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.

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.

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.

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.
  

Angry and in Hiding

In late August (after my last I-will-keep-this-up-to-date vow), we went on vacation to Wisconsin Dells. Alexis (then almost ten years old) loves water parks. It was horrible for me. Our "handicapped accessible" room had a grab bar by the toilet, but the toilet was too low and I couldn't use the bathroom independently. On that trip, I discovered I can't use ANY bathroom independently--even ADA-compliant ones. Ralph had to help me, which put Alexis in the role of traffic cop, trying to explain to women at the door of a public restroom why there was a man in there. So I have spent my time since then in a towering rage that this is my life (and because of me, my family's life). Not wanting to feel the rage, I hide in books and TV and become depressed.

I don't write when I'm depressed...at least not where anyone can see it. I used to write in journals when angry and depressed, but I don't have much use of my hands once I'm done with work, so I don't journal any more, I just STEW (and get angrier at not being able to journal.)

But a blog isn't a journal. In my mind, it's supposed to be more refined and more edifying. It's meant to be read, as journals (my former ones, at least) are meant to be catharsis.

It's my day off, though, and I have morning hands and this blog has been ignored too long, so here I am, journalling in front of God and everybody. As is traditional, I'm disgusted with my attitude and trying to find a way out of it. For most of my adulthood, that way is with the recovery Just for Today's.

I thought I'd check the list, choose the one that was the problem right now, and write about it. Ha! I've been forgetting them all. So, let me just start at the very beginning (a very good place to start.)

1. Just for today I will try to live through this day only, not tackling all of my problems at once. I can do something at this moment that would discourage me if I had to continue it for a lifetime.

I loved the OLD wording of #1: I can do something at this moment that would APPALL me if I had to keep it up for a lifetime. APPALL, do you hear? Not discourage. It's way beyond discourage! Discourage is wearing diapers. Appall is not being able to change them by myself. I am appalled, I tell you.

The bad news is that problems are all interrelated. Poke at one and all the rest quiver. And my body is all one organism. I can't try to solve one symptom without having it affect everything else. The idea, here, is to stay in the now and resist getting overwhelmed.

As soon as I think about focusing on ONE issue, though, my mind presents a whole bunch of other ones that seem to be equally important. "What about me?" they scream. That's when I have to use Step 3 of the twelve steps and turn it over to a Higher Power.

Obsessive-Compulsive person that I am, I'm going to make a (private) list of all the issues, along with some ideas of small things to do to alleviate them. Then I'll start to work the list, choosing one thing I can do "just for today."

Too hot, baby...

It's been too long, hasn't it? The heat is only one of my excuses. I saw my neurologist July 3rd and that has led to multiple adventures. I wanted him to know about this 2007 downturn in my abilities: too many falls, literally no leg to stand on.

Like a good scientist, he wants to investigate. He ordered an MRI and two blood tests.

Like a typical patient, I just want to cope better. I asked him to sign paperwork for Metro Mobility (the local paratransit service) and an evaluation for an electric wheelchair.

He: Isn't that what you're in?
Me: No.
He: What's this called?
Me: An electric scooter?
He: What's the difference?

The important difference, I hope, is that I can drive the car from a wheelchair, rather than having to transfer to the driver's seat. I was somewhat appalled that the neurologist didn't know what I was talking about, though. He clearly doesn't understand my life. He signed the papers, though.

I showed up for the MRI and they told me I would need to walk across the room six times. I told them that I'd mentioned to the scheduler that I couldn't walk. There was no one there who could help, so they sent me away, telling me the patient advocate would try to find some place I could get an MRI.

Next MRI scheduler (on the phone): I understand you can't lie down and you need an MRI.
Me: No. I can't walk and I need an MRI.
She: We have a wheelchair you can take into the MRI room and then you just need to transfer to the MRI.
Me: Is there anyone there who can help if I have trouble with the transfer?
(silence)
She: Can you bring someone? I have a bad back and the other person here is pregnant.

My husband, Ralph, took the morning off work and lifted me back and forth from the wheelchair to the MRI several times so I could get the three-hour scan (head, neck and spine).

The MRI showed no change.

I haven't heard yet about the blood tests.

Meanwhile, the temperature has been in the eighties and nineties (fahrenheit) and MS does not do well in heat. My doctor put it succinctly on the Metro Mobility application: Heat up-arrow; Ability down-arrow.

By the time I get home from work and take the dog for a walk, I'm exhausted and my hands don't work to type with. Hence the lack of blog posts and lack of any art or writing activity, too. I'm disgusted.

What disgusts me more than my inactivity is my penchant for whining about everything, and here I am doing it in (sorta) public. This is accomplishing what, now?

Pardon me while I put down the blog, pick up my manuscript, and get some editing done.