Monday, October 22, 2007

Finally, an art project

For months, I have known that I needed to journal my way through an art project and include that writing in the book. My thesis is that the stages of the creative process parallel what I go through dealing with chronic illness. I started by trying to create some line drawings of the four pieces of what I call "chronic healing". (Line drawings because I knew color would be expensive to print.) I did a couple...and someday I will scan them and link to them here. It felt like busy work—an artificial construct. I let it go. Then I thought I'd use an idea I had shortly after moving onto the street where I live: Sumac Way. I planned a group of small paintings that would hang together and follow a sumac plant through the seasons. I did some preliminary paintings. That, too, has fallen by the wayside, partly because I have no good space to paint in this place. (Yes, I understand that this is an excuse.)

A couple weeks ago, I found out that the Minnesota MS Society would like to display my illustration of Mac and his Monster (a story in the book) along with audio of me reading the story at the Society's convention in a few weeks. "It'd be great if we could have the book there," said the woman at the society. Adrenaline rush. I used to make artist's books. Why not put together a story book of Mac?

This has become a collaboration with my former self. The drawing of Mac was done about seven years ago when my hands were not as disabled. I scanned it and redrew it in Illustrator (software) where the "undo" command is my savior when my hand spasms. I found a blank book I made more than ten years ago at a bookbinding class. And I've been working-working-working on the computer to produce more illustrations of Mac and his monster. I'll print them and collage them with some cool paper scraps and text into the book. In the next ten days.

I've thought of illustrating this story for years, I wanted kind of a Shel Silverstein look. I thought of hiring someone, but (a) I have no money and (b) it didn't feel quite right to have someone else do it. So I drew Mac and the drawing sat there while I waited for more talent or skill to arrive. Instead, my hands have become more disabled. A few months ago, putting the story online was enough of an attraction that I made the monster illustration. The MS Society invitation (especially, I think, the short timeline) was motivation to move through the fear and grief and excuses and do what I can do.

I'll figure out a way to post it when I'm done. Now, excuse me while I go draw.

Tuesday, October 9, 2007

Notes from an E-Patient

The Pew Internet and American Life Project released a new study yesterday about the way people with disabilities and chronic illness use the internet. They chose, God help us, to "refer to internet users who have looked online for health information as 'e-patients.'"

I know myself to be a stodgy traditionalist when it comes to the evolution of language. (Verily, if it was good enough for Shakespeare...) To my amazement, I find that the word "e-patient" has been around since at least 2004. There
is (no surprise) an e-patients web site. There's even a companion word: e-caregiver. Zounds!

I've been an e-patient since before there was a word for it. In the mid-nineties, I made my first visit to a urologist and impressed him by asking questions generated by online research. I'm convinced he overestimated my intelligence from that time forward. These days, I bet doctors grown inwardly as soon as they hear the words "I read on the Internet that..."

What else are we to do? We have about twenty minutes with the doctor. (Frankly, I was surprised it's that much.) Because I haven't seen a urologist since I've been back in Minnesota, I've been waiting about three months for a "new patient" appointment. When I go in next week to talk about my treatment options, we can spend twenty minutes discussing the advantages and disadvantages of the choices instead of me hearing them for the first time at the appointment.

One point from the Pew study that concerns me is that most e-patients don't pay attention to the date or source of the information they're collecting. I heard one commentator (can't find a reference for it right now) suggest that doctors need to prescribe information to patients in the same way they prescribe medication: controlling the quality and dosage. I don't want anyone controlling my access to information. I do want an experienced medical mind helping me evaluate and act (or not) on what I've learned.

I've used the Internet as an information gathering tool. I've taken pride in finding reliable and up-to-date information. I have not, however, explored the internet as a way to connect with others dealing with similar issues. I think it's time to do that. (I'm aware of some resistence to that idea. It will be interesting to explore what's causing that.) I'm moving slowly toward embracing the idea of myself as an e-patient.

Tuesday, October 2, 2007

Joy and Worry and Guilt

The list I mentioned in the last post was helpful. I headed it "things that are driving me nuts" and took off. Some things, once listed, took care of themselves. Others will find their way into conversations with family and doctors. Some fall under that "things I cannot change" category and I simply have to accept them.

I don't have to accept them driving me nuts, though. I have some control over my attitude. I puzzled for a while over the item "being so crabby and down hearted." Then I did a Google search (I think it was "joy, God") and I found a sermon by Tom Brown called Joy of the Lord. The ideas that joy gives us strength to fight our battles, that joy is not dependent on circumstance, and that God calls us to be joyful always have given me new energy. I put Nehemiah 8:10: "Do not grieve, for the joy of the Lord is your strength" in my wallet and have been remembering it each day.

On the other hand, I've found myself obsessively worrying about a particular situation each night after I go to bed. My sister-in-law points out that, if I am worrying, I am not in the present moment. I realized that when I'm feeling guilty (another nasty habit I have) I'm also not in the moment. Worry is about the future and guilt is about the past. I can combine both and worry about how guilty I'm going to feel—or feel guilty about worrying so much, but I have years of experience; don't try this at home!

To be practical, I need to prepare for the future. Life is richer when I remember and honor the past. What keeps those activities from descending into worry and guilt? I think it is the implied invitation to action. It's the "so what?"

Worrying, for instance, about what will happen if my hands become severely disabled (can't work, can't write, can't make art...etc,) does little but flood my body with nasty chemicals and depress my spirit. I need to ask my worrying self "how likely is it?" If I think the worry likely enough to happen, I can move into preparation. I can research assistive techniques and technologies that can make it possible for me to keep working, writing, and making art.

Guilt is similar. Much of the time, I feel guilty because I'm not perfect. So, again, there's a discernment question: "Is this guilt valid?" If so, then my action item is to attempt to make amends. (See steps eight through ten of the Twelve Steps.)

What if I'm worrying or feeling guilty without cause? That's true most of the time, in my case. There's nothing for it but to turn it into mindfulness meditation, bringing myself back to a more positive thought. I have to understand that, chances are, this will be a practice, not something I do once and complete.

Here are some reminders (for myself) of thoughts to which I can return:
  • Let go and let God.
  • One day at a time.
  • "Worry is a misuse of the imagination." (Dan Zadra)
  • Cast your burden upon the LORD and God will sustain you, (Psalm 55:22)
  • Breathing in, I return to the moment. Breathing out, I smile.