Talking Down

textile design, hand-painted silk, 1987
Over the years I have seen nearly every neurologist in Santa Fe and a few in Albuquerque.

My experience is that of feeling sick to the core as I left the office. I arrived feeling fairly centered and lively.

What happened? And why is it important?

In each instance the neurologist was entirely sure of knowing what he (most often though not always) knew.

By that, I mean that the system he had studied and sweat over to corral into the brain acted as his bible and nobody could tell him any differently.

The knowledge was etched there, and he had a white coat to prove it.

I actually am not bitter but more interested in the healing aspect of this dynamic.

MS is a slippery slope and my research has told me very few specialists in the field are truly sure of much of anything. Yes, there is a grab bag we, as patients are given at the point of diagnosis filled with options for treatment.

And yet, the efficacy rate is minimal at best.

I, Cathy, am inhabiting this body and have my own empirical knowledge of what works and not.

When I am in the presence of ANYone who is disinterested in my experience of self, I just pull up the moat and find something more interesting to do.

I absolutely love being around smart people. I learn things and my life is enhanced. There is a way to be smart that feels derisive

And a way that feels inclusive.

Healing, in my experience, absolutely never takes place in a polarized environment.

Love is the same. A bridge must be there for each participant to choose to walk.. or not.

I’m just saying the choice must be there and entirely respected.

If you are so sure of knowing what you know then where is the room for inspiration or possibility or healing in the face of poor odds?

As my diagnosis reads: PPMS, I register that information, research, study and devour what is available to me and make healing decisions from there.

Seldom has a neurologist guided me toward anything other than another MRI and a cursory readout of lesion activity.

Our medical (political, economic, environmental) systems breed loneliness

And healing feels so very far away.


One Response to “Talking Down”

  1. Dorothyanne Brown on March 1st, 2012

    Oh, I so hear you! It’s such a disempowering thing going to the MS clinic that I am at the point of cancelling my appointment tomorrow. WHat do they tell you but minimize your personal experience and then throw more drugs at you?
    Most frustrating.
    I am part of a national registry that is forming for Canadian MS – and I am fighting like crazy to include patient experiences as part of that data base. As you say, we live with the disease all the time and it is so frustrating to be told our experience means nothing.
    You aren’t alone. Together we will heal as we can.

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