On a Whim…

To some ‘on a whim’ translates to ‘let’s do it’ and it happens in the snap of the finger. To us it means, oh maybe, an hour or more to prepare, get the van loaded with everything. Everything is the painting gear – easel, tubes of paint, rags, tools – Tom and the wheelchair, Maddie in her vest, some snacks, and my photography gear.

On a whim I offered Tom the opportunity to plein air at the beach. You see, if I don’t he can’t go. He cannot drive anymore, and hasn’t for quite some time. It was a perfect day for it. Overcast, chilly though not freezing, and still off season, so not too crowded, and he had been in too long because of my work schedule.

ALS and ‘on a whim’ are opposites. I forget these things sometimes and that’s okay, it’s even good. It means, to me at least, that though Tom has ALS, we don’t let it define our lives. We work around the problems it presents.

I thought I would kick back and relax while Tom painted but I couldn’t help myself. I had to document the few hours we were there, after all, isn’t that what cameras are for?

With assistance he can still get to the sand. The assistance comes in chunks of effort. We do it in stages. He transports things with his wheelchair and I carry bunches of stuff that we can’t load on him and the chair. There are hooks on the back of it that help me so much, it’s crazy how much I love them! Who would have thought hooks could make someone happy? All the while we are mindful of Maddie being in a safe place with us, secure and protected from dogs that are off leash. Back and forth from the van to the beach and I’ve got him out on the sand. Then we reverse it when we are done.

This ‘on a whim’ took the better part of five hours from beginning to end.

This is what I get out of this series of photographs: there is more wasting than ever in his hands, his dominant right hand is weaker than it was the last time I took photos of him painting, his left hand is barely useful but he gets everything he can out of it. Tom’s resilience is incredible and enduring. He doesn’t give in, or give up, easily.

To the degree that anyone can fight this formidable enemy clearly he does. Though he can’t stop progression, he can control whether or not he allows it to infiltrate his heart and soul. Day after day, hour after hour, minute by minute, any time ALS tries to lay it’s negative shit down inside his brain, he shoots it down with a 50 caliber thought bullet.

He spends time organizing his thoughts before he gets started

Not so easy to squeeze the paint out anymore

Or open the tubes

Just like that he is transported into his other world of painting

His downrange look at his inspiration for the canvas

This look though…little did I know he wanted to know why I didn’t remember to bring his palette knives…he had to suffer with brushes.

So much concentration

Working with what he’s got

These are the ‘notes’ he takes on canvas. He will finish this in his studio tomorrow.

#ALS #Every90Minutes #VeteranswithALS #Onceamarinealwaysamarine