Monday, January 9, 2012

I'm Not Always Alright.

The past two days have been a struggle. I have been completely emotionally unhinged- the weight of watching myself disappear amid a list of symptoms and pill bottles finally got to me and I could no longer skip along merrily wearing my "sunshine face".

Its a freak-show that I can be so strong and yet so fragile at the same time. I am so sick and tired of being sick and tired, of waiting rooms and uncomfortable explanations, of being defined by a disease and not as a person.

Where do I belong in this mess of paperwork and protocols? Where has the me in me gone and when will I be back?

They say not to dwell on what you cannot do, instead to rejoice in what you are still capable of. Sounds great on paper, but feels a lot more like bullshit while your bearing witness to yourself fragmenting into a stranger. The experts claim that supposedly we all go through the "5 Steps of Grieving" during traumatic situations, but I no longer believe this is true. I think it always is a mixture of the entire spectrum.

On any given day, especially when reminded of my losses I often will feel deep grief and attempt to cope, sometimes resulting in an empowering moment of strength and on other occasions, total sadness. It's the function of living, the human experience, uncensored and unedited. It's not the kind of crap you see in the movies, it's raw humanity, at it's most brilliant and devastating.


  1. As for, appreciating what you have and all that...yeah it does seem really hard to swallow when youre actually living this disease and everything you worked for you whole life has been taken away.

    I do say though that I got rid of a lot of stress the minutes I accepted i have to just live for the minute now, and can't plan anything ahead of time. Which in this world is really hard. :(

    Hang in there Kenny and love ya!

  2. What can be so bewildering is that I am actually very happy with what I have in life. James is lovely, Charlie is a joy and all of great things I'm involved in are just splendid, but sometimes you just get too close of a look at yourself and realize how much you can't do anymore and it hits you like a lightening strike.

    That's what happens to me occasionally, my whole house of cards comes tumbling down and for those few moments I am a complete mess.

    I've come to understand that is a vital part of learning to cope with being chronically ill, but as I'm sure you understand, it doesn't ever get any easier.

    Love ya too dear!! Hugs!!