I’ve been doing a lot of thinking lately. Despite being busier than I have in a very long time, I find my mind drifting off, as I mechanically go through the necessary tasks of each day.

Writing this blog is a bit premature, as it will lack a little bit of background. This background (for those who are unfamiliar) will be in my article for the January edition of The Lupus Magazine. I will say this has been yet another year in my life where I have had to reinvent myself (some of the other times are described in January’s article). I’ve had to take sizable setbacks and disadvantages and try my best to turn them into something positive.

When 2010 started, I had no idea what I was going to do with my future. I had just finished what I thought would be my last broadcast. I had tried my best to remain optimistic, that another radio opportunity was just around the corner. But as the months passed, nothing was on the horizon. I had lost every luxury (cable, internet connection and telephone). If it were not for my landlady, I would not have been online at all passed March. If it were not for a couple of donations on Geeky Pleasures, that website and this blog would have gone dead in March, as I could no longer afford even the 10 dollars a month for hosting.

Then slowly, things started to improve. Extremely slowly. Painfully so. And not only did I spend 2010 fighting off financial ruin, but I spent almost the entire year experiencing one of the worst Lupus flares I have had in years. I was extremely worried that more organ failure, or worse, another stroke was just around the corner. I think I did a very good job hiding that fear, even so I did allow the stabby to be public now and then.

In July, every thing was in threat of going dark, yet again, including my newest project The Lupus Awareness Virtual Art Gallery, launched World Lupus Day 2010. But thanks to Will Bradley and a fabulous offer to sponsor my hosting, every thing stayed online and I was able to keep fighting and attempt to build a new life and career for myself, all the while fighting off what felt like death waiting just around the corner.

By the end of the year, my health FINALLY started to improve, plus opportunities were finally starting to present themselves. Now I end this year running my three websites, contributing to two others, writing for a magazine, being the layout and design editor of another, plus building a brand new radio station with a more than amazing staff. I’m far from in a stable financial situation again as most of this is a labour of love. But I am much better off, physically and emotionally, than I was at the beginning of this year. It will take a few more events before I’m finally able to breathe again, as far as finances are concerned (regular paying sponsors/advertisers for Geeky Pleasures would be more than fantabulous) but I am not starting 2011 with dread and not knowing how I’ll manage to feed and clothe my children, never mind put a roof over their heads.

Most importantly, I have made some amazing friendships this year, thanks to this wonderful thing called the internet. Plus, I’m in a pretty groovy relationship, which brings me a lot of inner calm and helps me to find my center when I’m having moments of OCD/ Aspie Spiraling /Twitchy Brain/ Toaster/ FUCK THIS SHIT! Without all of you, rebuilding my life, yet again, would have been extremely difficult. The last few times I went through periods like this, I had no supports, neither physical nor emotional, and it nearly broke me both mentally and emotionally. I still may not have the physical supports I need to get through the nasty lupus periods, but all of your emotional support has meant the Universe to me.

Thanks for travelling from the mundane to the insane with me. Thanks for deciding to join me in another year of this wonderful journey, without a destination.

<3 <3 <3

xoxo

It is difficult for me to express myself when I become emotional. I know I’ve said this many times before and at times I probably sound like a broken record. I have a hell of a time coming to some form of rational expression. And this past month has been one long emotional roller-coaster.

I have this “thing” where I need to understand as much as I can about anything I come into contact with. This also translates into a need for understanding from others.  And at times such as these, I find is even more paramount that people understand where I am coming from, as the cause for this emotion is incredible acts done by others. I am very good at saying I feel (emotion) because of (action). However, putting a fitting label to that emotion or translating how that emotion is affecting me remains a near impossible task for me. I need a lot of time to contemplate the state. And until that process is finished, overwhelmed or touched are the only words I can apply. They never seem fitting or adequate enough. A small handful of people understand me to a great extent. One person has taken the time to really see me, understand me and “get” me, when no others can. I don’t even have to attempt to explain it, this person just knows. Which I find pretty amazing as he is emotionally driven and I am driven by logic. But we always seem to come to the same place even if the drive is from opposing sides.

Maybe a refresher on some of my history is in order here to try and articulate all of the causes that have led to this effect. Growing up, I was invisible. I was only “seen” when I showed qualities that made others happy. However, if the real me ever decided to make an appearance, it was quickly told that it was unacceptable. If I wasn’t the perfect and happy child, I was fed messages such as “Jules, you’re a happy child. Nobody likes you otherwise”, or “Jules, you never make mistakes. Nobody likes a failure.” And being as I was a born perfectionist, this did not help. There is a comment on my Grade 1 report card which reads: “Julia is trying hard in all areas. She shows anxiety at times as she wants her work done to a high standard of quality. She would benefit from learning to relax and take some of the pressure off herself.” The last thing I needed was for people to add to this.

Then I developed an invisible illness, which for the longest time, nobody wanted to acknowledge. It was whispered about and gossiped about. I was told I was a hypochondriac. I was told I was not allowed to be sick. One comment that really struck me to the core when I was very ill as a child, “You cannot be sick. I grew up with a sick mother and there is no way I can handle a sick daughter.” I had to hide everything that made me who I was: physically, emotionally and mentally.

And now I have people who see me. And I get really emotionally overwhelmed when they do things to illustrate this to me. When you go your entire life being invisible and then suddenly you are visible, there is quite the adjustment. Well for me there is. I’m not always sure what to do with it beyond saying thank you, that is means a lot to me and is so very appreciated. Unfortunately, that never seems like enough.

I’ve had people reach out to me in the last year and a bit in ways that I find extraordinary. And I will admit, there is the small, broken child in me that feels it is undeserved and questions it. The rational part of me knows I deserve it. But feelings and rational thought are not all that congruent. The result, I find myself struggling to incorporate the two and be comfortable with it all.

As with the World Lupus Day in May of this year, some very amazing support has been shown towards me. However, I have to say this past month has been a month that has been filled with turmoil. There has been so much crap thrown at me. I’ve had a lot of extra work to do (I’m not complaining as I did bring it upon myself). My health has been very poorly. But despite this, I haven’t found myself thinking a single time this month, “Why me!?! I’m a good person! Why do I have to have all of this shit?!? What have I done to deserve this?” Tears have been shed, yes. But those tears are the result of these beyond amazing things people have done for me and have said to me. I honestly do not think I would have survived this past month without all of the people who’ve shown me even the smallest bit of kindness and appreciation. It may sound trite, but I cannot think of any better words at the moment.

Not only have people accepted that fact that my brain does not work like “normals”, they’ve accepted the periods where I have been dark instead of my normal positive self and they’ve accepted my disease. People choose to listen to me when I need to vent. People have chosen to walk this road with me. And a good chunk of these people who’ve made these difficult choices have done so because they want to, not because it was asked of them.

I was fed messages telling me that nobody will ever love and accept me if I did not remain perfect all the time and that nobody loves someone who is ill. I was told nobody would ever be with me if I was anything less than expected. Despite being told this is how the world works, I still went out of my way to be there for others in any way that I could. I never expected that it would ever be returned. Yes, I had hoped it would be but I’ve never done things with an agenda or with this idea of, “If I do this, they will owe me.” Given this, it takes me a while to incorporate this new, unexpected reality into my preexisting schema.

Normally, I hate to single people out who’ve touched me because I never want people to feel they are any less appreciated than others. I know how that hurts. I don’t have a hierarchy when it comes to those I have decided have great importance in my life. I may appreciate them for different reasons, but they are appreciated equally. However, there are three things done this past month (aside from Phil Plait and Stephen Fry helping me to spread awareness) that really touched me to my core that I think deserve special recognition.

The first thing was done by JoAnn Abbott. For the Lupus Awareness Virtual Art Gallery, she folded 1000 origami butterflies and sewed them into curtains. She started this project back at the end of April. So for 6 months, she poured her heart into it. Now if that wasn’t grand enough, she added a lot of personal touches to some of these butterflies by including pictures of those who love me and I love back, pictures of some of my biggest supporters. These are people that if I were to lose them… well I can’t even think about that. You would think JoAnn and I are close friends for her to do something like this. We are not. We have had some issues. I am thankful though that we’ve been able to sit down and discuss them. Our issues don’t have anything to do with dislike but we do have conflicting personalities. Despite this though, I believe I can consider her a friend. She tries and her effort causes me to want to try in return. And I can say that regardless of what issues we may have, she does honestly care. And for that, I am grateful.

The second thing was done by Stephanie. She contributed yet again to the art gallery and what she did was beyond words touching. It was such a wonderful gift and I was shaking when I read it yesterday. Her contribution went live today. Please read it.

And finally, there is Joe. Dear, sweet, Joe. The man who teaches me about my emotions through logic. The man who always finds the right thing to say exactly when I need it. I don’t even need to say something is going on with me. Before I get the chance to, he sees what is going on and will  do or say something that allows me to move forward. He brings a calm to the center of my storm. Amazingly, he finds new ways to surprise me. Seriously, this is not at all easy.

Earlier this week, he made an announcement that he’d be reading The Halloween Tree as a special broadcast on Halloween. And then yesterday, he announced on Twitter that this special broadcast would be to raise money for lupus charities. Halloween marks the end of World Lupus Awareness month. I cannot say why this event has me a quivering mess without getting too personal. I can say he had already done enough and more than I could ever expect from him. He may tell you otherwise. He may even claim he hasn’t done enough or could never do enough. But I’ll argue differently.

And just when I think I’ve had enough awesome events to cause me to go into an emotional tailspin, within a couple hours of announcing this event and the donate link becoming live, Joe reached 60% of his fundraising goal. Because of this, Joe has increased his goal from £100 to £150. Seriously people, the fact people are acknowledging Lupus and supporting Joe’s event… all I can see is that it feels weird not being invisible as that is how I spent 33 years of my life. If you cannot attend on Sunday, please check out http://www.justgiving.com/JoeLamb. Regardless if you can or cannot attend, or if  you can or cannot donate, please pass on the link and information.

Anyway, I think I’ve babbled long enough and have vented some of this emotion and tears. Now, I must get back to work. There are still two days worth of updates to the gallery and a bunch of other work I need to do. Even so I know I’ll survive the last couple of days emotionally thanks to all of your support, I will not physically if I am up all night instead of resting.

You all are rock stars. And I feel like some inept buffoon, unable to articulate how much I truly appreciate it all.

Thank you for reaching back when I have so clumsily reached out. <3