you’re hawt! They don’t get much geekier than you, mom!). And an “all right!” when Wil said he was left handed (Kid2, even so he is ambi, decides to use his left more than his right).

I have to say The Awesome Hour was pretty damn awesome. And not because of what Wil had to say (don’t get me wrong he is a great speaker and very funny) but because I got to geekasm with my 11 year old son. We may have been geekasming over different things, as our heads were in different places, but I cannot think of a better way to spend time with my son. Thank you, internets. Thank you, future. Thank you, Wil.

Soul Wrenching

May 28th, 2010

So tonight (well technically last night) was the first episode of season 7 of So You Think You Can Dance. And judging by my reaction tonight, I can already tell this season is going to blow me away. I’m not too happy about the changes to the format. However, as the next few weeks will just be auditions, final judgment on that will have to be reserved for later. And even so the format may have changed, the dancing will not.

I do not think I could ever adequately explain just how profound of an affect this show has on me, how profound of an affect dance has on me. Real dance. There is something quite magical about this show. Something that isn’t even close to achieved on that other show. Most likely that has to do with the other show being about the “stars” and not about real talent and dance. Dance. This art form that pulls at me in such an incomprehensible way.

You hear terms like heart wrenching and gut wrenching. For me, dance is soul wrenching. It pulls at the very fabric of my being. It has this ineffable quality which reaches far beyond time and space. When I dance, I get to submerge myself into unexplored worlds. Worlds not yet imagined. Worlds waiting to be found. Worlds that cannot be written about. Worlds that cannot be spoken about. Worlds that cannot be painted. Worlds that cannot be staged. Worlds that cannot be expressed through music. But when the dancer becomes the canvas, when the dancer becomes the music, when the dancer becomes the words, when the dancer steps onto that stage, universes are created. The inconceivable is given life. Breath is given to a reality you didn’t even know existed.

Dancers are more than movement. They are the art. Everything aesthetically pleasing is homogenized and perfectly encapsulated, waited for the moment to burst forth into being. Dance gave me the drive and determination to get out of a wheelchair 4 years ago. Dance gives me reasons, outside of the tangible, for existing.

I do not know if I could ever really explain why. It is just so “other world” and my rational being has a hard time expressing such things. When I watch dance, when I dance, there is this ball that forms in my gut. And it isn’t like the other balls that form there for different situation, such as the ball that forms when you are worried or the ball of butterflies that forms when you are exited or anticipating something or are in love. This ball has a completely different life.

The ball is vacuous yet filled with bursting energy. It is weightless and it is heavy. It is vibratory but completely calm. It is dense with matter and it is void. It is hot and it is cold. It is black and it is white. It expands and collapses upon itself all at the same time. When I try to visualize this process, I almost see one of the few times movies have accurately depicted something being blown out into space (the Star Trek reboot).

You see and hear the explosions within the ship and then sharply, there is nothing. Silence. Emptiness. Black. Cold. Imagine playing that scene forwards and backwards, amplifying the sound and lack thereof. Now speed up the process so that matter is being forcibly blown out into deafening silence and sucked back into loud existence with equal force, simultaneously. Then add to that the Universe in which we currently inhabit exploding with the force of the Big Bang and collapsing back into itself at the same time. This is a minuscule and pathetic attempt at describing the indescribable.

That is soul wrenching. That is dance.

Pacing The Corridors Of My Mind

May 19th, 2010

And there are a lot of corridors to walk up and down. It is an exhausting task but the only one I seem capable of at the moment.

I don’t even know where they are leading to. My mind is meandering in so many different directions. I am going from moments of thinking, “I can cope. I can manage”, to moments of bursting into tears for no apparent reason.

I am going from moments of needing to unleash the fury of bubbling emotion and doubt within me to moments of thinking, “Don’t be silly. You cannot tell people. Then they would see your flaws and know where your soft spots are. This is way too personal.” And you know what, I know there is nothing wrong with emotion. I tell people all the time to not feel bad for how they are feeling. They are only human after all. But, even so I am human, I am really a lot like Spock or Data (as I wrote about before). I feel emotion but paralyzing emotion, deep strong emotion that you cannot rationalize away, is not something that happens very often.

And that really does make me sound like a heartless person, but I am not. I care deeply, just in a different way. (Funny thing is, I actually feel selfish writing this blog at this moment in time because it should not be about me. It should be about the person who has triggered this current frenzy of emotional tsunamis. The focus should be on him. And I suppose it is in some way but honest to God, if I do no release, I am liable to explode and take it out on some poor unsuspecting fool who just happened to be at the wrong place at the wrong time.) I think my emotion chip is broken. I think it has fused to my neural net. Part of me thinks this is good. Part of me just wants to stop feeling the way I am feeling right now even if that means never feeling anything again.

You would think someone has died by the way I am talking. They haven’t. They are just ill and in hospital going through a battery of tests and observations. You know what I hate? I hate when people tell me not to worry. I hate when people tell me everything will be okay. And I know they are just trying to be supportive and reach out. But as it is rare that I actually do worry, I feel that my feelings are being belittled. A little bit of acknowledgement would be pretty cool. And I am getting that too. There are people who actually see me for me who haven’t really said anything beyond the situation sucks. We feel bad for you. You and (insert name here) are in our thoughts. Keep us updated. That is what I need to hear right now. A little bit of understanding. When you tell me not to worry, I think you do not understand. Because if you were in the place I am right now, it would be all you can do to not vomit and curl up into a ball on the floor.

You would think it was uber serious the way I am talking. The situation is not critical per se, but it is bad enough where someone has been admitted to the hospital.  As someone who lives with a chronic illness and has had to go to the emergency room more times than a 1000 people have to in a 1000 lifetimes, they don’t admit you if it is nothing. Something is going on. And sure there are varying degrees of bad but bad enough for a hospital stay is bad regardless. That is where my brain is at. Especially as I have a lot of personal experience in this area.

You would think I’ve never had someone ill in my life before. I have. I have a lot of experience in this. But it has never worried me. Here is where I am about to sound even more cold. Death and illness do not bother me. People get sick. People die. It is reality. It is a reality I have had to come to terms with because of life with Lupus. If I let it bother me, especially if I have no control over it (no one does), then it wins. I have a huge control over my emotions. They are dictated by my thoughts and it really is illogical to worry over things that you cannot control. This caused issues in my last relationship when he went through a health crisis. Yes, I was bothered by it to a degree. I am not completely cold. But my attitude was and continues to be, there is no point getting upset until we have answers. And when we get answers, then we form a game plan. We will take it as it comes.

Here is where the hitch comes in. The feeling I have right now is a feeling I did not think possible to have for anyone outside of my children. This is yet another series of emotions that I would have argued to death are not possible to have for anyone outside of something that came out of you. If I look and think about anybody close to me dying, I get sad to a degree but the thought doesn’t bring me to tears and I don’t feel as if I am going to die myself. I think, “Yes that would suck. I would miss them terribly. There would a void. I would cry maybe a bit (depending on the person) but my life would carry on. I will get over it.” When I think that about my children, I can’t even breathe. My stomach and heart get knotted. Tears form in my eyes. If something were to happen to my children, part of me would never recover. Part of me would die. It would be worse than losing a limb. They are a part of me. They are my reasons.

I thought it unhealthy to have feelings like that for someone else other than your children. I thought it illogical and irrational. I thought it completely impossible to love someone that much who was not your child. I don’t even love other family members that much. That level of bonding does not happen with me and other people. I do bond with people, but not to that same inseparable degree.

I would debate this to death. This idea has caused hurt feelings in past relationships because even so I loved them and continue to love them, there was nothing that set them apart from anyone else I loved. I just decided that they were worthy enough for a different type of committal and it really was more a less a contract between two people. I had no distinction between the love you feel for a friend and the love you feel in a relationship. Love just is. And it is such a terrible thing to say that you can stop loving someone. Regardless of finding this new type of love though, I will still maintain love doesn’t end. Lust does. But for me personally, I can never imagine that I would stop loving someone. But that is just me. And we all know, emotions aren’t really my thing.

But here I am unable to breathe. Here I am thinking I am going to vomit at any moment. Here I am crying over anything. The smallest mention or reminder of him and I fall apart. The only other time I have felt this way is when my children’s lives have been in danger in some way. I am losing control. I even unintentional yelled at Kid2 last night over nothing. I don’t do that! I felt like shit and spent 30 minutes apologizing to him and trying to explain to him that I am afraid even though rationally, I shouldn’t be. There are many stories involving my children that can illustrate just how powerless and helpless and afraid and lost and unsure and… well, I can tell many that liken this situation to those. Most of them I feel are way too personal.

There is one that I have talked about briefly though involving Kid2. When I was pregnant with him, there were some serious complications. He had swelling in his brain. They had thought they would have to put a shunt in his brain while he was still in utero. Thankfully, the swelling started to go away on its own and we were told we could breathe a sigh of relief and he should make it through okay. But I still couldn’t breathe. I still couldn’t stop worrying. And then the day before he was due, I went into false labour for close to 24 hours. When my doctor came in the next day, I demanded that they get him out of me. Until I could hold him, until I could count his fingers and toes, until I could see for myself that he was okay, I was going to be worried sick. There is another story where he was late getting home from school and I had to file a missing child’s report. I was beyond sick. There are even scarier stories but in a nut shell… That is where I am right now.

This is so totally uber personal. I feel like an idiot right now because this is completely uncharacteristic of me. But I also have a mental process that I go through when I am trying to cope with something and sort things out within me. I have talked about it before. But if you are unfamiliar with it, let me explain.

I think. I think things to death. I look at the situation from every angle possible and then determine how I feel about it and how I am going to approach it. Then I tell someone about it. This makes it real. It is like naming the demon before you can tackle it. Until it is spoken, it is just an abstract concept. It needs to be shared with someone in order for it become real. Unfortunately, the one person I want to talk to about (actually NEED to talk to about it) it is in the hospital so I cannot. And I cannot think of any other single person that I really want to talk to about it. I can think of a few people that I can talk to about it. I can think of a few people that would like me to talk to them about it. But right now I feel as if none of them will do. There isn’t anyone else that I can talk to about this where I will feel some relief after doing so. So instead, I am spewing it out to whomever reads this.

It is a lot easier than telling the same story over and over again and just feeling shittier each time because a) it makes the situation even that much more real each time I do, and b) they just aren’t that person. And if I do happen to fly off on somebody (because there have been a few instances in the last two days where it has been all I can do to not just yell and scream for what would appear no good reason, leaving myself to feel like an ass) somebody can take them aside and explain, knowing that I just do not have the mental capacity for real reason at the moment. It wouldn’t make my actions more acceptable but maybe it would make them more understandable (if that makes any sense).

So until he is home, until there are real answers, until there is a game plan that will work towards a solution (whether the outcome is good or bad, I just need a game plan), until the unknown becomes known, you will find me pacing the corridors of my mind.

Things I Don't Do Well With

May 18th, 2010

People I love being ill has to be on the top of my list.

I don’t always have the best way of showing that I am worried. I keep a very brave front. I have to. I am so used to being ill all the time, it has now become a survival mechanism. No point showing concern and worrying yourself until you have reason to, right? Worry and stress can just exacerbate the situation. I am great dealing with it until the moment of answers. And regardless if it is good or bad, I melt down.

I don’t even know why I am writing this because this falls into the uber personal category for me as it involved another party. But as I have no one to talk to at this moment (now that I think about it, I probably do. I just don’t have the mental capacity to do so as I am a complete emotional train wreck and just need a good hug and a good cry. The good hug is what I am lacking at the moment), if I don’t purge some of my current emotional roller coaster, I feel as if I am going to die. Do you ever get that feeling? That tight knot in the pit of your stomach, twisting and turning with such force it is like a sinewy ball of worry. And then it explodes and ruptures, and then starts to pulsate with such a force you want to vomit?

That is where I am at. After spending 13 hours trying to be brave,  13 hours of radio silence and not knowing what is going on, 13 hours of “stuff”, I finally got news and now it is all uncorked. I can’t help but to think “It is my role to be in the hospital, not his.” At least, that I can deal with. At least I know what to expect with that. I really shouldn’t be making jokes right now but if I don’t find something to laugh at, I am going to completely melt down until he is released from the hospital (hopefully at some point tomorrow).

And even so I can breathe a bit of a sigh of relief and let out some tears right now, I will not be able to fully exhale until he is back home safe and sound. Be prepared for stressed out Jules to be either really quiet or say inappropriate things in an effort to cope  with things I don’t do well with.

It is because of days like today that I have two rules in relationships. 1) Never go to bed angry with the person. 2) Always tell them and remind them you love them no matter what is going on. Because you just never know what tomorrow may bring.

You Want To Know What Is Worse Than A Troll On Formspring?

May 16th, 2010

Even if you don’t want to know, I’m going to tell you. Because I am beyond irate at the moment. And I am once again thinking “why do I even bother?”

You know what? I may have strong opinions. I may have a tendency to have a big mouth. I may be overly upfront and honest. I may not know how to sugar coat things. I may say a lot of things to get a reaction out of people in return when they try to do the same thing to me. I may do a lot of things people do not understand. But guess what? I welcome people to ask me about those things. I welcome people to say TO MY FACE, “Hey, Jules. You did this thing that I don’t really understand why especially when I would have done it this way. Do you mind explaining?” And I would say, “Sure! I’d be happy to!” And heaven knows, I don’t expect people to agree with me. You can have your opinions and I can have mine but at least let’s try and understand where both parties are coming from. And if we agree to disagree, at least a conversation took place.

But no. People decide to be worse than an anonymous troll on a silly forum and talk behind my back. They make assumptions despite it being very clear that I am fully aware of what is going on. This despite me stating that I will put up with a lot. I can give it out just as good as I can get it. I can say just as ridiculous things in return. And when I’ve had to much, I have no problem telling the person to bugger off.

I don’t talk out of school. This is something I take great pride in. If I do happen to talk about someone and they are not present, I either 1) Tell them about it later or 2) Assume that they are going to find out and am prepared to talk about it to their face. I don’t go out sending emails to people not involved asking what is up. Call me crazy, but I really don’t believe it is too much to expect people treat me with the same courtesy. Especially when many have asked me either in public or private why I chose a specific course of action and I discuss it. Even more especially when I invite it and have stated this fact over and over again. At least the anonymous douche bag troll had some decency to say retarded shit somewhat to my face. Oh, you didn’t think I would find out? Funny thing is, things always seem to have a habit of getting back to me.

I don’t care what people think about me who don’t know me. But when people I care deeply about are put in the middle, I get pissed. And if you care enough to make assumption about my actions, let me state once more, come to me! Ask the bloody source. Grow a pair and have a real conversation otherwise my opinion of you is worse than that of the asshat asking inappropriate things on a silly forum. Hiding is hiding. It doesn’t matter to me if you are asking inappropriate questions or talking about me behind my back instead of to my face.

And if you don’t care enough to respect this one little simple request then why do you care enough to talk behind my back in a cowardly fashion?

Before typing this out, I had thought for a moment that I would say “Screw it! This is so not worth the aggravation.” But I would rather let the troll win than you win. At least there are at least a handful of people that actually do care that treat me with the same respect I give others. I am not going to let people who make assumptions and are cowards ruin it for them.

You Would Think I Would Learn Or Something

May 15th, 2010

Maybe the “or something” is the only thing remotely relevant to what is on my mind at this moment. This something has been plaguing me all week. It is frustrating and irritating like nails down a chalkboard while a gnat buzzes your ear.

“I use to be brilliant” has been something my brain has been saying for a few weeks now. I’m sure if you searched my last few blog posts and listened to my Lupus podcast, you’d read and hear me say this. I have come to realize in the last week after the successful completion of my World Lupus Day project, I’m still brilliant. Just in other ways. I may not be able to hike for hours upon hours anymore. I may not be going for long runs anymore. I may not be dancing over 12 hours a week anymore. I may not be shining on stage anymore. I may not be spending hours crafting and painting anymore. I may not be able to recall the huge amount of information stored within my database of a brain with the same ease as I once could. I may not be able to vocalize my thoughts effectively and succinctly as I once did. But I can still create and be productive.

My latest project is proof of this. Hindsight can be a royal bitch at times. I just had the thought that I wish I had taken screenshots of the virtual art gallery before I transformed her from a caterpillar to a butterfly. When  I told people that it would be going through a slight redesign they didn’t understand what was wrong with it. They thought it nice to look at and functional. But I had a vision. I had a strong idea of how I wanted this transformation to happen. The caterpillar phase used the colours from my book. The butterfly phase uses the colours from the World Lupus Day logo but with a stronger background to make all the elements pop. The layout is basically the same. But with a redesign of the colours and adding some elements, the transformation was quite noticeable. Beautiful and gorgeous are some of the words people used to describe the new site.

I don’t know where I’m going with my thoughts at the moment. I do think what I did is quite impressive. Even if you do not take into account that I have been having to spend roughly 12 hours of my day sleeping the past couple of weeks, I did something few would be able to accomplish. Well at least not in the time frame that I had set for myself. Before the site underwent its transformation, it had 3 pages and 10 posts. In less than 24 hours there was an almost complete template redesign, now has 13 pages and 36 posts, 6 videos (4 of which I had to edit including 1 that I created), a dedicated YouTube channel, 12 photo galleries comprising of 73 different photos, 4 songs and a whole bunch of links. I accomplished all of this in less than 24 hours. I even had a couple of hours to spare before my self-imposed deadline. And when I was done, I was beyond exhausted. I still am. I thought I would look forward to a week of rest and nothing added to do. I was wrong.

I have been so bored this week. I am use to having a million projects on the go at once. My brain needs to be kept busy and engaged. I like deadlines. I like having more to-do lists than should be legal. I need to have these things. If I don’t, my brain because listless and it wanders. I have been beyond exhausted. My current flare is kicking my ass in more ways that I can articulate. Despite it, I still have drive and ambition. My passion is still ignited and my need to be productive has not been stamped out. I can still accomplish huge things despite it. My body may not physically be able to do much these days but my brain (even when really fuzzy as it currently is) can still accomplish great things.

This frustrates me in a way. I think what frustrates me is there are so many jobs I can do. There are so many things that can be accomplished over the net. But for whatever reason, it seems potential employers are hesitant of either creating new telecommuting jobs or transforming jobs once thought of office jobs to telecommuting jobs. And there are so many tools that make this transformation so simple and these jobs effective. This past week has reminded me that I can still get a lot of things done and in very little time. And while a lot of people close to me are probably thinking I should be resting and recuperating instead of trying to find myself another big project, afraid that I am going to collapse and my flare get worse (which could very well happen and yes I do need rest), I know what I need.

I NEED to feel productive. I need to feel as if I am accomplishing something ESPECIALLY when I am feeling dim instead of brilliant. I need to have something that reminds me, sure I am not as brilliant in some areas of my life as I once was but I have found new ways to be brilliant. I have found new ways to shine. I found ways to turn things that are a huge disadvantage into an advantage. I have not given up.

Yes, I still need to find balance. Or better yet, I need to learn balance. I tend to overdo it as a result of a variety of things. But honestly, the resulting beyond exhaustion is so worth it. Because I feel good about myself. I do not feel like something that should be thrown out with the trash or shot like a lame thoroughbred because I cannot race like I once could. I think for once I want to be noticed. I try to fly under the radar for some weird reason. I have asked people I have interviewed to not make a big deal out of it so that I could remain unnoticed. I don’t do things so much to get noticed by others but for my own sense of self-accomplishment.

But I think this may be changing. The more I accomplish, the more I see the finished results of the crazy ideas that I keep having , the more I think “Holy shit! That is pretty awesome! Even if you do not take into account my disability, that is pretty awesome!”. And then I look at the world and feel a little slighted that there is so much I can do from the comfort of my home, despite my crazy but necessary sleep/rest cycle, yet I cannot find opportunities to use my very unique and what I consider awesome skill sets. I feel defeated when opportunities are not presented to me. I know you have to work to find things. And even though I don’t get huge recognition, I still get my fair share. Close to 200,000 page views in less than a year on Geeky Pleasures without any real promotion is an indication of this. And when I think that Fark only got 30,000 in their first year and in a time when they had no competition like I do now, I feel accomplished. People keep telling me how much they love what I put out there and there is a part of me that cannot help but to think “then why isn’t it paying off in some real way?”

I really do not know where I am going with this, either with my current thoughts that I am spewing out as I think them or with anything that I am currently working on or want to work on. Maybe that is part of the problem. As I’ve said, I’m bored. Even so I am still producing things on a daily basis, I am feeling unproductive. I need something that I am not getting at the moment. I need something that will really engage my brain. I need something where I feel creative. Maybe something will present itself, maybe it won’t. Maybe I’ll find an opportunity, maybe I won’t. I do know that something needs to happen soon before I start once again feeling dim instead of the brilliant that I am.

In Which I'm Antsy And Excited

May 7th, 2010

What a freaking crazy week! I don’t even know where to begin. And the crazy isn’t over yet. I have a feeling I will not have enough hours in the day to get everything done that needs to get done this weekend. Submission deadline for my World Lupus Day project is tomorrow and despite over 100 people saying they will do something, I have yet to receive much.

Then add to this that I am currently experiencing one of the worst flares I have experienced in a while, a cold and stomach bug, a happy Jules is not a well Jules in any sense of the word. To say I was ill would be quite the understatement. I wish I had a dark corner that I could crawl into and sleep for eons if that is what it took to feel slightly more human. The way I’m feeling at the moment, it feels that it would take forever and a day to feel better again.

And then there is the song. But OMG YAY, I managed to get my vocals recorded and in 3 takes. And let me tell you, that was quite the trial. I can’t count how many tears were shed out of frustration. To begin with, I haven’t sung in at least 3 years. Nothing more than humming around the house and maybe quietly singing a line or two. Nobody has heard me sing in quite a long time. Then add a cold which leads to a sore/hoarse/laryngitis throat/voice… it is not a nice mix or sound at all. As well, I was afraid that I would have to sing sections of it at a time, over and over again, and then piece it together to create a final track. But nope. I managed to sing it straight through and in a pretty consistent fashion without it sounding atrocious. There really isn’t too much that needs to be done with the vocals besides EQ and cleaning up the noise and a few other small things. Or at least, that is what I think. Also, my pain levels are at a 8.5-10. I had to sit to sing as at the moment I am not capable of standing for more than 30 seconds without the pain becoming intolerable.

I have a whole new appreciation for those who participate in Song Fu. I kinda co-wrote this song and I still had quite the difficult time learning it. I received the very first draft of the song last Friday, made changes over the weekend, received the changes, tried working with the new music and couldn’t wrap my brain around it it, asked for more changes, learned the changes really would not work after trying to work with them, went back to the second incarnation and really listened to it to hear where exactly it wasn’t working for me, made some changes, moved around and edited some of the music, and sent the changes back to Denise and then attempted to bang out the vocals in one day. Okay now that I actually listed this process and I realized that I’ve only had the basic demo music for not even 2 full days, I think I’m even more impressed with what I’ve accomplished especially consider I don’t write music/songs, haven’t used my vocal chords besides talking in years and am extremely ill.

Now, it still isn’t perfect. Far from it. It isn’t any where near close to the caliber I was once capable of. However, considering I only worked with the music in its current form for maybe 5 hours total, sang the song maybe 10 times, am ill, it is passable. I do not hate the results. That is something. Especially considering I am a huge perfectionist and my own worst critic. And after listening to the finished demo with my vocals for the past hour, I still don’t hate it. I still think it is passable. I am actually smiling when I listen to it. I don’t want to go as far as saying I like it but I am satisfied, considering. And despite me cringing every time I hear my mistakes (they are extremely loud to me), I still feel it is passable. If you knew me, you would understand that is actually a pretty major thing for me say.

And now the above is in the wonderful hands of Denise for her to clean up a huge amount of noise on my tracks and add some other touches including her own vocals. Oh yes, aside from the above obstacles, my sound card has been acting up as well. If there wasn’t a lot of white noise (I don’t understand why all of a sudden) there were a couple quick demos recording for the first couple incarnations where the sound was quite distorted. Hopefully the white noise can be removed adequately without distorting the sound.

I’m antsy and excited to hear the finished product. I will either have it late tonight or tomorrow at some point. I am also antsy and excited to see and hear what else comes in for this project. And hopefully I make it through this weekend intact and Monday’s launch be a success. I’m also worried that everyone who said they’d do something won’t come through. I get that way when people cut it close to deadlines. I always finish well ahead of deadlines and I have a hard time dealing with people who wait til last minute. It causes me anxiety. However, if every one does not come through, at least I will have some material. And hopefully, next year it will be bigger and more successful as it won’t be such a last minute idea.

Phew. Must. Remember. To. Breathe!

In Which I Feel Triumphant And Defeated All At Once

May 2nd, 2010

So the lovely Denise Hudson wrote a very wonderful song for my World Lupus Day project. Lyrically, it spoke to me. It very nicely tells of some of the struggles I personally go through with my lupus. Musically, I thought I could sing it. I thought maybe I can do this. And then I attempted it and failed miserably.

Her original version would musically go one way and my brain wanted to go another. At first, I thought my inability to sing it was due to a number of factors I do not think I can explain, so I won’t. I’ll just say it didn’t quite work for me even so it was a very good piece. So I asked her to send me the guitar only and I would attempt it that way. I listen to her vocals 3 or 4 times, I then played the guitar only once and then attempted to sing. I failed. The song in that version did not breathe in a way that was natural for me and brain was still wanting to go directions musically that the first version was not going. If I had more time to learn the piece, then maybe. But we are on a deadline here.

I listened to the guitar only a couple more times in an attempt to *get it* when I realized that I couldn’t get it in it’s current format. So presumptuously, I thought of how it would work for me. I found a melody in my head. I hummed it a couple of times to see where it would go. Then without thinking, I horribly recorded what I heard. I felt so defeated. I use to be able to sing. Melody wise, I think the song works. However, vocally it really is shit.

I do not write music. Music really isn’t my thing even so I know music. It just isn’t something I do. Apparently, I have now co-written my first piece of music (even so there was no actually writing involved. I heard a melody and recorded what I heard in my head with one take and one attempt). Given this, I do feel a bit of a personal triumph. I did something that I never thought in a million years, I would do. I made music. But I could not sing it. Not even close despite what others may think.

Maybe it is because they have never heard me sing. Maybe it is because I know what I am capable of. What I produced was a million miles away of where I use to be vocally. I was so frustrated with this yet another reminder of how I once use to be brilliant and now am dim. I cried. It is very frustrating for me when I am served with harsh reminders that I am no longer capable of the things I was once very capable of. Not even close to the same ballpark of capable. I thought briefly that with some practice, I may be able to do it.  Nothing but failure ensued. Mind you, I only attempted it a couple more times. However, this is one of those things that I know if I’ll get it or I won’t. There was no way I was going to get it. So I said, I’m not going to do it. Then I stopped thinking about it. I walked away.

I had put it completely out of my head. So far out of my head, that I forgot the melody that I had created. That part isn’t really all that surprising as I had only attempted to sing it a handful of times and only listened to it a couple more handful of times. Then last night, out of the blue, it was back in my head. The melody kept repeating itself over and over. I could not get it out of my head. However, it was slightly different. It was in a different key. It was one step lower than what I had originally attempted it at. One step lower of the miserable failure. I took this as a sign that even so I had quit, my brain was not going to let me quit so easily. I am supposedly a fighter after all and do not give up.

So without thinking and without attempting to sing it once through first, I recorded what I heard in my head. I didn’t put any more effort into it than the first time I did it. I sang it sitting down, with my knees up to my chest and with no air behind it whatsoever. I just spat it out. And you know what? It wasn’t terrible. It was still shit. It was still a million miles away from what I am capable of. A million miles away of where I once was vocally. However, given the fact I have a cold, my lupus auto-destruct sequence is activated, and I made no real attempt to sing it, it isn’t that bad. I think I may just be able to do this after all. I’m not feeling so defeated anymore. I feel as if I could be brilliant once again.

Given I only have 5ish days to do this thing (if I do it) it will never be up to my standard. It will never be up to what I know I am capable of. And this isn’t overly self-critical Jules talking. I am realistic and I know what I am capable of and what I am not. Now even so it will not be up to what I use to be able to do (when you don’t sing for 3ish years and are very out of practice, it takes a long time to get the old vocal cords back into shape), I think I can get it to a level where I think it is passable.

We will see I suppose. I am still at the maybe stage of doing this. I am going to attempt it anyway. And if I can’t, then I can’t and Denise will sing it for me. And if I can, I can. At least I am attempting it. It may be a foolish attempt. We will just have to wait and see, won’t we?