Blog Theme

Since I started this blog, I've been hunting around for a theme for it. I'm a person with M.S. who is committed to the process of creativity, but that's all background. I wanted something less vague. Over the last two weeks, it has emerged: This blog is abut establishing myself as a person with disability. I've been living with disability--TECHNICALLY--for 25 years, but in the last year it's become real. It's one thing to walk with difficulty. It's another thing not to be able to stand up.

My optimstic and naive assumptions (if your doctor orders it, your insurance company will help pay for it) are being challenged. My understanding of how disability affects an entire family is expanding.

I have no time today, but I was determined to get a post done. Before I go, let me report that the experiment I started last post is still underway, but far more difficult than I expected. I don't want to burden my family; how can asking for help constantly NOT be a burden? I've changed the rules: If I try and fail three times, then I can ask for help. I'm supposed to do it with good humor, though.

Maybe a hurried post IS worse than no post at all...

Entitled or not?

I have heard many complaints lately about how today's young people suffer from a sense of entitlement. They feel (say the complainers) like they deserve the best at all times. I've been struggling with entitlement issues in the last week or so.

What set it off was discovering that the insurance company representative and I miscommunicated. Several weeks ago, I called them to find out if they would help pay for some kind of home health aide for me. My disability has reached the point where I can't get out of bed, shower and dress without some help and my husband needs to travel some for work. I understood the woman to say we had coverage and went on to get a prescription from my doctor and to find a company that could provide the service. That company contacted the insurance company and was told they don't cover that service.

It turns out they'll cover skilled nursing services...wound care, that kind of thing.

We can get the help; we just have to pay for it. This gives my monster-mind more ammunition for its "I'm-nothing-but-a-burden-on-my-family" attack.

I went to church last Sunday and listened to a sermon about how Jesus turned the cultural rules of the day on their heads and how God calls us to move out of our comfort zones. Then I went to an adult education class where "health care" was included on a list of human rights.

Our culture values independence. It wants me to "stand on my own two feet." I can't, but I've bought into those values. I'm most comfortable when I am doing it for myself.

What if I act as though having others help me was not something for which I need to apologize? What if I behaved as though I were entitled to help?

Ralph and Alexis (husband and ten year-old daughter, respectively) get frustrated by how much I struggle before asking for help. Part of me thinks struggling is good for me: physical effort is good to a point. Some of the time, I'm acting on an unhealthy, crooked rule along the lines of "if they loved me, they'd help me before I ask." Often, by the time I ask for help, I'm angry at my own inability and my voice shows it.

The experiment between this blog and the next will be: Act as if I have a right to ask for help, as if it's not a burden on others to help me. Ask for help early and often and be as clear as I can about what it is I'd like people to do for me.

Artist's book done!

After somewhat frenzied work over the past two weeks, my artist's book of Mac and his Monster has been delivered to the MS Society. Yay!

Now I have to reverse-engineer the creative process in order to write about it and use those pieces in the final-final of Dancing with Monsters. This is one of the longest processes of my life. It looked something like this:

The Mess/Inspiration: fairy tales and the discovery that writing in that format can help me describe and resolve an issue with which I'm struggling. I knew the MS by itself might or might not be a monster, but the MS combined with what my unhealthy thinking patterns do with it IS a monster. I wrote the story and used it in my Master's colloquium and some speaking gigs. (So there's a creative process for the story inside the creative process for the artist's book.) I knew I wanted it to be illustrated some day, but by somebody good (i.e., not me).

Incubation: I waited around for the perfect artist. I made a sketch of Mac that I liked, but thought I wouldn't be able to draw him in movement. I didn't draw the monster, because what you can't see is scarier than what you can see. I talked with Alexis (then seven years old) about it. "But, Mommy, you DO have a style." More waiting/avoiding.

Technology advanced, as did my level of disability.

Illumination: Taking (eventually) Alexis' advice, I drew the Monster using Illustrator software, scanned and collaged paint textures onto it, and added the (scanned) original sketch of Mac. I still thought illustrating the story was beyond me.

Elaboration/Communication: Motivated by a comment from Jenna at the MS Society ("It'd be great if we could have a book of it."), I decided to do an artist's book. (Meaning a hand-made, one-of-a-kind production.) I pulled out a hand bound blank book I had made more than ten years previously at a book binding class. My hands are too disabled to make it now, but I decided to consider the project a collaboration with my younger, more able-bodied self. The number of pages in the book determined how the story was to be divided. I made a list of illustrations.

Then I went shopping. I am not much of a shopper, but we had to get some supplies for the puppet team at church, so we went to the art supplies store. Due to the rise in scrapbooking crafters, there are lots of cool specialty papers available in variety packs. I bought a bunch with Mac and his monster in mind.

I started working on the computer: drawing in Illustrator, coloring in Photoshop. On the computer, I can search for reference photos (someone holding a baseball bat, for instance) and use them in creating the drawing. I have dozens of scanned pieces of paintings that I can use to color parts of the piece. I decided to leave Mac black and white and have the world around him colored until the last, full-color illustration.

I made about ten illustrations for the book and printed them on watercolor paper. I also printed the text of the story. I collaged the book together, tearing the illustrations, story prints, and art papers. I love tearing. I love the textures of a tear (the torn-from edge looks different from the torn edge). I love the lack of control tearing introduces. I love that it shows where I was trying to control the uncontrollable and failed. So I tore and pasted and then painted much of it with Mod Podge. When I was growing up in the 1970's all the craft magazines featured projects with Mod Podge. It's still around and you can choose your finish. I chose Gloss-Lustré

I had counted wrong, of course, and had to make another illustration in the midst of pasting. One of the "spreads" was two text pieces without an illustration. Maybe I like to work to deadline because it helps me overcome my perfectionistic tendencies. If I had more time, I could work for perfection. This will have to do.

I am mostly happy with the product. I am thrilled to have done it. If it survives the show (it's probably the height of conceit to think someone will walk off with it), I'll get photos.

Now I have to take these notes and gussy them up.