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