I'm Back.... With New Tools

I could say I've been too busy to write lately, but that would be a big, fat lie. Mostly, I've been just too blah. I've been lazying around like a slug, thinking a lot, accomplishing little: sad some days, happy on others; planning for a future that may or may not happen, worrying about a future that almost certainly will.
     So I am hereby officially kicking myself in the butt and launching a new take-good-care-of-myself regimen (part of which will certainly include lazying around, but in a more positive vein).  And taking care of myself involves using, as Mr. Natural once said, the right tool  for the job.  Here's part of my list of new tools -- feel free to steal ideas:
     1. Get a voice-recognition software program.  One reason (excuse?) why I've not been blogging recently is that it's just so darned hard to type.  So I've been checking out websites for Dragon NaturallySpeaking and Windows Speech Recognition.  Dragon appears to be winning.  I'll keep you posted.
     2.  Update my bathroom.  I'm still independent, able to shower and take care of myself pretty well, but some tasks are becoming more difficult.  New tools to the rescue!
     Most of my ALS symptoms are centered in my hands, arms and shoulders, and it has become very difficult to wash my back, even with a brush.  So here's my new trick: two stick-on hooks, one pointing up and one down, with a loofah or net back scrubber stretched in between at back height -- Rub back and forth like an ol' bear against a tree. (Does a bear loofah in the woods...?)
     Since getting dry is as important a part of showering as getting clean, I'll invest in some microfiber towels.  They are super-absorbent and super-fast, and new styles no longer look like car-drying cloths!
     3. Find the sock-putter-onner.  Socks are the most demanding part of getting dressed (besides bras, but that's another, non-bloggable story), and I know my husband's sock tool, remnant of an old back surgery, is out in the garage somewhere.  "Somewhere" being the operative word.
     4. Use foam build-ups for my silverware.  I've been reluctant to add those dorky-looking foam tubes to my utensils, but I now realize that nothing would look much dorkier than the way I'm eating now.  Soon: bendable spoon and fork.
     5. Buy paint brushes with fatter handles.  Painting has been such good therapy for me, besides being fun.  Since my right hand is pretty well out of commission, I am painting left-handed --very clumsy.  Big handles mean better grip, means more control, means (maybe?) better paintings.
     6.  Buy an electric lift recliner, perfect for the above-mentioned lazying around.  Oh, I can still get up out of my chair now, but it's a real challenge, what with my fubar-ed hand and arm, to move the recliner lever.  Besides, my current chair is showing signs (and making sounds) of wearing out, so let's plan for the future, replacement-wise.
     7.  Buy sensible shoes.  Oh, this breaks my heart!  I love my girlie-shoes: high heels, pointy toes, ankle-wrap sandals, ballet flats.... But I'm starting to get wobbly, so it's time for Clark's or Aetrex or Softwalk. Harrumph.

Here's to 2011 -- I Think...

     The old year is about ready for the trash pile, along with Christmas dinner scraps, tattered gift wrap and empty boxes.  Not, I might say, a moment too soon.
     2010, to put it mildly, sucked.  Big time.  I lost my job, lost my lovely mother-in-law, lost much of the use of my hands, and gained an ALS diagnosis.  Delightful. 

Self-portrait with Support Team

     Some things just cannot be gotten around,  but they can, somehow, be dealt with.  My joblessness is not half bad, thanks in part to my company's "tin parachute"  (far from gold, but a parachute nonetheless... and the least those #$%&^s can do...).  I have re-discovered painting and writing, reverting to one-finger hunt-and-peck and experimenting with wobbly left-handedness.  I have reconnected with dear friends, finally having lost the burden of constant busy-ness.  I have a new and lovely relationship with my husband:  we have always had each other's back, always offered each other true caring, but now it is colored by time's finite limits and brightened by shared adversity. 
     I have tried to turn the finite and the adverse into pluses wherever I can: varying degrees of success, but always trying.
     So that's how I've been saying good-bye to 2010, sending the sucker out with a flourish and a fanfare.  I did up Christmas in a big way.  All the decorations, all the tchotchkes, all the gifts for kids & grands.  I baked cookies.  I made candy.  I had guests over for a traditional roast beef dinner (with plum pudding to boot).  I created a new painting for my husband and started another for myself.  I've made lunch plans with friends, Big City adventure plans with other friends.  I am doing as much as I can while I can. 
     I don't know how long that will last.
     I don't know what 2011 will bring, but I have hope.  Practicality, too, and planning, and awareness, because I know full well what "progressive disease" means.  So that whatever comes, I am sure it will not arrive with the devastating surprise and shock of 2010's events.  At least, not as much.
     I think....

     Happy New Year to all.  May 2011 treat you with kindness.

Mirror, Mirror On the Wall...

      Well, it took me long enough, but I just noticed something about my recent paintings: they're backwards.
      In the piece titled "Self-portrait With Hands," my right hand is normal, straight-fingered and brightly colored; my left hand is ALS'd, curled and clawed and dark. A good picture -- only it's wrong. My left hand is really the good one, and my right hand is a mess.
      I work with a mirror.  So I paint my reflection, familiar and "normal" to me, reversed and a bit skewed to others.
      All of which is not important in itself, but it made me think of other mirrors, other skewed perceptions.
      I realize that I have been looking at myself, all too often, through the mirror of my disease.  Every odd thing that happens, every "off" feeling, I have labeled a reflection of ALS.  And, as the old song says, it ain't necessarily so.
     A very reassuring set of meetings with my care team at Forbes Norris in San Francisco (and what a team -- I can't say enough good things about every single person there) has given me a new viewpoint and a new perspective.  If I trip, it is not necessarily because of new ALS symptoms: maybe I'm just not being careful.  If my legs get tight and lose flexibility, it's not necessarily because my ALS is worsening: maybe I just need more exercise.  If I am tired, it's not necessarily because of ALS: maybe I'm (hey! what an idea!) just tired. 
     Of course I do have to be aware of potential new symptoms. I cannot deny the possibility that changes are, indeed, due to ALS.  But I can't give the disease more credit than it warrants.  I can't let my life's mirror reflect only ALS.  My life is so much more than that.  I am so much more than that.
      Time to get out the mental Windex.  Let that mirror shine.

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