Been There, Done That, Proudly Wear the T-shirt

Something surprising happened on my recent trip to Minnesota: I joined an ALS walk!

This was supposed to be purely a be-with-the-family vacation, a bucket list visit with the kids and grandkids – and it was, wonderfully so. But, thanks to a hot tip, it also included an opportunity to enjoy a beautiful day lakeside with the family while supporting the organization nearest and dearest to my heart, the ALS Association.

Granted, this wasn't the "nearest" chapter, home-town speaking nor the "nearest" event, ditto. That, the Golden West ALSA bike ride in Napa, was taking place without me there to cheer on the riders. Bummer. So when I heard that the Minneapolis ALS walk was to happen during my visit, I jumped at the chance to join in – well, as much as I can jump, anyway, and as much as I can join.

We (three generations in two cars, along with diaper bag, tote bag, camera bag, jackets, snacks, and a wheelchair for me, which ended up toting the aforementioned bags, jackets, snacks, etc.) arrived at Lake Harriet, a beautiful municipal Park and a favorite for joggers, cyclists, and dog walkers, about an hour before the walk was to begin. And the place was packed! There were pavilions set up by walking teams, live music in the band shell, tents for registration, donations, T-shirts and refreshments, and hundreds and hundreds and hundreds of walkers. This was a really big event. When the signal was given to start the walk, it took nearly a half hour for everyone to pass through the balloon arch.

There were teams walking in honor of friends with ALS, past and present, "pALS" in wheelchairs or on the hoof, old folks, little kids, school sports teams, babies in strollers, and dogs, dogs, dogs. (I think it must have been a rule that only purebreds were allowed: I have never seen so many gorgeous dogs of so many breeds in one place outside a dog show. And all were "Minnesota nice.")

Grandma's support group

And there was me. Not all the way around the lake, mind you – even with my leg brace, I'm a bit too weak and wobbly for that. Not for me the full 3 mile route: more like 300 yards. But I was there, in full support, and so was my family, rallying around their gimpy grandma and the organization that helps her.

(Although I think the kids were more interested in the lake minnows, the balloons, the free string cheese, and all those dogs…)

The walk was a success on so many levels. There was great participation. There were lots of supporters to cheer on the walkers. Even the weather cooperated with beautiful autumn sunshine. And I actually got to be part of an ALS event.

Oh, and by the way, the walk raised $300,000. Ba-da-bing!

PS – Thanks for the tip, Nancy.

Saved by the Brush

            In the midst of my gloom-and-doom, deep blue cloudy depression, one lovely surprise shines through like a bright yellow chunk of sunshine. I can still paint!

            It had been months since I had tried to even lift up a brush. With the ever-increasing weakness in my hands and arms, I was truly afraid to try.  What if I couldn't do it? What if I tried and failed? What if I discovered that one of the abilities that most defines me had been stolen by ALS?

            Well, I could, and I did and didn't, and it hadn't. I am still, mentally and physically, a painter

            Ever since my ALS diagnosis, my painting style and technique have progressively changed, and this new change is perhaps the greatest. I'm still doing semi--abstracted, quasi-Fauvist self-portraits, still using bright colors. But now my brushstrokes are broader, brushes are bigger, colors are blended directly on the canvas, and technical subtlety has gone right out the window. The paintings are still recognizably mine, and they are still a sharp poke in the eye of ALS.

            I now rely on my studio aide – also known as my husband – to position my canvas on the easel (at a much lower height since I can't raise my arms) and lay out my paints (I can't unscrew a cap or squeeze a tube) and wash my brushes (can't do that either). But I figure if atelier assistance is good enough for the Old Masters, it's good enough for me.

            I do have trouble with a lot of other aspects of painting, although by and large I have figured out work-arounds and alternatives. It's hard for me to grip the brushes, so I take hold with my left hand while gripping the brush between my right forearm and thigh, making a decided mess on my pants. It is difficult for me to control the brush strokes, so I experimented until I found that backhand is best – extremely awkward, but best. I am making a lot more of what could be called mistakes, but I don't call them that: instead, they are new interpretations of shape and form. Or some such…

            I know that before too terribly long my hand and arm weakness will preclude even this adapted style of painting and I will have to find some sort of new technique. Maybe it will be the "My Left Foot" approach. Maybe I'll lay the canvas down flat and finger paint. Maybe I'll be a new incarnation of Helen Frankenthaler, pouring on the paint and letting it make its own decisions. Or perhaps I'll get wired up to one of those high-tech visual communication devices that let you draw using just eye movements (amazing but true!).

            And I also know that someday I will not be creating art at all, and a part of me, and important part of me, will be gone.

            But until then I'll keep painting as much as I can, changing – as I change other things in my life – to meet the challenges of ALS. Painting is a release and a therapy and the visual declaration that, no matter what, I am still me. It saves me in more ways than I can say.

Losing the Pieces

I was asked once to describe ALS, and the best I could come up with was this: a continuing series of losses.

You lose strength. You lose dexterity. You lose capability. You lose independence. You lose privacy. You lose, one at a time, little pieces of yourself.

Most of these losses happen gradually, relatively slowly, letting you make changes and adjustments and retain function. You use aids, like fat-handled silverware and zipper pulls and Velcro shoes. You change how you do things: a simpler hairstyle, simpler clothing, painting in big broad strokes –with your left hand.  You need a little more help than normal, and you gladly accept it. You carry on.

Until you can't. All of a sudden, it seems, the aids don't work, the changes are ineffective, and "a little more help" becomes a lot of help – all the time.  All of a sudden, it seems, the hands that were stiff and awkward but, with new tools and processes, functional… are useless. All of a sudden, it seems, the legs that were weak and wobbly but, with orthotics, functional… are useless. All of a sudden, it seems, the voice that was becoming quieter and weaker but was still intelligible… is gone.

And more, and more, and more.

The one good thing – and were really reaching for a silver lining here – is that these "all-of-a-suddens"  don't happen all at once, all over your body. Going away one part at a time is dreadful enough.

As I approach the one-year anniversary of my ALS diagnosis, I am dealing with both graduals and "suddens."  My symptoms first appeared in my right hand, then spread up my right arm. At first I lost fine motor skills, will then gross skills, then the arm was, for all intents and purposes, gone. But I still had my left hand – until it started weakening and stiffening, along with the arm, until now they too have nearly lost functionality.

So the things that I could do while on vacation earlier this summer, just a couple of months ago, I can't do at all: no walking all around town or all through the park; no feeding myself; no dressing myself; no pulling up my own blankets. One day I could put on my own pants, then – hey presto! – I couldn't. One day I had enough strength to get an apple out of the refrigerator, then – poof! – I didn't.  One day my hands and arms were mine, then… they weren't.

Now I face gradual losses in my legs. My right leg wants to buckle and collapse, my right foot wants to drag and threatens to trip me. With a brace-like orthotic, my foot is more stable, but overall strength is disappearing. And on top of that, my left leg has now decided to flag.

How long will they still work? How long can I still walk? When will gradual again change to sudden? I don't know.

And what part of me will be next to go? Don't know that either. I just know that something will.

Because ALS is a continuing series of losses.

And how damned depressing is that?

Telling Mom

I finally told Mother – who obviously understands a lot more than I gave her credit for.

She cried. I cried. My husband cried.

So now she knows. And I feel like shit.