Sunday, January 25, 2009

My Visit to the Rehab Doctor

I've been waiting to write until I had something grand to say. Finally I realized that I need to get the minutiae out of the way first. It's wonderful to think that I will be philosophical and creative in my approach to disability, but the reality is that I have to spend a certain amount of time and energy dealing with the physical aspects of it. Living in the muck is part of the job. This posting is about the muck.

Last Wednesday, I had my long-awaited visit to the rehab doctor. I'm happy to report that I liked her: she has a sense of humor and, more importantly, she "gets it." she seems to understand living with a disability in ways my neurologist, sadly, doesn't.

She started by explaining that her role is to do what she can to improve my functioning. Her specialty is spasticity, and that has been my biggest challenge of late. She explained what she called a "pyramid approach" to treating spasticity. exercise first, then medication, then (perhaps) surgery.

My body is so clenched that stretching is a challenge. Ralph wrestles with my legs each morning to try to stretch my Achilles tendons. It's a workout for both of us. To add any more stretching would be difficult. But I have a standing frame, so we'll start by doing what I've been meaning to do anyway: use it three times a week.

The doctor also gave me a protocol for increasing my baclofen dosage to (potentially) quadruple what I've been taking.

We will reconvene in six weeks.

Looking at the bigger picture, she did not offer me a return to what was. It's possible, she said, that the spasticity will subside, but if it does it will probably leave total paralysis of my legs in its wake.

It was surprisingly easy, after four months of struggle, to give up the idea of "getting my legs back." From that standpoint, the long wait to get in to see a specialist worked in my favor: I am ready to move on to whatever is next.

I've been delaying the hunt to find a PCA because it's obvious it won't be easy. Getting the prognosis has given me a sense of energy about doing that. It won't be wasted effort.

The doctor also suggested that I talk to my urologist about urinary diversion surgery. She realizes that if I didn't have to transfer to the toilet, I could probably get away without a PCA as long as Ralph is in town.

It's interesting to notice that our health care system is more willing to pay for an invasive procedure then it is for ongoing care. If I do end up taking this route, I intend to make some political noise about it.

Tuesday, January 6, 2009

Being and Doing in the New Year

Welcome to the new year. It is a time of New Year's resolutions. I don't like them. They play into my perfectionistic tendencies and are therefore an invitation to frustration. I am, though, lured by them.

This year, there is something else inviting change: my 11-year-old daughter prefers the company of her friends (even by phone) to the company of her mom. (I totally understand. I am not sure I enjoy my company much of the time.) I was trying to remember who I was before I was a mom. Eleven years ago, I was much less disabled than I am now, not to mention plain old younger. I can't do what I used to do.

So what do I do now?

When I did my first Third Step, turning my will and my life over to the God of my understanding, I was worried. I suspected that God would want me to Do Something and wasn't sure I would like it. Beyond that, how could I figure out what it was I was supposed to do? I spun around that question for several weeks. I remember the night I told my group I had figured it out. "I think God is not so much concerned with what I do as who I am. If I am who God wants me to be, then I'll do the right thing."

Who does God want me to be? That's a good question for every morning, for every situation.

I am always looking for answers from outside myself, so I spent a while surfing the web for ideas. I kept finding things that didn't fit. Then I remembered a sermon I gave more than five years ago. I read it again, cried over it, remembered how right it felt. I re-posted it to my personal website. I called it The God of Lost Causes and it is about how God heals.

  • God values us and values our stories

  • God calls us to move beyond the limitations we think we have, beyond the strictures others may place on us, beyond our comfort zones

  • God brings us to wholeness and affirms us as part of God's family

That begins to tell me who to be: someone who honestly shares her story and listens to others' stories, someone who recognizes that we all are family, someone who moves beyond her limitations. As I'm writing this, I realize that I'm using "doing" words, not "being" words. Let me try again: honest, genuine, interested, open, compassionate, loving, free. That feels like I'm getting somewhere.

I had another "aha moment" during a class at the Jung Association. The teacher suggested that one way we can tell what God wants us to do is by noticing what gives us joy.

I think it's important to understand what joy is as our culture often confuses it with a sort of Bacchanalian revelry. [I have to confess, here: that last phrase popped out of my mouth and then I had to look it up to make sure I meant what I was saying. This is the danger of being raised in an academic family. It turns out, I was right.] There is a desperate boisterousness that we mistake for happiness. That is not joy. When I look for a guide to discernment, the phrase that comes to me is "life enhancing." Drunken parties are rarely life enhancing.

I made a list of what gives me joy: reading, writing, nature, art (making and appreciating). Using the word "art," I stumble on another tool for discernment. The books, music, TV, etc. that bring me joy are Art. The ones that leave me tired and disappointed aren't. (Mood plays into this too and it explains why "one man's art is another man's trash.")

In honor of the new year, I am going to post both my "being" and "doing" lists where I will see them and watch what changes...