Tuesday, August 28, 2007

When you are a small child, you believe your parents know everything there is to know and that they can fix anything.

I grew up with a Dad who has an incredible gift for diagnosing patients and helping to heal them. He literally can examine a child who is too young to tell him what hurts and somehow he puts the puzzle pieces together and finds a way to make them better. I have always been in awe of this gift of his, which is shared by many doctors in the world.

My diagnosis doesn't seem to be the problem. Every doctor I have consulted that has seen my MRI, my symptoms, my labwork...they are all in 100% agreement that I have MS. What no one can seem to tell me is why I am not getting better. According to all these doctors, in the vast majority of people with MS, double vision is not permanent.

In the medical field there are always exceptions to certain rules....and it seems I am what they would call "exceptional".

As we leave childhood behind, we begin to see our parents as Real people. They aren't perfect, they make mistakes. They don't have all the answers and they can't fix everything.
The same holds true for Doctors. They don't have all the answers. The can give you lots of information and their very educated opinions, they can run a lot of tests and try different medications, but in the end they may or may not be able to fix you. They can't cure cancer or rheumatoid arthritis or diabetes or lupus and they sure as heck can't stop bad things from happening to good people, no matter how hard they try.

What matters is that they do try. They go to school for more years than anyone wants to count, give up social lives, holidays and family events to care for perfect strangers. And they do this because of their desire to heal people. They try. They don't always tell us what we want to hear and they don't have all the answers and they can't always fix what's wrong with us. But they do try.

After a series of disappointing, frustrating doctor visits I have to stop and breathe and remind myself that they really are trying. They wish they could give me some good news. They wish they could fix me. It's not their fault that they can't. It's not anyone's fault. Bad things just happen sometimes and there isn't anyone to blame, as much as I would often like there to be.

The appointment today was hard. Yet another poor doctor who can't understand why my vision hasn't returned, who is concerned that I may have a "fixed lesion": meaning this brain lesion isn't going anywhere. Meaning it isn't going to heal or get smaller and it is going to keep right on causing double vision for a really, really long time, possibly forever.
And I have to remind myself that this poor doctor didn't want to have to tell me that and it isn't his fault. And I have to remind myself that it is just another opinion.

And then I realize the scariest thing of all:
None of these doctors really know. None of them can tell me with 100% certainty if my vision will or won't get better. The brain is just too complex an organ and MS is just too mysterious a disease and they Just. Don't. Know.

And I can no longer be the child whose parents know everything. I can no longer be the kid who believes Doctors have all the answers and can fix whatever is wrong with you. And it is scary and I feel very alone sometimes.

But whether I can see or not, whether I can feel my feet and legs or not, whether I can walk without stumbling or not walk at all,
whether I can sing or dance or drive a car or not...
I am still Me. I am still Caroline.
And she's pretty darn amazing if I do say so myself.
And no one, not even the MonSter, can take that away from me.

1 comment:

Kimberly said...

You're kind of super-cool. Did you know that?
Love you,