Wednesday, March 27, 2013

Would You Like Fries W/That?

"We are always free to choose, but we are not free from choice."-Anon

There is something magical about the way the sun's rays creep between the leaves and branches of a tree. It's like the part of nature we can't touch trying to make contact with the part of nature that's out of it's reach. I know that the sun is part of the life giving forces and energy that keep trees and plants alive but whenever I'm outside, it's like there's a very silent but meaningful conversation happening between the sun, the sky, the wind and everything else. I try to contribute with my silence because I know that my words would only shatter the effortless flow of dialogue like an awkward pause at a dinner party.

It was during one of these conversations that I was having with the wind and the trees and the sun today that I was able to reflect on a comment I made earlier in the week: "I have options even if I don't have answers...yet." It got me to thinking about how true that statement is for all of us who live with an auto-immune disease. And when I said it, I wasn't even referring to my auto-immune condition! (Ah the irony)

The reason this statement rings true for most, if not all of us, is because from the moment of diagnosis to the point of remission, flare, remission flare...etc. we are give SO many options.

The option of which drugs to take or not take.
The option of which doctor to go to or not go to.
The option of which tests to take or not take.

Some of us, if we're lucky have EVEN more options than that:

To work or not to work.
To get up today or to stay in bed.
To eat healthy or food binge ourselves into oblivion.
To workout or to relax.

Acupuncture or massage therapy.
Organic or gluten-free.
Stairs or elevator.


It never ends. These choices, though seemingly small to the healthy lay-person, can often be excruciating decisions for those who suffer with pain and fatigue on a daily basis.

And yet, even with all these options we still don't have any real answers.

What causes our disease?
Is it genetics? Environment? Both?
Is it going to kill us?
Or will it save our souls?
Can it be cured? (Usually that's the only answer we DO get...a big fat "NO")
Will this alternative treatment actually help me?
Will I go into remission? For how long?
Can I have kids? Is it safe?
How will this affect my family? My friends? My social life?
Why me?

So many options, and still a million question marks. I often feel like the dyslexic kid who sits down to take a multiple choice test he hasn't studied for and all the choices are marked either "b" or "d." Some of the choices look right, others don't, but I still don't have an answer and God forbid I ask the teacher for help because all I'll get is a dirty look and a shoulder shrug.

The teacher in my case are the doctors and the medical field, the test I'm taking is the cliched one called "Life w/Scleroderma," and no matter which options I choose, I will turn my test in and never get a final grade. Why? Because auto-immune diseases aren't Cancer. They're not as predictable and there are too many options, too many variables and not enough concrete answers.

We are the science experiment without end. Our lives are the hypothesis that is never proven or disproven, merely revised.

What this means for us, however, is that we have the power to choose our treatment plan, to choose the lifestyle that is going to help us manage and live fruitful lives. Sometimes our choices will take us on painful roads. We may lose family or friends based on our choices and we may gain some. We may relapse or flare because we choose to do something other than pop 20 pills a day. Regardless of what it is we "choose" to do, ultimately, we have to choose because that is what gives us back the power and control of our lives that we need in order to survive and endure the journey.

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