Art Therapy

    
     I've started painting again - with varying and sometimes surprising results.  

Self-portrait: Diagnosis

     As a right-handed person working with my left hand, the results are bound  to be different than my pre-ALS paintings, and I find myself using a lot of gesso and titanium white to blot out the more egregious "differences."  But I am struck by the similarities: my use of color is similar, my brush action, my combinations of broken-field texture with large flat areas, the latter-day quasi-impressionism that makes the viewer's eye do the

work and provide the details.

     Most surprising is the emotion revealed in some of my new pieces.  My husband says they are great -- and they scare him to bits.
     I'm working on two series of self-portraits. One, the "scare to bits" group, is a visual examination of my reaction to ALS.  They are very personal and, I am surprised to see, pretty powerful.
     The "Diagnosis" self-portrait above is a example

     The second group is a "bucket list" series, fun, somewhat frivolous paintings of 

Self-portrait with Race Day Hat:
Bucket List #1

myself in settings and  activities on my gotta-do list.  They are much more cheerful in color and mood, but they 're still pretty strong personal statements: I really, really want to visit these places and do these things!  (I have long wanted, for example, to go to a major horse race, wear a big frou-frou hat, the whole nine yards.  So my daughter and I, I hope, are going to opening weekend at Saratoga next summer --. big brim, flowers, feathers and all!)
        The very best thing about these paintings, fun or serious, art or not, lies in the doing.  Pushing paint around, playing with color, getting myself all splattered, even cleaning my brushes provide great physical therapy.  And trying to give visual voice to my often chaotic thoughts is turning out to be the best psychological and spiritual therapy I could ever devise.
                                                  *   *   *

      I would really like to hear from other PALS artists.  How do you fill your creative needs?  How has your approach changed as the disease progresses?  Does art provide satisfaction? Frustration? Release?  What do you create?  Let's get a good discussion going....

Self-portrait with Hands



Self-portrait with Glacier:
Bucket List #3











  



A Change of Clothes

     Sometimes it's the littlest things that create the biggest emotional upheaval.  Today I wept and wept because I can't do up my jeans.
      Not because they've gotten too tight (they're actually a bit loose because I've dropped a little weight), but simply because I can't.  My fingers cannot work the button or pull up the zipper.  They can't grasp a buttonhook or a zipper-pull, so even aids provide no aid.  I have become physically unable to do this simple, everyday task-- and the fact that is is a simple, everyday task, unimportant in the world's scheme of things and totally taken for granted, is why it it me like a ton of bricks.  It is why I cried.
      I also cried because this little loss is evidence of a greater loss: My left hand is losing strength and dexterity.  My left arm is getting weaker.  And just when I was getting so excited about being able to paint left-handed....
      Anyway, the run-until-tackled, power-of-positive-thinking part of me eventually surfaced -- and went shopping.  I may be faced with the challenges of ALS, but I am still a fashion fan.  I like to dress well.  I like to look as good as I can.  I want to keep that up as long as possible.
      So I guess I'm lucky that there are chic pull-on jeans these days, fashionable trousers and skirts with elastic waists (shut up, Clinton & Stacy),  over-the-head tops in luxe fabrics and beautiful styles and not a button in sight, attractive and fashionable shoes with low heels.  I'm lucky, too, that I can still be concerned about these things.  I hope I'm concerned about them for a long time to come.
      It's not shallowness.  It's self-esteem.  It's proof that, while I do have ALS, ALS does not have me.
    

When the Going Gets Tough, the Tough Get Gone



Taos Pueblo

        I mentioned in a previous post that, shortly after my ALS diagnosis was confirmed, I went on a road trip.  It was such a special, meaningful adventure that I have to write about it, to share it, even though it is no longer new news.
      I don't know how long I am going to be able to drive my Miata: shifting, putting the top up & down and all that.  I don't know how much longer I'll be able to go hiking.  I don't know how much longer I'll be able to get around all by myself.  But I could last month -- and so I did.
      I went, by myself, to Taos.
      Why alone?  Because I needed the time and space for reflection, for introspection. I needed to learn something about this new me, something I could do only on my own.
      And why Taos?  Because I'd never been there.  Because I find there's something magical and compelling about the Southwest.  Because of cultural heritage and art and hot springs and scenery and space and archaeology and food. Because my original idea, Sedona, was automatically eliminated due to the fact that it lies in Arizona.  (A long story, and political at that....)

Taos Pueblo

       I visited Taos Pueblo and met an old gentleman, full of dignity but very genial, an artist in wood and a pueblo leader, who told me how to bring spiritual healing into my home.  I went to a co-op gallery on the Taos Plaza and found incredible artwork -- crosses made of salvaged and recycled trash -- created by a man whose own life was salvaged and recycled by his God and his art.  I went down to Albuquerque and visited old friends not seen in years, who proved that true friendship pays no attention to time.  I went to a spa and soaked in a hot spring, then broke down and wept to the spa attendant, pouring out my story, and was comforted by her understanding as much as by her massage.  I stayed in the most charming casita and made it my own with sage bundles, pinon candles and root beer floats.  I drove the Enchanted Circle around Taos Mountain, right at the height of fall color change, and I hiked around lakes and canyons, and I sat to watch people fish.  I visited the Rio Grande Gorge and the Earthship Zone.  I made two discoveries at the St Francis of Assisi Church in Rancho de Taos: 1) I found out why Georgia O'Keefe and Ansel Adams found it such an appealing subject; and 2) I met a marvelous artist and charming man whose work now hangs in my home.
     And on the road I saw Capitol Reef and the Anasazi Cultural Center and the Canyon of the Ancients and rainstorms and hailstorms and a 35-minute sunset and the South Colorado Rockies and the Southeast Utah rock formations -- and was awestruck by all of them.

     I don't think the trip solved any problems, or really answered any questions. But it did provide some time to think, some experiences to treasure, some very real and very personal joy and, yes, a chance to escape.  Was it just running away?  Maybe.  But it was, although he doesn't know it, just what the doctor ordered.

Aztec National Monument



On the Taos Plaza



Ghost Rocks, Utah



Sometimes I Feel Like a Dissected Frog

     Among the manifestations of ALS that I am currently dealing with, perhaps the most irritating is the phenomenon known as fasciculation.  Fasciculations are muscle twitches caused by brief spontaneous contraction of a few muscle fibers (groups of muscle fibers are called fasciculi).  Sometimes fasciculations can be seen as flickering movement under the skin, sometimes they can make a whole limb jump, sometimes they are just felt as a little zinger.
     They are among the telltale symptoms of ALS.
     This doesn't mean, though, that all fasciculations are caused by ALS. "Benign fasciculations," unrelated to any disease, can occur in anyone.  These often show up due to stress, when a muscle is overworked, or because of potassium deficiency.
     In ALS-ers, they happen just because.  They happen any time.  For some, they happen almost all the time.  And they feel downright weird.
      When they first started ( and for me fasciculations did not begin for several month after my first symptoms of hand weakness), I thought I was getting a little electric shock from something.  Static electricity in the blanket? In my robe? From the dog's nose? Then they became more frequent, localized in three or four spots on my arm. And then they spread, so that now I am feeling them in both arms, my back and my legs, occasionally my face.
      My problem with fasciculations is when they occur -- or at least when I notice them.  They make their presence most known when I am relaxed, when I am reading or watching TV or engaged in quiet conversation -- when, in other words, my other symptoms are least obtrusive; when, for at least a few minutes, I can almost forget I have ALS.
     That's when the fasciculations kick in with a vengeance, when I twitch like a Biology 101 frog zapped with electrodes.  They remind me: yes, the disease is still here. They depress me: they take away the escape I hope to find in peaceful moments.  They don't hurt, they don't interfere with whatever I am doing.  They are just there.
      Every day. 
    

Involuntary contractions and twitchings of groups of muscle fibers. Groups of muscle fibers are called fasciculi. The contractions are relatively coarse rather than fine and are often visible. Some causes of fasciculations includes cervical spondylosis, multiple sclerosis, poliomyelitis fatigue and dehydration. Read more at http://www.wrongdiagnosis.com/f/fasciculations/intro.htm?ktrack=kcplink

Involuntary contractions and twitchings of groups of muscle fibers. Groups of muscle fibers are called fasciculi. The contractions are relatively coarse rather than fine and are often visible. Some causes of fasciculations includes cervical spondylosis, multiple sclerosis, poliomyelitis fatigue and dehydration. Read more at http://www.wrongdiagnosis.com/f/fasciculations/intro.htm?ktrack=kcplink

My Story, My Way

     I was resoundingly scolded recently for my approach to this blog.  This should be, said the critic, like a journal or a diary, chronicling my physical challenges, my feelings and emotions, on a daily basis.  It should not, continued said critic, be a series of stories saved up and written as if they were journalistic assignments.
     Fooey, says I.  It is my blog and I will approach it in my own way.
     That is the way I am approaching my ALS, too.  My way.  It took me, for instance, a long time to call family members and tell them: the timing had to be right, and I had to have the diagnosis well enough absorbed before I could discuss it with others -- even (or especially?) those I am closest to.    Another for-instance:  the day after my  diagnosis was confirmed, instead of curling up in misery (which part of me wanted to do), I threw clothes into a suitcase, threw the suitcase into my Miata and headed on a road trip to Taos.  My response. My way.
      The disease is going to progress in its own way, my responses and reactions along with it.  And as long as I do no harm, I can see no way my reactions or responses can be "wrong."  They may be odd, or different.  They will be... mine.
     Some days I am upbeat and optimistic, and except for the tangible physical limitations I can sometimes almost forget I have ALS.  Sometimes.  Almost.  Some days (or hours or minutes), I find myself plunged into a deep despair.  I cry.  I throw things.  I rage at the unfairness of it all.  Or I write it out.  Or I paint it out.  Or I just hug the dogs.
     And some days, I have absolutely nothing to say.

Down Goes Frazier! Down Goes Frazier!

      I took my first fall last week.
      I don't know if it was a direct result of my disease or just plain ol' clumsiness, but I do know that there are undoubtedly other falls to come. I know, too, that my difficulty in getting up was directly linked to ALS -- and it wasn't pretty.
      It was late at night, and I had gone out onto the front porch for a moment.  When coming back in, the darned doorsill jumped up and grabbed my slipper -- and down I went like a ton of bricks.  It was a thoroughly graceless three-point landing: left knee, left shoulder and face.  The dogs went off like Timmy in the well,  and there I was, butt in the air, down on the tiles, feet still out the door, completely unable to move.
       It was not a sensation of paralysis -- I knew all my parts were there and working.  It was as if I forgot how they worked.  Which way do my knees bend? How do I get my arm our from under me?  I was totally disoriented  and, for several too-long minutes, not connected to my body. 
      Finally, I was able to roll onto my side, get my legs under me and, eventually, get up.  It took a long time.  It seemed longer.  Seemed longer still to Scott, roused from sleep, his offers of help refused.
      I had to do it myself.  I couldn't accept help, as much as I wanted to.  I needed to figure out for myself how to extricate myself from a difficult (at best) situation, when one arm -- the one that was free, of course, and not folded uselessly under my body -- does not work, even at the best of times.
     Because, like I said, there are undoubtedly more falls to come.  My diagnostic testing showed that ALS had not yet effected my legs or feet; that, sooner or later, is sure to change.  And as it changes, I may trip more easily, be less steady, and -- eventually, probably -- be unable to walk at all.
      For now, though, I will consider this fall a fluke and, looking for that silver lining, good practice  Plus, I may have gone down, I may have looked like a fool slithering around trying to get up... but I didn't spill a drop out of the glass of milk I was carying.
      *     *     *
     One really good, super-duper, A-plus thing that happened on The Day of the Fall was that I got a hug.  By mail.  From a good friend and former co-worker.  Yes, a real mail hug: "1, Press card on face. 2, Apply pressure on left and right cheeks.  3, Think about how special you are to so many people."
      Thank you, Joan. You are very special!  That card and your kind note meant more than I can say.