Reflections From Within The Calm Before The Storm

September 30th, 2010 by Jules Leave a reply »

All week long, my inner monologue has consisted of, “Breathe, Jules. BREATHE!” Tomorrow begins what I’m hoping to be a very busy months of updates to the Lupus Awareness Virtual Art Gallery.

I started this week in a celebratory mood, which quickly change to anxiety and a sense of being overwhelmed. The anxiety stems from thoughts of, “What if nobody contributes? Yes, I’ve already received a handful of contributions, but what if that is it? What if nobody actually cares enough and are just blowing smoke up my ass saying that they’ll contribute something? Worse still, what if nobody bothers to visit the site to see the wonderful things that have been contributed? What if it doesn’t raise any awareness? What if my grand hopes and dreams of actually making a difference, completely and utterly fail?” The sense of being overwhelmed come from exact opposite thoughts. Damn me, my duality and ability to think rationally, seeing all sides of the situation. Plus add illness, children and a busy schedule. This combo can create chaos and this is when living moment to moment really helps.

I am also very… ummm… emotional? I am not quite sure what label to attach to my current state. When I launched the gallery in May for World Lupus Day, it brought up a lot of emotions for me that I normally do not have to deal with on a day to day basis. I’m having to look the elephant straight into its eyes and really face it. This project forces me to be real with and about my disease in ways that I don’t always have to be. The elephant is never completely ignored or denied but I can paint its toes red and hide it in cherry trees when needed.

I’m also still very angry with my disease at the moment. I have been running a fever for two weeks straight, my vision and brain are being attacked, I’m not sleeping, I’m on day three of a migraine from Hades and the list can go on. But I have had some really good emotional supports and have been able to mostly turn my mood around, even so I’m still quietly raging in the back of my mind.

I woke up this morning with an added spring in my step, despite the fact if I were any more tired, I would be dead. I woke up this morning in a very good mood. I woke up this morning filled with hope. I woke up this morning filled with excitement over the possibilities for the month ahead. I woke up this morning going over my final list of every thing that needs to get done today in order to facilitate the smooth operation of both the Lupus Awareness Gallery and Geeky Pleasures. I woke up this morning and began finalizing my battle plan, created to help reduce any undo stress this month may cause. I woke up trying to pin down what my contribution for this update will be.

My joy, happiness, excitement, wonder and anticipation was turned into profound sadness. I am still filled with intense sorrow over the suicide of one of my former students. Today, I learned that a fellow Lupus Warrior committed suicide because she could no longer deal with the pain of this horrible disease. Sadly, this is not uncommon. I’ve said it before and I’ll say it again, I believe the psychological effects of Lupus are much more difficult to deal with than the physical.

It is rather difficult hearing, over and over again, “But you look fine”, “Are you really sick?”, “You have what?” “It’s never lupus”, “What do you mean you’re tired?”, “Stop being so lazy!”, “Oh don’t pay her any mind. She’s a hypochondriac.”, and the list can go on and on and on. It gets really lonely when you are surrounded by people who do not understand. To make it worse, they choose to not understand. It makes it more difficult when it is your own family who makes the choice not to make an attempt to understand. Boy, do I ever have stories about that one. Aside from suicide, a number of those who suffer from Lupus turn to drugs and alcohol. The Lupus road is far from an easy one.

I’m so very sad right now and really do not feel as if I should be celebrating. This sadness led to the following status update on Facebook,

As Lupus Awareness Month starts tomorrow, it breaks my heart to learn a fellow Lupus Warrior could no longer cope with the disease and decided that taking her own life was the only way out. Many of my fellow Lupus Warriors are currently getting their asses handed to them, including myself. I hope we can continue to find the strength within ourselves and each other to continue the fight.

Lord knows I will need the added strength to get through this next month. Today’s news has drastically changed my outlook for the coming month and what I want my aim to be. I never want another person to feel alone again, especially someone who has to live with Lupus. I wish I could reach out to every single of the estimated 5 million Lupus patients worldwide and really let them know they are not alone.

I want to let them know that it is okay to be angry. It is okay to be sad. It is okay to rant and rage and say, “FUCK YOU LUPUS!” I think it is so very unhealthy to paint your face with a smile, all the while you are screaming on the inside. This just leads to a feeling of being further isolated and feeling as if nobody gets it. Which leads to a feeling that you cannot talk to anyone about it because they will try and shove rainbows and unicorns and positive thinking down your throat. Which leads to you feelings as if you truly are alone and isolated. Which leads some to think they have no other option than to leave this life because it is all just way too painful and they cannot go on pretending otherwise any longer. It leads to thinking that if they were honest, they feel they will be rejected.

I want for people to have a place where it is safe for them to just say what it is that they have to say. A place where they do not get met with any sort of, “Cheer up.” A place where they are told, “That sucks! And it is perfectly normal for you to be angry. It means that you are alive and still fighting.” In my own experiences, having such a place has caused my moods to go from angry to once again finding the humour in situations in quicker fashion. A place of real love, understanding and acceptance. If I had not found that place, I do not think I’d be alive today.

I’m heartbroken. Lupus fucking sucks big blue hairy monkey balls.

Maybe I’ll find a way to dedicate the Lupus Awareness Art Gallery to all of those Lupus Warriors who couldn’t find their place and succumbed to the part of this disease that is the hardest part to battle, the psychological effects. Their battles and their pain cannot go unforgotten or be in vain. I just don’t know how to accomplish this without it being a downer, even so it is really quite sad. I want their lives to be acknowledged and celebrated for all that it was, both the good and the bad.

I don’t know. Maybe I’ll figure it out. I’m just really heartbroken right now and feeling a bit useless, with many thoughts of “I wish there was something real I could do”.

So there we have it. The good. The bad. And the down right miserable. I suppose bottom line as I take time to reflect in this calm before the storm, I still hope…


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