Wednesday, June 30, 2010

Invisibility

I walk in a room
where friends abound but
no faces turn to greet me.

I'm not avoided
but politely ignored
almost as though I were invisible.

Or they wished I were.

It would make life easier
for those who care
if I could or would disappear.

No pain to see
no struggles to bear
with a friend who's overwhelmed.

My dreams of changing the world
of making it a better place
have slowly vanished.

Replacing them are lofty hopes
of waking up each morning
and trying not to cry.

I've become a burden
on those I love most
taking instead of contributing.

I feel useless.

I don't know if I'm wanted any longer
by people I've thought were close friends.
Maybe I'm not enjoyable to be around anymore.

But it's an interesting view of life
for those in pain
and who are challenged in different ways.

The world isn't an easy place for us
we're purposefully overlooked
and conveniently not seen.

I suppose no one wants to be reminded
of the darker sides of life...
and what can happen to one person
can happen to anyone.

For some, maybe that's just too much to bear.

So those of us who have to fight to want to stay alive each day
we become either a spectacle to onlookers or simply
invisible.

I sit alone in solitary confinement
in a prison of constant pain.

Family and friends look on in anguish
and tears roll down our cheeks.

They reach through the bars
to touch my hand
to remind me they're still here.

We all look for a means of escape
but hopelessness overtakes.

Key after key fails to unlock this cell
and the bars seem to grow stronger
slowly cutting me further off
from life and those I love.

Thursday, June 3, 2010

Expect a miracle

Yesterday, I did something kind of out of character for myself. I flat out said I wished someone would buy me a piece of jewelry. Not just any piece, mind you. One I had seen the day before that wouldn't leave my mind. It's a bracelet, a silver cuff bracelet that has inscribed on it: "expect a miracle" I really wanted to be able to wear it all the time and only have to look at my wrist to be reminded of it. There are so many health issues I'm dealing with right now that I find myself easily overwhelmed and fighting on a moment to moment basis to keep my head above water emotionally. When I mentioned it to S & C, they both instantly wanted to get it for me and a short time later, I was wearing it, all polished up, with those simple words staring back at me from my wrist.

I have this hope in me that, perhaps, this reminder I now wear continually, will help me in those all too frequent times of struggle.

But this led me to another question...what defines a "miracle"? Will I only be satisfied if the "miracle" is a complete, instantaneous, genetic reengineering of my genetic code with new airways, vertebrae, and connective tissue? Well, of course, who in my position wouldn't be satisfied that? But maybe it isn't just about that, and maybe it isn't just about me. (*shock* *faint*) I know, what a concept, right? It's so easy to overlook the miracles that God does for me everyday. The fact that he's given me a spouse, partner, best friend to walk with me tirelessly through all of this and who, for some unknown reason, continues to love be despite all of this, is a miracle. The fact that's He's given me a community of friends who have really become family and who continue to support me, believe in me, and be there for me, is a miracle. The fact that I'm writing this from the porch of an amazing house in North Carolina on the beach on a vacation that was a complete gift to us from some of those friends just so we could have a break, is a miracle. The fact that I have a top medical team from Anne to my doctors at Harvard, and that I have such favor with them, is a miracle. The fact the God is connecting me up with another person who's gone through similar struggles due to EDS is a miracle. The fact that He's given me strength, moment by moment, at times, just to stay in this life during this time, is a miracle. The fact that time after time, when I should have to wait months or even a year to see a doctor, he gets me in in literally days or weeks, is a miracle.

I guess it comes down to what CS Lewis said at the beginning of his book "Miracles". (my paraphrased version). Those who don't believe in miracles will never see one...they'll always attempt to explain away any happening that's unusual as a "trick of the light" or a simple "coincidence". But those who are looking for and expecting miracles WILL see them and won't be disappointed. So, I want to start looking for and seeing the miracles He does for me on such a frequent basis. I know that, in some sense, the "Pollyanna" concept is a flawed one in terms of expecting a perfect almost "princess like" life. But I don't think that was really what was going on in that book. She was taking otherwise difficult situations and finding ways too see the good in them and for me, I think I need to go back to seeing the good more. I mean, it isn't as though I'm not trying to do that already, but maybe this renewed hope will be a positive start.

I don't expect to not have struggles with all of this. I don't expect to not have to adjust my life, my thinking, my expectations of myself right now to match what I'm going through. I don't expect to not have to be "gentle" with myself (a concept I find MOST difficult). But, if I can make those adjustments right now, with His help, then that's a miracle. If I come to a time later when I can become more like my "old self" then that's a miracle. And, if I can find a way to look for a "new self" to become, instead of mourning the "old self" that I can no longer find...then that is also a true miracle.

This is my aspiration. I certainly don't expect to do it perfectly. And if I can come to that realization and truly incorporate into who I am, that will be an absolutely amazing miracle.

So, now, I look down on my wrist and remember to "expect a miracle". Because, each moment holds that possibility and "suddenly" can happen in an instant and everything can change.