Friday, July 28, 2017

Redefining Quality of Life


As expected, I spent most of this week lying down.

Even when a down week is planned, (Last week I travelled and knew I would need to recover.) it is tough on me psychologically. Though my brain is muddled by illness or meds, it has not slowed down to match my body. I want to do things.

Before

I so desperately wanted to do things that Monday found me sitting on the shady back porch hand-sanding the edges of cabinet doors we are refinishing. The project is and should be mostly the work of my boys, but my labor often inspires theirs and I was getting impatient.
After

After about two hours, the sanding was finished. So was I. The resulting heat exhaustion caused vomiting and a three day headache--definitely a setback in recovery.


Back in bed, I inevitably stewed about the quality of my life. So much that I want to do is either impossible (hiking, gardening) or accompanied by high amounts of pain and exhaustion (travel). There is also the realization that my health seems to only get worse.



To curb depression, I have to focus on the little joys. I'm going to share some of those using the five senses, an organization tool I often had my students use when pre-writing.


Sight:

At my worst, I don't want to see anything. Lights off or dim, eyes closed. But when I am functioning at all I like to dress up. I indulge my magpie attraction to shiny things and wear a ring on every finger (tried thumb rings--didn't like them) and multiple bracelets. I like to decorate my hands and lower arms because I can see them. I like to watch the play of light on stones and silver and imagine how an  artist would reproduce what I see.
Knitting is stimulating visually.Looking at yarn and imagining projects is fun even if I'm not ready to knit.

I also enjoy observing details and color while putting together puzzles. I mostly do this on an iPad app because it works in bed. When I am too tired to knit, too tired to read, I can still match shapes and colors and feel the satisfaction of finishing something.

Sound:

I don't do well with silence. My brain needs distraction. Sometimes TV is too much work, but so far, I have enjoyed listening to news and stories. I listen to news, history, and science podcasts constantly.

 More recently, I've discovered the LibriVox app, which gives me access to free, high quality recordings of books. Listening to the complete works of Shakespeare is now my goal. Each play requires multiple listenings and concentration, so finishing the cannon will take several years.

Taste:

Ice cream always improves my sense of well being.

Medicinal use only. May result in light gain.

Touch:

Knitting is very tactile. No one should be able to go into a yarn store without touching everything. Just holding knitted work is a pleasure to me. Stillness has increased my awareness of tactile sensations. I enjoy the feeling of air moving across my skin. I am very aware of the texture of fabrics in my clothes and my bedding. I feel actual joy when my overheated face touches a cool pillow.

Smell:

Not my boys. Mine are just as cute, but manlier.

I mostly dislike smells, but there are some comforting ones in my life: rain, fresh-cut grass, the fragrance of mint which has taken over parts of our front lawn. I know Youngest is awake when I smell the grilled cheese sandwich he makes for breakfast. Dinner aromas created by my boys' cooking make me feel pampered.


A wise man in my neighborhood who was confined to a wheelchair for his final years said  seeing individual blades of grass on the football field on a big screen TV made life worth living. Though I can pass on football, I agree that there are many little pleasures that give quality to life even when that life is restricted.



THE KNITTING

It took a few days to get knitting again this week, but I am making progress. I've knit more than half of the border on the alpaca lace and a big chunk of a tween-sized mermaid blanket.


Friday, July 21, 2017

Surviving Shakespeare (Sort of)

Shakespeare killed me.

The most painful thing I do regularly  is go to church and try to sit in a relatively civilized way for one to three hours--usually only one.

In the last three days, I have sat through two 2+ hour plays and drove over 4 hours twice. I now feel like I was thrown down three flights of stairs.

Yes, William Shakespeare battered me to death.


But let's start this story at the beginning.

Life had been quiet. It was time to hurt myself again.  (Really, it was time for an adventure, but my body interprets it the same way.)

This time, instead of camping and scenery, it was the Shakespeare Festival in Cedar City Utah. I went  with a friend of mine, another retired teacher. She is twenty years older than me and recovering from a knee replacement. I can almost keep up with her.

Our plan was a sane one for two old ladies. We saw two plays in two days and mostly napped, read, or sat around the rest of the time.  I still worried, knowing this trip would take a lot out of me.

My friend worried for other reasons. She is not a literature nut and is skeptical when I claim (accurately) that Shakespeare is modern English.


We bought tickets for As You Like It and A Midsummer's Night's Dream. To prepare, my friend watched movie versions of our plays and read several summaries. To be able to answer her questions intelligently, I downloaded the LibriVox versions of both plays and listened to them many times. That was delightful.

All literature worth reading is worth re-reading. There is so much to notice in the richness of language and details about setting and characters. In the case of As You Like It,  there is also so many characters and conflicts that multiple exposure is necessary to make any sense of it.

Within the course of the play, four couples fall in love and get married, and two sets of feuding brothers are reconciled. Add cross-dressing, escapes into the forest, competitive wrestling, and a very prominent character that has nothing to do with the plot. It's confusing.

I'm reminded of several older movies I've seen. White Christmas is one. It seems like the studio has numerous song and dance acts and decide to write a story to tie them together.

In my imagination, young Shakespeare has some good poems, songs, and comedy bits, and a troupe of actors with specific talents that need to be considered. Instead of just putting on a variety show, he creates the wild plot of As You Like It.

The company did a good job of staging and physically acting the story to make it much clearer than it was on paper or in recording.

In fact, it was A Midsummer Night's Dream that my friend found more confusing. She could have done without the fairies, except for Puck, who (as always) stole the show.

Puck and Oberon from the show we saw.
Because I was in the orchestra for a production of this play in high school, I can't tell how many times I've seen it, but I still noticed new things. Until the second or third time through the recording, I didn't realize that both the king and queen of the fairies had past romantic histories with the Duke of Athens and the Queen of the Amazons, whose approaching wedding provides structure for the rest of the play.

In the past, this couple seemed almost like part of the scenery, but this time, their story jumped out at me. The duke says he wooed the queen with his sword, but hopes to win her love through the pomp and celebration of their wedding. At first, the queen shows distain for the duke. But he courts her in every appearance and wins her love by the time of the wedding. I think the actor and actress in this role were skilled enough to tell this story, mostly through body language, even though the main focus was on other characters.


The play within the play, performed by Bottom and the other commoners was probably the most confusing. I knew what to expect and had heard the jokes enough times to get them, but my friend found that whole thing a weird distraction from the love stories.


Before starting home, we looked at next year's schedule and added a third play and third day to future plans. Despite pain and exhaustion, I am looking forward to it.

Shakespeare manages to kill many of his major characters thousands of times a year every year. I am joining  his recurring  bodycount.

(I didn't make major knitting progress this week or take many pictures. I hope to pull myself back together soon.)

Friday, July 14, 2017

Malingering

Not my picture, not my feet. Not my husband's feet either. He never wears sandals.
Linger is such a lovely word. It has a nice ring, ding, sing kind of sound. And it often means a stolen moment of luxury. You linger to delay leaving a friend, a lover, or a beautiful place.

Even when lingering is used in a negative sense--as with an illness, suspicion, or odor-- it softens the problem ever so slightly. A lingering illness hasn't become chronic. A lingering suspicion hasn't been confirmed. A lingering odor isn't overpowering.

But what a difference a prefix can make. add mal- Latin for evil, and everything changes. To  malinger is to earn the maledictions reserved for malevolent, malicious, malcontents.

 A malingerer fakes illness or injury to avoid work. What could be worse in a society that defines us by our productivity?

Why the vocabulary lesson? It's connected with two forms my lawyer wants my doctor to fill out. These forms will be used in my social security disability claim for rheumatoid arthritis and fibromyalgia.

He won't actually fill them out. I know this from experience. The nurse will do it and the doctor will sign them. How will the nurse get the answers? In the past, she has called me.
Maleficent never malingers.

So I have this excellent plan. I will type up my answers so she can copy them. I have records requests to drop off too, so I'll get all the paperwork lined up, drive to three offices in a logical order, then maybe end up at the aquarium.

It sounds efficient, and exhausting. And my rheumatologist's office is closed on Fridays. So I have postponed this errand every day for longer than I care to find out. Of course procrastination makes everything worse. So I'm sitting here, after noon, doing my first worthwhile tasks of the day--trying to write medical answers and two blog posts.

The questions are about the length and severity of my illnesses and my ability to work in spite of them. Both forms ask, as a yes or no question, "Is your patient a malingerer?" Unlike many of the questions, which have lines for explanation, yes and no are the only choices.

Do I look like this? 

So what is my answer?

Today I felt like a malingerer when my husband left for work and I just rolled over in bed.

More so after breakfast, when I couldn't even knit the few lines I planned to accomplish this morning before writing. Instead I took all pain-related drugs I could find and went back to sleep for a few hours.

(I really felt like a malingerer when I found out later that the reason my son didn't answer the door or the phone--which I chose to ignore--was because he locked himself out and was knocking and calling me to let him back in. Oops.)


There are also questions about how far I can walk; how much I can lift, sit, stand; what percentage of each day can be spend turning, reaching, or grasping. I have made my best guesses which will become my doctor's official best guesses.
I would have to fake more than health to teach trig.

What I know without a doubt is that I am not pretending to be sick.

I do pretend to function normally. I pretended to function well enough and long enough to teach sick for more than a decade. But now I  can only hold myself together for an hour or two at a time. I haven't yet figured out how to earn a living without functioning normally.

Musical, mathematical, and literary  geniuses come up with amazing products from bed or their bathtubs. I am no genius. There are large chunks of a bad novel written in my head, but putting it on paper has gone slowly and I still need to figure out how the plot is going to work.

If I become a famous writer, would Bryan Cranston play me in the movie or Scarlett Johansson?




The forms are finally finished. They weren't good for my self esteem. It's a problem when the goal is to prove I'm not good for much of anything. But honestly, I wouldn't hire me. Now I want to go back to bed, but will do a few dishes first to feel less useless.

I could run forms around, but by the time I shower and get dressed it will be too late. Maybe I can visit the other two offices tomorrow and visit the rheumatologist  Monday. I can't do much about my "malingering", but I can stop procrastinating.


THE KNITTING

Sadly, no one can make a living knitting. Machines have been so much faster for the past 400 years or more. Also, I can only knit a few hours a day, again punctuated by many breaks, but I have made good progress on the commission for my friend and started on the border.


I finished the little mermaid tail, but sent it off without a picture. I've decided to make three more by Christmas, so there will be more chances.

Next week I am traveling to a Shakespeare festival in Cedar City Utah. Our time there will consist of watching two plays and resting a lot. I will bring the alpaca throw for quiet, thinking minutes and a very easy Christmas present blanket for knitting to carry around. I'll show what I produce and let you know if I survive next week.



Friday, July 7, 2017

Revving-up My Patriotism



Several years ago, we stepped out on the morning of July 4th to find the air full of smoke. A forest fire was burning in the foothills a few miles away.


I don't think any homes or lives were threatened and the fire was technically above the next town to the south, so there was no reason for plans to change.

The traditional mayhem of our community 4th of July celebration went on as usual. But it just felt wrong to be throwing a parade when the air was full of ashes and the world was on fire.


I approached Independence Day this year with the same sort of feeling. I was one of those lefties who ran around (within my physical limitations) with my hair on fire right after the election. That fire initially spurred a patriotic fervor to stand up against threats to the country I love.



Nine months later, the fire in my bones (and hair) has settled into a dull ache that blends in nicely with the RA and fibromyalgia.

 It seems like every day some new ugly thing once swept into a corner or under the rug comes proudly into the light. Exhausted and discouraged, I haven't even written to my congressmen for more than a month.

I can't afford to do that. As both the daughter of an immigrant and a descendant of Mayflower pilgrims, I have experienced every possible benefit and blessing of being American. It is my duty to preserve these benefits and fight to extend them to Americans who have been excluded from full enjoyment of our rights.

So this week, I have looked for ways to rev up my patriotism. NPR helped. On the Media broadcasted a great story about my favorite American composer, Aaron Copland. Morning Edition has a wonderful tradition of reading the Declaration of Independence each 4th of July. I was able to enjoy both multiple times and at my leisure due to the NPR app.

My community of Granite always celebrates the 4th in a big way. For early risers, there is a flag raising, breakfast, and fun run.

Running hasn't been fun for me for several decades, but I made sure to get up the hill for the parade. Though our area has changed greatly over my lifetime, from rural and working class to suburban and wealthy, the parade has remained a constant.

Everyone gathers to watch or participate. Though I recognize fewer people each year, it still makes me feel like a part of a larger community--my little corner of America.


All of my pictures (except the knitting) are from the parade this year. If you are a local and see yourself and want to be acknowledged, or removed, please let me know.

After the parade there is a carnival, once with volunteers running fish ponds and making fifty-cent snow cones, now featuring bouncy castles and food trucks. Since my kids are grownups. I don't have to attend.

Instead, I sent my kids out to buy me a cherry snow cone and went home for air conditioning.

While cooling down, I watched I Am Not Your Negro about the writer James Baldwin and his perspective on racism and the civil rights movement.


After that, I started reading the biography, Alexander Hamilton by Ron Chernow. Of course I also listened to the musical soundtrack and the mix tape.

Evening and night was family time. We ate dinner at my Uncle's house, catching up on cousin gossip and enjoying his energetic little grandkids.

To finish up, I met my sister at the  the Sandy City fireworks show. My sons are now old enough to lie on blankets and watch fireworks, but the cousins still have more fun making armor and weapons out of glow sticks and playing together in the dark. They are almost all teenagers now. It will be kind of sad when this activity ends.

I'm feeling better now. My piece of America survives. My energy to fight for it is revived. I have called my senators (no congressman at present as Jason Chaffetz has resigned) to demand a health care bill that improves health care in some way.

Mike Lee's wonderful staff have also called me on this issue and he is planning to vote against the current bill, so I only had to thank him. The senator and I are about as far apart politically as possible, but I am impressed with his integrity so far.

Orrin Hatch had a less friendly person answering the phone, but he may be receiving many calls like mine. He promised to pass along the message. Hatch is very personable and seems to have good intentions, but he had already been in the senate far too long when I started voting 30 years ago.

I'd love your recommendations for books and movies that will help me next time I feel down. I would especially love materials about women and about people who made important contributions without becoming rich and/or famous in the process.

 I'm trying hard not to be a summer soldier or sunshine patriot.


THE KNITTING

The green silk/cashmere wrap is finally truly finished and by the end of Friday will be up for sale in my shop.


I will also be listing my pictograph shawl. It is a mixture of knit and crochet in a heavy wool that makes it a good substitute for a fall or winter sweater.

I am concerned about cultural misappropriation. Do I have any Native American readers that can let me know if using 2000-year-old symbols is offensive? I know I don't care about the beliefs of my pagan European ancestors from that time period, but am sensitive about the early Christians, so I'd really love some insight.



In my current work, I am making good progress on the alpaca throw for my friend.


And I have started a mermaid-tail blanket for the preschool-aged niece of another friend.