Sunday, September 16, 2012


I have had people give me credit for exposing myself in this form...and while i was lying in bed tonight i was night dreaming about driving to Madison tomorrow - you see I used to drive to Madison all the time to see my friends in college and then I even lived there for a fabulous summer.  But then everything began to slowly collapse and a "simple" trip to Madison to see one of my best friends doesn't feel so simple anymore.  And all of a sudden the confines of this illness and its extraneous after shocks that continue to rumble through your body, mind and soul were haunting me.   I said to a friend earlier that I now know why the caged bird sings and its song isn't pretty.  I do my absolute best every single day to be grateful of all I have been given and all I have learned but the loss of self this illness has imposed is like that poor cage bird singing - screaming - please let me out...
I have always had a visceral reaction to people wrongly accused - an unexplained pain hits the depths of me when i hear these stories of those put in cages - treated less than human no longer a name - but a number - for something that as simple as a DNA swab sitting in some lab down the street could let them fly free.  I don't know, but from what I have heard prison strips you down to your nakedness - literally and figuratively - and perhaps that is why i empathize (with those wrongly accused or otherwise)  since I feel like this illness has stripped me down raw - vulnerable - exposed - I have lost a bit of faith in myself - I don't look in the mirror and see strong and independent staring back at me the way I use to feel.  I force myself to realize I am strong to deal with all these crazy ass symptoms, but like that wrongly accused individual - I have to force myself to see what others may not be seeing, or  see past the constraints.  And like those prisoners that must focus on hope so they don't become bitter when the chains are removed, I relate - I work hard to have this illness not crush me but lift me up ( oh this is sounding so Oprah right now - "Let your surroundings rise up to meet you...ha)  So, while I am thankful and gracious that some may view writing this little blog that a few people may read as being brave - it is nothing like walking this world with an entire new identity that you didn't really sign up for - this is the easy part - it is a place and space to come to peace with how naked  I feel  each and every day since this journey began.
I now understand my grandmother's lack of modesty after being a long term cancer survivor - this physical body i inhabit bears little resemblance to what I connect to - it betrayed me a long time ago - so poke - prod - take blood - in and out - do whatever you have to do - but please just figure it out. It wasn't until i entered the blog world of this illness and began reading other people's stories that I woke up to the depths this illness reaches - because this symptom of feeling like I am not only losing my physical health - but a part of who I am - what makes me  - me - seems to be almost universal.  I have heard people say or right that they feel like they are dying from the inside out - that they feel they have lost themselves...the descriptions go on and on - 
Its that unexplained little caveat - just like the irony of exercise making you worse - that you can't measure or explain - but if you are living with it you and read someone else's words that aren't the same as yours but they don't have to be you see right through them and tears well up because you no longer feel so alone in this mystery.  
This illness begins with a question...what is wrong with me...this vague set of symptoms that at first make no sense at all but as you keep moving forward and become blessed with doctors that are interested in thinking inquisitively asking questions to which they may not find answers - you have begun the first step.  What no one tells you is to be prepared for it to slowly erode how you feel about yourself.  All those things you DID that defined you....they slowly get taken away...the parties you hosted, the travel you did, the golf you played, the concentration you no longer have, the ease of eating out is stripped, then comes the shoes - oh how you loved heals - but you can't stand on them anymore - then the clothes you can't where because you are hot one second cold the next - then the hair dye that you are allergic to - or going to the hair salon b/c all the smells and the head back in the sink - its too much - everything is too much - so you cling to the simple things - you learn to appreciate what others may gloss over - you meditate on the beauty that is in suffering and the compassion it allows you - you find the joys of 30 minutes at the park - or two hours at the birthday party - but even still - every joy you have is tainted by the sorrow of what use to be.
This past few weeks I have come to a point where I literally can not take this for one more second.  And then I wake up and do it all over again - and find happiness in what I have rather than disappointment in what I don't.  If I am lucky enough to be on this crazy earth for a lot longer - some tough decisions lie ahead - because I have reached the point where I will do whatever it takes to be better - not better for a month or two - better - really better.  I want this selfishly I want this so I can be the aunt I always thought I would be - I want to work again - I want to travel again to Europe not being consumed by will I be able to eat what is served if I can't communicate these f'ing food allergies.  I just want myself back - I know I will never be the same after this illness - I can only hope I can be better - and I will never give up.  I leave for Phoenix in less than a month - and I am scared.  I am scared to go for pieces of the trip by myself, I am sad for the time I will be away from those I love, but most I am scared that this will not work.  The reason I am going back and going back for longer is because it did work - the proof was in the aura I guess - when I returned at the beginning of the summer there were many comments that I looked different - and even though I now own 3 tennis skirts that I never felt good enough to wear after that one visit to the court - I bought them because it was possible - possible is what i cling to...
So tomorrow - I am going to do my best and get into my car and drive west - I need to feel free again - this "cautious life" that Sue Jackson wrote so beautifully about in her blog gets heavy - and maybe the fact that I am thinking I may even try means some of the shackles have begun to loosen.  They say after someone leaves incarceration its the beginning of a new and difficult journey - the key to freedom isn't the key to easy street - its just the key that will knock down that door - and what lies behind it may be just as terrifying as what you left - the rules, the lack of choices - and that is how this illness has begun to feel to me  - something that has clipped my wings - and in chronic illness everything is a process - even the healing - therefore I am hoping this caged feeling is in part due to a bit of healing, coming out of the fog that was so deep and so dark that the thought of breaking free was such a distant dream it was one i never dared to - a few years ago our friend who owns a floral shop sent my mom a little tree with three Monarch cocoons - and I was at her house when they began to break free - it was awe inspiring - the cocoon turns gold and they slowly break free from this dark snug place - its this delicate process and once they unfold they find the nearest window - they find the light out of the darkness and they are free.

 Naked - by The Bodeans -

 the song i couldn't get out of my head - i never knew all the lyrics before printing them out  - whenever i hear it - raw - vulnerable - exposed all come crashing down - 

Baby, ask me anything that you want
And i'll look you in the eye now
There can be no surprises
If we mean what we say
I've been around the block
And i've done some things
That i ain't so very proud of
Darlin' help me leave this cloud of
Rolling lonely behind

I'll stand naked
If you stand naked with me
I'll stand naked with you

In the morning when i look in the mirror
I look twice at what i'm seeing
If those eyes are really me then
Lord, have mercy on my soul
I'm walking forward but i'm walking alone
And i need some understanding
Hell, we all need some understanding
And i want you to know

My hands are shaking as i reach for the touch
And all i want to do is hold you
And i want to lose control
You are so easy to crave
The time has come for us to lay it all down
There can be no more denying
If i can't have you i'm dying
A little more every day

(take me out from the shadow)
I'll stand naked
(lead me down to the waters)
If you'll stand naked with me
(drown my soul in a sea of love)
I'll stand naked with you
(don't leave me haunted, 'cause)
(i believe in the searching)
I'll stand naked
(and i'll find my way through the darkness)
If you'll stand naked with me
(there are doors ahead if we see clear)
I'll stand naked with you
(they're falling open)

1993 Bodeans on Letterman - i was trying to find a good you tube video of this song and stumbled across the Bodeans on Letterman in 1993 - if you have read my  previous post you may remember me mentioning meeting Sammy (the lead singer) at a bar right after this performance and to my dear friend Gina's horror and delight i asked him what band he was in... still makes me laugh!

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