Get Over Yourself

 BETTE DAVIS IS MY LIFE COACH!!




Chris "I'm having a flare up. I'm in pain. My life sucks. I woke up deaf the other day. Sometimes I can't see well. My feet are swollen and I'm like Rick Ross fat."
X: 

Chris: "Um. . . but. . .what about my TRIALS AND TRIBULATIONS?!??!"

 X: "Seriously. It's a downer. I mean I know you try to make a joke out of it but at some point talking about your Lupus flare up really is kind of. .  . depressing."

Oh wait. You don't want to listen to me whine? Oh. ** swan dives dramatically off pillow top mattress**

Well. Damn. Oh wait I PAY someone to listen to me. Why am I trying to get people to do it for free?

** throws a bucket of cold water on my own face**

It's been five years since I was diagnosed with Lupus and the reality of living with a disease that consumes your body and seeks to consume your mind is a constant carnival of new experiences. The honest truth is that people care about me but they don't need to know every little development in the war of terror my body is raging against me. People want to know I'm doing well. But the reality of the situation is that there are only so many updates on bloating, swelling, shortness of breath, blood clots, headaches, joint pain, rashes, and temporary blindness/deafness a person can take before they are just. . .not interested anymore. ** looks around to the sound of crickets** ** feels my own fat settling on my back **

It's not that people aren't interested but they can't DO anything about it so they can't tolerate hearing about it. In recent weeks I have begun to give some updates because I'm SO amazed by the shit by body has thrown on me. I find it utterly comical but I realize not everyone finds it so. But then I remember this isn't everyone's business or battle. This is my tale.

When  (with a big L)  first noticed as a disease it was given it's name because the rash that was common to people with the disease made them look like wolves.




I have always been drawn to the fantastic and the impossible. I have always had an affinity for the improbable.

 When I was young I loved Thundercats and He-Man. I also loved Care Bears and the Wuzzles. As I got older I loved The Twilight Zone and The X-Files. Star Trek and David the Gnome were a way for me to escape.



The advent of the Science Fiction channel was like a specific boon sent directly from the gods to my television set.

During these times I can look to these things and find solace in the improbable because at one time my survival was improbable. All the progress we've made was made by people who ruled out the impossible and made it possible. Fantasies and dreams are the fuel of the future.


But seeing into the future is only possible when you aren't blinded by the limitations of the present. Focusing on what I cannot do is exactly what will prevent me from accomplishing what I am capable of doing. If I do need to wallow I can do that with some Muddy Waters, Ruthie Foster, Blind Willie, or anything from the Stax Volt. I can start a "bitch" journal and write until my heart is content. I can turn of my phone and sleep until I wake up with perspective. I can hit up iTunes U and learn something new. I can buy a coloring book and put those colored pencils to work. I have about 50 books I need to read. I have Comcast on demand and Netflix instant view. I am not hungry or exposed to the elements.  Perspective. I have this blank pallet in front of me with endless opportunities in front of me and as long as I remember that these hard days are temporary I can paint whatever picture my heart desires.  The point is there's a time for sadness because without it I could not cherish the happy days. But when that sadness has ended it's time for the FANTASTIC. I am bubbling with fantastic and I believe in the possibility of myself.

Journey

Starting a journey that will change everything as you know it is not done lightly. . . .

 Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer. Perhaps you do carry within you the possibility of creating and forming, as an especially blessed and pure way of living; train yourself for that but take whatever comes, with great trust, and as long as it comes out of your will, out of some need of your innermost self, then take it upon yourself, and don't hate anything.  --- Letters to a Young poet

Einstein once said that he wasn't particularly smart he just had the patience to stick with the question longer than other people. During the past few weeks I've had to ask myself what is my purpose. My mobility is limited because of new treatment so I have plenty of time to sit and think about what I will do when I am able to do anything at all. I have two options: be patient or go crazy.  Patience gives the reward of comfort in silence. Ease in solitude and respect for thoughts that are born of loneliness.  Crazy makes me nervous and gives me a rash. . . so patience it is.  Lupus is latin for Wolf. When the disease was first characterized people noticed the rash gave people a wolf-like appearance. I find a comfort in this insane label. The wolf-disease. Like there's a patient strength waiting inside of me, helping me cope with the myriad of craziness that is my body turning on me.


To maintain poise in times of pain has become my new default position. With every passing discomfort that I survive I am left with a fresh perspective on how to beat the next complication. When the pain has gone it leaves behind the essence of gratitude, and with the release of tears grief is washed away.

I have found that creating my own history and defining my own principles are enough to keep me busy for not just this life but also the next. When you think for yourself you are also tasked with keeping other people from thinking for you. True and introspective self determination requires a hyper-vigilance that is not easily maintained. My desired personality is a well designed machine, and my natural attributes escape as byproducts of clash between personality and desire. The combustion of those things create a existential substance I have yet to figure out how to properly dispose of. There is an array of emotions and feelings that escapes like smoke from every pore in my body and varies like the Endless family created by the fabulous Mr. Neil Gaiman.

I look at these feelings rising up around me and I process them as best I can. I wrestle with them. I lose to them and sometimes I beat them. 

I have a sharp tongue and a wicked wit. I have a hot temper and I'm prone to hold grudges. I offer forgiveness before I've healed from a wrong. When my heart has been damaged it heals in stone lines not skin, making it ever more difficult to access.

It is my hope that by projecting the image of who I want to be I will speak that person into existence. She won't be second nature, she will be first and only nature. I am already well aware that chaos and creation are both sides of the same coin. You can only hate someone if you have some feelings for them in the first place. Love makes us better and hate is a useless emotion. I am brave enough to look at myself see my faults and address them head on. I'm not afraid to be with the person I'm creating and I am working on not judging others because they aren't ready to do the same.

In times of deep and stoic sadness I have looked up from the bottom of what I thought was endless loathing and found there are still depths to go. With the realization that there is more that can go wrong I am confronted with all that can go right.  I am soothed by my unwavering sense of self. I am confident in my belief in my own rightness and I am dedicated to the path that I have drawn for myself. I see that as long as I have a beating heart there is blood in my legs and I can use them to walk with honor. I aim move in grace. I fight to be good and I pray that my regrets will be few.







"If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think." ~Winnie the Pooh