I decided to chronicle my experience of going from misdiagnosis to living with Ehlers-Danlos Type III, and how it has affected most of my body. I am fortunate that getting a diagnosed led to my 15 year old son being diagnosed early, before he sustained any organic damage.

My hope is that my blog will allow others realize that they are not alone, and it's not "all in their head", it's very real and debilitating! I also hope that my Counseling background will inspire others not to neglect their mental health as EDS can push our limits; seek support!

Friday, March 23, 2012

This is it. This is my life.

I've allowed myself time to mourn. I don't know how long it will last but I feel I deserve it. Its not self-pity, its an adjustment period since I have to get used to the idea that I have exhausted all avenues towards healing and hit dead-ends. Yes, I have tried eastern-healing methods: chiropractic, massage therapy, trigger point-therapy (and they have both been so excruciatingly painful that I haven't been able to continue), supplements, meditation, hypnotherapy, even past life regression...you name it, I've tried it.

Yesterday, through swollen eyes, and through teary prayers, I know that God was sending angels my way to let me know that he had not abandoned me. That even this, he was with me. I heard him in the song playing on the radio, in the words of a friend over the phone, in the message of another friend on Facebook, and in the message in a little magazine that I had postponed reading until yesterday. Even the title rings true. It goes like this:

Everyone has a story worth sharing
My Journey
Occupy Your Life
by Shiloh Sophia
Whole Living Journal

There is no place else to get to and no other place you are supposed to be.
Honest.
This is it. Really. Your Life. Your own Life.
It might not look like you thought it would.
It might not feel like you wish it did.
But it is yours.

And so the question is...

What is stopping you from occupying it?
What story are you telling yourself about why you don't pitch a tent in your heart
and demand the truth about you aren't looking in the places where you are being
unjust to yourself?
What are you telling yourself about why you won't claim your life as it is...
Now? Instead of waiting for something else, better, more brighter, to happen.

What does it mean to occupy one's life?
What does it mean to truly LIVE in one's own body?
What does it mean to truly LOVE even when you are hurt?
What does it mean to have compassion when you yourself are feeling like a victim?

I want to know...what does it mean to you? To occupy your great life?
And Yes you can choose for it to be a great one, even with how it is right now.

What it means to me is that I live like I am living.
Instead of living like I am dying.
Even on days when it feels like my heart will never drop its oldest scabs and reveal
new skin.

What it means to me is to keep finding the YES in every single day.
To become present as often as possible and look around.
To live the questions.
To keep my hands in creation, in paint, in prayer, in poetry.
To stand with my sisters and brothers who occupy the world
with out chants and tears and trusts.

And to no matter what, to give my great work.
Whatever my great work is in each day.
To live it. To give it.
I want to occupy my life as I belong to it and it belongs to me.

There is nothing else that needs to happen in order to say...
I am doing it now.
The only thing we have to do is choose and keep on choosing.
Though rumor has it, it is easier to choose your life in the company of companions
who can say--Yes, I see you. Yes, I hear you. Yes, you are doing it.

Finally,
we remember that life is good after all and still on our side.
Even when the outlook is grim we have some understanding
that we are a part of a great unfolding. A mystery.
And that no matter how bad it gets, our response is still the same...
we have to keep on living and loving and giving and breathing.

And eventually,
not too far away we find we are willing to admit
through surrendering our old sorry identity that we are living it right now.
This is it.
In all its glory and all its mess and all the grace given and received.

We belong to life. An life belongs to us.
Amen!


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