Thursday, December 19, 2013

Going Dark...

Last Rose Standing

The past month there has been a flurry of activity in the ME/CFS world with two documentaries gaining much momentum and press.  I was touched and appreciate all the FB shares, donations, and anyone who took the time to understand this quite misunderstood illness.  On the flip side I was surprised to find myself quite depressed and overwhelmed by the entire experience.  First, it forced me again to glimpse into the lives of so many individuals that are bound by this thread of uncertainty and pain.  It showed me once again that I am not crazy and I am not alone, however it meant again I am with a group that I would prefer to be outside looking in rather than the other way around.  It also made me feel quite inadequate, how are others making such a contribution when I feel that mine is so limited?  It forced me to look at myself and wonder what role did I play in not always having the emotional support I need by being quiet and silent, stoic and dismissive?  Have I become someone resigned to dismiss themselves?  And so with all those questions flurrying through a tired body and tired brain I have found the desire to go dark.  To withdraw and go within, like a turtle retreating to it's shell or a bear taking a long winter nap, I have found I need to be still and not worry about what is being accomplished, that I am enough yet I need to take some time to feel at peace with that statement.

I talked to my doctor the other day about how this illness has really taken all of my assets all the things I gained self worth from I feel have been stripped.  I have always been an extravert, I crave other people's experiences and being a part of them.  Now all I do is watch.  I feel a true part of very little.  At times I feel I am more focused on other's lives because, let's face it I have the time and it becomes the only way I even feel valuable.  I don't know if one can truly understand the isolation of this illness.  It's a harsh reality but there is no way to sugar coat that at times it feels as if all the little pieces that make you who you are begin to fall away and the puzzle that put you together is filled with holes.

Last month I went to the third floor of Nordstrom's where the Cafe is and I found my old table.  My favorite spot where to the right you can see out the window and the left see people walking in, and I just thought where did it all go?  I felt so happy to just be there, even though that is all I had done got there and sat.  I just sat with my thoughts and my bottle of water and coke in my purse and enjoyed what use to be.  I thought how this use to be one of my many "places" where I enjoyed spending time.  Now my "places" are limited and I didn't realize how deeply I ached for a simple trip to the mall where I use to eat the chicken pot pie and get a cookie, now none of which I can touch.  I sat and wondered will the ease of daily rituals ever be my life again?  And if not, just being here, knowing so many suffering with this illness could not accomplish this...

Last week I got quite ill again, and I really under-reacted to a serious condition.  I guess I have been so use to feeling overwhelmed and sick I just slipped away or didn't care.  On the second night after things got back in control I was in bed and I was so still.  Inwardly so still and I took inventory.  I thought to myself if I don't wake up tomorrow I could be happy.  I could be happy that I have left very little unsaid, left very few if any enemies, and I am not in pain, I am quiet.  There is a stillness to an acute illness where everything shuts down and you have nothing, not an atom of energy for anything else except the necessities.  Life becomes quiet and it is a beautiful and terrifying place.  I am so use to fighting, to removing myself from my body of symptoms, it was foreign to stop fighting and go inward and be at peace with this body I have often felt so betrayed by. I was thankful for all the work it has done...yet ache for the day I could run or walk and see muscle tone...or please oh please get rid of this "muffin top" tummy that is so foreign to me...ahh the joys of vanity!

Today as I was lying in bed with eyes closed, I thought of how lucky I am because the one thing I know is that I am loved.  I am loved and cared for by those I pay and those I don't.  People always seem to go the extra mille for me.  I heard Robin Robert's say she hopes she is different after her illness, and I have always said I didn't need to get so sick to understand the fragility and joys of life, but I understand the hope to be different.  The hope that when freed from this illness or living within it you can take this experience and transform it.  Transform it into something that you couldn't have imagined or dreamed and it is then all worth it.

We lost Nelson Mandela this month and I thought of how he never knew if or when he would walk towards freedom but he prepared anyways.  What an extraordinary lesson to be prepared for a life after that one would not dare dream of while confined.  We often seem to say, "I will when..." and yet we all know when isn't a certainly, only now is.  So for now I think it best I go into a little cocoon and stop reaching out but prepare for within, with the hopes that this little caterpillar may one day have her dance as a butterfly. 

Wishing everyone health, happiness and love this winter season, I will see you in the spring. 

How did I not know about Aloe Blacc...
if you love music hit the link
"Wake Me Up"

Feeling my way through the darkness
Guided by a beating heart
I can't tell where the journey will end
But I know where to start

They tell me I'm too young to understand
They say I'm caught up in a dream
Well life will pass me by if I don't open up my eyes
Well that's fine by me

So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost

I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don't have any plans

Wish that I could stay forever this young
Not afraid to close my eyes
Life's a game made for everyone
And love is the prize

So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost

Didn't know I was lost
I didn't know I was lost
I didn't know I was lost
I didn't know 

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