Mary Hahn Ward Creative Works bio picture

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

These Shoes

Countless steps
Untold stories
The things they have stepped on, over, and around
Though they look empty
They are overflowing with life, with memories
Eight thousand three hundred and ninety five days
Owned by the same feet

 

*Summer of 2018

Hurricane Florence is the end of the garden as I know it. A huge tree fell on the fence, broke it, and destroyed the garden. We were lucky. Our house didn’t flood, a tree didn’t crash into the house, windows didn’t break, just the fence and garden. I would share a photo of it here but our Internet is down so it will have to wait. Hot spotting a laptop with a phone is a poor excuse for Internet. Photographs will not load, too much data in them.

The garden cannot be allowed to whither away. I won’t have it. The glowing garden has always been a life metaphor for this ALS life we have going on here. It has to be remade and remade even better than before.

I’m certain I cannot do this by myself this time around. Garden party anyone?

August 2014

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What a mess the backyard has been. No garden, no color, just grass, weeds and more grass and more weeds.

Getting a garden started is a ton of work. I am not known to have a green thumb or enjoy hard, physical labor. Tom, on the other hand, my spouse, who always knew how to work hard and would make a hundred gardens for me if that was what I wanted, is not physically capable of this anymore. He has created gardens everywhere we have lived. They have always been beautiful. He has said this a thousand times about a garden: it should give color or fragrance, if doesn’t, it isn’t worth the effort.

When we lived in New York our house had many windows. Tom planted gardens strategically so we could see them from just about anywhere in the house. I wanted to do the same for him, for us, in our new home.

When we moved into our new home, it was new, like in brand new. It had nothing but grass growing in the mostly sandy soil. We built a home not too far from the beach. When Tom was diagnosed with ALS, Amyotrophic Lateral Sclerosis, we decided to live the life we always dreamed of having. We both grew up on Long Island, and have quite an affinity for the beach. Moving to the coast of North Carolina was one of the easiest decisions we ever made.

As one can imagine, ALS brings on all kinds of limitations, not the least of which is being home more, rather than less, some days. My motivation to taking on this crazy idea of gardening was so when we can’t get out we have an abundant garden to enjoy. We both love photography and anticipate photographing the arrival of butterflies, lizards, frogs, bees, etc. that will visit.

It never occurred to me how much of the work I would have to do myself when beginning this project but once into it I had to finish it. Tom watches, I work. This didn’t feel so great, at first, until we saw the humor in the mess I make out of everything and how he was going to have to tolerate that.

He didn’t tell me about the weeds. They are like a nasty enemy that refuse to be defeated. He did such a great job keeping up with our gardens I had no idea weeds were even a thing. They are beastly, and unkind, and ugly. I have had to attack them over and over. I asked Tom for the quick solution and he said there isn’t any, it’s laborious, and makes us love the flowers even more because we have to work for the beauty. Hard to convince me of this when the weeds are choking the thorny roses. I have produced more sweat, and tears, over this project than I thought humanly possible. Has it been worth it? Only time will tell.

 

 

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Summer of 2017

Three years of growth in our garden. The work it took to cut the garden, plant the plants, put down the mulch, master the weeds, and do it by myself, has been worth it. It gives back all the time.

It gives back in the spring as the plants begin to show life.

It gives back in the summer when it is robust with color.

It gives back  when the bees, butterflies, and birds visit it.

It gives back when the dogs roam through it.

It gives back when sit in it with a glass of wine in the late afternoon, just the two of us…and the dogs.

It gives back in the fall with last minute bursts of blooms that are fooled by warm weather.

It gives back, with hope, in the winter.

Hope that we will have another season together.

Meet Pinky – she is a mini dachshund full of vim and vigor. Her favorite part of the garden is chasing after butterflies. Truth be told she has had her share of butterfly catches. It hasn’t ended well for them.

The bees were in abundance this year.

A pair of cardinals were frequent visitors.

A butterfly that escaped capture by Pinky.

Meet Mimi – a mini dachshund – a certified bug finder, mole detector, and Gecko stalker. Did you know a Gecko losses its green color when they are no longer alive? Mimi taught us this with her ruthless hunting skills.

Meet Maddie – she is Tom’s service dog – people often ask if she ever has any fun. Yes, yes she does, more than one can imagine.

Wine bench.

 

A favorite photo – July 2017

 

 

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Sitting up while snoozing on and off – St Augustine, FL – June, 2017

Typically, early morning walks consist of traversing the neighborhood. I take my phone to have a camera with me at all times. Sometimes, I take my Nikon with a 55mm-300mm lens. It has a strap that easily allows the camera to hang around my neck without irritation while walking. The longer lens gives me the latitude to be further away from the subject matter.

Neighborhood walks often bring me face to face with turtles, deer, birds, and sunrises. Recently a hawk was sitting on the branch of a tree at the end of the sidewalk I was on. I took a photo with my phone but it’s tough to actually see it is a hawk. It was pretty cool to be in fairly close vicinity to a hawk, just the hawk, and me, at 6:00 a.m. I almost never see another human on neighborhood walks.

When we travel to cities going for early morning walks is a must. Early morning walks get the day started really well. They are energizing and often interesting. I see photographs in just about any environment I am in, especially in the early morning light.

Obviously, cities do not offer the same kind of wildlife my neighborhood offers. The city offerings are quite different than what I typically come across: interesting architecture and people from all walks of life. I take many photos on these walks. The most poignant ones are those of people sleeping on benches. They touch my heart in ways I cannot express.

The bench sleepers have faces but I have not seen them close up. The bench sleepers have names but I do not know them. They were not always bench sleepers. I will never know how they transitioned from sleeping in a bed to sleeping on a bench. Maybe some of them do not know how that happened to them. Maybe some remember it acutely but wish they didn’t.

City walks in the early morning, just like the neighborhood walks, I take my phone for it’s camera capability and my Nikon. The bench sleepers get my attention, time and again, because my heart aches for them.

The photos below were captured using both the phone camera and the Nikon:

St. Augustine, FL – June 2016

Washington, D.C. – September 2016

River Walk – Wilmington, NC – October 2016

Pennsylvania Ave, Washington, D.C. – May 2017

Pennsylvania Ave, Washington, D.C. – May 2017

Outside of a Marina – St. Augustine, FL – June 2017

I wish for a day when benches in cities no longer hold sleepers because all the bench sleepers have beds with roofs over their heads.

River Walk, Wilmington, NC
Cape Fear River

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