Fauvist by Default

      In recent weeks, my left hand has become noticeably weaker. This has changed the way I perform a lot of tasks: eating, dressing, and, most notably, painting.

      My latest attempt, a "bucket list" landscape of Orcas Island, is much rougher and more primitive than previous paintings. The brushstrokes in open areas are wavery and swirly, and details are (at best) sketchy. The figures are particularly rudimentary, similar to the partially-filled-out stick figures of a third-grader – although that's pretty much a dis on third-graders.

     Perhaps I was just extra tired working on this particular painting, although I don't recall being so – and I did work on it over three separate days. Perhaps my newly acquired weakness has, indeed, given me a different "style." I'm going to try a couple more paintings, this time portraits rather than landscapes, before I accept this as a permanent change.

      But if it's true that this is now me, painting-wise, maybe I'll take the advice of my friend Debra. Remember Gauguin, she said, who threw over a more realistic approach for intentional primitivism, going for bright colors, flatter perspectives, broad strokes.

     He also moved to Tahiti.

     Not a bad idea….

Talking to my computer

     It's here! It's here! Really: right here, right now. I ordered a voice recognition software program for my computer, it arrived, it's operational, and I'm using it right this very minute.
     Instead of typing on my computer keyboard, I'm talking into a headset microphone. As I do, the words appear on the screen – more or less as I have said them. "More or less" is the operative phrase here: the system is still getting used to my voice, and word mix-up is still rampant.
    (I had planned to publish this post, warts and all, exactly as it showed up on the screen without any corrections. However, there are already so many errors that I can't figure out with the first two paragraphs really say – and I wrote 'em…. So overriding corrections are definitely required.)
     The good news though is that this system actually learns. It adds vocabulary, adjusts to my pronunciation and inflection, and becomes more accurate with every use.
    The question is, will I actually learn?
     First, I have to learn to stop random vocalizations. Um, er, phooey, and oh crap, even if spoken sotto voce, have the nasty habit of showing up on screen, not only demonstrating bad habits and "speaker's block" but playing havoc with what I'm really trying to say.  Second, I have to learn all the verbal commands when to say them, and how. Sometimes I say "delete," and the word delete appears; sometimes I say "delete," and any random word will disappear. Sometimes I can't remember the commands at all, so I and up working way too much with the mouse and the keyboard.
     But I'm already getting better, and my new Dragon is too. Already, even with all my stopping and going and all my needed corrections, this is much easier and much faster than one-handed hunt and peck. Plus, it validates my tendency to talk aloud to inanimate objects: I can holler at my computer and get away with it.

Life on the Roller Coaster



Self-portrait: Elation

      It's been hard -- pretty much impossible, as proven by the dearth of postings -- for me to write anything coherent recently.  I start, in despair, a piece on my trials, tribulations and the all-encompassing depth of my dejection -- only to be struck by a wayward ray of emotional sunshine and a mood shift that swings me from hopeless to hopeful.
     I then launch a post filled with optimism and Peale-ish positive thinking, but gag on the saccharine syrup of a too-rosy outlook and unrealistic cheer.
     It was pretty appropriate, I guess, that a recent outing was to Santa Cruz, home of the famous seaside amusement park. I am a human amusement park these days, going up and down, up and down like a carousel -- or UP and DOWN, UP and DOWN like a roller coaster.
     And I sometimes find myself stuck in the middle, neither up nor down but in some sort of emotional limbo. I don't paint, I don't write, but instead just spend my time spending time: re-reading books that didn't interest me that much the first time around, playing solitaire on the computer, or escaping into multiple and extended naps.

Self-portrait: Despond

     Which are probably pretty good signs of depression, I guess, and probably reasons to check my meds. But I'm bothered more by the upping and downing, the ol' roller coaster.
    And I guess I have reason to be up and down. The good and the bad are happening back-to-back. It's all just part of this crazy disease.
     My most recent visit to the Forbes Norris clinic gave me plenty of good news, plenty of reason to be up. My doctor said my symptoms are progressing more slowly than the average, and that I have plenty of reason to be optimistic about an extended life span. The down part, hiding within the good news, lies in this question: are we talking about just an extended life, or about extended living? Not, as we know, necessarily the same thing.
    More good news at the clinic: my legs are not severely affected as I feared, with the right just slightly weaker and the left pretty darned normal. The stumbling and falling I've been experiencing can probably be alleviated simply by taking more care – and by wearing an AFO brace on my right leg. But the bad news is that it's a brace: another step down the old slippery slope of ALS.

     Good news on the home front is that I'm planning to fulfill several goals from my bucket list. Scott and I are going to the San Juan Islands in June and to see the Minnesota grandkids in August, my daughter and I are going to Maine in July, and my super-duper sister-in-law and her husband (also pretty darned super) are coming to visit in May. I have volunteered my services to the ALSA, I finally started the cover letter to submit my long-waiting tomato book for publication, and I am researching possibilities for art show featuring my ALS paintings.

     But just when I'm feeling so good about all these plans and proposals, down goes the roller coaster in a rush of worry. Will I be able to travel? Will I be a burden to my daughter instead of a companion? Will anything come of my hopes for my art and my book? Are the other things on my bucket list just pipe dreams?

     I don't know. And that's probably where this up-vs-down-vs-trapped-in-the-middle series of feelings really comes from: I just don't know. That is, of course, the hardest thing about ALS, the not knowing. Oh, you know where you're going to end up. You just don't know how – or when – you're going to get there.

    I just want to get there on my own terms. And not by riding a roller coaster.

Silver and Gold

     In my last posting, I said I had been doing little but "lazying around like a slug." Not completely true.  While I certainly have been un-ambitious on lots of fronts, I have been very diligent in maintaining something of tremendous importance: friendships.
     I spent a couple of days in the City with a dear and long-time friend (and I do mean "long" -- she was my attendant at my nearly-30-years-ago wedding) from New Hampshire.  Although we hadn't seen each other in years, we didn't skip a beat, just plunged back into our friendship as if not a day had passed. Calls, letters and e-mails have flown back and forth since, constantly refreshing and reinforcing our closeness.


Self-portrait with Deb and Monarchs

      I had lunch with a long-lost friend and co-worker, found through Facebook. We caught up on work friends, spouses (new, ex and same-ol'), plans, adventures, and, above all, we re-discovered the links that had made us friends in the first place.  Many more lunches are in the works.
     I hijacked my best friend for a road trip to Monterey Bay where we crossed something off my bucket list by seeing the over-wintering monarch butterflies. Even though we were too late in the season for the masses of monarchs I'd been hoping for,  it was still pretty impressive -- and a wonderful girls' day out (plus da kine manapua and spam musubi: ono!).
     I exchange phone calls with friends far away -- pals from our Hawaii days, now in New Mexico; my husband's sister and my heart's friend in western New York -- and near at hand -- former co-workers with whom I have a special, far-beyond-work bond; chance acquaintances who've become dear companions. We plan future get-togethers, we reminisce about the past, we meet for drinks, they come over for dinner, we go off on adventures, we just talk.  They give me support and understanding and hope.
     In other words, we are friends.
     Many, many years ago when I was a youngster at Girl Scout camp, we used to sing a song around the campfire, a lovely little three part round that stays on my mind and in my heart: "Make new friends," it went, "But keep the old./ One is silver and the other gold."
         

Fun and Games with Social Security

     Well, today I had my official appointment with Social Security to sign up for disability and Medicare.  I have to admit, I did not have high hopes.
     My SS experience did not start out well: misinformation, misunderstanding and downright rudeness from reps at my local office, both in person and on the phone.  No, said one during my preliminary in-person interview, you do not get Medicare immediately, ALS or no. Yes, said another, to whom I spoke on the phone trying to rectify First Guy's error, you do get Medicare right away, but only after your disability case has been "adjudicated," which can often take up two years.  Yes, he emphasized, two years, even for ALS: "I've seen that happen often, ma'am."   No, he then argued, most emphatically, I did not ask the question I thought I asked, but the one he wanted to answer. Two years. Absolutely.
    I hung up hyperventilating.
    So, even though I was armed with all requested documents and full medical reports, I was fairly pessimistic about today's visit.  Luckily, I was quickly proven wrong.
    I met with Amy, a cordial, professional and very helpful young woman who offered nothing but encouragement.  She looked through my on-line claim, reviewed the other paperwork I had brought, told me about options, praised me for the completeness and thoroughness of my application and documentation, told me Medicare would automatically go into effect as soon as disability was approved, and assured me my case would be reviewed as promptly as possible.
    She was even very apologetic when she explained the time frame for review: I may not get a notification for as much as 120 days.
    Some two years.
    A couple of tips for SS staff everywhere: 1) try to be like Amy, and 2) never, never tell someone with ALS they have to wait two years for your help. They may not have that long to live, and your insistence amounts to nothing less than cruelty.
  

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.